Journal History

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December 24, 2007 11:00 PM

MERRY MERRY CHRISTMAS!!

The kids are all tucked in bed, yes all 3:)

Katia had no problem scooting off to bed tonight...Every night should be Christmas Christmas Eve. I think a lot of parents would agree:)

I think one of the biggest excitements for tomorrow is that Fozzy turns one! He gets a piece of turkey and some chew toys. Lately he has found that he likes chewing on electrical cords. Luckily none have been plugged in but he has digested some of the wires and that isn't good. He does have chew toys but those wires seem to be calling his name. We got him a muzzle but Katia decided he needs more toys so that is what he is getting for his birthday and Christmas.

Myron works in the morning so we are going to kind of start off slow so he can get home and participate although we will let Katia open up some things but just drag things out plus I will get the girls help me to cook. It is pretty easy to get Katia side tracked.

As far as how is Katia feeling? Well her eyes and hips are her biggest issues at the moment. Her hips are very sore and irritated, basically the skin is pretty ripped up looking and peeling off. It causes her hips to feel like they are burning and aching. The GVHD is about 3 layers deep. I dress her mainly in soft jogging pants or just long t-shirts and panties but most things itch her skin as well no matter how soft it feels to us. Her eyes are still very sore and light sensitive so she keeps them closed a lot even if she is having fun. She has a smile on her face and laughing but her eyes are closed. If I ask her, "Do you eyes hurt?" She just brushes me off and says, "I am alive, don't worry Mommy." Her vision is not good but she seems to be able to get by okay. She is so unaware of the worry and she takes things so day to day. I am glad she sees it that way ands he really doesn't worry. She has some days she just feels rotten and lays around but most days she copes and manages to play and be happy with breaks and rest here and there. She amazes me.

This holiday season, I am just grateful. I can't think of a better way to put it. I am grateful I have one daughter off in college and she is doing well and she was able to get home for Thanksgiving. I am grateful for Tatiana and that she has a good relationship with Katia and does so much for Katia and keeps her happy although I know it isn't always fun playing Katia's little games. I am thankful for Katia's doctors and their attention to every detail and never giving up. I am thankful for my family period because this would be impossible without them. I am thankful for our support team and each of you reading this message whether this is first time you clicked on Katia's page or you come here a LOT! I don't feel it was an accident you dropped by.

I am just very thankful this year. And I think 2008 is going to be GREAT!! I pray things will really turn around with the GVHD issue. I think if something happens that will help Katia, it will in turn help a lot of others facing similar situations. Katia has participated in many trials hoping to find something that works for her and others.

A concerning thing is right now her falling WBC numbers and her overall immune system so we are trying to remove some of her immune suppressing drugs while also not allowing the GVHD a chance to flare up worse. Sounds confusing? It is. But we are praying about it so the right balance is found over the right amount of time.

My hope is that 2008 brings much more positive updates and that the updates for many others can be the same way. There are so many going through some very serious situations that are in desperate need of prayers. If you haven't been by the "Staying In Touch" Message Board it is full of people needing prayer requests and you can also post prayer request or respond to others that have posted.

So, I have written another testament here. Sorry:)

We wish you a very Merry Christmas from our family to yours. Lots of love, The Solomon Family




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December 21, 2007 6:00 PM

After a few attempts at getting a new pictures, Katia's eyes weren't in agreement so I went with the above picture from Thanksgiving with all 3 girls.

The shirt Katia was wearing has a cute story behind it. She picked it so that if she got any food on her shirt, it wouldn't be noticed because of all the flowers. Smart, huh?

I really thought with the up in the steroid dose, her eyes would improve a bit but that hasn't really happened nor has her skin improved but her appetite has gone up again. The increase wasn't that much as she really hadn't gone down that much.

But overall Katia is doing well. Her tummy issues are steadily getting better, less nausea which is good.

Fozzy turns one on Christmas which has Katia very happy.

It is nice having all 3 girls here together.

Lots of love, Tracy





December 19, 2007 5:00 PM

Okay, no picture I know but I am working on it... got a little side tracked today.

Katia did have school with Ms. Michelle today which went very well. Now she doesn't have school till next year... 2008.

Can you believe 2008 is just around the corner?? Wow.

Love, Tracy






December 18, 2007 7:00 AM

WBC 2.61
HGB 13.5
PLT 486
Magnesium up to 1.7

Today, we spent the day getting IVIG so hopefully that will hold Katia over till the New Year:)

Her Magnesium is going up with the Magnesium doses so that is good.

Katia has school tomorrow but I have one thing I plan on definitely doing tomorrow, a new picture on the site! Something Christmasy:) I promise I will try to get something done.

I have all 3 girls home right now so of course, we have to get some pictures taken. Tatiana is in exams this week so she has half days of school going on. Katia is having school from 1:00 to around 2:30 or so depending on how she is feeling.

She just got a haircut and with the up in steroids her skin is clearing up some. Hopefully we can get her GVHD leveled out to a point that will allow us to get her off the Cellcept which is what they believe is keeping her nauseated.

Right now her White Blood Cells aren't recovering either which is probably due to all the immunosuppressing medications she remains on trying to combat against the GVHD. Katia keeps her doctors on their toes walking a thin line, that is for sure.

So, that is where we stand right now. Thank you for stopping by and checking in and we hope each of you are having a nice holiday season so far. Look for some holiday pictures and Katia says she will color a pretty picture for me to get up on the site also. She has been doing some nice artwork lately:)

Lots of love, Tracy






December 18, 2007 8:13 AM

Off to clinic for a day of IVIG (thank you Blood Donors)

Kind of an uplanned trip but I pretty well knew Katia would need some IVIG before Christmas so hopefully this will be it before Christmas.

Some good news is her feet have been okay the last two days.

I am a bit anxious to see where her magnesium levels are today. She wasn't able to get the magnesium taken in pill form no matter if it was crushed or whatever so they called her in the liquid form but the pharmacy had a problem with that. It will be ready today but we have clinic this morning before pharmacy opens so she hasn't had the dose so we will see if she has dropped lower??

Katia is VERY eagerly counting down the days till Christmas. Actually each day she gets us to count down the days. She hasn't figured out the counting down process but she has figured out it doesn't go fast enough yet.

I am really not sure what she is most anxious about yet but I think she just wants the day to get here.

By going back up on steroids, I have noticed her skin looks a bit better already. Her eyes haven't shown much of a difference but I think we are going to see a difference. Usually when we go up on steroids, on the outside of Katia we notice a positive change. We just know on the inside, it isn't good for her bones and the long term effects aren't good. Plus she says they make her "moody" and she says she is really really trying to not be moody.

She gets upset and then she gets upset about getting upset.

Well, I just wanted to update real quick before I go get her up.

Sharayah is in town for the holidays. She came in this past Friday and will be here about 3 weeks so all 3 girls will be here for Christmas:)

Fozzy turns 1 on Christmas but he is still small. He is 7 pounds and that is it for him:) He will always look like a cute little puppy! Katia loves dragging him around and the girls all like putting his little shirts on him. Tell you the truth, he likes his little clothes too.

Love, Tracy





December 15, 2007 5:00 AM

WBC 3.31
HGB 14.6
PLT 428
Creatinine 0.17
Magnesium 1.5
IGG 512
FK506 15.6

I guess I am posting a little late or early but this is from clinic yesterday. I have some extra counts up there and some I don't have the results from yet.

Katia had her Pentamindine treatment yesterday and regular labs. We also discussed what to do about treating her GVHD seeing the endoscopy and colonoscopy came back negative for GVHD in her stomach. At this point we are going to go up on the steroids and go down on the Cellcept. The Cellcept could be causing the nausea. The Rituximab will attack Katia's immune system more and her immune system been suppressed so much. It is her immune system that causes the GVHD but the more we suppress it the more we hold it back from be able to build which could hurt in the long run so we need to try to wean her off of another one of her immune suppressing drugs which is the Cellcept. So by going down on that and up on the Steroids, possibly we can get rid of one before adding another (the Rituximab).

Nothing about treatments for Katia is written in stone and she has never really gone by the book so to say so it takes a lot of patience and seeing how things go. Luckily she has always seem to respond to steroids although the do have their nasty little side effects short term and their long term bad side effects especially to her bones and growth. But, Myron and I both agree with this strategy. Her WBC has been staying low as well as her IGG count continuously drops right back down always needing to be boosted back up with IVIG even though she isn't on chemo and hasn't been for a long time. Her immune system just isn't building and she is nearly 4 years out of transplant coming this February.

Someone asked the other day if Chronic GVHD is something that goes away and can go on and on. It should go away but it really is up to each patient and it depends on the transplant they received and how well their body grafts. So it is an individual basis. I personally would have thought Katia would have been further along by now in comparing her with others that have received the same kind of transplant but then it goes along with the individual recipient also not just the match. So it is really hard to say. We are grateful that Katia has remained leukemia free and we always know things could be much more serious. Katia has come a long way when we look over her journal history or back through pictures and a walk down memory lane is like a walk through a path of miracles.

The plan right now is not to return to clinic until after Christmas unless the IGG level comes back too low that she needs IVIG before then but we really plan to lay low through Christmas so that could even wait I think.

One concern is Katia is having quite a bit of pain attacks in her feet. They just suddenly happen. They have been occuring over the last few weeks. Only when she is sitting. She just burst out crying. Please keep that in your prayers. Nothing makes it better and it only last about 15 minutes and then it goes away. She has bone scans coming up soon.

Sorry the updates have been further and further in between. There has just been so much going on but I will try to be better to keep you up to date.

Love, Tracy (and Ms. Katia)


*******

December 13, 2007 12:46 PM

All results are in and everything appears normal with the endoscopy and colonoscopy.

So, that is good.

We should have clinic tomorrow so maybe things will go back to Plan A to treat the GVHD with the Rituximab and go back to the plan of treating the skin and eyes. I am not sure yet. Maybe the stomach and nausea is a viral thing.

Katia still has the nausea and a few other issues with her stomach but hopefully they will go away on their own. For now, her appetite is increasing some as well as her activity level so if that continues, I would think it is something viral and this time of year, that wouldn't be unusual.

Thank you for your prayers. It did take a long time to get the results back which sometimes is worrisome but it also better than getting results back right away with something that just jumps right out with a positive result with something easily seen and a bad so we are grateful.

Right now, Katia is sitting at the table waiting for Ms. Michelle to get her for her school work. She says to tell everyone hello:)

Love, Tracy







December 7, 2007 7:15 PM

Katia did good today. She is much happier tonight than she was last night, that is for sure.

She didn't get the "Happy Juice" she had hoped for but actually she did okay with what they gave her.

They were able to get the biopsies and samples they needed to send off for the viral tests, fungal tests and biopsies.

We should know more by Monday or Tuesday.

She has pretty well slept since we have been home but she has had a few nuggests which is all she wanted since yesterday so she had her mind set on those.

She is quite nauseated these days but a few things she does okay with. Cheerios is one of those things so of course, I wanted that to be the first thing she put on her belly after the procedures but she refused that. She did at least have Gatorade first and that was it until about 5 hours or so and then she had a nugget.

I think she is going to have a pretty low diet until we figure out what is causing her to feel bad. She isn't really losing too much weight at least so she is eating enough to maintain herself.

Somehow it appears she has some yeast growing in her upper digestive tract which, if that is the case, would be a little confusing since she is on a pretty high dose of antifungal meds and has been since transplant. So, we will see what the different tests show.

Thank you for your prayers.

Love, Tracy







December 6, 2007 7:45 PM

We just finished setting up the Christmas tree. Katia has really been looking forward to that so she is happy and very eager for Christmas.

6:00 AM tomorrow we have her appointment with the SPU for her Endoscopy and Colonoscopy so today has been all clears and will end with an enema (she hasn't been too happy with that) so she has been feeling bad and the drink she has to drink has her really nauseated.

Hopefully after tomorrow she will feel better and can eat something.

I will update once we are home so please pray they are able to get the samples and pictures they need.

Thankyou for your prayers for Katia as well as Dr. Warner's family.

Love, Tracy







December 6, 2007 10:23 AM

Our friend Dr. Harold Warner, passed away this morning around 3AM. Please remember his family and his many friends in your prayers. He had battled bone cancer and is now alongside his Heavenly Father. His services will take place on Monday.

Love, Tracy




December 5, 2007 10:57 AM

Hello.

Small update. Katia will go in on Friday for both an upper and lower endoscopy to hopefully find out what exactly is going on with her belly, GVHD or not and how we can deal with it. She is eager to feel better ASAP.

We spoke to Dr. Warner's wife last night. He is non-responsive at this time. The doctors have given him about 5 days. Myron's dad has been asked to come up to preach at his service. This is all just very sad and sudden. Please continue to pray for his family. We let her know that a lot of people are praying for them and she and her family are very grateful for prayers. Being a pastor and family, they have been the support for so many families over the years, including ours.

Thank you for your prayers. I will update more on both of these situations as I know more.

Love, Tracy





December 4, 2007 1:14

Just a prayer request to ask of you for my pastor that I have mentioned before. We found out last night he was moved to Hospice. I don't really know any details other than the cancer seems to have now gone into his brain.

Please keep Dr. Harold Warner in your prayers. He and his family have always been very dear to our family while I was growing up and to Myron's family even before I even knew Myron.

His family has always kept Katia in their prayers through her battle with cancer and we have kept him and his family in our prayers through his battle with cancer.

It seems his journey is coming to a close here on earth. He has touched far more lives on Earth than anyone could ever imagine.

He has two sons that have been affected by serious disabilities their entire lives but have never been held back from reaching out to others and his wife is just an outstanding person and woman whom I have admired since the day I met her.

Thank you for your prayers.



Dr. Warner and Katia October 2007



Love, Tracy





November 29, 2007 7:00 PM

WBC 3.27
HGB 14.2
PLT 426

Today was clinic as you can see. I am not sure I ever put the counts in from last clinic visit. I am kind of slipping on some things with so much going on lately.

I would like to ask you to please keep the family of Alexia (The Princess Warrior) in your prayers. She passed away after a very courageous battle with Infant ALL.

I am not sure how many people visit this page more or the Message Board more but there are a lot of prayer requests over on the Message Board and I appreciate all that have gotten involved over there in posting/following and just visiting over there as well as those of you who check in on Katia over here.

This past week for Katia, well really the last few weeks have not been so good. She has been having constant belly aches. We have tried regular treatments as well as Zofran (the miracle drug) and Ativan. None of which have worked. Then the concern for me was the GVHD is spreading to her stomach. Well that seems to be the concern with her doctors as well. So, next week she will have an endoscopy to see what is going on. She didn't start the new GVHD treatment because that would have just been for her skin and not for her stomach. So if it is in stomach, that would change the plans.

So, please keep this in your prayers. She is feeling pretty puny. Not all the time but most of the time. She has been up and down through the nights. She is eating but not like her normal self. It could be a LOT LOT worse than it is. Luckily she is on steroids which is keeping this (if it is GVHD) from getting a chance to get out of control.

If it is, the plan would be to go back up on steroids and add in another treatment as well. If we went back up on steroids, she would get a temporary relief for her eyes, skin, stomach and everything which she would like and hopefully give a new treatment a chance to work and stop the GVHD from spreading.

What is the likelihood this is GVHD? Pretty high. Since she has had this for so long and the symptoms she is having. It pretty lines up. Hopefully the Gastro doctors are able to get in and get a good sample. Katia just had to make sure she made it clear she gets the right "Happy Juice" and I just am always concerned we don't delay things. I have kind of been thinking the GVHD was affecting her stomach for the last week, maybe 10 days because nothing was making her feel better and nothing seemed to be making it feel worse. Her stools and urine are all still good.

On Thanksgiving she fell down and skinned her knee pretty bad but it actually skinned up a part of her knee where the GVHD has messed up the skin anyway so the skin pretty much just fell off and just left one little sore. She was more upset than hurt in the long run.

In school, she is finishing up a little box set of books called "Bob Books" Set 1 Beginning Readers. It is a really neat set of books that teaches letter sounds. It had 12 books.

1. Mat
2. Sam
3. Dot
4. Mac
5. Dot and Mit
6. Dot and the Dog
7. Jig and mag
8. Muff and Ruff
9. 10 Cut-Ups
10. Peg and Ted
11. Lad and the Fat Cat
12. The Vet

Katia has really enjoyed reading them and she has done very well with them.

So that about sums up things around here.

As far as me, I keep that up more on the Message Board. The link to that is on the bottom of the page.

I hope each of you had a Happy Thanksgiving.

Lots of love, Tracy


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November 20, 2007 3:30 PM

Just wanted to jump on here and add some new pictures from the Tampa Bay Lightning Game the other night. The picture above is Katia with Nikki Hawkins.

It was taken right before the beginning of the game:)

Hope everyone has a good Thanksgiving:)

Love, Tracy








November 14, 2007 7:08 PM

First I want to wish Sharayah a Happy Belated 19th Birthday:) She spent it quite sick with the flu but she is feeling better now. First birthday away from home... We miss her.

She will be home next weekend for Thanksgiving:)

Katia had clinic yesterday but I don't have labs in front of me so I will update with them tomorrow when I have them in from me. She did good and her counts looked well. She will start the new treatment next week. We have it scheduled to start for 4 weeks in row and if she reacts well then we will go from there. Her skin and eyes have been quite irritated lately so hopefully she does well with it and it becomes a promising treatment.

I got hooked up today with a portable EEG machine (ambulatory EEG) to monitor my brain ativity to see if we can see why I am having so many seizures lately. I will have around the clock monitoring, at home monitoring till later in the afternoon till Friday. Hopefully it gives them a clue. I am quite "eventful" to look at it:) There is a more detailed update on the Message Board. While I was there, it seems I parked where I didn't belong and my car was towed so I don't have my car right now....

Good news is (I like good news) we got a call today from a young lady that had written an essay nominating Katia for an award that Katia was selected to be Honored at this Friay's Tampa Bay Lightning Game as one of Yerrid’s Heroes!!! We will be inside the McDonald’s Box office. From there, they will be escorted behind the scenes to do “Let’s Play Hockey” with Steve from ice level to start off the game! From there, they will be sitting in the “Ice Box” at center ice between the benches. They will also be doing a feature on the website about them. I really don't know much else about all of it. I have never been to a hockey game. I do know Nikki Hawkins is going to be singing the National Anthem which is just icing on the cake! She is such a sweet girl with a beautiful voice!

So, that is about it for now. Thanks for checking in.

I will definitely have some pictures to post. Katia will get a team jersey. She loves jerseys and team shirts from Tampa and other places too.

Lots of love, Tracy:)








November 9, 2007 4:43

Hello:)

So, I figured I would jump on here and put up some new pics and a small (yes small) update.

Tomorrow we have a Bone Marrow Transplant Reunion to go to so maybe I will get some nice pictures tomorrow that I can post. I can't believe Katia is coming up to 4 years post transplant this coming February! Wow!

She has been feeling kind of up and down really. She had a nice long tub bath today with bubbles. That is kind of her new thing. She hasn't wanted to really soak very much due to "bottom issues" but the last few days she is wanting to soak more. Her skin is irritated. She gets upset that the bubbles go away. Her eyes are really giving her problems also. The steroid drops are done now also. It was a cycle and the cycle ended about 2 days ago now. It really didn't make the difference I thought it would but the steroids overall aren't making the difference they used to either.

She doesn't go back to clinic till next week. She was supposed to this week but due to some other things going on, it was postponed.

On a good note, she did her FCATs this week. She thought it was going to be overwhelming but she went through it pretty well. Whether she did well or not? Just the fact she completed them is good actually.

I have added some new pictures but there is one in particular if you click on the picture link of someone Myron ran into at the airport. It was a while back but I hadn't posted it. He runs into quite a lot of people but this one... well, he could have brough her home:)

Katia says to say hello. She is quite eager for Thanksgiving coming up. She is already starting to draw turkey pictures using her hands. I remember how happy the nurses were back in 2003 when Katia finally let them get her handprints (I had never been able to get them!) and she made a big turkey using hand cutouts while I was down in the cafeteria.

Enjoy the pics:)

Love, Tracy




******

November 1, 2007 4:50 PM

Just wanted to jump on and add some pictures from yesterday. There are more in the "view photos" link. She got to do her "Mean Doctor" pictures (although she acted quite sweet!) and I got my sweet princess pictures:)

She had fun but she wore out pretty quickly and ended up soaking in the tub and watching cartoons.

Hopefully everyone had a safe evening.

Love, Tracy and Katia

PS As you can see, Fozzy ended up being the "Patient".





October 30, 2007 11:00 AM

Counts from October 26th

WBC 3.40
HGB 15.2
PLT 383
Creatinine 0.4
FK506 (Prograf) 13.0

So, clinic went well. Katia received IVIG (thanks to all the blood donors) and she received her Pentamindine treatment. It was a long day but it is better to have one long day and get it all out of the way. Her new treatment will begin next time around.

Her skin is looking about the same. We are thankful that the steroids always seems to at least hold her GVHD at a steady pace with few flare ups but we really need to get it under control.

Katia is very very much looking forward to tomorrow (Halloween). She is pretty much buzzing around here today which is nice to hear and see. She has promised to let me take some pretty pictures as long as I let her take some scary pictures (agreed!)

Right now she has school first with Ms. Michelle.

Myron carved two Jack-O-Lanterns with Katia and Tatiana over the weekend. They had quite a lot of fun. I wasn't feeling to well so I stayed on the "sidelines" and watched. They turned out suprisingly well though.

Katia is still set on being a scary doctor. I haven't had much luck on finding a scary mask for her because they seem to be the size for teens and adults (what she is looking for) but I have one last try today to see if I can find one. Other than that, we will have to get creative? We will pull it off though:)

I am not sure what Fozzy is in for but he is getting "dolled up" by Katia and Tatiana too. I am not sure they remember he is a BOY! My idea was to dress him up like a cat? Is that boy enough? Maybe not.

I am kind of more a Thanksgiving and Christmas type of person and Easter I guess. I have never really been into scary stuff. Katia says she is tired of being "cute" so we try to stick to "pretty" more but this year she is all about being scary. Weird for me. I think she just makes an ADORABLE (another word she hates!) princess! Golden shoes and all! She has agreed to let me take pictures of those.

Gotta run:)

Love, Tracy


******

November 1, 2007 4:50 PM

Just wanted to jump on and add some pictures from yesterday. There are more in the "view photos" link. She got to do her "Mean Doctor" pictures (although she acted quite sweet!) and I got my sweet princess pictures:)

She had fun but she wore out pretty quickly and ended up soaking in the tub and watching cartoons.

Hopefully everyone had a safe evening.

Love, Tracy and Katia

PS As you can see, Fozzy ended up being the "Patient".





October 30, 2007 11:00 AM

Counts from October 26th

WBC 3.40
HGB 15.2
PLT 383
Creatinine 0.4
FK506 (Prograf) 13.0

So, clinic went well. Katia received IVIG (thanks to all the blood donors) and she received her Pentamindine treatment. It was a long day but it is better to have one long day and get it all out of the way. Her new treatment will begin next time around.

Her skin is looking about the same. We are thankful that the steroids always seems to at least hold her GVHD at a steady pace with few flare ups but we really need to get it under control.

Katia is very very much looking forward to tomorrow (Halloween). She is pretty much buzzing around here today which is nice to hear and see. She has promised to let me take some pretty pictures as long as I let her take some scary pictures (agreed!)

Right now she has school first with Ms. Michelle.

Myron carved two Jack-O-Lanterns with Katia and Tatiana over the weekend. They had quite a lot of fun. I wasn't feeling to well so I stayed on the "sidelines" and watched. They turned out suprisingly well though.

Katia is still set on being a scary doctor. I haven't had much luck on finding a scary mask for her because they seem to be the size for teens and adults (what she is looking for) but I have one last try today to see if I can find one. Other than that, we will have to get creative? We will pull it off though:)

I am not sure what Fozzy is in for but he is getting "dolled up" by Katia and Tatiana too. I am not sure they remember he is a BOY! My idea was to dress him up like a cat? Is that boy enough? Maybe not.

I am kind of more a Thanksgiving and Christmas type of person and Easter I guess. I have never really been into scary stuff. Katia says she is tired of being "cute" so we try to stick to "pretty" more but this year she is all about being scary. Weird for me. I think she just makes an ADORABLE (another word she hates!) princess! Golden shoes and all! She has agreed to let me take pictures of those.

Gotta run:)

Love, Tracy


*************

October 25, 2007 7:52 PM

Well just wanted to post real quick. We will be off to clinic tomorrow for counts and infusions. We are going to put together a pumpkin craft:)

I am not sure if we are doing the new treatment tomorrow or just signing the papers but I know we are getting Pentamindine and IVIG tomorrow so that is a pretty full day.

Katia has been pretty cranky these last few weeks so I have been getting her to help me clean:) That is what I do if I am cranky, or not cranky.

Fozzy had a bit of an incident today? He is weird. Remember he had the eye problem where he tore his cornea? Well today, he had a nose bleed. Katia came running in my room saying there was an emergency! She had put him in their bathroom (on the tile-smart child!)

I went in there and put him directly in the tub and sure enough it was just dripping blood. I couldn't find the problem. So, I tried to apply pressure but the problem with a dog is that their nose is right by their mouth so it blocks their breathing. Anyway, it seemed to work. But, about an hour later it started again.

By then Tatiana was home and she noticed a cut on his nose?? How did he cut his nose??

So, we are keeping an eye on it. Hopefully it will heal up without needing to go to the vet. It isn't big. He seems a little "accident prone".

Katia is a good doctor/vet/nurse though.

So, that is about all.

I have a picture I took today that I will try to upload tomorrow after clinic or by Saturday. Katia is getting into the Halloween Spirit:)

Love, Tracy









October 24, 2007 5:20 PM

Just jumped on to finally update some pictures!! It was hard to find anything without sunglasses. We really haven't been taking pictures but I found some plus Tatiana had her birthday so I got some from her birthday:)

Love, Tracy







October 17, 2007 12:35 PM

Hello:)

Back home. I wanted to sit down and give some numbers here.

First the labs from clinic the other day.

WBC 3.70
HGB 13.7
PLT 403
ANC 2400
Creatinine 0.3
IGG 606 (I think??)
FK506 6.6

Those numbers were good enough to go on to Miami and deal with after coming back.

I am a bit concerned now about the FK506 being that low as it really seems her GVHD is flaring up and I am actually waiting to hear from her doctor as I type to talk about the next treatment. Katia's hips look quite bad as well as her eyes and bottom area. It was quite and uncomfortable ride for her yesterday but she was able to lay down on her blanket and pillows for the ride most of the way and the doctors were very good about seeing her quickly between eachother. I was very impressed how quickly each one got to seeing her and how sweet they each are with her. She, as well was so easy to work with. I was very impressed with her behavior and how much Katia really understands the importance of letting them do the eye exams.

Now they vision exams. The right eye shows 20/70 and the left eye shows 20/200. The numbers are important for the Homebound School Program to really know what to do and how to move forward with Katia. She really isn't progressing although she and her teacher really are giving it their all.

One of the eye doctors explained some of it has to do with the age her transplant and radiation was done at. Her eyes have to communicate between eachother and her brain and that processing is kind of jumbled. Not much can be done about that. Another one was telling us about a new treatment idea for GVHD of the eyes but that it may be risky due to the fact Katia's immune system also seems to still be so low and it is still a trial in so many ways. The fact is there is at least a lot of research and ideas still going on and the more doctors you see and their willingness to talk amongst eachother, the better. So that is what we are doing.

We are also going to see someone else here. One of the Miami doctors are going to call another very well known cornea specialist closer to us here to see Katia and he can see her and get his input and also maybe he can see her in between so we don't have to go to Miami so much. We will obviously always do whatever Katia needs but we also always want to keep options open.

So, I think that kind of catches things up.

I will update when I know more about the next treatment starting up for the GVHD. Steroids have been in use steadily with Katia since March 2004 and they have always held her GVHD kind of steadily although it has flared up on and off but now we need something new added to the mix again. We have thrown in new things here and there and they have worked temporarily but then stopped and we have always had to steadily relied on steroids but now we need another mix again. So, please pray for that.

Thanks for checking in:)

Lots of love,

Tracy






OCTOBER 16, 2007 5:42 pm

ON OUR WAY BACK FROM KATIA'S APPOINTMENT EYE APPOINTMENTS IN MIAMI.

KATIA'S VISITS WENT WELL. SHE DID VERY GOOD AND WAS SO AGREEABLE AND HELPFUL AND DID EVERYTHING ASKED EVEN THOUGH SHE HATES HER EYES BOTHERED.
HER EYES ARE BAD AGAIN. FILAMENTS ARE BACK, THE PUNCTAL PLUG CAME OUT WHICH WE EXPECTED. SHE CAN BARELY KEEP EITHER EYE OPEN DUE TO LIGHT SENSITIVITY.
THEY DID TEST HER SITE AGAIN WHICH IS WORSENING. I DON'T HAVE THE NUMBERS IN FRONT OF ME BUT THEY WROTE THEM DOWN FOR THE HOMEBOUND SCHOOL SERVICE FOR ASSISTANCE.
WE ARE NOTICING THE GVHD IS WORSE THAN EVEN 2 DAYS AGO SO I WILL CALL HER DOCTORS TOMORROW BUT WE ALL AGREE THIS IS THE BASE ISSUE FOR EVERYTHING AND WE NEED TO ADD/CHANGE TREATMENT OR IT WILL TAKE OVER.
WE ARE GOING TO ALSO CONSULT ANOTHER EYE/CORNEA SPECIALIST BUT I AM JUST NERVOUS AND PRAYFUL TO FIND ANSWERS AS GVHD CAN REALLY GET OUT OF HAND AND HAS A FEW TIMES WITH KATIA ALREADY.
WE APPRECIATE YOUR PRAYERS FOR KATIA, OUR FAMILY, OUR JOURNEY TO MIAMI (THE WEATHER IS GREAT!) AND JUST EVERYTHING.

I WILL UPDATE MORE LATER. I REMEMBER I NEVER UPDATED THE LABS FROM THE OTHER DAY. OOPS.

LOVE, TRACY


****************

October 8, 2007 4:20 PM

Hello:)

We are home from clinic. We had a kind of long day and I don't have the counts right in front of me. I will update them when I get them in front of me. They were about the same as last time (which is a good thing). I am waiting for the IGG count mainly to find out about when we need to go back for and IVIG dose before Miami next week.

Katia's GVHD seems to be flaring up again especially around her hips and in her bottom area. Her knees, chin and mouth are staying about the same. Her eyes are quite bad again. Not so much the eyelids but the corneas. We will find out more about that when we go to Miami next Tuesday. Please continue your prayers for her eyes and this persistant GVHD. Her hips have been really sore and her bottom too but I hadn't looked. She has just been wanting to take more tub baths and she soaks in some Burts Bees Wax Milk Soak I had gotten from a good friend. It has proven to really been soothing for her skin for anyone out there who does have dry skin. It was also quite helpful with the skin on her feet.

Nioxin has helped her hair stop falling out tremendously!!! And it helps her scalp not itch as much and it isn't red anymore. Plus it smells like mint icecream:)

One other issue lately has been some lose stools for her. They have been coming and going as well as her appetite.

Angel Hannah's Family has been in my thoughts so much. Angel Hannah passed away on October 4th and I know many of you had followed her via the Prayer Requests that had been listed on here. Katia asked today at clinic (or on the way-I can't remember) "What happened to Hannah?" I told her, "She went to Heaven." She said, "No Mommy, What medically went wrong?" That really caught me off guard but I have to remember Katia knows a lot more than even I give her credit for sometimes. She never gives a hint of being scared for herself really but she does for others. She knew Hannah was very sick when we saw her at clinic 2 weeks ago. She told me that when we were leaving clinic. She knew when we saw Angel Kelly Muldoon for the last time also. She told me that time also. Katia has such a presence about her that she acts so much her age sometimes but at other times so much more grown up than even an adult. I can't explain it but it really brings tears to my eyes to think of all she must think about that she doesn't tell me. Katia has been through so much but yet so many others have been through what she has been through and more. It is sometimes so overwhelming but other times so much a part of our everyday lives. I find it hard to blend in sometimes or to explain things to others as I almost feel out of place or awkward but that is weird because I am just a normal mom in so many ways (I think I am). I am still trying to reach the correct dose of the Topomax which will hopefully control the seizures without leaving me totally nauseated all day. I think there has to be some balance somewhere. I do have a good Neurologist which I didn't have last time I went through having seizures so I am very grateful for that. He is very on top of things, very compassionate and very very easy to talk to and get hold of. Plus he understands I have stress in my life and it isn't going anywhere.

What is she going to be for halloween? That question has finally been answered. A SCARY DOCTOR!!! That is her final decision she says:)

Love, Tracy







October 5, 2007 3:50 PM

Didn't make it to clinic today. Things didn't go too well with me last night actually, nor yesterday afternoon so we put it off till hopefully Monday. These seizures are just draining me and we really need to get them under control. I feel so bad for a lot of the kids I know that go through them as well as so many other kids they are facing. Having gone through them in the past, I know they can drag out for years with no real answers as to why and no real answers as to how to stop them sometimes. I am just praying this time is better than last time. I appreciate your prayers. Katia is a very good doctor for me:)

Of course Myron stays very concerned. You can imagine I am kind of the center of things running around here in many ways so I have to get on the mend. For the most part, I can go about my typical day though. I just feel pretty rotten but staying busy helps.

With so many recent things that have happened though there has just been a great deal of added stresses and stress is never a benefit to anyone so just please pray this will pass. I am sure it will.

Katia is actually quite eager for Miami. She looks forward to the car trip??? Weird I know but she likes the fact of junk food and having Myron and I all to herself. She is hopefully we will take Tatiana along for the ride as well. She gets nervous with eye visits so she likes Tati there with her.

So, that is about it for now. Always feel free to email me if you don't hear from me.

Lots of love, Tracy








October 4, 2007 4:15

We are off to clinic for a while tomorrow for Pentamindine and labs. Hopefully Katia's labs look good and it isn't too long of a day. We have Miami on the 16th and Katia really needs the eye visit as her eyes aren't doing well.

I appeciate your messages and so does Katia as we read them together. School is going so so. She tries but sometimes she just kind of gets to the point she doesn't want to try. I don't blame her. Her eyes bother her a lot and since her main goal is to read and she isn't getting there, she is losing some of her oomph.

So, please keep that in your prayers. I know there are plenty of other things that could be going wrong so we count our blessings daily and so does Katia. She definitely doesn't "sweat the small stuff" but she is just a 7 year old so sometimes she does act her age (more times than you can imagine). She is already looking forward to Halloween, Christmas and her Birthady. I tell you, she does know when those times of the year are coming up! I can't believe she will soon be 8!!!!! Imagine that?? Wow!!! She is a miracle. We have a Bone Marrow Transplant Reunion coming up in November and I can't wait to see some of the other kids! It will be hard to know so many won't be there though. Those that won't be there will always be in our hearts.

Lots of love, Tracy



*****************

October 2, 2007 11:00 AM

Good morning:)

I feel like I keep delaying getting on here. Things here have been pretty much the same with Katia. I am eager to see what her eye doctors think in Miami.

I have been still having seizures so we went up on meds and now we are changing them. They are making me feel quite puffy and uncomfortable and I just think about how much Katia and so many others go through. I really thought we had these seizures of mine behind us but I guess not.

Sharayah is doing well in school. It is starting to cool down here in Florida and even more so in Pensacola than for us. Tatiana very much enjoyed her birthday and is enjoying high school:)

Some day, I am going to stop promising when, we will get a new picture up here:) Katia isn't too happy with cameras right now due to the flash and when she is somewhere a flash isn't needed, her sunglasses are on so... we will work on that.

Lots of love, Tracy









September 26, 2007 3:20 PM

Hello there. I actually jumped on here to add Katia's IGG counts (I use the journal history as a reference a lot so it helps me to post her counts) and ask for a few silent prayer requests. There has been a lot going on with the need for prayers and there are quite a few critically ill patients at this time. Through the "Staying in Touch" Message Board a lot of prayer requests have been able to not only be posted and prayed for but also updated. I am grateful others being able to post and update and I am sure the extra prayers are greatly appreciated.

Katia is having some serious eye issues again. They are about where they were before surgery. She is pretty irritated right now as I think she thought her eyes would be better forever. We go back in a couple of weeks. I kind of think the temporary punctal plug came out and they may decide to permantly close the other 2 tear ducts as there was some improvement to her eyes staying more lubricated. We have been doing a lot of drops though so hopefully there isn't as much damage to the corneas at this time. We will see.

Other than that, Katia is doing decently well. We were talking the other day how great it has been with Katia not being admitted in so long. We are blessed with each day she is home and always know just how blessed we are.

I better summarize here (big bolt of lightening just bammed!!!)

Thank you for always checking in and we love to hear from you either here or on the board. Katia is sitting here with me right now due to the lightening so I am reading her some messages. We are still praying she will be able to learn to read. That is our goal again this year. I think a lot depends on her eyes.

Okay, more lightning. Signing off:)

Lots of love, Tracy








September 22, 2007 10:00 AM

WBC 4.72 (better!)
HGB 13.0
PLT 406
Creatinine 0.3
IGG 791 (good)


All went well at clinic yesterday (and on the way home.) Katia had her Pentamindine Infusion, labs and then we were headed home. Since her WBC count was normal, no GCSF necessary to boost her.

Katia has been having some belly issues so we are going to try to wean her CellCept more to see if that helps without causing problems with the Graft vs. Host Disease flaring up.

Her eyes? Not so good. They are getting worse and worse again sadly. We will go back to Miami in October to get a better look at the corneas.

Please keep Hannah D. in your prayers. We saw her at clinic (the first chance I have had to meet her and her Mom) and I know they would really appreciate your prayers.

This past we met someone who has followed Katia since like September 2003. We met her and her daughters at the park. Katia had a splendid time and although it looked like it was going to storm, it held off. We were so happy. Katia had really looked forward to the park and meeting these girls.

There are a lot of Prayer Request to please keep in your prayers as well.

Thank you so much for dropping by and continuing to check on Katia. We are so happy her WBC remained stable and that is due to prayers:)

Lots of love, Tracy


*************


September 18, 2007 4:00 PM


Happy 15th Birthday Tatiana!!


Tatiana is a wonderful daughter, awesome big sister, great little sister and I am sure a wonderful friend to her school mates!!

Today, 15 years ago, Tatiana was handed over to Myron and I after a very long and overdue delivery date (3 weeks late!)

The moment we saw her, we were in love! She had very very dark, curly and long, very long (like a wig kind of long) hair, rosey red lips and very light white skin. She looked like Snow White. She was just as cute as one could ever imagine.

She was the baby of this family for 7 years until Katia came along and then she just got to move on to being a wonderful big sister and playmate to Katia.

I can't imagine how our family would have ever been complete with Tati:)

Love, Tracy











September 14, 2007 (nearly the 15th) 11:56 PM

Hello:)

First thank you:)

Thank you for stopping by and checking on things.

It is late and I just left a pretty detailed update on the Message Board about our week. It is one week to remember and to happily move on from.

This week however brings another great event! Tatiana turns 15!!!! Yeah, she is growing up! First she is in highschool, now she is 15, what next?

When Katia was diagnosed, Tatiana was just 9 years old. She is still the "sweet one" as we like to say and she is always the best little play buddy for Katia (okay, don't tell Tatiana I said, "little") but she is just always there.

Tatiana is the first one to check to see how my day has gone and goes out of her way if something is wrong to try to make things better. She is a really good kid and a great daughter, big sister, little sister, and everything:)

This is her week!

I am not yet sure what we will be able to do but we do love cake so that is a definite! She likes the cake I had for my birthday. Publix Bakery, Marble with Butter Cream Icing! That is that delicious cake that goes straight to your thighs! The best one!!!!

Katia is doing okay. Her eyes are beginning to bother her more and more again but we don't go back to Miami until the middle of October. She is still doing a lot of drops and trying to keep them as moist as possible. She is not happy with any light still and wears her glasses most of the time or she is squinting. I am REALLY eager to get her vision checked. Both of us need to. I have been having more and more blurry vision and when I do, I just think what Katia must be going through. We rely on our eyes so much.

It is hard for me to get on the computer and type now due to my eyes which is scary to me. Macular Degeneration has taken the site of quite a few of my family members and it is a scary thought so I am really aiming to get my eyes checked ASAP. I am sure glasses are in order for me. I use reading glasses which have gone from barely nothing to quite strong over the last 6 months to the point I can't function without them. I am grateful for being able to blow up fonts and print or read things BIG!

As far as my headaches, they are there. I like to be able to think that at least the aneurysm has gone away so now I just have one little friend in my head, the angioma. We will keep an eye on that every 3 months. There really isn't much they can do because of the risk unless the seizures happen so often that they cause more of a risk. Right now, we just went up on the seizure medications and I seem to be doing fine, seizure free.

I have a lot of ringing in my ears which bugs me because I can't hear what people are saying and I hate to ask people to repeat so I just kind of go along with what is being said. I am not sure if that is caused by the problem or more the medications. They still have me on two seizure meds as well as Lyrica for the sharp pains and hopefully to help with the Fibromyalgia. My back is a mess. One side is very stiff and the other is mushy so I feel that.

I try quite hard to take it easier and not overdo things but, who am I kidding, that is impossible. The other day I was cleaning the baseboards and I did sit down and just scoot along the floor. I felt like a 90 year old but it did help my back not to be bending over.

Sharayah is doing well at college. I can tell she is homesick though because she REALLY stays in touch!!! We both have T-Mobile so that is good at least. Free Mobile to Mobile minutes. Plus we can text like champions!!

Well, I should be off to bed. Last night I fell asleep around 3AM and woke up around 5 so I am aging and need some beauty sleep:)

I am looking forward to a quiet tomorrow. My to-do list is very very small actually and I plan to keep it that way.

Read the message board to hear of our Brighthouse vs. Verizon war going on but I really am going to try to let that rest over the weekend.

Lots of love, Tracy








September 12, 2007 7:45 PM

We are praying for each of you and appreciating your prayers for us. I am looking forward to a hopefully peaceful weekend.

Please keep a few silent prayer requests in your prayers. I know these families will probably post in the Message Boards and probably start their own sites but they have just been thrown into the world of cancer.

I pray someday soon a cure will be found.

Love, Tracy








September 11, 2007 10:23 PM

Remembering all of those families affected by the tragedies of 9/11.

"America Stands Strong by: Myron Solomon written on 9-11-2001

Love, Tracy








SEPTEMBER 9, 2007 6:50 PM


IT IS ALMOST MONDAY...


KATIA SAID SOMETHING A BIT AGO THAT JUST MADE ME SMILE AND I WANTED TO SHARE IT WITH YOU:)

SHE CAME IN AND HAD SOME PICTURES SHE DREW FOR ME. THEY WERE DIFFERENT TRACINGS OF HER HANDS OR HER ACTUAL HANDPRINTS. FOR THOSE OF YOU WHO HAVE FOLLOWED HER SITE SINCE 2003, YOU WILL REMEMBER HOW HARD WE DESPERATELY TRIED TO GET HANDPRINTS WHEN SHE WAS SO SICK WITH THE ASPERGILLIS IN HER LUNGS AND HEADED FOR LUNG SURGERY. I JUST HAD TO HAVE THEM AND FINALLY ONE OF THE NURSES WERE ABLE TO. I HAD TALKED ABOUT HOW MUCH I LOOKED FORWARD TO SEEING HER HANDPRINTS ON THE WINDOWS AND SLIDING GLASS DOORS AROUND THE HOUSE. WELL SHE PUTS THOSE LITTLE HANDPRINTS EVERYWHERE AND I AM GRATEFUL!!! OF COURSE I WINDEX THEM OFF BUT I KNOW THEY WILL BE RIGHT BACK IN A FEW MINUTES. HER HANDS HAVEN'T CHANGED AT ALL OVER THE LAST 5 YEARS SO EVERYTIME I HOLD HER HAND, I REMEMBER JUST HOW THEY FELT WHEN WE WERE SO SCARED FOR HER LIFE.

SO MUCH HAS CHANGED SINCE THEN BUT THEN A LOT OF THINGS HAVEN'T CHANGED AT ALL. WHAT HAS CHANGED IS KATIA IS HOME, SHE CAN DRESS HERSELF NOW, SHE IS POTTY TRAINED, HER MARROW IS ALL DONOR, HER LUNGS ARE IN GOOD SHAPE (ALTHOUGH SHE WILL REMAIN ON THOSE ANTIFUNGAL MEDS FOR A VERY LONG TIME), WE ARE GETTING CLOSE TO BEING 4 YEARS POST TRANSPLANT, SHE WAKES UP EACH MORNING IN HER OWN BED, SHE HASN'T SPENT THE NIGHT IN THE HOSPITAL FOR QUITE SOME TIME, AND SHE GETS HAIRCUTS!!

WHAT HASN'T CHANGED IS SOME GOOD AND SOME BAD. SHE REMAINS ON A LOT OF MEDICATIONS, SHE STILL HAS NO IMMUNE SYSTEM, SHE REMAINS ON STEROIDS TO FIGHT HER ONGOING BATTLE WITH CHRONIC GRAFT VS. HOST DISEASE, SHE STILL WANTS TO LEARN TO READ, SHE IS STILL 3 FEET TALL, AND SHE STILL HAS TEMPER TANTRUMS:)

THE GOOD THINGS THAT HAVEN'T CHANGED IS SHE IS STILL HUGABLE AND SQUEEZABLE, SHE IS STILL 3 FEET TALL (SHE DOESN'T WANT TO GROW), SHE STILL IS SO APPRECIATIVE OF BEING HOME, SHE STILL LOVES MACARONI AND CHEESE, RICE PILAF AND DONUTS AND SHE IS STILL A MIRACLE!!

SO SHE COMES IN HERE WITH THE DRAWINGS AND SAID, "THESE ARE HELPING HANDS FOR YOU!" I THOUGHT THAT WAS JUST PRECIOUS! SO WE WERE TALKING (MIND YOU SHE CAN CARRY ON A VERY GOOD CONVERSATION LIKE AN ADULT BUT SWEETER) AND TALKING ABOUT THE TIME WE WERE TRYING TO GET HER HANDPRINTS IN THE HOSPITAL. I TOLD HER I WAS VERY HAPPY SHE WAS ABLE TO DO HER OWN HANDPRINTS AND THAT WE WERE HOME. SHE SAID, "YOU KNOW WHAT I AM HAPPY FOR?" I ASKED HER WHAT AND SHE SAID, "MY COMPUTER HAS WORKED ALL WEEK!" I HAD TO LAUGH BECAUSE FOR ONE, SHE REALLY DOES LOVE HER COMPUTER, TWO I AM A COMPUTER PERSON AND THE FACT THAT SHE WAS BEING SWEET BECAUSE IF IT DOESN'T WORK, SHE KNOWS IT DRIVES ME INSANE UNTIL I CAN GET IT BACK UP AND GOING. SO WE BOTH ARE GRATEFUL FOR THAT AND SHE HAS REALLY BEEN USING IT A LOT!!

I JUST REALLY LIKE THE FACT KATIA IS SO APPRECIATIVE. OF COURSE SHE CAN BE YOUR TYPICAL 7 YEAR OLD IN THE FACT SHE NEVER HAS ENOUGH TOYS, JUNK FOOD OR TV TIME BUT IN SO MANY WAYS, SHE IS SUCH A CARING AND DEEP TYPE OF INDIVIDUAL. I AM GRATEFUL GOD BLESSED US WITH ALL 3 OF OUR KIDS:)

OKAY, SO SPEAKING OF GRATEFUL...

EACH FRIDAY, I AM GRATEFUL FOR ANOTHER WEEK TO HAVE PASSED. IT DOESN'T MEAN IT WAS THE PERFECT WEEK BUT IT MEANS GOD HAS ALLOWED ANOTHER WEEK TO GO BY.

I AM GRATEFUL FOR SMALL THINGS AND I NOTICE A LOT OF THINGS THAT I DIDN'T NOTICE BEFORE KATIA GOT DIAGNOSED IN 2002. I AM GRATEFUL GOD HAS OPENED MY EYES TO THESE THINGS.

I BELIEVE IN MAKING A DIFFERENCE IN ANYWAY WE CAN AND AM OFTEN REMINDED OF THE "PAY IT FORWARD" WAY OF LIFE. GOD HAS ALWAYS BROUGHT MANY BLESSINGS TO US IN MANY DIFFERENT WAYS. A GREAT WAY HAS BEEN THE PEOPLE WE HAVE MET ALONG THIS JOURNEY (THAT BEING YOU) AND THE FACT THE WORLD IS FULL OF SO SO MANY GOOD PEOPLE HAS SHONE VERY BRIGHTLY.

I TRY TO MAKE IT A POINT TO "NOTICE THINGS" MORE AND TO APPRECIATE EVERYTHING IN SOME WAY EVEN IF IT SEEMS LIKE SOMETHING NOT TO BE APPRECIATED.

OBVIOUSLY I DON'T LIVE ON TOP OF SOME "HAPPY BALL OF SUNSHINE" (ALTHOUGH I DO LIVE IN FLORIDA) SO DAYS ARE NOT FULL OF ALL GREAT THINGS AND HAPPY ATTITUDES BUT I THINK LIFE IS MUCH BETTER DUE TO GOD'S BLESSINGS AND KATIA'S JOURNEY. I READ ON A SITE ONCE (CAN'T REMEMBER WHO'S) THAT THEY WERE GRATEFUL TO HAVE BEEN DIAGNOSED WITH CANCER. I KNOW THAT STRUCK A LOT OF PEOPLE AS JUST WEIRD BUT I DON'T THINK IT WAS MEANT THEY WERE GRATEFUL FOR THE DISEASE ITSELF BUT YET THE APPRECIATION OF LIFE IN GENERAL ONCE THEY WERE DIAGNOSED.

I THINK OUR FAMILY FOR ONE HAS REALIZED HOW MUCH OF A DIFFERENCE WE CAN MAKE IN A WAY WE NEVER EVEN KNEW EXISTED BEFORE. BELIEVE IT OR NOT, I NEVER EVEN KNEW THERE WAS AN ONCOLOGY FLOOR AT ALL CHILDREN'S HOSPITAL UNTIL THE DAY KATIA WAS TRANSFERRED THERE VIA AMBULANCE. TO ME "PEDIATRIC ONCOLOGY" MEANT PLACES LIKE ST. JUDES. I NEVER KNEW HOW MANY KIDS AND FAMILIES WERE LIVING WITH CANCER. I NEVER KNEW ABOUT THE LIGHT THE NIGHT WALKS WITH THE LEUKEMIA AND LYMPHOMA SOCIETY OR THE MANY DIFFERENT FUNDRAISERS WE KNOW ABOUT NOW FOR MANY CAUSES WE HOLD DEAR TO OUR HEART.

THROUGH THE KATIA SOLOMON FOUNDATION WE HAVE BEEN ABLE TO HELP A NUMBER OF FAMILIES FINANCIALLY AS WELL AS IN A WAY OF SUPPORT. WE HAVE BEEN ABLE TO RAISE A LOT OF AWARENESS AND ADD NUMBERS OF PEOPLE TO THE MARROW REGISTRY. WE HOPE THIS WILL CONTINUE FOR YEARS AND YEARS AS LONG AS DONATIONS COME IN OR UNTIL THERE IS A CURE!

OUR FAMILY HAS GONE THROUGH COUNTLESS TIMES OF NEED BUT GOD HAS ALWAYS SHOWN US A BLESSING. OUR FAMILY HAS GROWN CLOSER AND IS VERY APPRECIATIVE OF SOME VERY GOOD FRIENDS WE HAVE MET ALONG THE WAY AS WELL AS EACHOTHER.

AS WE APPROACH THE END OF SUMMER I THINK BACK TO AUGUST 26, 2003 WHEN WE FOUND KATIA HAD RELAPSED. I REMEMBER THE TRIP OVER TO THE HOSPITAL ON THE 27TH THINKING WE WOULD BE GONE FOR MAYBE A MONTH OR SO STARTING BACK ON CHEMOTHERAPY AND RADIATION AND I JUST PRAYED WE WOULD FIND KATIA A MARROW MATCH RIGHT AWAY BEFORE SHE WOULD HAVE A CHANCE TO RELAPSE AGAIN IF SHE WAS ABLE TO REACH REMISSION. LITTLE DID I KNOW IT WOULD BE 11 MONTHS BEFORE WE RETURNED HOME OR ALL THAT WE WOULD FACE AND LEARN DURING THAT TIME. THE FOUNDATION WAS BORN DURING THAT TIME, OUR EYES WERE OPEN TO SO MUCH IN SEARCHING FOR KATIA'S MATCH AND A MOUNTAIN OF APPRECIATION FOR LIFE GREW DAILY.

THIS CARINGBRIDGE SITE BECAME SO MUCH A PART OF SO MANY LIVES BUT WAS ALSO SO THERAPUTIC TO ME IN UPDATING AND THE FACT I KNEW SO MANY PEOPLE WERE PRAYING FOR AND CHECKING IN ON KATIA. I NEVER IMAGINED HOW MANY LIVES ONE PERSON COULD TOUCH. AS TIME GOES ON THIS SITE CHANGES BUT IT WILL REMAIN HERE AS I BELIEVE KATIA'S JOURNEY CONTINUES AND HER PURPOSE CONTINUES TO UNFOLD EACH DAY.

MOST RECENTLY, THE "STAYING IN TOUCH" MESSAGE BOARD WAS CREATED AS WAY FOR OTHERS TO JOIN IN POSTING PRAYER REQUESTS, UPDATES, IDEAS, ETC. AGAIN, PEOPLE HAVE STEPPED FORWARD AND OFFERED SO MANY PRAYERS AND ENCOURAGMENT TO COUNTLESS OTHERS.

SO AS THIS WEEK BEGINS, PLEASE KNOW YOU ARE ALWAYS IN OUR PRAYERS FOR YOUR DAY TO DAY LIFE. OUR PRAYERS ARE FOR CURES TO BE FOUND. UNTIL THEN, OUR PRAYERS ARE WITH DOCTORS AND RESEARCHES TO IMPROVE AND FIND MORE AND BETTER TREATMENTS, FOR INSURANCE WORRIES TO BE SETTLED, FOR FAMILIES GOING THROUGH TREATMENTS TO FIND SOME PEACE IN KNOWING THAT EACH DAY BRINGS US CLOSER TO A CURE.

SO WHEN YOU HERE THE "TGIF" THING, THAT IS WHAT IT MEANS TO ME:)

LOTS OF LOVE (SORRY FOR BEING SO LONGWINDED-ALTHOUGH I GUESS IT IS EXPECTED)

TRACY:)


***************

September 8, 2007 10:05PM

Hello:)

Thank you so much for your kind messages. I appreciate sharing Katia's journey as I appreciate following others' journies along the way. I have learned so much and have greatly been touched by so many lives. I think we all have.

I am working on editing Katia's book and it has given me a chance to reflect on a lot of the journal history. I get amazed at how much she has gone through and how she just smiles each day and goes on and on. She really is my hero in so many ways.

I had really wanted to update the pictures, really I did. I have just had a headache that won't go away no matter what I do! I am up due to that right now so I figured I would check on some sites, update, etc. I need to get my eyes checked I guess as my vision is on the blurry side close up (I do wear reading glasses) and my ears are just ringing more and more. I tend to delay things but recently I have had my fair share of doctor visits. I just need to add on an eye exam I guess.

So, again thank you for your messages.

I know most of you visit the Message Board but there are two boys headed for transplant that could really use your prayers. Anthony N. and Dylan M. The links can be found by going to the www.ladybugkatia.com" site and going to the Kid's Links. The Message Board can be found via the ladybugkatia.com site also.

Thank you so much for your continued prayers on Katia, her counts, her eyes, etc. Please pray for her to have a good school year and of course, good health:)

Love, Tracy







September 8, 2007 9:00 AM

I just wanted to share something with you that I just watched.

So many of you followed Angel Jake Owen Raborn's Site and know his family started a Foundation. They have a video that talks so vividly and openly about what so many families face. Please watch the Jake Owen Raborn Foundation video.

As we try to help families through the Katia Solomon Foundation and continue our own journey with Katia, it is hard to put into words what really gets faced each day. Why families need help. What happens with the sibblings of the patient.

The journey doesn't end with the end of active chemo treatments, radiations, transplants, it goes on and on until the patient can be considered cured. If the patient passes away, like sweet little Angel Jake, the journey doesn't end, it just hurts and the family still must struggle to face each day without one of their dear family members. Strength is sometimes able to be found in helping others which is what Jake's family is doing and what we try to do with the Katia Solomon Foundation.

Thank YOU for being a part of Katia's journey.

Love, Tracy





September 7, 2007 9:07 PM

WBC 2.66 (dropping again-got GCSF today)
HGB 13.8
PLT 371
ANC 744
Creatinine 0.3 (good)
IGG 525 (got IVIG today)

So, today was clinic all day. The plan was to go to clinic and prepare for Miami by getting IVIG and Pentamindine as well as her regular labs.

So, we did that. But, when labs came back, her WBC is going down and her ANC was all the way down to 744 so she got a dose of GCSF.

For a few reasons, Miami is getting delayed until October. One reason is Myron's health. The last drive down there is probably what landed him in the ER and he isn't any bettter and still waiting to have some tests done so we don't want to chance it. We called and since it is a post-surgery check up, we delayed it. Her eyes are staying about the same this week. They do have their bad days though. Some days they look so great although still red on the eyelids and other days they look irritated, red and she keeps them closed again or holds her hand over to keep them shut. But, we will see at her next appointment, in October, if they are showing signs of more filaments growing on the corneas. The idea is they will grow and need to be removed again but hopefully not for a few months.

Other than that, we had a scare on the way home from clinic. Traffic was bumper to bumper. Katia usually sleeps the whole way home so she is normally quiet and she was today. All the sudden I see her hitting herself in the throat. She was kind of pink looking (moreso than usual) when we left clinic so my first thought was reaction to IVIG. Since it is a blood product you can have a bad reaction but unlike blood or platelets, IVIG comes from tens of thousands of donors so the risk is higher. I gave her some water which she was able to swallow and I was asking her questions which she could answer. She said it felt like she couldn't swallow, not that it hurt to swallow. It got to a point it wasn't worsening but I had already planned if it got worse, stop and call 911 and then her doctor. I am not going to risk her not breathing again. Not sure if it was a reaction or not though.

So, I called her doctor and we gave her benedryl when we got home. She was premedicated with benedryl and tylenol before the infusion of IVIG but 6 hours had passed. Now it has been about 3 hours since I gave her that benedryl and she is still okay. However, I will keep her with me tonight and keep an eye on her. Myron and I are very light sleepers since Katia's diagnosis and she is really good at letting us know when something is wrong and even what is wrong a lot of times. It was so hard when she was 2 and couldn't explain but now she is a little doctor person:)

I am going to change out pictures sometime tomorrow. I am not sure what I am going to put up yet but I just want to change the pictures.

We are going to work on her Christmas picture actually this month. She is going to put on her little Christmas dress (the red one with the white fluff) and get some pictures. That was her idea the other day which was kind of funny because it has been so hot, I couldn't believe she was thinking about Christmas BUT, she is a seven year old:)

So, that is a catch up on around here.

On a good note, Katia is taking spelling tests now with her classes and she did better on yesterday's test than she did on Tuesday's:)

I am not really sure who comes by here anymore.


Love, Tracy




September 5, 2007 10:25 AM

Myron's parents and my dad did very well through the Hurricane as it made a turn and effected them less than they had planned:)

Thank you for your prayers. We continue to pray about any mudslides and flooding in other parts of Honduras and the path of this storm is this area.

I ask for your continued prayers for Myron who is still going through enormous issues with his health and Worker's Comp. He is still out of work, now for a month, no pay, no answers and a lot of stress dealing with Worker's Comp and nobody seeming to have set guidelines on how to deal with this. It is them that is holding up the next test, an EMG which is the only way he can get back to work, to be cleared from the EMG. Headache!

We actually have tried to get some outside advice but it seems since this is a Federal Job, not many people want to get involved... Please pray this will work itself out as we can't survive without Myron's income. Things have gotten way way way behind. We still have Miami coming up on the 10th and I am not sure how we are going to get through our typical bills along with the trip expenses. But I do know prayers are the most needed right now. Prayers for answers, Myron's wellbeing, Worker's Comp people to get a move on and for Myron to be able to get back to work, feeling better. He still is pretty numb, has pressure in his arm, ribs and chest, constant headache and neck pain, etc. It is just sad because he is normally at work and busy with the Foundation and now things have come to a halt nearly. We can't keep this up, he can't keep this up but we feel out of control as it is out of our hands so we have put it in God's hands.

Katia is doing well. Her eyes are again giving her issues, not as bad but are worsening:(

I am not sure what this appointment will bring. They had discussed permantly closing the other two ducts but I think that would be discussed and another surgery date set to return to Miami. We will see. Hopefully she is not growing back those growths on her corneas which would also need to be removed again.

So, that is us in a nutshell. I updated on me yesterday.

Love, Tracy (and family)


**********

September 4, 2007 6:00 PM

So, I am back from my neurologist appointment with some good news and still kind of puzzled... I guess that is typical though.

For one, the aneurysm spot they were worried about didn't show up on the MRA, only the brain scans so that is being ruled out. That is great because it is really worrying to think something in your head could pop so we have been very concerned about that. The follow up is to be seen every 3 months, to go on up on the seizure meds a bit more and on the Lyrica. The Lyrica will hopefully help with some very sharp headaches I am getting but at least I know a bit more of what is in my head and what is not.

The Hurricane? Well, I spoke to my dad around 2PMish and the storm was just getting by him. He is on the mainland right close to the Nicaragua Border. The Island is getting a lot of the outer bands but all in all they are better off than they thought they would be. Once the rain is done will determine any damage by mudslides or bridges washing away. We all pray for everyone's safety as both countries are very populated and have very limited sources of help, evacuations, and help once something has happened. When bridges get washed away or roads disappear, it is very hard to get to and from anywhere.

So, please keep these areas in your prayers and I will update when I know more about our families.

Love, Tracy







September 4, 2007 12:31 PM

Hello:)

Quick update. So far things look good for Myron's parents and my Dad. With the Hurricane going in through Nicaragua, it more protects the Island of Roatan where Myron's parents are. My Dad will get more of the effects of the Hurricane but right now, it is just starting for him and he has things prepared. I think he will get more of a Tropical Storm which due to mudslides can be bad in his area so the prayer is that the storm moves and doesn't slow down which would allow it to dump more rain causing more mudslides.

So, thank you for your prayers:)

I am headed off to my Neuro appointment.

Love, Tracy






September 3, 2007 URGENT PRAYER REQUEST

Please pray for Myron's parents and family as well as my dad as this Hurricane Felix is headed straight for them at a category 5 tomorrow. There are only so many preparations you can do in this region of the world. Myron and I were down there for Hurricane Mitch in October 1998 and it destroyed a business we had worked very hard to start as well as nearly 70 percent of the economy. My dad lived there at the same time, different location. We were on the island (where Myron's parents are now) and my dad was on the mainland (where he is now). There is about a 70 mile distance between them seperated by water. So close but my dad didn't hear from me, nor I from him until weeks after the hurricane. Thousands of people died and were washing up on the shores of the island and people were just trying to stay informed through radio addresses giving messages back and forth to families on someone living or unfortunately not.

After the hurricane, due to the severe damage and the horrible feeling of NO CONTROL, we decided to move back to the US. My dad stayed and Myron's parents, that is their home. We were there knowing a hurricne was headed at us but only because people were constantly calling us from the states did we know the severity of it. We, along with about 100 others, went to Myron's parent's house which is way up on a hill. Our home was right on the beach which in the long run was flooded.

We lost Sharayah and Tatiana's medical records and most of our personal items but the house was okay. The school I was teaching in was flooded and closed. I left with Sharayah and Tatiana to head back to the US sometime in November I think. Myron came back a little later after helping around the island.

My dad's area was really effected by mudslides and severe flooding. Mudslides buried whole villages. His area was okay and the house he is living in now has been built since. He picked out his piece of property because of how well it held up during Hurricane Mitch. He built his house with the knowledge of hurricanes and what they can cause. He is pretty self reliant, doesn't need too many day to day items and has a good water system and can live quite some time without any electricity.

But, please pray. Some things have changed. One is they all have cell phones! Big help if they work.

Secondly is they are more able to be informed of the weather (Myron's parents) as they get CNN. My dad doesn't have any English TV and what TV he does have comes and goes but he does pick up one Christian radio station that is English and it is located on the island right next door to Myron's parents house.

So, please pray for them as well as everyone else in the path of this hurricane. When damage is done it is very slow and sometime impossible to get to and repair. When lives are lost, it is usually in large numbers due to the inability to really go to a "safe place" or the availability of medical care.

I will post throughout to let you know what I am hearing from them.

Love, Tracy





September 1, 2007 8:00 PM

Guess what surprise I woke up to this morning?

Sharayah!!

Sharayah and some friends drove down here yesterday (which she was on the phone with me most of the time but I had no clue!). She got in about 30 minutes after I fell asleep. She slept with Tatiana and this morning, I get up to all 3 daughters sitting on the sofa waiting to surprise me! They say my face and Myron's face was priceless with our expressions.

It has only been 10 days but we are so close knit, it feels so much longer...

Anyway, we have spent a good deal of the day kind of catching up, she visited work to say hello and we walked around the mall.

She will be here through the weekend. This is pretty much the last long weekend before Thanksgiving.

A few friends came down at the same time so their parents all got suprised too:)

Love, Tracy








August 30, 2007 7:30 PM

Hello:)

It has been a while, it feels like, since I have updated.

Today Katia started school with Ms. Michelle again. Things went well and hopefully this year will be the year Katia learns to read. I think so:)

Her eyes have been pretty irritated these last few days. Not sure why but please pray they don't just turn bad again. We go back to Miami on the 10th for an appointment on the 11th. They are planning to have a look at the progress of the surgery as well as check her vision. We have been extra concerned about her immune system lately or the lack there of. As we get into school again, we have to be extra cautious with Tatiana bringing anything from school. She is very good about coming home, bathing, dirty clothes to the washer, etc. We have always been that way but more so when we know Katia's numbers are low. It is the t-cells we are watching right now. We are leaving her steroids at 10mg per day but we are trying to wean down on her cellcept. Instead of Septra on Mondays, Tuesdays and Wednesdays, we are doing Pentamindine every two weeks. Next clinic is scheduled for the 7th for labs, Pentamindine and IVIG.

Dog news? Fozzy had to go to the vet the other day for (get this), eye issues. Yes, it seems he had ripped his cornea. How? Not sure but he is on eye drops and eye ointment. I guess him and Katia were made for eachother. So, both of them do eye drops each day. I have to say, Fozzy does his without any complaint and he doesn't even move. I hold his eye open and it is just so easy... I am getting spoiled.

Myron is still not doing great. There is a big hold up with Worker's Comp. For him to go back to work, his doctor wants clearance from an EMG (nerve study) BUT, Worker's Comp is delaying the EMG as they are "reviewing the case" so this has meant things aren't getting anywhere. No answers, no pay, no work until it is out of review. Some things just don't make sense. Myron's symptoms are still about the same. He is still numb on his left side mainly but some on his right, he is sore, especially his neck, he is getting very bad pressure headaches and his ears are ringing. I am sure I am leaving something out. His Ortho doctor really believes the nerve damage is in his neck from the incident at work. Please pray things move along and we can get answers, Myron can get feeling better and the pay will get straightened out. It has made already bad matters, worse.

On another note, Sharayah is doing very well with college. She has adjusted well (they is even a time difference) and her class schedule is good. She is quite content:)

Tatiana is enjoying High School and having her own room. We have been doing a LOT of cleaning out and cleaning up around here. We had to readjust Katia's stuff to go in her room and get things off the back porch. There was mold out there and we had to really clean. Florida is very hot and humid right now.

Let's see. Me? I am still waiting for my complete Mammo results. The films had been lost from my previous years so they couldn't compare them at first. Then they found the old films and I dropped them off with the new ones, they were compared and I know the doctor recieved the reports today but it was late in the day. So, I am waiting... Anxiously. As far as the endometerial biopsy, all clear:)

My follow up with my neurologist is on the 4th. I am interested to see what the plan is. I really hope I can get off the seizure medicines at least. I haven't had any more. I get awful headaches and I can't really take the medicine for them during the day as it makes me kind of dizzy but I take it at night. The medicine seems to last all the way through noon time so that isn't too bad. Maybe a few hours in the afternoon, I have a really bad headache. I am still working 2 days a week. No weekends though.

Thank you for making the Message Board so useful with prayer requests and other information. I feel much better with that setup as prayer requests stay much more updated.

Also, if you have a FaceBook, I started one. It is under "Tracy Solomon" (creative). If I get enough people, I will start up a group like a Ladybug Club or something. We will see:)

So, until later. Lots of love, Tracy




*****************

August 24, 2007 9:30 PM

Hello:)

I had sat down earlier to do this but I got sidetracked and it cleared so here goes...

Katia's clinic went well today. It was being squeezed in and I had a 2:00 appointment back in Tampa. We were out of there just in time:)

Katia's WBC dropped back down from the 7's to the 3's... At least it isn't as low as it was so hopefully it doesn't drop more.

Her hemoglobin and platelets are always good, sometimes high but good.

I had my Mammo today (OUCH!). I highly recommend keeping up to date on your exams and testing though. It does help to save lives. I have no results yet although I do know they were quite concerned with what they saw BUT they don't have the Mammo films from previous years as they weren't ready to be picked up yet today so hopefully they will be ready Monday or Tuesday. I follow up with my OBGYN on Thursday about these recent test (the breast MRI and Mammogram) as well as the Endometrial Biopsy. I am praying all her good and I am good until next year.

Thank you for your prayers.

We are preparing actually from now for Katia's next Miami trip. I am hoping to have a better organization with getting into RMH. We were lucky last time and we very much appreciate the Ronald McDonald Houses. They are a great home away from home and are a lot less expensive than a hotel.

Well I need to do a little research before I hit the sack.

Thank you so much for checking in:)

Love, Tracy (and Katia!)









August 23, 2007 7:30 PM

WBC 3.27 (dropped back down)
HGB 14.5
PLT 416
IGG 628
FK506 11.9



Hello:)

I don't have the counts from today yet so I will post them later.

One thing we are changing is how often Katia gets the Pentamindine Infusion so we will go back tomorrow for that. She was on Septra which we took her off of hoping her counts would come up and looking at the last two set of counts, that seems to have worked. Not sure what today's counts are yet though.

Another thing we are watching is her T-Cell count. We would hope for around 350 or so but hers are under 100 which is not good. This is around the number you would expect for someone just a couple months out of transplant. So, we have to do whatever we can to protect her from getting sick or exposed to anyone sick. We are used to that though as it has become part of our life. Katia is used to it but she does get a little squirmy wanting to go places.

At least we have Fozzy which was a hard decision to make for us and her doctors. Plus, Katia can eat fast food again which is a huge plus for her! She can't have their fountain drinks or go inside and we have to watch the fact that sometimes fastfood places let their food sit around to long but the McDonalds and KSF by our house know her and her situation as well as the ChickFilA now by my work. So, we work around it.

Today I was thinking how long it has been since Katia has gotten sick or needed Vancomycin. It has been a while. It has also been a long time since she has had C-Diff (poopy sickness) which is great! There are many positives to look at with Katia although things have really seemed to drag out with her body rebounding from transplant and with all the GVHD issues that are ongoing.

We are planning the next Miami trip, September 10th and 11th. Hopefully they see clean eyes and no more added filaments. I think she will have a good appointment. Plus, they need to check her vision. She says she needs glasses, rainbow ones but I would prefer hear that from an eye doctor:)

So, that is about it. I had my MRI today and tomorrow I have the Mammogram and Ultrasound after Katia's appointment. The details on my stuff can be found on the Message Board.

Also for those of you who followed Angel Amazing Jacob and his family, they have a new addition to their family, Baby Allie. She is adorable!! They adopted her and I can't think of a more perfect family for this little girl.

A pray request that was left on the Message Board was for Hannah Deal. You can check on her via her website at http://www.helphannah.org/.

At this time, they are stopping treatments as they have been told nothing else can be done. Hannah has fought a very hard fight and her family has been through so much. Please pray for a miracle. "As long as there is life, there is hope."

Love, Tracy







August 22, 2007 5:30 PM

Sharayah is safely at college and Myron is on his way back from Pensacola. It was quite a journey up there. About 1/2 way into their trip, the car in front of them had a tire blowout which sent the car into a flip and then roll off the road and into the ditch. All 3 boys in the car crawled out which Myron said was a miracle from the looks of the vehicle. Sharayah and Myron had pulled over to help thinking things could have been really bad. One of the boys had a gash in his arm which Myron wrapped and then the police and paramedics arrived. The three boys were on their way to Florida State University, all their belongings crushed along the road. Myron told them they must have had a guardian angel looking out for them as it was truly a miracle they all crawled out on their own.

Myron and Sharayah arrived in Pensacola around 9PM local time (they are an hour behind us) only to find out they couldn't stay on campus (we had been told they could-as early as Sunday even) so they unloaded Sharayah's stuff, put it in her dorm room and went to look for a hotel. That was a totally unplanned part of the trip and certainly an unplanned expense. Anyway, we learned to always get a name from the people giving you information on the phone. Both Sharayah and I had called and were assured Sharayah could arrive as early as Sunday and we had thought about doing that depending on how Myron felt and what appointments were lined up for him.

Thankfully, Sharayah is now registered, has her keys, is in her dorm room and Myron is on his way back to Tampa. Please pray he has a safe journey. I told him to stop often and get out and stretch. The ortho doctor started him on steroids hoping it would reduce any swelling putting pressure on his nerves. He is still numb in his left arm, shoulder, rib area and part of the side of his face and it seems to have spread some over to the right side. His next appointment has yet to be set but it is for an EMG, nerve study.

Katia now has her own room!!! Yes, with Sharayah moving on to college, Tatiana moved into Sharayah's room (completely) and now Katia is in her own room. I thought she would be scared but she slept in there alone for the first time last night and about an hour after she went to bed, she was asleep. I had to go in and rub her head. Part of me wanted her to wake up and come sleep with me but the biggest part of me was very proud of her:)

Tatiana is VERY much enjoying her first few days in highschool!!

I like to share the good milestones and times and I can't wait to get a new picture up here of Katia with her "new eyes". They are staying about the same now, not much more improvement but they are better than they were and that is a positive! Ms. Michelle came by to get some papers signed for school so we should be starting up soon with Katia's classes. Probably still just 2 days a week. Hopefully this year Katia will last longer during her classes and have less missed days due to feeling bad or clinic visits. I think this is going to be a good school year for everyone:)

Katia's MAC computer was acting up but after some help from a very kind person who read my plea from the Message Board, things are up and going again and her JumpStart programs are working well. She is there right now.

One thing is Katia can't spend much time in front of the computer, TV or games as her eyes really get affected quickly so she is doing different things throughout the day. One is trying to train Fozzy! We do have him 80 percent house trained and we are working on his social skills when someone comes over. Right now, he just wants to lick them to death and bite their fingers... We are also working on sitting and staying. That is going better than the social skills part.

I was due to have my Mammogram, Ultrasound and MRI today of the breast but due to a few things, it was delayed until tomorrow and Friday. Tomorrow morning Katia has clinic (just for labs hopefully) and then I will have the MRI in the afternoon. On Friday afternoon I will have the Mammogram and Ultrasound. Depending on Katia's IGG count, she may have clinic on Monday for IVIG. We will see. We are praying for good numbers:)

Thank you so much for checking in. Thank you for the birthday wishes. Thank you for your prayers for safe travels as Sharayah goes to college.

Thank you:)

Lots of love, Tracy






August 20, 2007 1:46 PM

Another milestone about to take place....

Well, many of you have followed this site since 2003. You have not only followed Katia's journey but our family's along with it. The Photo Link" at the top of the site that says from 2002 to present covers a lot of the photos (and a lot more) that have been posted on the site along the way.

Sharayah was just 13 when Katia was diagnosed and Tatiana was 9. So they have really grown up before YOUR eyes:)


THEN (2002)



Tomorrow, Sharayah is off to college! Myron will be driving her up there. WOW!! I was added pics to my MySpace site the other day and the girls looked so small back in 2002. I can't believe how much they have grown up and all that has gone on around them and in their lives. I tear up thinking about it.

Katia has been so much the "center of attention" and never has that been taken in any negative sense around here by Sharayah and Tatiana. They too have always had Katia at the center of their lives. Like I shared one time before. When Katia was just born and in her little bouncy seat, we would put her seat on the dining room table when we would eat. "Close-knit family" really doesn't say it all.

Tatiana started high school this morning! Up before the sun and out the door. This is her first year out of uniforms and she was very excited!


NOW (2007)



With my beginning work part-time and Sharayah having been working nearly full-time, it seems like the days of us all being home at one time was getting less and less. I actually work this evening but should be home in enough time to maybe watch a movie all together before everyone heads off to bed. I have said all along I wouldn't cry when Sharayah went off to college (I think I may be wrong on that!) because it is the way it should be. We have seen so many children pass away before they could live their life and just do what we all expect to be the normal stages of life. To me, Sharayah going on to college is not leaving but moving on and doing exactly what she has been planning on doing since 6th grade (very goal oriented child). It is what we have always imagined she would do right after graduating and she is. She has safely reached this milestone and we will pray to God that she will reach many more.

Tomorrow is also my 38th birthday! Do I feel old? Well of course!! My first daughter is off to college, my second is in High School and Katia is showing less and less interest in Barney!

So, thank you for following us on this journey and hopefully this will be a continued journey of milestones and the setbacks are behind us. Katia still has her ongoing treatments but the word "ongoing" in itself is an accomplishment that God has allowed.

Thank you:)

Lots of love, Tracy (AND FAMILY)


***********

August 18, 2007 7:45 PM

Please keep the family of Angel Carter Finger in your prayers. He passed away today after a courageous battle with cancer.

Love, Tracy







August 17, 2007 9:50 PM

Hello:)

Just got in from work and thought I should jump on here and do an update.

Katia's eyes continue to improve little by little. I am eager for her to go to clinic because they don't see her everyday so I am eager to hear their opinion.

Also, her teacher. I am very hopeful this will help Katia have some better sessions of classes with her teacher:)

So, school starts here on Monday for Tatiana, on Tuesday (which is also my birthday) Sharayah heads off to college. My first baby is off to college! WOW!

It seems things have been just a buzz around here lately with so much going on with Katia's eyes and surgery, trips to Miami, Pensacola, my being sick, Myron being sick, Tatiana starting High School, WOW! It is time for a breather:)

I have had to cut my days down at work to two days per week mainly due to school starting back up and my health. Also, Katia needs me. We are really trying to do the eye drops every hour or so and I am also trying to give her a jump start to school so her brain is in gear for classes. She is still very eager to read but she also just really likes to see Ms. Michelle. So does Fozzy! He loves the teacher!!!

I am going to hop over to the Message Board and update on Myron and check the Prayer Requests over there. I am very grateful for everyone posting prayer requests as well as keeping us posted on the updates. Thank you:)

Lots of love,

Tracy







August 14, 2007 2:00 PM

I just was working on some pictures so I added the top one from a Photo Shoot from "Flashes of Hope".

I will work on getting the rest into the Flickr Albums:) Yahoo has just moved to Flickr so this may take a few days to work, the link. Katia's Flickr Albums. If it doesn't start working, I will figure something else out but for now, the Flashes of Hope Pictures are playing in a slide show right above the journal entries. If you are a MySpace user, they can be seen in my Photo Albums over there also. Tracy's MySpace Site. If you aren't a MySpace user, it is a good way to start a site for you and your family, make MySpace a more positive place:)

Love, Tracy (and Katia!!)

PS I am off to my angiogram...





August 13, 2007 9:18 PM

We are watching the "Hell's Kitchen" finale but I wanted to jump on and update. Katia's eyes still seem to be improving although today wasn't too good of a day for her it seemed. Hopefully tomorrow is better:)

I have my angiogram tomorrow so please keep that in your prayers. I will update on that via the Message Board probably once I am back home. Hopefully it can give a closer look.

Myron followed up with this doctor today, well actually 3 doctors. One is for the neck injury a few weeks back. They think the numbness is due to the injury. However they are concerned about the other symptoms so they sent him to his regular doctor. His blood pressure was very high so they sent him home for 2 hours to relax and come back, still high. They want him to get a brain MRI but as far as the blood pressure, just watch his salt intake. So, he will follow up next week.

They also want him to see an orthopedic doctor about his neck injury.

He is still going through physical therapy for his neck and although it helps momentarily, it doesn't really seem to be a long term help.

So, I am thinking we should lay low for a while and just try to get to feeling better. I am sure things are getting confusing for people checking on the site and as much as I try to keep things about Katia, it is kind of all one thing since we are a family.

I know Tatiana is very eager for school to start:) She got a haircut today and decided to get bangs (big move for a girl to do) but it looks good.

Sharayah is in the process of packing for college. She is really really looking forward to this next step in her life.

Katia is just kind of in the middle of all of this going on around her so I really try to get her aside during the day for one on one time. We both need that and it gives us a good chance to center and focus. We are so used to eachother so it is relaxing for us to be able to sit down and chat or she just takes a short nap with me:)

So, thanks for your prayers and taking the time to check in.

Lots and lots of love,

Tracy



***************


August 11, 2007 12:28 PM

So, an update on Katia's eyes. She is opening them a little more today so that is a good sign:)

I posted Katia's counts from the 7th of August below on the August 8th update. You can see there was a great improvement in her WBC count so maybe stopping the Septra and switching her to the Pentamindine Infusion may be a good move.

I really really pray this worked for her. That is what I fell asleep doing was praying actually. Just for Katia, Myron, my health, finances, a lot of things. Plus I go through prayer requests a lot in my mind during the day, kids I used to follow or adults that have since gone to Heaven, I pray for their families and just imagine how things must be now for them. I pray for those who will be diagnosed in the near future and ALWAYS I PRAY FOR A CURE!!!

I think a lot of us who follow different people fighting for their lives and hearing how their families are so affected continue to pray throughout the day as people come into your mind. I always pray for people as I visit their website as well or read an update on them via the Message Board or email. Everyone can use prayers.

So, hopefully we will have a quiet Saturday.

Myron is still numb in his left arm. If things get worse or change suddenly, he will go to the ER here as they couldn't do an MRI at the Broward Regional Medical Center. They think he really needs an MRI of the brain.

Other than that, he is scheduled to see his doctor on Monday.

Thank you for your overall prayers.

I also updated the "Katia's Story" part above so it is always a good summary of Katia's journey from the beginning to basically now. It is always a good place to start if you are new to the site.

Lots of love,

Tracy









August 10, 2007 11:53 PM

Hello:)

We are home from Miami. The detailed updates from the trip are on theMessage Board but Katia did very well and I really think I see some improvements with her eyes. She isn't really opening them much but they said she would be sore for a few days.

We go back on 9/11 for a checkup on her surgery and to see if the cauterizing of the lower ducts is helping to keep Katia's eyes more moisturized. They were able to put a temporary plug in the right upper eye duct but the left upper duct wouldn't allow the plug to fit. So, if the right eye does better than the left

the idea would be to permantly cauterize the upper ducts as well.

On the next appointment, we will also test and determine if Katia needs glasses.

Another thing that happened while we were there is while the two surgeons were talking to us after the surgery and letting us know how things with surgery, Myron became very light headed, broke out in a cold sweat, felt nauseated and had to be taken to sit down. He looked really pale and pretty well had me scared but then Katia came out of recovery and since Tatiana was with us, she stayed with Myron and I went with Katia.

Myron came in about 20 minutes later feeling better but was worried as to what had happened. His left arm and side were numb and tingly feeling.

Later that night, he was feeling worse but he took some Bayer and fell asleep.

But, this morning, he ended up going to the ER (which was right behind the RMH house we stayed at in Ft. Lauderdale) as he still felt bad and didn't want to have something happen on the drive home.

They took him right in and ran blood tests, an EKG, ECHO, and a CT brain scan.

All appeared normal. They want him to follow up here with his doctor (appointment set for Monday and they have already been filled in on what happened) and they think he should have a brain MRI and see a neurologist, I agree.

My opinion is this could be two things. One which is nerve damage from the neck injury at work when a wheelchair bar fell down and hit the back of his neck and the other part (cold sweat, dizziness and nausea) by the fact he waited until after Katia was in surgery to eat (so 5 hours after he woke up).

So the prayer is this isn't anything serious with his heart or brain AND that they find out what caused it so he doesn't continue to feel bad or have to keep worrying.

I also ask you to pray for a friend of ours, Rosa, who will be having an ovarian cysts removed on Tuesday. She has been a good friend for many years who we had lost contact with for about 10 years but she located us via the internet about a year ago.

Also, something cool that happened! A friend Myron went to basic training with and to Iraq with during Desert Storm and Shield actually ran across Katia's site yesterday. We had searched for him for years (since 1992) and he had searched for us. His name is David Smith which made it next to impossible for us to search him down. And he had been searching for us through the years. So, now we are back in touch! There is actually a message from David in the guestbook from August 9th:)

That is when the Internet is a GREAT TOOL to have:)

So, that is the update:)

Tatiana is very eager for school to start (August 20) and Sharayah is beyond eager to get to college (August 22).

In the spirit of finding friends, any good stories to share about a long lost friend you have recently found? I think reunions are awesome!!!

Love, Tracy

PS I will post Katia's counts tomorrow, they aren't in front of me but good news is her WBC has gone up to over 7.0. We think stopping her Septra was a great idea. She will instead receive a Pentamindine Infusion each month and still stay on the IVIG Transfusion every 4 to 6 weeks, stay on the Prograf, Steroids and the rest of her meds. Hopefully this WBC stays at least above 3.0 so that is an answer to prayer if you look back in journal history. It had been steadily dropping since January.








August 8, 2007 12:47 PM
WBC 7.8
HGB 14.2
PLT 387
ANC 4500
IGG 785

BIG IMPROVEMENT!!!!

Hello:)

I am sorry I didn't update yesterday after clinic. Things went well and I will try to post her counts later.

We are off to Miami. PLEASE pray for a safe trip without the down pours that we expect. Summer in Florida is rainy and last trip to Miami was FULL of rain:)

Anyway, I will update via the Message Board even this afternoon on the drive actually.

I can do that via my phone.

Katia is nervous but anxious to get things fixed.

I have a personal silent prayer request for myself. I will share more as prayers are answered:)

Lots of love,

Tracy and Katia









August 6, 2007 11:00 AM

As you can see by the time, I am trying to "lay low" and not doing too too bad at it:)

I wanted to post that Katia's eyes are worsening so the surgery timing is perfect and I am really glad it isn't later.

I really feel this is going to help. She goes to cliic to prepare and surgery is on Thursday morning, first thing. I will update via the Message Board (link is at the top of the page) during the days I can't get to the computer.

Also, a mention here.

Katia's Transplant Team is wonderful!!! They have helped us with so much personally as well as with the Foundation. We work hand in hand with them.

Here is a link to check out about an upcoming marathon one is participating in with her daughter. Please drop Mati's Marathon Page! and read about what they are doing. Not being an "athletic" type of person, I so much admire those who take place in these events. It takes a lot of training, effort and heart and Mati and her daugher has all of this and more:)

Love, Tracy


**********


August 3, 2007 6:07 PM

I have a couple of things to post actually. I know I have been using the Message Board as a primary place for prayer request and updates on things not concerning Katia's health but I have a few things for here.

First, I want to ask your prayers for Myron's Mom. Myron's Mom is like my Mom to me. She has just always been a HUGE part of my life since the day I met her.

Her Aunt (who raised her from the age of 4) is on her deathbed. I know this is just so difficult for Myron's Mom as well as Myron. We call her Tia Yita and she has just always been a wonderful, compassionate, loving, Christian woman and another person that has just always been so sweet to me and brought me into the family since day one! I know this is difficult on Myron as he can't be home with his parents and say his goodbyes (they live on the Bay Islands of the coast of Honduras). So, please keep all of the family in your prayers.

Also, a couple of weeks ago, there was an infestation of African Killer Bees to go to the Island. Myron's parents lost 2 dogs that were just swarmed down on and killed by this swarm (I keep wanting to say "herd" as it was so bad). The swarm had taken home in the bottom of Myron's parent's house. Myron's Mom was stung a few times as well as others in the area and their small Maltese Dog also. The two dogs they lost were rotweillers and they were very good guard dogs but originally came from a puppy we had given them about 10 years ago. Just weeks before that, they had lost 2 other of their dogs (German/Rottweiler Mixed) to vehicle accidents on the main road in front of their house.

For those of you that have pets, you know how hard it is to lose one but these killer bees attacked these 2 large dogs right outside their front door while Myron was on the phone with his parents. They said the dogs were just engulfed in these killer bees. It really put a scare in us here because the resources to fight these types of swarms are just not there and we were very worried for Myron's parents, nearby children in a Children's Home there and others in that area. It was very scary.

The swarm has been smoked out of the bottom of his parents' house but the swarms are still nearby and on the Island and have basically killed the regular types of bees on the Island. We have called some different agencies in the US to try to get ideas on how to get rid of the swarms as well as what medically can be done if someone is stung and these agencies were very helpful and the information was passed on.

Okay, now to Katia....

Katia told me this morning, in these words, "I think this surgery is something I should do. My eyes hurt so bad and it can't make them more more bad. I really want my eyes fixed."

She had come up to me and kind of tugged on my sleeve and wanted to whisper that to me. I know she is nervous. She has overheard me say the words, "scraping of the corneas..." and I regret that. She does know what the surgery will consist of. She also knows she gets her Propofol to go to sleep which she is happy about.

I look at the picture of Katia on the border of her page (the one in the Pink Princess Dress) and she was just so much happier there. Her eyes were already giving her so much troubles then I didn't think it could get worse. I look at her now and I just really really pray this surgery gives her BIG relief. She needs it.

I went down and registered her for school although she doesn't attend school. She has to be registered regularly and then the HomeBound Program takes over. Anyway, some of the school people know of Katia and ask how she is and do I think she will be able to attend any classes during the year. I always hope so but the main thing is for Katia to be healthy and happy:)

I do really want her to be able to read. She wants to so bad. She sounds things out to a certain point but she doesn't retain the words. She does understand the concept of adding small amounts and if fractions come in the form of food, she understands what it means to divide something in half:)

We want the best for Katia as any parent would but we also know how very lucky we are to have her and the fact she hasn't relapsed.

Please visit the Message Board to see some very recent prayer request concerning Angel Skylar-Jade and Alexia. The links are there also.

Lots of love,

Tracy (and Katia)










August 2, 2007 10:30 AM

Okay, I have to come back later and add some pics from yesterday but we went to SeaWorld:)

If you have seen the weather here lately, it was not a good day to go. We had tickets donated and the only day to use them was August 1st so we waited around until nearly 4PM but it just wouldn't let up. We figured maybe Orlando was better...

It wasn't.

We did get in to see 2 shows, on of which was the Shamu Rocks show and it was wondeful.

Katia was pretty much covered up in her wheelchair, hat, poncho, sunglasses... but we got soaked!! We finally gave in and got ponchos there which everyone had and it seemed the whole place was full of blue ponchos so we couldn't take any chances on getting seperated. Tatiana and I got behind as we are much slower than Myron and Sharayah and suddenly we realized, everyone looked like Myron and Sharayah. Finally we saw 2 people with a wheelchair! That was them!

We were literally ankle deep in water so we headed home. But, we took a chance on stopping at Guest Relations and the girl happily gave us tickets to use any day between now and December! That made our day because it made Katia's day!!

She had really looked forward to this trip and wanted to see and touch a dolphin. We saw rain. I think all of us really tried to keep a good attitude and find the humor in it, which we did but we found the humor much better after we got in the car headed home.

On the way home, since our phones had to be put away due to the rain, I finally checked on emails and voicemails. One which is a quite concerning voice mail but that can be found on the Message Board under the update for today from me.

Thank you for your prayers and our plan today is to stay very very very dry. It is still storming here though. We have gotten a lot of rain.

Please pray for those families affected by yesterday's bridge collapse. That was horrible news to hear on the news last night. Tampa had its Sunshine Skyway Bridge Collapse many years ago in May of 1980. That is our big bridge over the Bay and many people lost their lives (35). My dad, myself and my sister had just crossed over it earlier that day.

Thank you for your prayers and please pray for Katia to stay well and healthy for surgery on the 9th. She goes to clinic on the 7th to have her Port accessed, labs and then we leave to Miami on the 8th. Right now she is the first scheduled surgery for the 9th.

Love, Tracy


***********

July 31, 2007 5:23

Hello and Happy Last day of JULY.

For some reason since I know August is going to be so busy I just want it to get here, plus it is my birthday month:)

I haven't checked the Board or Guestbook yet but due to emails I figure I better get on here and update about my doctor visit. I am going to have the postings on me on the Message Board as it gets a little lengthy and confusing and I really want this page to be about Katia and her tests, upcoming surgery, etc.


Katia is just being Katia today. She is more dressing herself these days and she has these little cotton dresses that are really soft and comfy (I should get a picture). Anyway, one is red with black polkadots (of course) and she has a green one. She is in the green one today and did her own hair and put on her own shoes and socks. She is getting to be more independent in getting herself done:)

Hopefully the bed pads arrive today (it is storming here-has been day after day) and they can get them on their beds tonight.

Lots of love,
Tracy








July 30, 2007 5:00 PM

Hello there:)

Katia is asking 101 questions about eye surgery. I don't think she likes those 2 words together but she doesn't seem scared, just that she wants to know what they are going to do and make sure she will be asleep while they are doing it.

She is a brave little girl, shows me up a lot:)

I read all the post about ideas with Tatiana and her back and right now we are going to try to Memory Foam Matress Pad. I am very much looking forward to giving it a try. I found them online so it is due to come in tomorrow. One for Tatiana's bed and one for Katia's. I hear some upcoming "ahhhhhhhhhs".

Thank you so much for your prayers and for your messages:) I think we are a bit more nervous than Katia. Any surgery is on the scary side but I feel like once she has her checkup and we have the doses set up for her "Happy Juice", things will go smoothly and I pray she will get a great deal of relief! That is the prayer:)

Love, Tracy











July 28, 2007 9:00 PM

Hello:)

So, we got back good from Miami and I have been wanting to sit down all day and do an update but things keep coming up. I wanted to be able to really put my mind to this update.

So, the trip down was good. We actually did not get a Ronald McDonald room due to no vacancies coming open so I called the place "we stayed at last time" (I will get back to that) and lined up a room to stay in. Didn't plan on that expense but they gave us a lower rate and I knew the rooms were clean and the hotel is nice (Fairfield Inn).

So, we knew the way there as it is right off the interstate. After what seemed to be a shorter trip than I thought, with no problems in traveling (Myron was driving), we pull into the parking area. This hotel is through the parking lot of the Marriott. We drive around back and all of the sudden, we see a demolished (yes demolished) hotel!!! There was no more Fairfield Inn. I am thinking, "Who did I talk to then that made the reservation?" So we ask a guy in the parking lot and he just told us that was no longer there. Okay?

So, I call the phone number I had made reservations with and come to find out, we had passed the one we had reservations at about 20 minutes before we got to this one. Both are near airports which is why they didn't say anything when I had asked, "This is the one by the airport, right?"

Okay, so we get pretty turned around in Miami, get lost a couple of times BUT the good news is, we got there to a very clean and welcoming room to stretch out in!!! YEAH!!!

Katia was already nervous about the eye visit but she went to sleep rather quickly.

Next day, we go to Bascom Palmer, up to the floor we needed to go to and go to the appointment desk. What was different about this visit than last year's visit was, THE DOCTOR WAS THERE! Remember last year, we had an appointment but the doctor was gone, on vacation.

So, we signed in and things moved pretty quickly. We were called right in and the doctor talked to us, read the letter sent from her doctors here, glanced over her meds and was just so very sweet to Katia (Dr. McKeown). He was very thorough and wanted us to go right up to see a cornea specialist, Dr. Karp. So, we did. Again, things moved along very well and we were soon in to see her. Myron and I both felt very good about things. Katia was doing well and being very cooperative!!!

Between these two offices, we did the eye drops to dilate her eyes and numb them. GOOD IDEA!

When Dr. Karp came in, we liked her from the beginning. She had a team of doctors with her and she just really gave us a sense that she was informed of Katia's case and had a good idea as to what was causing the problems and how to help ease Katia's pain.

So, the idea was to remove some filaments that are on Katia's corneas which are causing her a great deal of irritation and pain. They can be removed from the corneas and they tried to do it with a little instrument but Katia got scared and it isn't something you can have her jump as it is a sharp tool.

Her eyelids and under eyelids are extremely dry and irritated and probably effected by the same problem.

Due to the dryness, they want to insert Plugs into Katia's eyes to help her retain more moisture.

So, the idea is to have eye surgery on the 9th of August in Miami with both of these doctors. They would scrape the cornea surfaces, remove the filaments, insert the plugs, clean and scrape under the eye lids, do a thorough exam checking for any signs of cataracts and glucoma (both are side effects of treatments she has been on) and hopefully Katia would be able to do all of this outpatient. She would of course be asleep through it all.

I am definitely going to be doing some research. I am really wanting to know more about what causes the filaments and the likelihood of them coming back. Also how well the plugs can possibly work and how often they would need to be checked up on and/or replaced.

The problem is a lot of this is caused by the GVHD which is still there and also some of the problems with her eyelids are caused by the long term use of the steroids which are still being used and will continue to be used.

If this gives Katia comfort, it will be a success. It may have to be done over and over but Katia's eyes are such a discomfort for her and this whole visit to Miami gave us something much needed, a hope that her discomfort could be helped. We all liked the doctors and really feel assured by them and their eagerness and willingness to get her in as soon as they can both be scheduled together for surgery.

So, prayers are working:)

Thank you so much for checking in and for keeping her in your prayers.

Also, her eye test to check her ability to see didn't go very well but the thought is she may have limited vision also due to all of this which could explain a lot of her reading issues as well as her attention span with school. So, hopefully all of this can be helped with this surgery. That is our prayers.

I will look into things and share them as I go along and also add them to the Informational Links page as I am sure others can benefit from any research I can do. If you have any info, please feel free to pass it on to me also.

Lots of love, Tracy


******

July 25, 2007 7:00 PM

WBC 2.38 (up a bit)
HGB 15.0
PLT 345
ANC 928
Creatinine Clearance 157 (good)
FK506 (waiting)
IGG (had IVIG dose today)

So, we are back after quite a long day. THANK YOU AMY FOR THE COFFEE!!

First, we were a bit late but got going as soon as we arrived. After seeing Katia's labs and the fact her WBC count just isn't recovering, we decided to change her from the Septra doses she takes Monday, Tuesday and Wednesday each week to Pentamindine Monthly infusions again. Hopefully this will show some improvements. Her ANC is pretty low for someone not on chemo.

Also, we gave her a boost of GCSF to raise her counts for the trip to Miami. Hopefully she is "good to go".

What else? I have a few silent prayer request for some families and people I keep up with. They may post on their own but I do know they could use your prayers.

I personally am still waiting for my labs from blood tests the other day. I am a bit concerned about them with the delay but I am praying it is just a delay for no reason.

I do feel a bit better so I think we have gotten some of the medicine doses fixed. I felt really draggy for a while there. I thought I was never going to feel totally awake again but I do:)

Thank you for your prayers.

Lots of love, Tracy










July 25, 2007 8:55 AM

We are off to clinic this morning to get an IVIG transfusion. I am very very curious to see what Katia's counts are. Mind you they have been on a very downhill slope (her WBC) for quite some time now. I will list them in a bit. I am trying to pull up the last few WBC over the past few months.

Anyway, Katia is always happy to go to clinic. Isn't that funny? She is into going to the doctor. No, she really loves her doctors and nurses and we know they love her and always have her best in mind.

I was talking to one of them the other day about how, socially, Katia is quite behind. She is more like a very little adult. I was thinking about she has never really had a "childhood conflict" with kids her own age which is probably why she doens't know what is acceptable and not. She still breaks into tears when things go wrong or she doesn't get her way. Although we are all very understanding of this, it is one of those milestones that kids go through that Katia has missed out on. Seeing her immune system has not picked up, she can't attend the Cancer Center Meetings or go to preschool and such. I am hoping the hospital can kind of pick out a group of kids in her situation also that they can mingle. Other than that, I have a few in my head that I think she would do very good around.

We all want to see Katia grow physically but are fine with the fact she will most likely stay very small. BUT, we want to see her especially grown emotionally, socially and intellectually as much as she possibly can. Katia is a remarkable little girl and she has a lot to share but life gets pretty overwhelming to her much more now than usual and I feel like she needs a good "release".

When Sharayah leaves and Tatiana gets back into school, that is going to be one of my big concentrations. I miss the fact of knowing I will be home but I am working on that. Both Sharayah and Tatiana used to love to go to the mall early in the mornings and just run around before it got busy and the stores would open. I think that would be good for Katia to do and maybe we can meet a couple of little friends there. The mall is very open and clean where I work and I watch it in the mornings when I work. The only people there are basically employees and people that exercise by walking around and doing group exercise classes.

Prayer request today? PLEASE PRAY KATIA'S WBC HAS GONE UP SOME! Other than that, we will probably need to do a bone marrow aspirate and check her bone marrow closer to see why. I am not really sure what the idea would be to do if it appears to not be making WBC on its own. I haven't even thought that far. I am still in the stages of praying:)

Lots of love, Tracy

WBC Counts

7/2 2.02
6/7 2.13
5/17 2.90
4/19 3.10
4/3 2.83
3/17 5.18
3/10 6.90
2/26 6.20
2/24 7.38
2/19 7.25
2/12 5.18
1/31 4.05
1/10 5.73
1/5 7.96








July 24, 2007 10:48 AM

This is actually an entry from me on the Message Board but I figured I would go ahead and put it here also. It is in response to a previous prayer request for our family a few days back on the board.




Thank you so much for your recent prayers. God works in mysterious ways and I think when one keeps their eye opened waiting for a response, no matter if it is what we planned on or not, we will see His response.
I am 1/2 way through some of my recent medical tests. My neurology tests are done and I follow up with him on the 31st. My OBGYN tests are 1/2 way done and I have the mammogram, MRI and ultrasound of the breasts on the 9th of August. Then I follow up about that.

I am really amazed as to well this Board is working and how many prayer requests are being posted on here. That is truly a blessing and I am sure is appreciated by everyone posting. Please pass the Board Address along.

Katia is not really looking forward to Miami, at all. She is looking forward to the drive (junk food) but that is it really. Myron and I are really praying that this isn't just a typical consult but that we leave with some answers or even a game plan.

I talked to one of Katia's doctors at length the other day and although Katia has come through so much she has a lot to face each day. Her eyes really slow down her ability to move on with reading and going places. Her eyes slow down her ability to get off the steroids which has totally stopped her growth (since 2004) and is causing more and more destruction of her bones.

I think we always try to focus on the positive. Katia is cancer free. Katia is here with us. Katia is happy and a blessing to each of us in so many ways. But, Katia is physically, mentally and psychologically showing a lot of signs of wearing down and losing her momentum forward.

People always worry about side effects of things going in to treatment but at the same time, you are just trying to keep your loved one alive. We knew a lot of the side effects in the beginning but as things have moved along and more and more drugs and treatments have been added to Katia's lists, the side effects are growing. I know there are more to come but right now, here is what we are praying for.

1. Katia to get relief with her eyes.
2. Katia to get off the steroids and stay off.
3. Katia's skin to clear up
4. Katia's immune system to produce something.
5. Katia's mood and temper to be more managed (this is due to steroids and just exaustion I think)
6. Katia to grow some. We know she is going to be "little" and for the most part, growth hormones are not an answer for Katia as it can do more harm than good. At the same time, with the condition of her bones, she can't go through too much growth. This is a touchy request I guess.
7. For Katia to move forward in her schooling, to be able to read.

That is a lot!!

Okay, let me add two more prayer request. These are for Tatiana. Tatiana has gone through pain with her back for years and years and years. She goes through added amounts when growing. We are taking a different approach, a more simple approach to see if things can give her comfort. One, to get her off the twin bed she sleeps on. She and Katia have bunk beds (they aren't put together anymore) and the matresses are ridiculously (sp) hard!!! I think as Tatiana weighs more, it effects her back more. We have tried the bed waffles, padding, putting down extra blankets and comforters, etc. I was told to maybe try two air matresses for those beds which may be a perfect idea! Please pray we can work something out.

The other prayer request for Tatiana is as she heads into highschool. Tatiana has a heart of gold and has put up with a lot of changes here and there throughout Katia's treatments. She really hurts when Katia hurts and vice versa. Katia doesn't like that Tatiana is going to high school because she thinks Tati (our nickname for Tatiana) is not going to like it. Tatiana is very much looking forward to it but the school is much larger, has more walking and a lot more work load. Tati is Katia's primary playmate and she is very very good at it and has a LOT (I mean a LOT) of patience!!! But, Tati is going to have to spend more time on homework and school lessons.

We pray this transition goes smoothly.

Also, someone mentioned the phone survey job at home. I thought that would be fantastic!! I did go online and for some reason I don't qualify????? Anyway, I emailed them. Maybe it is my zipcode or something because it was some very vague questions.

The dog grooming idea would be great but I have butchered my fair share of dogs in the past trying to give them haircuts. Fozzy hopefully can get to a groomers and not into my hands

I can't sew. When Myron's mom visits, she is always bombarded with things that need to be "taken up" fixed, a button, etc. I know this sounds bad but I was raised by my dad and everything was wash and wear, simple cooking, etc. As I told Myron, I basically did not pick up on a lot of those skills growing up but I can cook now We all know I can clean. I can do anything on the computer. I type seriously fast (near 100 wpm) and I am very responsible.

Katia can't have pets or other children around here. Fozzy gets about 10 baths a week, no joke and is only here because Katia really needed the boost to her mentality and happiness so her doctors gave in.

I did used to babysit in the past when Tatiana was little. Due to some medical issues she had, she couldn't go to daycare so I stayed home and babysat.

I really appreciate the ideas though. Thank you

I am so LONG WINDED lately.

I do have to go because my left eye is like a faucet that won't turn off right now? Not sure why but it is driving me crazy!

Again, thank you for all you do. Thank you for your prayers for us, all on the site and thank you so much for visiting and posting on the BOARD. YOU are making the board a success!!!!!

Lots of love, Tracy

PS If you haven't been by the "Staying In Touch" Message Board please drop by. There is not registration required and you can post on it, read other post, respond to others, etc.











July 21, 2007 10:34 AM
Looking back....

Hello:)

When I started this website about Katia back in 2002 was it, I had taken the time to go through a lot of other sites first and see what Caringbridge was all about. At that time, Katia was in remission following her first treatments. I have always been one to want to know as much as possible about things but even more so when Katia was originally diagnosed with leukemia. To me, there was no better source of information and support than to reach out to others going through the same situation. I read through pages of others in the same phase of treatment as Katia, had already completed treatments, remained in remission, relapsed, and just realized that Katia's health wasn't something we could really plan out. Another thing I learned very quickly is I could learn a lot from a lot of different sources not just people facing leukemia or even cancer. I learned a LOT very quickly about patience and what to be able to expect and not expect. I learned that basically I had to gain control of an otherwise uncontrollable situation. How would I do that? Reach out to learn, reach out to teach, reach out for support, reach out to give support and most of all, continue to grow in faith. None of us are promised tomorrow. None of us know when someone in our family could go from very healthy one day to being tragically ill the next day. The earlier I realized that, the better I could cope with what Katia most needed, a steady, calm and informed parent that was not only open to changes but also open to receive information and weed through it as best as possible to make informed decisions.

I followed one child in particular whose case was very very similiar to Katia's. This child was about a year ahead of Katia as far as being diagnosed. I remember when the child relapsed, I thought, "Wow, Katia could still relapse?" So, in my head I counted the months ahead and set a date that if Katia remained in remission past that date, things would have a much more positive outlook. So, what brought this up today? July 21, 2003 was that date set. Katia had remained in remission and all tests were looking really good. In a way, I felt that I could let my guard down some. That summer, we had a small pool in the back yard and a swingset and Katia's hair had grown back out. I remember I would just relish each day and she so much enjoyed going outside and playing. She was bouncy, happy and looking great. She had no signs of having ever been treated for cancer. Her bone marrow aspirate showed ZERO PERCENT leukemia cells as well as her spinal fluid and blood. I look at those pictures a lot even today, from that summer. I remember she started having trouble with her stools, her urine was "off" somehow but we were working on potty training and I thought, maybe that was causing things to change with her.

Come the end of July we had gone on a small 3 day weekend up to High Springs Florida. Somehow over that trip, Katia seemed to be more "frail" than she had been and a flag of concern came back to me. BUT, all tests were telling me she was doing super. I really didn't think anything big was going on but I just thought maybe she was going through side effects from some of the chemo drugs she had gotten. Her right eye was looking good, her skin color was good and her labs were in the perfect ranges. I told myself, "Drop it Tracy, she is doing really well."

Mid August 2003, I got a gut feeling that her outward appearance and her labs were not accurate as to what was going on inside and I mentioned this to her doctors. They had always been very respectful of my feelings and just the respect of a mother's intuition. They ran more labs and again, all was well. I would always ask Katia to let me know of any headaches or if she was feeling bad. This picture was taken at that time.

August 2003



She looked great!! A few days after that picture was taken Katia came to me and said she had a bad headache so she kind of just chilled that whole day. I spent the day with her and she was awake all day and we enjoyed some Mommy and Daughter time watching TV and she felt better by that evening. But each day was bringing a new problem. She stopped having bowel movements and her urine had a weird smell to it. She was cranky and couldn't get comfortable. We had a regular clinic visit coming up so I put Emla Cream (numbing cream) on her so, if they thought necessary we could check her bone marrow and spinal fluid. I needed know this wasn't anything serious. That was August 25 I think. We went to clinic and her labs were all within the perfect range (rarely do labs look as good as hers did that day). But, I told them I just felt something was wrong so we planned to come back the next morning to check her bone marrow and spinal fluid. Back then, we didn't put Katia to sleep to do this, we just tried to numb the area. It would take about 5 or 6 of us to hold her still and Katia hated the thought of the procedure. But, it needed to be done. Next morning, we show up and it was the most difficult time we had ever had getting Katia's samples drawn from her bone marrow and spinal fluid. She ended up with a really big bump on her back because she moved during the draw. Her face was red, puffy and had little petichae all around due to her struggling. I felt so bad. We waited while they looked at her spinal fluid under the magnifying glass. That is just a preliminary look before it goes to the lab. It looked good. Katia's spinal fluid appeared to be cancer free which in Katia's case, her spinal fluid was a big part of her original diagnosis.

Katia and I left and headed home. I felt bad for her thinking I had jumped to conclusions but at the same time, I was glad to have a cleared bill of health. I came home and updated the site. Katia went to bed. She felt horrible and like the last few days she had spent in my bed or on the sofa, she found herself right to my bed.

Then the phone rang... Katia had relapsed. Not a little either but 93 percent relapsed. That meant the agression of the cancer was huge and something had to be done right away. She was scheduled to start treatment the following morning, would need to reach remission and have a bone marrow transplant.

Originally when Katia was diagnosed with leukemia, she had been in the hospital a few days dealing with meningitus following an embolism surgery for the tumor on her eye. Myron had just stepped out to take Sharayah to an appointment and one of my friends was there with me and Katia. I had to call Myron and tell him over the phone that Katia had leukemia. Again, Myron was at work this time so I had to call him with the news of Katia's relapse. Sharayah and Tatiana weren't home from school yet but I knew Myron and the girls would get here all near the same time and I tear up now thinking how I knew then that our lives were about to take an abrubt turn. I knew a relapse cut Katia's chance of being truly cured way way down. I knew the possibility of even finding a marrow match for Katia would be next to impossible. I knew this time around the treatment would be worse and radiation would be a part of it. All of this went through my head and I just kept walking in and checking on Katia. I didn't tell her but I do think she knew by my actions that something was wrong. She knew what we had gone to clinic to check that morning and she knew phone calls from doctors were about results or problems.

I am going to sum this up by saying the details to this time in our lives can be found in the journal history, August 2003. But, when Katia found out her cancer was back, she just got upset that she would have to leave home and asked if her hair was going to fall out again. She wanted to pack her stuff for the hospital so I let her. I just laid out her little suitcase and she was putting everything in there but clothes.

When the girls got home, Myron and I sat down with them and told them Katia had to go back and that her cancer had returned. They took it very badly because they too knew her chances of a real cure had just gone way down. They had gotten very used to Katia and I being back home and things returning to a semi-normal level around the house. We all did quite a bit of crying, praying and then I just started preparing my bags for the hospital. I cooked that night because I thought it would be a few weeks before I would be back home so I wanted us to all sit down at the table together.

In the morning, we headed over the bridge to St. Pete to start over by getting a broviac put back into Katia, running a lot of labs and starting IV chemo as well as spinal chemo right away. Little did I know it would be 336 days before Katia would come back over the bridge. Little did I know how truly difficult finding a match would be and little did I know how so many people would step forward to help by registering as marrow donors, helping put together a LOT of marrow drives, doing fundraisers and just an outpouring of mail and compassion to show they were there for us. I was in awe of this and so appreciative. I had never seen anything like that before. Katia's story was on all the news channels pleading for people to register as marrow donors, donate blood and blood products and to pray. I had never heard the words "pray and prayers" so much on the news. I knew Katia's story was going to make a real difference not just for our family but for others as people really opened their hearts to her situation and wanted to help.

Life became a whirlwind of information, decisions and a lot of hurry up and wait as a match was not being found. Katia had quickly responded to treatment and reached remission. She needed brain radiation and radiation to her eye to assure us that the tumor in her eye would be cancer free. Due to its location on the optic nerve it couldn't be removed. Katia had totally totally stopped eating and drinking and was on IV nutrition. We made the hospital room (rooms) as comfy and homey as possible and Katia handled being "copped up" perfectly. I was amazed that she didn't complain as most of our time was spent in her room. She had numerous reasons that made her unable to go to the playroom or out in the halls much but she could be free to roam in her room (hooked up to an IV pole). She would go to her door and without stepping over the threshold, she would call different nurses or other patients over to talk to her. I was very proud of my little baby:)

In the "outside world", drives were continuing and people were sending so much mail and packages, there were daily wagon deliveries of mail. Finally in December, word of a match came to us. There still needed to be more testing but it gave us hope and also a date in our minds of when transplant could take place. During Christmas, Katia went through her radiation treatments and I felt like we were finally moving in right direction. We had been in the hospital for 4 months straight basically trying to hold onto Katia's remission and keep her body nourished while we waited for a match. It was said she would have transplant in January so that is what we aimed for. Then, an x-ray done because of a cough I think showed an "area of concern" in Katia's lungs. A CT showed the area seemed to be fungus related. This was bad as she couldn't have transplant with this fungus in her lungs and her chances of survival again were getting stripped away. To make sure of the diagnosis we had a lung biopsy. It showed asperigillus and the happy talks of transplant soon seemed to stop and suddenly, we were looking at another life threatening surgery needed to be done. It appeared we would actually have to transfer hospitals up to New York to have the surgery and transplant done elsewhere which would be heartbreaking for our family but if it was necessary, we would do it.

The newest diagnosis was again on the news and the prayers and support were just amazing, again. There was such a sense of community support. There was a lot of discussions going on and ideas as well as some real disheartening talks about Katia's outlook. But, I knew her doctors would do everything possible to see Katia through this and I had comfort in that. I had always told them to be totally honest with me and if they were worried, let me know. They were always very open with me.

My worst fear at this time was the delay would open the doors to relapse.

The lung surgery was discussed and it was decided to keep her in St. Pete at ACH to do the surgery. We were so relieved at this news. Surgery was successful and after a stay in ICU, Katia was back up on 2SW recovering and a new date was set for transplant. Katia's 4th birthday was approaching on January 26, 2004 and we had just moved into her actual transplant room. Transplant was set for February 5, 2004.

Okay I said I was going to sum this up. It is hard to really sum up Katia's story because details matter and because I think each step kept one foot going right in order for a reason.

Katia had her transplant, a 5/6 cord blood match. She had been put on antifungal medications due to the fungus in her lungs and the first few weeks were full of anxiety and anticipation as well as hope. We knew GVHD (graft vs. host disease-rejection) could take place. We knew Katia wouldn't have any immune system and we also knew she would need numerous blood and platelet transfusions. She was on quite a few medications, around the clock IVs and we were counting our days toward the first goal of 30 where we would check to see if the new marrow was being accepted and producing cells. First tests said YES:) Things were going well.

Each day went by and Katia still wasn't eating. She went basically 8 months I think without eating and just thriving on the IV nutrition. GVHD had started and Katia was started on steroids and her immunosuppressing drugs were adjusted. Katia seemed to respond well and the GVHD stayed under control. After 9 months plus of Katia being IN THE HOSPITAL, she was released to the Ronald McDonald House right behind the hospital. Freedom!! It was so nice to be able to take her outside and the walk over to the Ronald McDonald House was shared on the news to update Katia's story. It was just a big step forward for Katia who had gone through quite a few obstacles, had a lot of people praying for her and was given a second chance at life from a complete stranger who had donated her baby boy's umbilical cord:)

The Ronald McDonald house was so welcoming. We could cook in a private kitchen, eat at a private table, watch TV in a private living room and sleep in a real bed!!!! The Ronald McDonald House had become home to 2 bone marrow transplant patients. It is quite difficult for a lot of people to understand just how much these patients need everything clean, sterile, quiet but seemingly with lots of freedom. The other Mom and I got quite close and sadly, her child passed away. It was heartbreaking, very heartbreaking. He too had problems with GVHD due to a better suited marrow donor backing out and a less of a match used as a desperate attempt. I think of him very very often.

Katia had her ups and downs which are in the journal history but 336 days after going over the bridge TO St. Pete, we were on our way home, back over the bridge to Tampa!!!

Now in 2007 (the in between can be found in the Journal History section), Katia is 3 and half years out of transplant. Although she is still on steroids, still battling GVHD, has shown different side effects from treatments and transplant, remains on the antifungal medications for her lungs and still has no immune system, there is hope. I still think Katia's story shows not only how truly miraculous her journey has been but how truly compassionate and caring others have been which is PART of this journey. Each prayer is part of our hearts. Each person who reads or shares Katia's story helps to raise awareness to a very important need, sign up as a marrow donor and regularly donate blood and blood products. Every person that gets on the registry or donates their child's umbilical cord can give hope of finding a match to anyone seeking a match. It could be a newborn baby, a toddler, a school age child, a sister, a brother, a husband or wife, a father or mother, even a grandparent. It is like a lottery for life. Katia is 7 1/2 years old now, 5 years beyond her original diagnosis. Although she is uncomfortable a lot mainly due to her eyes, she is happy. As I type, she is giggling and playing with her little puppy, Fozzy. She is eager to learn to read. She loves her family dearly!! She has a huge heart for anyone that feels bad or is upset. She is also very smart about her own health, her medicines, and her disease. She knows that some people she has fought alongside are no longer with us. We know this as well. We are blessed to have Katia with us and hopeful she will continue celebrating birthdays and touching lives as each year passes. She knows a lot of people check on her and pray for her. She is very appreciative. In many ways she is much more mature due to all she has been through. At the same time, she acts like a typical 7 year old many times. She acts like a typical little sister. She enjoys playing a LOT and thanks to steroids, she enjoys eating a LOT, sometimes too much:)

She hasn't grown since transplant so she is still 3 feet tall but she is a bubbly little girl with a heart of gold and lot to live for. If you have followed Katia's story since the beginning or are new to her story, you have become an important part of her journey, our journey as a family. As we go through summer I am reminded how quickly things can change but those changes can be very positive also.

So, thank you for being a part of our lives and for your prayers. Thank you for reaching out to help and make great changes in the outlook of life for many others. Thank you for sharing Katia's story.

We are in the process of writing a Part 2 to Katia's book, "Ladybug and the Dragon". Hopefully it will be done by the end of the year.

Lots of love, Tracy









July 20, 2007 11:25 AM

Hello:)

Thank you for your prayers. The testing went well yesterday. My followup appointment for the brain scan, MRIs and yesterday's EEG and EMG will be on July 31st.

We are planning for Miami now (not looking forward to another road trip) and I really really pray that we will find a solution for Katia's eye trouble. Katia's eyes are always a big, very big concern for us. Not just due to the discomfort for her but for anything that could cause lasting damage that we aren't seeing yet. Please pray they find the answers. I always pray for the doctors to have an open mind, be well rested and that Katia will be able to sit through the exams they need to do. She does not like visiting the eye doctors at all. She goes through so much but eye doctor visits are the biggest fear for her as her eyes are so sensative and she has been through so much with them. So, please pray for Katia's strength and patience:)


Well my mind pretty much has gone blank but I know there was something else to update on. I will probably be back:)

Love, Tracy


**************

July 19, 2007 10:10 AM

I am about to head off to my doctor appointment today but I have been trying to work on a few projects. One is editing for a book I am writing (not getting much done there) and the other is continuing to condense and update Katia's sites. I could use help with one of them. The Kids' Page Links Page has some links that are no longer active. I am trying to update them. If you find a link that doesn't work, has become password protected or anything, could you please email me. I have been going through the alphabet of names so I got through the A's this morning.

It is sad that there are so many links and they aren't even a small percentage of all of those fighting diseases each day of their life. Thank you for visiting these sites and leaving messages. I know how much a Guestbook Entry means:)

Katia is a tad upset that I have to leave today even though I am off from work. She feels bad though that I have to go to the doctor. She is a very compassionate and caring little girl:)

Her left eye is extremely irritated this morning but she wants to watch Ms. Spider and the Sunshine Patch so she has her hand over her left eye and is still watching out of her right. She laughs and chuckles and I just think how strong this little girl really is! She is amazing to me and I am blessed to be able to not only love her but witness her amazing strength on a daily basis. I appreciate you following her journey:)

Lots of love, Tracy








July 18, 2007 12:27 PM

Hello:)

Thanks for stopping by. I am hoping to upload some pictures here that we took the other day so hopefully I can get that done before 2:00 today.

Tomorrow I am scheduled to have an EMG and EEG done so please pray the tests go well. I am not really looking forward to the tests but I know they are necessary. Also, I have some other upcoming tests to ask your prayers for. On the 23rd, a pelvic sonogram and on the 9th of August a mammogram, MRI and ultrasound. I had some blood tests done today. I think they drained me:)

Anyway, it sounds like a lot but there are no limit to prayers so anything is possible.

I am still trying to get my oomph (how do you spell that?) back. I just can't seem to right now.

How is Ms. Katia? Well, we just took a small trip to the library. She checked out 3 books about dinosaurs. She is happy:)

Her eyes are about the same, so no worse but no better. Myron and Katia were talking about wishes the other day. Myron said if he had any wish it would be that Katia feel better and her eyes to get better. Her wish was for Chick-fil-A:)

It definitely shows a difference in ages doesn't it:)

Okay, I am going to go work on these pictures. I really want to see how they came out and get some new pictures up on the page.

Lots of love, Tracy








July 16, 2007 5:50 PM

Hello, hopefully I can get an update on here before the lights cut out again. They keep going on and off due to lightening storms (I know I shouldn't be on the computer).

Katia is doing well. Her eyes are bothering her a lot right now so she is laying on me while I type watching/listening to the Backyardigans (we love them!)

I have not gained back one ounce of oomph since the Orientation trip. I really thought I would be feeling better by now. I am just wiped out feeling.

Due to a concern of a lump, I went to my OBGYN so I have an upcoming MRI and mammogram of the breast (I call tomorrow to get a date) and then also a cervical sono and some blood tests. My OBGYN has always been very good about staying on top of things. Please pray for some speedy tests dates and good results.

Thanks for checking in and your GB messages. Sheila I think you are right that more people are turning to the Message Board which is good. We still like to hear from you though. I always wonder how everyone is doing as we get so used to hearing from each of you too:)

Lots of love, Tracy








July 14, 2007 6:24 PM
Happy Bastille Day:)


All went well at Sharayah's College Orientation so thank you for your prayers! I really love the campus! I love the atmosphere, layout, teachers, faculty, procedures, etc. We are praying for the FAFSA to go through to help with cost. She has Bright Futures but that is for 75 percent of tution only not anything to do with housing and other costs. Please pray for that:)

We got home last night around 1AM. I am still tired!!

I gave Katia a kiss, did laundry, took a shower and went to bed. I am still tired for some reason but I will update more tomorrow.

I am not sure what is in store for Katia next week. We need to plan it out. Miami is at the end of the month for the eye consult at Bascom Palmer. We have to go up on Thursday for a 8:30 AM appointment on Friday.

The day before we leave will be at clinic for IVIG tranfusion and maybe GCSF? Not sure yet.

I am eager for Katia's next counts. I pray her WBC will start increasing as it is causing a lot of worry now. It shouldn't be continuing to drop. She feels good and she was adorably cute last night when I got home. She was sound to sleep but grinned when I kissed her:) I just wanted to hug her and talk to her but I let her sleep.

This morning, I rolled over to get up and rolled right over her. She had come in her some time after I got home. I went back to bed and she literally laid next to me holding my hand for like 3 hours. She really missed me.

She drew pictures but she can't find them. She wants me to see them so she is digging around her toys.

I am SO tired!! I am too old for this! It is weird how young I was compared to a lot of the other parents though. We were talking about "Where we were when..." and I was in school during a lot of the things they were at work for. I had Sharayah at age 19. But, those other parents were much more capable of the long walks than me and a lot more perky in the mornings.

I ended up seperating through a lot of the meetings so I could get a more upclose look at buildings and meet more of the faculty. I handed out alot of KSF Brochures and shared Katia's story a lot. I met the Deans, Health Center nurses, Financial Aid and Student Advisors, lots of students that are there for the summer, cafeteria personel, just a lot of people. I walked all through the book store, gym, swimming area, etc. Really nice and safe campus. VERY CLEAN!

I was impressed. You can view their website at www.UWF.edu.

Lots of love, Tracy



**************

JULY 13, 2007 8:43 AM PENSACOLA TIME!! THEY ARE ONE HOUR BEHIND TAMPA TIME

SO I FOUND THE LIBRARY THE FIRST DAY BUT I JUST GOT A BREAK TO COME IN AND USE A REGULAR COMPUTER!! YEAH!
I WANTED TO JUMP ON AND THANK YOU FOR YOUR PRAYERS AND YOUR MESSAGES ON THE MESSAGE BOARD (LINK IS ABOVE IF YOU DON'T KNOW THE LINK).

ORIENTATION IS GOING GREAT. I HAVE LEARNED A LOT. I STARTED OUT REALLY CONFUSED BUT I HAVE MET A LOT OF THE STAFF HERE AND THEY ARE SO HELPFUL. SHARAYAH IS ON HER OWN ORIENTATION AND THE PARENTS HAVE THEIR OWN. SHE IS ACTUALLY PICKING HER CLASSES RIGHT NOW AND PARENTS AREN'T PART OF THAT.

SO I AM WONDERING AROUND UNTIL THE NEXT PARENT MEETING TAKING PICTURES. I HAVE ABOUT 15 MORE MINUTES OF FREEDOM:)

WE DID FIND OUT THAT THE CAMPUS HAS A VERY GOOD LIBRARY, WI-FI CONNECTION FOR WIRELESS LAPTOPS PLUS ETHERNET IN CASE YOUR WI-FI SHUTS DOWN FOR SOME REASON (ALWAYS GOOD TO HAVE A BACKUP).

THE CAFETERIA IS GOOD AND THE FOOD PLANS SEEM GOOD. THERE IS MORE ABOUT THAT IN THE UPDATES BELOW. HOPEFULLY ALL OF OUR PAPERWORK WILL GO THROUGH AND THE GOOD NEWS WILL BE SHARAYAH IS FULLY COVERED IN TUITION, HOUSING AND MEAL PLAN. IF NOT, THEN OF COURSE, SHE WILL BE REQUIRED TO PAY UP OR TAKE OUT A LOAN AND WE DON'T WANT HER HAVING TO DO STUDENT LOANS.

SHE HAS APPLIED FOR A JOB HER WITH THE PARK SYSTEM WHICH SHE HAS DONE AT THE PARKS IN HILLSBOROUGH COUNTY SO THAT IS A PROMISING CHANCE. THERE ARE ALSO JOBS ON CAMPUS STILL AVAILABLE BUT WE LEAVE TODAY AS SOON AS ORIENTATION IS DONE. WE HAVE A LONG LONG LONG (DID I SAY LONG) DRIVE HOME!!!

KATIA IS DOING WELL. I AM ABOUT TO CALL THEM AGAIN TO CHECK ON THEM. I CALL WAY TOO MUCH MAYBE:)

SHARAYAH IS HAVING A LOT OF FUN AND HAS MET QUITE A FEW FRESHMAN SHE WILL BE ATTENDING COLLEGE WITH. SHE ALSO SAW HER BEST FRIEND LAURA WHO CAME UP FOR SUMMER CLASSES. THEY WILL BE ROOMIES STARTING IN THE FALL. ONE IS NEAT, THE OTHER NOT QUITE SO. I WON'T SAY WHICH IS WHICH:)

LET'S SEE, ANYTHING ELSE? I AM WORN OUT!! I HAVE WALKED SO MUCH, I THINK MY LEGS ARE GOING TO JUST GO NUMB BUT AT LEAST I HAVE SEEN THE WHOLE CAMPUS (THE WHOLE ENTIRE CAMPUS) AND I WILL KNOW WHAT SHARAYAH'S SURROUNDINGS ARE LIKE WHEN SHE IS HERE. I WISH WE COULD DRIVE THROUGH TOWN WHEN ORIENTATION IS DONE BUT I REALLY NEED TO HIT THE ROAD ASAP AS I DON'T DRIVE WELL AT NIGHT AND I WOULD LIKE TO BE AS CLOSE TO HOME AS POSSIBLE. PLEASE PRAY FOR US TO HAVE A SAFE TRIP. WE WILL PROBABLY GET HOME BETWEEN 1:00 AM AND 3:00 AM DEPENDING ON DRIVING CONDITIONS AND HOW MANY "STRETCH BREAKS" MY BACK NEEDS.

SO I BETTER HOP BACK OVER TO THE AUDITORIUM.

OH, THERE WAS A PARENT MINGLING SESSION LAST NIGHT WITH DOOR PRIZES! GUESS WHAT I WON!!! A COFFEE MUG. THEN TODAY THE ROTC DIRECTOR ASKED FOR VOLUNTEERS TO STEP FORWARD FOR SOMETHING. I AM NOT SHY! I WENT UP AND I GOT ANOTHER COFFEE MUG, TRAVEL MUG AND A UWF ROTC DUFFLE BAG:) NOT BAD. NOW I HAVE SOMETHING I CAN DUMP ALL MY STUFF IN THEY HAND YOU WHEN WE ARE WALKING AROUND:)

SO, UNTIL LATER.

LOTS OF LOVE, TRACY (AND SHARAYAH!)








~~MESSAGES UPDATED ON THE MESSAGE BOARD OVER THE LAST 2 DAYS FROM CAMPUS.~~~

*******************************************


UPDATE FROM JULY 12, 11:00 PM

I AM WORN OUT! I WALKED ALL OVER THIS CAMPUS TODAY. THE PARENTS HAD SEPARATE ORIENTATION THAN THE KIDS. BOTH SHARAYAH AND I HAVE SIGNAL ISSUES BECAUSE THE BUILDINGS ARE VERY HURRICANE READY (THAT IS GOOD) SO I WAS LEAVING MEETINGS GOING BACK AND FORTH TO STUDENT AFFAIRS, FINANCIAL AID, HOUSING AND I HAD NO CLUE WHERE I WAS GOING. MIND YOU I WAS PRACTICALLY JOGGING AND IT WAS HOT AND HUMID TODAY. I WAS TOTALLY LOST AND CONFUSED BUT NOW I KNOW MY WAY AROUND CAMPUS, FILLED OUT ALL PAPERWORK AND HOPEFULLY KNOW ALL THE DETAILS BETWEEN TOMORROW AND THE END OF NEXT WEEK. HOPEFULLY EVERYTHING IS COVERED INCLUDING HOUSING, MEAL PLAN AND BOOKS. IT IS VERY CONFUSING TO BE HONEST. SO PLEASE PLEASE PRAY IT WORKS OUT.
I AM IN BED AND SHARAYAH IS OUT AT A BIG FRESHMAN WELCOME THING. WE START AT 7 AM TILL 5:30 AND THEN THE TRIP HOME WHICH WAS ABOUT 8 HOURS SO WE SHOULD SEE TAMPA AROUND 3 AM? OH MY!
PLEASE PRAY FOR REALLY GOOD WEATHER, ROADS AND GAS MILEAGE!

THANKYOU ALL FOR CHECKING IN

KATIA HAS DONE VERY VERY WELL. SHE SAYS MY HOUSE IS SPOTLESS AND SHE HASN'T GOTTEN HURT AT ALL. I TOLD HER BEFORE I LEFT I WAS GOING TO CHECK FOR ANY BUMPS OR BRUISES

LOVE, TRACY








UPDATE FROM JULY 12, 11:30 AM

FUN
THANK GOODNESS I HAVE TEXTING, SURFING, IMing, AND MP3 ON MY PHONE.

THERE IS A LOT OF ENERGY HERE! IT IS A EAUTIFUL AND VERY NICELY WELL LAID OUT CAMPUS.

HTTP://WWW.UWF.EDU

I WILL BE BACK

SHARAYAH SAYS HI!

LOVE, TRACY







UPDATE FROM JULY 12, 4:03 AM (YES THAT IS THE RIGHT TIME:)

FIRST, I MISS KATIA! IT IS SO WEIRD TO NOT HAVE HER WITH ME AS IT IS ALWAYS HER AND I PACKING TO GO BUT MYRON SAID SHE IS DOING GREAT! WE CALL BACK AND FORTH AND SHE IS DRAWING ME PICTURES OF WHAT SHE DOES.
WE ENDED UP LEAVING TAMPA AROUND 5PM SO WE WERE IN TRAFFIC FOR A BIT. WE TOOK 1 REST STOP BREAK (5 MINUTES), 1 GAS BREAK, 1 WENDY'S BREAK FOR DINNER DOLLAR MENU AND A STRETCH (15 MINUTES) ANOTHER GAS BREAK (5 MINTES) THEN A STRAIGHT SHOT HERE. ALMOST STRAIGHT. I PASSED AN EXIT AND IT WAS 1P MINUTES TO THE NEXT TO TURN AROUND SO ANOTHER 20 MINUTES LOST.

ANYWAY, AFTER 183 MILES ON I75, WE HAD 287 MILES ON I10. BY THEN IT WAS DARK WHICH MAKES DRIVING HARD FOR ME. I FOLLOW TAIL LIGHTS BECAUSE MY NIGHT VISION IS BAD. PROBLEM IS, THERE ARE HILLS SO SUDDENLY TAIL LIGHTS AHEAD DISAPPER! NOT GOOD!

SHARAYAH AND I WERE JOKING AND GETTIND DELIRIOUS!!

BUT WE ARRIVED AT 1AM

CURRENTLY SHE IS ASLEEP~

I DON'T SLEEP SO I AM UP. I HOPE TO GET AT LEAST 2 HOURS. OUR DAY STARTS IN 6 HOURS FOR A LONG DAY (HOPEFULLY THEY HAVE POTS AND POTS OF COFFEE!!

TOMORROW SHARAYAH GOES TO HER ORIENTATION AND I GO TO MINE. WE DON'T SEE EACHOTHER TILL DINNER.

TONIGHT SHE IS SLEEPING WITH ME BUT NOT TOMORROW NIGHT. THEN WE SEE EACHOTHER O BREAKFAST ON FRIDAY AND NOT AGAIN UNTIL DISMISSAL...

I AM GOING TO UPDATE ON HERE. I GUESS I WILL BE SPENDING 2 DAYS WITH OTHER PARENTS.

PLEASE PRAY FOR ME. I GET VERY ANXIOUS WITH NEW SURROUNDINGS, UNKNOWNS AND JUST NOT REALLY KNOWING WHAT TO EXPECT. I DO LIKE THE CAMPUS LAYOUT WHICH IS NOT BIG OR SMALL, PRETTY SETTING AND CLEAN LOOKING (BIG PLUS)

I HAVE A MILLION QUESTIONS I WANT ANSWERS TO!

I DO SEE WHY SHARAYAH WILL NEED A CAR BUT OUR HANDS ARE TIED AT THIS POINT. SHE HAS WORKED SO HARD AND HAS BEEN A GREAT DAUGHTER, A HUGE HELP WITH KATIA. I WOULD FEEL BETTER IF WE HAD A CAR LINED UP BUT I AM JUST GOING TO PRAY ABOUT IT.

SHE HAS SCHOOL AND A JOB LINED UP SO SHE IS DOING GOOD GETTING HER SIDE OF THINGS DONE.

OKAY, I AM BABBLING. I SHOULD SLEEP

TILL TOMORROW, AFTER COFFEE.

LOVE, TRACY

PS WE SAW HER BEST FRIEND / COLLEGE ROOMATE, LAURA. THEY WERE HAPPY TO SEE EACHOTHER. LAURA'S MOM SENT HER A GOODY BAD. APPARENTLY COLLEGE KIDS LOVE AND NEED CARE PACKAGES! INDEPENDECE ONLY GOES SO FAR.

*****************************************









July 11, 2007 1:36 PM
Day 1251

Leaving in a couple of hours but wanted to update. The update on the 9th has really stuck in my head as to how blessed we are. Not only with Katia but with each of you and the lives we have had a chance to share along the way. WE too have met many wonderfuly CB, CarePage family and families in person.

This will be my first time leaving Katia so I think it is harder for me than her. I have thought back and forth about taking her but the bets thing is to let her stay home with Tatiana and Daddy (and Fozzy). She will be fine as I know she is in good hands, GREAT hands:)

We didn't go to clinic today but we go next week early to check her counts. Her port area is quite bruised up from the last visit and sore so there is no need to access her right now and make that worse. She is doing better activity wise. She was kind of sluggish for a bit but now she is more happy-go-lucky other than her eyes.

So, Sharayah and I are hitting the road. It is 7 1/2 hours each way. I have NEVER made a road trip that long driving. My longest trips are to clinic (which I am a PRO at) so this will be new for us. Sharayah can take turns driving too though so that is good:)

So, I am out of here. Feel free to email me and please do if something changes with a child or there is a prayer request. We will be praying for each and everyone.

Please feel free (please do) use the Message Board. I will put little updates on there as well during our trip, campus visit and such. I can do that from my phone so you will be "hearing" from me.

Lots of love,

Tracy









July 9, 2007 10:42 PM

Day 1249



Late night updates:)

Just wanted to jump on here real quick.

Did you see the Day count!?
I remember when we were in the Day 1 and then so happy to get to Day 100 and so on and so on but then I stopped putting the day count. BUT, I do have it on my phone so everyday I am reminded how many "BONUS" days we have had with Katia and how many we are still looking foward to!!




Sharayah and I are planning to hit the road to Pensacola this Wednesday for Orientation on Thursday morning bright and early. I think it is going to be great to go see the Campus and meet the faculty. We will drive back later on Friday.

Please continue to pray for Myron. Hopefully he can get an MRI done tomorrow. His neck is really bothering him quite a bit and he isn't one to complain so I know he feels bad when he does. He is just getting dizzy and his arm feels "off" so we want to really make sure there isn't anything going on that we don't know about.

Katia is just going on about her days. We feel bad because of her eyes but also she just doesn't seem to move ahead. That isn't totally unexpected but as a parent you want to make sure you do all you can to help your child in any way possible. So many things with Katia are out of our control. Her eyes, her growth, her educational milestones, her strength, energy BUT she is still delightfully a strong and courageous little girl. I admire her. I wonder if she knows how much her parents admire her! I think that would be hard for a child to understand. But, we do!! A LOT!!!

I want to end on a positive note so the fact that Katia is still here with us and she has been an inspiration to so many and hopefully made a lot of differences in many lives is something that makes me as her Mommy very proud and happy. When I get down, I think of that alone and it makes me happy. I read the guestbook and see how she has touched other lives and I am very grateful for that and the ability to "share" her with so many. I believe everyone has a purpose in life and Katia's purposes seem to be endless:)

Lots of love, Tracy




***************

July 7, 2007 11:55 PM
7-7-7

That is the date!!!

Well, good news! I am off tomorrow and I am spending time absorbing my family!!!!

I feel like I work a lot of hours but I guess I don't. It is just so new for me to get back into. I have closed the last 2 nights which is hectic but a good learning experience.

I definitely have the job down to an art now:)

Thank you for your prayers!! They have helped especially to get my old brain into gear.

My next appointment, for me is the 19th. Katia goes back this Wednesday for counts and maybe a dose of GCSF. Thursday and Friday we go to Pensacola for Sharayah's orientation...

Myron has been resting today but is quite sore so please keep him in your prayers and that the doctors find exactly what damage was done, that nothing is overlooked and he can be treated and feeling better soon.


I will continue more tomorrow:)

Lots of love, Tracy









July 6,2007 10:30PM
2nd Update Today

Hello:)

Better late than never. I am just getting home and bathed and such. Working outside of the house is very different for me. Katia is getting more used to it but she still doesn't like it. Although I like my job, I would prefer to be home but we need the added income so at least I am able to help some in a place that I like. Have I said how nice my coworkers are? They are:)

They are funny and they make me laugh! I need that!

Today, Myron had an x-ray which show a fracture and a scan that doesn't show a fracture but an "area of concern" either a hemangioma type of area or a cysts. He is going to go back for some more tests but is quite uncomfortable although he tries to hide it. He is pretty tingly and has some ringing in his ears. They gave him some inflammatory medication, pain medication and from here, I am not clear what the next step is. He didn't go to work today and I am not sure how that is going to work whether it is covered or not? Katia of course doesn't like that Daddy doesn't feel good. She is very much a concerned person when someone else feels bad.

Sharayah is getting pretty worn out too as she is working more hours and is hanging around while I work because she doesn't have her own transportation. She is nice to have there for company though so I don't mind and she doesn't seem to mind. We both work tomorrow. Tatiana is getting very helpful around the house as a lot depends on her to keep things going like laundry and keeping things picked up. This is all such a big change for all of us but especially for Katia and Tatiana.

I want to do something nice for both of them. My thoughts are "Build a Bear" or a "Mall Gift Card" that they can use however they like. There are a lot of great stores there with awesome clearance prices! Katia is in need of some new clothes as her belly is puffier than normal (another concern), her hips are very sensitive as the GVHD has worsened there making that area raw and she is just getting puffier all over. She says she is "fat" but I tell her it is just the medicines. She is beginning to really care how she looks. She does love her hair!!! She also is getting more into earrings and rings. Tatiana too. They are getting more "girly".

Tatiana goes to highschool so no more school uniforms. So, that means clothes shopping. I get a mall discount so that helps with those that honor it and especially things on clearance. Spring stuff is on clearance and with Florida, all clearance (except Winter clothing) is always a good buy! Tatiana is even willing to wear skirts now! That is a big change.

Katia likes dresses always but when she is home she is into her sweats and t-shirts. As a parent we want so much for our kids but also we want values and for them to understand that they can't always get what they want. I just feel like they have heard that all their lives.

I am not trying to whine here but these things weigh heavy on my mind as childhood is so short and I want theirs to be as happy as possible. I know they are bored alot! They don't complain though. Well, not often.

Fozzy, he is good. I think he is going through Puberty? Kind of some weird things going on. We don't know how much is involved in breeding him but he is perfect for breeding. He is under 7 pounds, cute as a button, perfect markings, blond with a little white chest and he is a good breed, cock-a-poo. It could also be an added income.

We are wanting to catch up on some medical bills and not be so behind so the WHOLE FAMILY is having to pitch in.

I am so tired as I type so please excuse the typos.

I really need to be working on Katia's Book II but time and the lack of the laptop is postponing that. I could take a laptop to work for when it is slow and work on that and I really want to get the story done and get it for sale on Amazon.

The Katia Solomon Foundation is moving along. We are being trained on how to do the HLA typing swabbing at drives so we can be more independent doing drives while working alongside the National Marrow Donor Program. There are a lot of great changes going on between the two of us, NMDP and KSF. Saving ives is priority to us as well as educating people on not only how to register but the necessity to keep the NMDP updated if you move, become ill, etc. This can be done on their website at www.marrow.org. If you are on the registry already and have moved, please visit that site and update your information. All you need is your name, birthdate and SS# to get to your profile information. PLEASE IF YOU REGISTER BECAUSE OF KSF, MARK THAT ON THE REGISTRATION PAMPHLET.

What else? Next week is the trip to Pensacola to orientation for Sharayah's college. Other than gas, I think we have a good game plan, oh and a hotel for one night. I can't believe Sharayah will be gone from here soon but she has planned this since 1st grade it isn't a suprise. She is going for a PreMed major and then will work from there to a specialty, psychology most likely. She could change her mind though but the PreMed is a must for everything she is intersted in.

I am sorry that I haven't been getting right back to emails. Let me answer a few things here. Katia is not out much but she does like gift cards. Walmart.com and Amazon.com are in her favorites. She likes electronices and knows more about them than most adults! She is like a teenager in many ways but her MP3 player is full of kids' stories and her daddy's songs:) Sweet huh?

She has turned on her books because of her eyes for now. She isn't watching much TV at the moment.

We are trying to locate a VERY REASONABLE handman to come put some type of AC unit or Ventilation fan or such in her playhouse and we are trying to do something to make the back yard pretty with as little maintenance or dirt and dust as possible. We are home so much, we try to make it appealing. She likes "shooting hoops" too! She isn't a pool person and neither am I. Myron has some friends that own pools and our friend and Board Member Carol Gomez has a pool and three great kids we can rely on if she does get the urge to go swimming. My doctor thinks swimming would be great for me but I hate getting my face wet? I guess if I had it in my backyard, covered over (I also am not a "sun" person) I would use it a lot but I have never been eager for a pool. I would prefer a membership to go somewhere else. I have seen that it improves me and probably is a help to my family when I get out for a while and there is a new LifeStyles opening up less than 5 minutes away from here. I could use to shed about 20 pounds and get more flexible. I feel very tight and tense a lot.

What do I do to relax. I listen to audio books and if I can, I can actually nap because I am always so tired but I don't get that chance much. But I still enjoy research and working on the websites. If you have a link to a personal site, medical site, information site or a site on active trials, please email it to me at tmsol87@aol.com.

Okay, I am exhausted!!! I must sleep:)

OH, MY DAD!!! He made it home and is feeling wonderful. He is back to working in his yard and keeping his house in order. He has someone come in to help him cook and sometimes clean but he is back to his independent self. He is more concerned about his sweet grandbaby, his other grand daughters, his daughter (me!) and his son-in-law. He prays for us constantly.

We have the chance for a trip to SeaWorld so we plan to go August 1st!!! I haven't been since I was 10? Myron the same. Sharayah went with school and Tatiana and Katia have never been. We also have a chance for a 3 day hop at the Disney parks but the hotel is not included and driving back in forth is a waste of gas so we are going to work on that. Katia wants Disney World again since she was sick all day. I think all the girls agree on Epcot and then the third park would be up to Sharayah and Tatiana. So, we just have to figure out the hotel and we are going to hop on that.

Family fun time is theraputic and reginerates all of us to keep on going forward accepting the good and the bad and just trusting God to fill our hearts with hope. Also, it helps us to help others so please keep posting and updating those prayer requests on the Katia's Message Board as well as taking the chance to introduce yourselves to eachother, swap ideas and recipes, and just whatever. I love to read the message board. You guys are so creative, funny and smart!!!!

Lots love, Tracy







July 6, 2007
1:15 PM

Hello:)

Sorry for the lack in updates... things have just been quite a bit hectic here.

Katia is doing okay, basically just the eyes are her biggest issue right now.

Due to concerns in her counts and just some other changes, we are going to schedule an MRI of the brain as well as a bone marrow aspirate, a GCSF injection and an IVIG transfusion. So, we have a quite a bit going on now and for a little bit upcoming.

Plus, Myron had a small accident at work with a wheelchair and a bar coming down on him which seems to have fractured his neck right on the bone at the base of his neck. He is getting x-rays and scans today for that. Pray it is something simple please. I will update later tonight when I find out what is going on.

A few of Katia's counts other than her WBC is causing some added concers which is why we have added a brain scan to be done at the same time as the bone marrow aspirate plus it is just a good idea to see what is going on in the area of the eye tumor within the orbit.

I hope we can get it all done before Miami but I sort of doubt the MRI and Bone Marrow Aspirate can be fit in before that time. We are planning to go in next week for counts and maybe IVIG but we are trying to hold off the IVIG until the day before Miami so she goes with as much protection from viruses as possible for the eye doctor visit.

I know it all sounds a bit confusing but I will update more often until we get some answers and game plans with adjusting some medicines around and more of an understanding of what is going on with Katia.

Thank you so much for you guestbook entries:) It means a lot to know Katia is being prayed for and checked in on. We tend to focus on so many things because on the outside, Katia appears to be doing so much better but on the inside, she needs some added attention. She is still battling quite a bit and things can still suddenly change. Sometimes we try to avoid thinking that but we do know better.

So, I will update more later. Love, Tracy










July 2, 2007 10:17 PM
Concerned...

WBC 2.02 (still dropping...)
HGB 13.7
PLT 405
ANC 1200
IGG 623
FK506 Pending...

First I am not sure really how many keep up with the site right now but I do ask for your prayers for Katia.

One, her bones are worsening. I kind of expected that but we may have a new plan of action but it wouldn't really be able to make much of a difference as Katia will continue to rely on steroids for a good while longer, at least over the next year or so. We are going to try to get the dose from 10mg per day to 6mg per day over the next year though.

DEXA SCAN EXPLAINED


Her bone scores last year were:

Whole Body z-score = -2.3
Lumbar Spine z-score = -2.5
Left Hip = -3.7

Those are just points of measurement.

This year z-scores are...

Whole Body z-score = -2.8
Lumbar Spine = -2.9
Left Hip = -3.4 (that improved a bit)

Anything < -2.5 is considered osteoporosis. Since only certain parts of the body are really measured, the whole body z-score is the more acurate I think.

Okay, the next part of concern is that Katia's WBC continue to drop. This is her White Blood Cells. For some reason her system is just not producing them. Her IVIG also fell from 1900 right after the last dose to 653 so we will get a transfusion of the day we leave for Miami to help boost her and maybe a GCSF(NEUPOGEN) dose also to help boost some White Blood Cells.

We are planning to drive this time to Miami (the whole family). Katia wants everyone there as she really doesn't like eye visits and she likes her sisters, Mommy and Daddy by her side. So, it should be a nice long car trip (hopefully gas prices will drop some!). We plan to literally drive there overnight for the early morning appointment and drive right back to Tampa when it is done so we will be a pretty tired, sluggish bunch of people I think. None of us do well without sleep. Hopefully the girls can sleep some on the trip. Myron CAN'T sleep as he will be driving and I can only sleep in a bed (or a hospital chair) but I can go days without sleep I have learned. I can function, may not look to good but I can get by:)

I ask your prayers that this trip brings some answers as Katia's eyes are worsening daily right now. Glasses along with the brown shirt are basically on all the time and she is just so worn out of her eyes hurting so badly.

So, the prayers are for her bones, her immune system and her eyes.

We plan to do a bone marrow aspirate if the next counts show more dropping to see why. I am not so concerned that the leukemia may be coming back but I do get concerned over bone marrow failure. Her immune system has had to stay suppressed for so long due to rejection issues and GVHD that it may not know how to start coming back as we wean some medicines. We also may take her off one of her oral meds and change to an IV med to see if that helps. Just a lot of questions right now.

I always know Katia is in the best group of doctors for her! I rest assured in that. I have peace of mind that they care and love for her just as though they were her parents. I am in awe of how much time and effort they put into her care, research for every unanswered questions and how well they work with all the other pediatric facilities on her behalf.

We have been trying to lessen the trips to clinic but I think that may be over. She needs her counts checked more often at least and possibly some IV transfusions more often. I never mind driving over to ACH as it is our 2nd home and I feel very comfortable when we are there, Katia too. She turns into "Chatty Cathy" at clinic:)

Lots of love, Tracy










June 30, 2007 12:00 NOON

As soon as I updated yesterday, my throat was bothering me so Myron took a peak and the majority of my throat was white and inflamed. I didn't feel that bad, just a bit of a sore throat.

Of course due to Katia, I started on Amoxicillin. I never used to be one to get sick like that but I think that is the third time this year? Anyway, I literally just got up!

Myron is off today so he was up and just slept and slept and slept:)

I don't take chances with Katia, none of us do and her counts have just been dropping each time we check so we are on a higher guard around here anyway. Hopefully she stays clear of this.

Lots of love, Tracy



****

June 29, 2007 4:00 PM
2nd update today

All went well. I am home:)

Lots of love, Tracy






June 29, 2007 12:13 PM

Please pray for all of the happenings in London, very scary.

I am off for my Brain Scan so please pray for me. They are doing it with and without contrast so hopefully they will get a good view and find nothing but it would be nice to get an answer, simple answer for the headaches and the last seizure but I prefer somthing very simple. The EEG and EMG is set for the 19th. Also I have been having very very bad pain in my upper right arm and numbness and pain in my right thigh (the pain) and leg (the numbness). That they feel is due to a pinched nerve so the nerve study is set for the 19th.

Please pray for Katia's eyes. Right now though she is happy and giggling but her eyes are closed but she just finds a way to carry on. It makes me just want to squeeze her and hug her!!!

So, I just wanted to update. I will update later this evening, it may be short but I promise an update. Also, please keep our finances in your prayers. We are working hard this summer to cover added expenses and regular expenses. Sharayah and I have a road trip to make in the middle of July and the cost of gas is just not helping. I am not sure if I can trust to take my car but we will see. I don't drive Myron's truck very well but I may just have to take that. It doesn't get as good gas mileage but I think it is more dependable plus we will need to spend the night before the orientation and the night after the orientation there. They don't provide a place so that will be a hotel. Please keep our safety in your prayers as well. I drive well but I worry about others on the road...


Katia has bone scans on the 2nd and we are praying for big improvement. Last scans showed severe osteoporosis in her hips and spine. We didn't plan to have her still on steroids (bad for the bones) but we have been praying for no more damage.

Love, Tracy









June 27, 2007 10:17 PM

I am tired:)

I just wanted to jump on here and do a quick update on Ms. Katia. We are so looking forward to July 27 getting here for her eye appointment so it is one month from today. Her poor little eyes have just really be bothering her so much and she is getting upset over them bothering her for so long. I can't imagine what runs through her brain but I would imagine she just wants something to fix the problem. So, please pray for her eyes and her continued patience and just awesome spirit she has.

I am doing well at work. I can't believe I have only been there since the 15th. It feels like months. I have gotten the job down packed and have gotten to know everyone by name and their ID #s. That was hard to memorize (for me) but I got it:)

School here doesn't start till the end of August this year so it will be along summer. Sharayah is set to leave on August 22nd, the day after my birthday. She is very excited. Her roomate is already there as she is taking summer courses. So, we are hearing all about the campus and ins and outs. Sharayah and I have to go up for orientation on the 12th and 13th. I haven't yet figured out how we are going as that will have to do with finances but it is either a 7 hour drive each way or flying. I am working on that. I can't believe how quickly that time is getting here. I can't believe how quickly the last 18 years have gone since becoming a parent?

Well, that is it for now. I am really tired so excuse any typos please:)

Love your guestbook messages! It is great to see there are still people out there checking on Ms. Katia.

Also, remember if you are looking for prayer request, you can go to the Message Boards and also all the links to sites can be found by going to the www.ladybugkatia.com site. That is where most of the links to other sites are such as the Medical Information and Disease Information Links Site can be found.

Lots of love, Tracy






June 24, 2007 7:30 PM

New pictures!!

I added some on the Photo Page


Enjoy,

Love, Tracy



June 24, 2007 12:30 PM

Hello:)

I promise I will work on the pics in a bit. I just wanted to add that the Ebay Action is coming to a close in 11 hours.

There is more information and the links on the www.ladybugkatia.com site.

We are working on to get through a few things that have come up and will be coming up over the summer. Getting Sharayah off to college is a BIG thing as I am sure some of you already know. We have to make a trip up there, her and I, July 12 and 13th. I guess we are going to plan on driving but that means both of us take off work and just the expenses of the trip. Plus the Miami trip to Katia's eye appointment. Last time we took an Angel Flight but this time, we are all driving up there, together as a family. It will be our last big road trip before Sharayah heads off to college. It cost too much to fly and then have to rent a car to get too and from the appointments so we are going to drive up, pack some snacks and hopefully have a good safe trip. Hopefully the weather will be great for the road trip:)

So, just a heads up on the auctions and thank you for the bids. Some items haven't been bid on and I am really trying to get them all sold.

Also, an update on Ms. Estephany Portillo. She is doing wonderfully!!! I love to update on things that are going really good. Also, I had asked prayers for my uncle who had a brain tumor removed. He will still have to undergo chemo and radiation but he seems to be doing okay. Another one was for a few family members. One had breast cancer and had the breast removed. I don't know too many of the details but I can tell you she is back to jogging some and building up her strength and remains in remission!!

There is a lot of hope out there:)


Love, Tracy






June 23, 2007 9:31 PM

Hello:)

I have some great pics to share but I will work on them tomorrow. Myron took Tatiana, Katia and FOZZY to the park today and there are some adorable pictures and video:)

I am off tomorrow!!!

Love, Tracy




June 22, 2007

If you have noticed, I removed the Prayer Request Section. Any of the names that were up there can be found by going to www.ladybugkatia.com and going to the area for Kids' Links.

I am asking for prayer requests to be posted and followed on the Board, "Staying In Touch" Message Board which I host but it is more open to others to add requests and keep each of US updated:) Sometimes, I need updating too and I feel bad if I don't keep things updated especially prayer request! That is so important to me.

My job is going well but keeping me busy and I hate being away from Katia and she hates me being away. That is the sad part of it all. The people at work are just so very nice. It is a Day Spa so it is a pretty relaxed environment. Some days Sharayah and I work together but she will be leaving for college near the middle of August. I do plan to keep on working once the school year starts as I have already planned on afternoon schedules. We just need this to help us get through our finances. Our attention has so primarily been on getting KSF more up and going but with Katia continuing to need ongoing care and continuing her own issues with GVHD and her eyes, I need to not only help out but I really enjoy the atmosphere and being out of the house for a bit. I LOVE being home, don't get me wrong. HOME is my favorite place to be!!! People ask me, "Don't you get bored?" I don't know what boredom is!

I enjoy cleaning and cooking as well as just my home environment, moreso since we were gone for so long during Katia's transplant. A year from home does wonders! I know others have been away home for extended amounts so I am sure they understand what I mean.

I do love home:)

But while I am at work, I get to really relax if things are slow and even go sit in the massage chairs so it is very relaxing! When it gets busy I think I am going to pull my hair out BUT then it does slow down:)

As soon as I come home, I BATHE and then I give Katia a GREAT BIG SQUEEZE!!! Usually Fozzy is wagging that little bitty tail wanting me to hug him to the point his tail may fall off! He misses me too:)

Please keep Hannah Deal in your prayers. They have received some very heart breaking news but they aren't giving up hope. She is treated at the same clinic as Katia so I KNOW she is in great hands and nobody will stop pushing for new treatments.

Also, please pray for Katia's eyes. They are just worsening each day. She has her good moments but is having more and more bad moments. We worry not only for her comfort but also her eyes. We don't want to be missing anything that could be permanent or that could be avoided. It just really really pains us to see her hurting so much and seemingly missing out on so much. We are going to change her schooling around to more audio so she doesn't keep missing school. She is doing summer school so she is due to have school 2 days per week. However, the last 2 times, she has just felt too bad due to her eyes. So, her teacher and I are looking for more audio studying so we can make a new game plan. I have plenty of audio book children's stories but she is looking for more audio educational supplies.

Well, I am going to go. We have some really bad lightening going on here! I don't want to get shocked. That would be bad.

Lots of love,

Tracy:)











June 20, 2007 1:50 PM
More pictures are on the Photo Page

Okay, I typed a really long, very detailed message on here about 2 hours ago and it is gone!

First, I said I would update the photos which I did. I think the best ones are on the photo page but Katia picked this one for the front page:)

Katia's eyes are doing horrible to say it mildly. So, I don't think those glasses will be coming off for a bit. Her eyes are red, puffy, just plain really really sore looking all the way around. Which reminds me, "Call the doctor."

Otherwise, she is doing pretty decent. She is still quite puffy although she normally starts losing some of the puffiness in her belly and face at this dose of prednisone. She has gone from 30mg to 10mg a day. That is where we ware holding it to hopefully prevent another GVHD flare up and have to either go back to the 30mg of prednisone a day or try the photopherisis treatments. No other really promising trials are going on with GVHD that Katia would be able to participate in so we really need to hold off flare ups. But, she is still totally happy over FOZZY!!!

She uses my camera and is continuously taking pictures around the house. Usually of Fozzy but basically we have a little spy around here! We know we have been "snapped" when the flash goes off though at least.

My appointment yesterday went very well. We have a good "plan" in order. See, I was really much more detailed this morning than I have time to be right now but I will type fast. Back in 2000, about 9 months after Katia was born, I started having seizures. I was admitted to the hospital, had numerous tests run and was started on Dylantin (anti-seizure medicine). It had no effect other than a foggy mind and weight gain. Then I had episode that really concerned Myron more than usual. I went to the ER and was changed from Dylantin to Tegretol and Neurontin. I stayed on those till the end of 2002. But in early 2002, it came to my attention that low blood sugar could cause seizures so I got a monitor and started tracking in. Sure enough, late in the evening, it would be in the low 50's to upper 40's. Normally I wouldn't eat before bed time which meant it was dropping even more after bedtime (which is when most of my seizures occured. So, I started monitoring that more and got off both of the meds. I was seizure free until the other day.

I had already planned on and I think had an appointment with this neurologist for the Fibromyalgia diagnosis. So, we talked to him about everything. Two of the medicines I was on had possible side effects of seizures so we changed those two to one medicine that should be better.

One big thing in my life is stress! Most doctors blame everything on stress, well fix it!! This doctor listened to me and Myron. Myron told him that I have always had stress in my life and have managed but that we both wanted to make sure there were no serious or mild issues going on that could become serious. Over the past few months, I have had numerous symptoms adding up and new ones which have me concerned. He asked when I had my last brian scan. I never have, only my back and neck. He is going to do a brain scan, an EEG (brain study for the seizures) and an EMG (nerve study) to check why I am having some numbness in my left leg. I could go on and on (which I did more of this morning) but ( I will put that behind me now:)) I think this doctor will be thorough and he knows how important it is that I am "up to par" and I don't want to just be put on medicines for each symptom, I want to find out why the symptoms are there. I have a belief that a lot of symptoms are usually caused by one thing and something minor. He agrees (of course I like someone who agrees with me!)

So, the MRI of the brain should take place in the next couple of weeks. I have to schedule that when I am done here. The EEG and EMG are scheduled for the 19th and then an appointment is schedule a week after that to go over everything.

So, that is where I stand.

I haven't been getting to the Prayer Request like normal but you can go to the "Staying in Touch" Message Board I started and there are quite a few post for prayers over there. Please feel free to use this as I feel really bad that I am unable to get to the computer as much but I do know how important prayers are.

Okay, I am copying and saving this so if it disappears I won't need to retype it. (Oh, I said I was going to drop that issue)

Love, Tracy






June 19, 2007 1:30 PM

Hello:)

I have been BUSY... New job and just things with Katia normally and Sharayah preparing for college.

I am off to my Neuro appointment. This is my first time with this doctor so hopefully we have a good connection and he can give me some answers and get things on the right road for me. That is my prayer!

My dad leaves Saturday morning so he is packed and ready and feeling much much better! Praise God things went well for him with his surgery on his back and the recovery went very well.

Fozzy, still the highlight he thinks he is!!!

Okay, well I am going to be late. I need to update some pictures.

Love, Tracy







June 16, 2007 11:42 PM

Okay, my clock has become a little off:)

I did sit down to update earlier today and WISH EVERYONE A HAPPY FATHER'S DAY but I saw something that needed to be cleaned and needless to say, I kind of went a bit too far (according to Tatiana) and ended up pretty well tearing apart the living room and front room from one side to the next vacuming inside of everything and under everything:)

I like cleaning:)

Work is going well. Today was my first full day and WOW, I am getting a bit old but it is nice and the people there are very helpful. Sharayah was with me so she helps me especially when things get busy.

Katia? Well, she has me for the day tomorrow. She made that pretty clear. She does miss me when I am not here. Understandably, she has had me pretty much to herself for 7 1/2 years.

Also, as far as the Ebay Videos, I did relist them, just lessened the price but kept the grouping the same. It would take a lot to break them down instead of just relisting so hopefully it will work for someone. They are some great videos! Videos remind me of the hospital, especially Barney and some of those... WOW! I saw a lot of movies many times over and over. Shrek? Oh my gosh, we had that memorized!!! The nurses memorized all of them too:)

I really meant to click on today (from my phone) and check the Message Boards but I am literally just getting to the computer.

Last night we attended a memorial service for Angel Carlos Murillo. He passed away a year ago yesterday. His family had a gathering of family and friends and it was touching to see how compassionate they are about continuing to do what they can to help raise awareness to the battle of cancer. His sister Maria read a beautiful poem. She is going to post it on his website soon.

I will link to it but the links to sites can be found from the www.ladybugkatia.com site. I need to find a way to reorganize myself (simplify) but I have kind of made the www.ladybugkatia.com site a good place to start and find links to the other sites which will guide you around to different places easier I hope:)

I am tired:)

Lots of love, Tracy





June 14, 2007 5:00 AM




Well today begins the new job:)

Wish me luck.

I want to say thank you for your prayers. Keep them going, it has been a while. I really think I will enjoy this job and hopefully it will help with some bills.

The Video Auctions are coming to a close. I guess not too many people are into VHS anymore. I had planned to donate them to ACH but then I knew we needed the income help so I decided to Auction them. The link is over on the www.ladybugkatia.com.

That site has taken on a new look so it is a good starting point to be able to remember easily or tell others about. www.ladybugkatia.com is much easier than remembering or telling the caringbridge site address.

If you haven't been by Angel Jacob's site, it was one year since his passing on the 12th. There was a very touching newspaper article and news story which are linked from the site.

How is Katia? Well her eyes were horrible all day yesterday. With her counts so low, I thought her eyes would at least improve since there isn't much for the GVHD to fight with but there hasn't been any relief. She continues to play and make the best of it though. She is so much of an example to me:)

Me? I am very much in need of my neuro appointment and looking forward to it.

My dad is packed and ready to leave on the 23rd. It sounds like his dog really misses him and my dad is pretty much back to good health but he is less active at my house than his.

So, I was up, haven't gone to sleep yet, and I just wanted to update:)

I will keep the updates going but they will have to ride over to journal history each day so if you miss some updates, check over on the journal history.

I feel like I am forgetting something. Oh, Sharayah leaves for college on August 22, the day after my birthday. She is very eager and is trying to get her bedding, towels, dorm supplies and such together. She is very excited!! Some of her exchange student friends leave back to their homes this week so they are having a get together and her best friend leaves on June 19th but Sharayah will be catching up with her in August as they are dorming together. At least I know she and her roomy will get along:)

Not to forget Tati, she is very very eager to start high school!!! She is very happy she is out of school uniforms. She donated hers to the school for students that don't have money for uniforms. She was more than happy to pass those along but it was nice she wanted to do that. That helped us one year so it is giving back:)


Lots of love, Tracy

PS Drop by the Auctions before you leave. If you want to bid and have them donated to a hospital or shelter, I can do that also.


************

June 11, 2007 5PMish

Hello:)

I am getting on the computer later and later and less often it seems. It isn't normal for me to not have my laptop to lean on...

I start work on Thursday and believe it or not, there is not one computer there (WOW!)

I will have my phone with me.

I will be working at a day spa. I have spent some time there with Sharayah (she works there) and it seems like a good kind of laid back atmosphere. It is just going to be weird for me to not be at home.

On the good side, I get to keep my nails done and such. There is a nail salon there too for pedicures and manicures. This is the Day Spa I had my Mother's Day Massage done at.

I am looking forward to the added income and getting away and such but I am nervous too. I haven't been away like that from Katia. I will be working when Myron is home so Katia will be fine:)

Katia started school again today. Summer classes. There is a new reading program and it sounds fantastic!!!

I think Katia will very much benefit from this new program.


One concern for Myron and I is that Katia learn to read and write. That brings so much to a child's life, anyone's life. So, this summer that is what we are concentrating on. It seems a lot of what she learns goes away, like a big eraser just wipes out that part of her brain.

Katia gets very irritated at herself when she feels she can't do certain things. I think physically she is very accepting of her size and abilities but she gets irritated at not being able to read video games on her V-Smile and such. She is okay with not being able to do many things but she misses on not being able to get out and about like going to the mall and the movies. It has been a long time. We do get her out to the movies now and again when there are less people and such but that depends on her counts which haven't been good lately.

BUT, just to confirm one thing, Katia is a happy-go-lucky little girl. She is pretty busy with FOZZY!!! He has been a great gift to her and she LOVES that dog!!! Right now she is out talking to Grandpa (who leaves on the 23rd) and hauling Fozzy around:)

So, I just wanted to update quickly and let you know what is up here:)

I need to get by a few sites.

Love, Tracy








June 10, 2007 2:45 PM

Someone asked a very good question in the guestbook so I wanted to add a link here to answer it:)

What is IVIG. You can follow that link to learn more.

Another point is IVIG takes a lot of donors to donate blood products. I know I say this on here a lot but after another meeting with Florida Blood Services and hearing about other Blood Service Centers, I can't say it enough. Please go donate blood and blood products like platelets, red cells, antibodies and just so much more. You can learn more about blood donation at FBS BLOOD SITE and go donated regularly in your area.

A lot of questions about medical definitions, procedures, diseases and much more can be found on the Information Medical Links Page. I am always adding new links. If you have a good one to add, let me know:)


Lots of love, Tracy










June 9, 2007 4:23 PM
I ADDED SOME MORE INFO IN FROM THE CLINIC VISIT ON THE 7TH JUST UPDATING ON THE IVIG LEVELS, UPCOMING DEXA SCAN AND GROWTH INFORMATION.


First, please keep the family of Angel Rachel H. in your prayers. She passed away. Hope had never been given up on and I can't imagine how they are feeling right now.

I have been trying to fix around some of the websites for better navigation and simplicity of updating.

I have made some changes to the www.ladybugkatia.com site so it is a good place to start to navigate to all the sites and an easy site to remember the web address to:)
The original www.ladybugkatia.com site is still there at its own link.

Although it is summer, we are still doing spring cleaning. One thing we have cleaned out is VHS tapes. So, I have a bunch of the listed for Auction. Go check out the VHS TAPE AUCTIONS as there are a LOT of great titles over there!! We just don't spend much TV time anymore and neither do the kids. Of course, everyone got to keep the ones they wanted but some we even had more than one copy of so HAPPY BIDDING:) The Auction is set to run for 5 days from today. Each of us are working together on bringing some more income into our family to help with some of the bills. I am not going to on about this but please stop by and check out the videos and hopefully there is some interest:)

I start my job on Thursday. I am looking forward to it and hopefully it will help us out and also be something to get me out of the house:)

Lots of love,
Tracy








June 7, 2007 11:55 PM

WBC 2.13 (still dropping?)
HGB 12.8
PLT 325
ANC 1200


First, I am getting concerned about the dropping WBC trend going on with Katia. I am not sure why but it is continuing to drop. Katia doesn't seem to be sick at all because sometimes a virus can cause a drop but... we will see.
Recent Counts of WBC

May 17th 2.90
April 18th 3.10
April 3rd 2.83
March 17th 5.18
March 10th 6.90
February 26th 6.20
February 24th 7.38
February 19th 7.25
February 12th 5.18
January 31st 4.05
January 10th 5.73
January 5th 7.96

I kind of take a closer and more analytical look at a lot of things but I usually don't let too much concern me. I do know things go up and down. For Katia, her normal and doing well seems to be around the 5's and 6's. Normal is basically from the 4's to the 11's for Katia's age group. I don't worry so much about just the normals but also the up and downs. So, just keep this in your prayers please:)

I really dragged out this update trying to gather those back dated counts so I will keep this short and sweet.

I did get the part time job and I start on next Thursday. I have always been around the house since Katia has been born and basically attached at the hip since she was diagnosed back in early 2002. So, it is going to be a big difference for her, myself and the entire family. I am going to be just working a few days each week in the afternoons and fuller days on the weekends. It works well around Myron's schedule and I think it will be a good change of scene for me and that Katia will be just fine:)

Remember, she has Fozzy now:)

So, I will close with a little Fozzy story. Katia drags this dog everywhere and I mean DRAGS. As long as he is smaller than she is, he is her puppet. Either he has a lot of patience or he is happy when she is happy. Either way, he has been a good source of play for her and she is much more active since he is around. Her doctor today said that is a very good thing that she is more active.

Her next appointment will be July 2nd and that will start with a DEXA SCAN to check her bone density to see if the Fosomax has helped with the sever osteoporis. Katia was 85.5 cm at time of diagnoses (April 2002) which is 34". Now she is 38" five years later. So basically a little under an inch a year. For her fragile bones, that is probably a good thing. She has gone from 12.4 kg to 19 kg in that time which is 27 pounds to 42 pounds. She has grown one way more than the other, both are caused by steroids. She is down to 10mg a day right now compared to the 30mg a day she was on. She still is hungry a lot but her appetite is less. We don't want her to drop below 15kg at least. That would be 35 pounds.

It has also been decided to skip the next IVIG dose until we see what her level is so on the 2nd we will just run a lab to see her IGG level and see what we need to do. This last dose brought her all the way up over 1900! We just don't want her below 500 so that was quite a boost. Her labs were drawn right when the IVIG transfusion had finished as her port wasn't working prior to the transfusion for drawing labs.


Thank you so much for your prayers. Have a good weekend:)

Love, Tracy











June 6, 2007 8:15 PM

Okay, I keep waiting for when things are going to slow down...not going to happen.

Here is something new, I am getting a part time job:) I am not sure where that is going to fit in but it is a necessity for us.

I will tell you more about that at a later date. I am still working on the Arbonne and hopefully as more people get over there and do some online shopping, that can be of some help. I have to give a big thumbs up to the face care products and vitamins! Those I have tried and know about more:)

I so much appreciate those of you going over to the Message Boards and posting prayer requests, questions or just whatever. I loved to hear about everyone's housepets:)

On that note, Fozzy is just awesome. He is this little smile/smirk/nervous thing he does with his mouth when he has done something wrong (which he does do). It is something I have to catch on film and show you to believe it!!

Katia is doing, well not so great. She has a clinic appointment for tomorrow to get her IVIG transfusion. I am eager to see her counts. She seems to be losing her counts quicker, needing IVIG more often and just wearing down and bruising more right now. However she is happy. She loves this dog!!

I have an upcoming Neurologist appointment coming up which I think I need. I have a had a few added concerns and "episodes" so I think going to see a neurologist again is a good idea. Again, I will share more about that at a later date when I know more. I could use some prayers right now though.

This summer is going to be very busy with a lot of appointments for Katia, myself, Sharayah heading off to college, Tatiana getting back with her neurologist as her back is worsening and also summer school for Katia. With me working part time, it is going to be all of us working together to keep things running around here but I know we can do it. I love my family! We work quite well under pressure and with prayers.

On that note, I have a small something to mention. I post quite a few prayer requests. I know that each of these people do need prayers and I know they appreciate them greatly. I know when desperate times arise, people will ask for help and if all you can do or feel comfortable doing is pray than please do that. Prayers are always welcome. If someone is having financial distress and mention that, the prayers can be for things to turn around for them so their situation can get better.

I guess it is kind of hard to explain but personally, I have been in the position where things are late, bill wise, and I get desperate feeling. At the same time I am worried about other things like Katia and what is going on with her. Sitting down to journal is theraputic in many ways and some of us tend to spill our souls and hearts on here.

I personally appreciate your prayers and your eagerness to visit those listed on the prayer requests section. I also ask that you post prayer request in the Message Boards. It doesn't have to be health related. Someone started posting about family pets and that was just fun to read about everyone's family pets:)

I know I get a little long winded or tongue tied but for the most part, you can read between the lines and always understand me:) I know that you each come here because you care and you have shown in many ways that you not only care about Katia but so many others. THANK YOU:)

Pray that all goes well tomorrow with Katia's visit. I will update from clinic but it will be on the Message Boards as that is all I can do from my phone.

On to good news!!! I have my laptop kind of up and running but kind of is better than not:) I am happy!

Lots of love, Tracy









June 3, 2007 1:30 PM

Hello:)

We had something very nice! RAIN!!! We really needed it and all the trees around here just look happier right now. Of course, that means we are on our way into Hurricane Season and Mosquitos but it was nice to have the rain.

We put down our Weed and Feed as well as replanted some trees around the yard. I really had hoped it would rain last night to get the Weed and Feed into the ground but it didn't, maybe today:)

Fozzy, the girls and me are watching a Puppy Show on TV right now. It is amazing how well little Fozzy has fit into our family and he really seems to love it here!!!

He is wearing a little tank top right now, ADORABLE!

Katia likes playing with him and he is very very patient with her when she hauls him around (not always to comfortably) and makes him sit and play with her or just watch her play.

Sheila, I love the idea of the Special Plate!!! If you haven't read the guestbook, look for Sheila's entry and read about the Special Plate. If you have any ideas, feel free to share them.

Summer this year is long as the kids go back to school later in August than in the beginning. I just always pray for a safe and happy summer. We will be having a lot of appointments during the summer. My neuro appointment in on the 19th and I am eager to see what his opinion may be. Last night was not a good night for me at all BUT yesterday I felt quite well. I even thought, "Wow, I feel pretty good right now!"

I am promising myself to get busy on writing a follow up to Katia's book. It is really hard to put a lot of her story into words without dragging things out but I have to get it done. I have someone interested in publishing it so I just really have to promise to get busy and get it done.

Another small goal I have this summer is to drop 10 pounds. Amy Nasworthy has been "losing weight to raise awareness" and I think she is losing her weight by dropping the pounds off on me!!

If you haven't checked out the Message Boards, hop over there and feel free to use it to open up communication, share a prayer request for yourself or someone else or just to ask questions and see who responds. In fact, I am going to go post a question on there later about recipe ideas:) So, it can be used for anything.

Message Boards

Lots of love, Tracy (and Katia, and Sharayah, and Tatiana, and Fozzy and of course, Myron!)


************

June 1, 2007 12:00 PM

Hello and welcome to JUNE. Us in Florida like to say, "Welcome to Hurricane Season".

Hopefully this will be a quiet year unlike they are saying.

As I type, a little doggie is barking and Katia is after him. Tatiana just made some really good pancakes!! Things always taste better when someone else makes them:)

I would like to ask your prayers for me actually. I have had some horrible headaches lately. I do have an appointment to start with a neurologist on the 19th so I am looking forward to that date actually. Hopefully he can shed some light and give some relief to the head, back and neck issues. Until then, I am just trying to "lay low".

There are some prayer requests over on the Message Board so we are keeping those in prayer also.

My dad is planning to return to Honduras on the 23rd. Thank you for all of your prayers for him. He is feeling an looking much better and pretty much back to normal in his day to day activities. He isn't supposed to mow his yard but we will see how he does with that when he returns back to his home. I wonder where I get the "lack of listening" from:)

Anyway, I will update later but have a good weekend. Hopefully the weather for everyone is warming up. Our days have been very dry but no rain means no mosquitos and perfect humidity:)

Love, Tracy








May 30, 2007 11:08 PM

WOW, days are getting longer it seems. First, having a new puppy is like having a new baby. Fozzy is a blessing to this house though in many ways (except when he has an accident which are getting fewer and further between!)

Katia is so happy with this little puppy!!! I am too!!! I missed having a dog in the house. The girls are just delighted to play with him and of course he has some clothes!

We are doing well and always thankful to be home as a family. The days are ocunting down before Sharayah heads off to college but that is a "positive" experience so we look forward to that. She will be getting on with her life and that is the way things should be.

Katia is doing quite well. She looks cute without those 2 teeth but her eyes are quite bad right now so pictures are out of the question. I will try to get one though:)

My dad is doing much better and planning to return to Honduras June 23rd to finish working on his house there. He loves to tinker and fix things so he is in Heaven there! He doesn't feel very "needed" here.

We have a lot going on this summer mainly with doctor appointments between Katia and myself. I started some new meds for the Fibro which seems to be helping. I had my "Mother's Day Massage" yesterday!!!! It was awesome!!! I got it done where Sharayah works (Citrus Park Mall Day Spa). WOW!!! The lady was very very very very good with me. She knew all about me and she was very helpful is the best I can say. I haven't felt this good for quite some time. She wants me to try to come once every 2 weeks but I don't know about that financially. I did spend one hour as close to heaven as I could be. She really seemed to "fix me".

Tatiana is bored!!!! She misses school. We are working on a project, "Going the extra mile" this summer. Each day, she has to do something (her choice) that shows she is "going the extra mile" to grow and learn and she journals about it. Needless to say, her journals are interesting and creative. I like to see her being creative. We are pretty homebound as a family due to Katia and finances so we try to make the most out of it. Sometimes, the best times in life are the simple times. At least for me.

KSF is working on a new summer project which we will be sharing more about as June gets here. I think it will be fantastic. It does keep us busy. Myron's work at the airport is very very busy during the summer so he will be exausted for the most part but we have a purpose in life that we don't give up on. We believe in what we do. I was really hoping I could help out with the family finances with the Arbonne Products and I still hope so. My favorite is the NutriMinC REcover Night Creme!!! I have used it for the last 6 weeks maybe now and WOW, it does work and I don't say that about many things. My face is so sensitive but this has definitely improved my little wrinkles sneaking up on me and the dry skin that I get due to the Florida Weather! I also have used their Aeroma products and love them. I can only speak of what I have tried so those are what I like. If I try something and don't care for it, I definitely can't say that I recommend it. But, by ordering any of these products, you are helping me help us so please think about it. The link is always at the bottom of the site for you to pass on. Also, if you join, you automatically save 35 percent from your orders. Worth looking into. I used to be on some weight loss products and I liked those so I promoted them. What I believe in, I promote:)

So, I will be back in the morning to update some more as I am really trying to really get my laptop back up to working but it has been a real headache. But, I will conquer that thing!!! Thanks for those of you that have been using the Message Boards to keep up with prayer requests and checking in. It is a great relief to know more people can be involved in posting responses, prayer requests and such. I can do that from my phone so I feel more in touch through that right now. My phone was actually out for 48 hours because the USB for recharging decided to break but it was under warranty and the replacement came in today!!! I am so happy. I hate to be "out of touch". We get used to these gadgets and I am definitely someone who relies on being in touch with the world.

I try to use IM with Yahoo and AOL so if you have a Yahoo or AIM ID let me know and I can add you. Just send me an email or IM. My Yahoo IM is tmsol87 as well as my AIM so it is easy to remember.

Well, I really should be getting to bed. I haven't been sleeping well so I am just exausted right now. Long nights and early mornings...

I am blessed though in many ways with my family, with Katia and my dear friends!!! I count my blessings. I have found a good thing to do before going to bed is to think about the good things that happened during the day, no matter how small they may seem. I also am happy with anything that makes me smile:) Adults don't smile as much as kids so we have to work on that:)

Lots of love, Tracy








May 28, 2007 2:57 PM
PRAYER REQUEST REPOSTED BUT I AM WORKING ON A NEW IDEA FOR THIS AREA.



Hello:)

Just a quick update (from Sharayah's Laptop actually!)

All is well here but I was emailed a very urgent silent prayer request which I wanted to add on here.

Katia looks so cute with her 2 missing teeth:)

Fozzy is doing well from his last puppy shots the other day.

We are laying low today, me and the girls, watching a movie. Not many days like that lately:)

Lots of love, Tracy






May 24, 2007 4:15 PM

SCHOOL IS OUT!!!

Tatiana just finished her last day of junior high school so next year, she is off to high school!!!

Katia will be doing summer sessions but all she cares about is that the girls are out of school:)

Katia is also EIGHT QUARTERS RICHER!!! The very kind and generous tooth fairy visited her last night. She wrote a note (with my help on spelling) that said, "Toothfairy, leave teeth please. Love, Katia" and then she drew a pretty picture of the tooth fairy. We left the teeth in their little container and sure enough, this morning there were 8 quarters and 2 teeth:)

It is just something how these minor things in life can bring such joy. Things are always such a roller coaster around here that I love the "normal" things that come about:)

We were looking at pictures from 2002 when Katia was first diagnosed. I am amazed how small Sharayah and Tatiana were back then, especially Tatiana. We thought she would never grow! Well she has and although she is still quite small, she will be in high school next year so she is growing up.

Katia hasn't grown much but her face has certainly changed as well as the maturity in her eyes. I was so proud of her yesterday getting her teeth pulled. I have to say, she is like Sharayah and I. She is TOUGH!!! Myron and Tatiana? Well, not so eager to head to the dentist! Sharayah and I have always been able to handle pain while watching the procedure take place. I had 4 wisdom teeth pulled out on the same day and I just thought that was the way everyone had theirs out. I didn't go to sleep or anything and I remember it hurt but I passed on the novecane (sp) because I have TMJ and I didn't want my jaw to lock. Anyway, that night hurt!! But, then everything felt better. I had them pulled because they were coming in wrong so they were already hurting. I figured I was just solving that problem.

Sharayah too. Teeth pulling, shots, blood tests... no problem:)

I am very proud of our Sharayah. She has remained very goal oriented and responsible. Our two older girls have been through so much with Katia being sick and me being gone for nearly a year but Myron and them pulled together and they did just fine. I am very proud of my family and very happy to always have them by my side!! When I think of that, I smile!!

Life may not always be what you plan. That is for sure.

Sharayah has qualified for a little over 75 percent of her college cost via scholarships which is a great help!!! She enjoys working and studying so I think she will do well while she is in college. I am not sure about her laundry skills but I know she can cook really well. I also know she is someone that can handle a lot of what she may come across or have thrown at her but please, always keep her in your prayers as it is so hard to not have all of your kids under one roof. I know she will be ready though to head off this Fall.

Okay, enough blubbering:)

Lots of love,

Tracy








May 23, 2007 6:00 PM

Well the teeth are out!! Come to find out, 2 more are on their way in on the top. Katia did so good!!!!!!!!!!!!!!

I promise I will TRY to update with pics tomorrow. I have so many to share that I will have to make a collage.

Also, the prayer requests are getting very behind as I have not been able to get on this computer as often or for as long. So, the links can be found on www.ladybugkatia.com and any updates that you would like to post can be added on the Message Boards until I get it back up and going.

I am really praying that things will slow down a bit. Katia's dentist saw the growth and how much it has grown in Katia's cheek. It is amazing how much has changed in a year. The GVHD Pictures can be seen here. The most recent are at the bottom.

We have to get that taken out and sent to pathology and really pray it is nothing more than a benign growth. Her counts have been a little strange lately which concerns me but we will just see. I really pray the summer will bring a lot of good news with some upcoming appointments concerning Katia's eyes (no date set yet) and her mouth (no date set yet). Those are both very sensitive areas to her.

Today, she said something that caught me off-guard. She was doing something and she bumped her face right by her right eye. She said, "Oh, that is the eye I can see good out of, be careful". I asked her what she meant and can she see good out of both eyes. She just brushed it off but I was surprised to hear that. Her right eye was the one affected by the tumor back in 2002 so the left one I always figured would be the better but now she is concerning me. I don't know. Maybe I am overthinking. I know she can develop cateracts from treatments like radiation and chemos. Just an extra note to pray for I guess:)

Lots of love to each of you and thank you for your prayers:)

Love, Tracy




May 23, 2007 1:16PM

Well, we are off to the dentist. Katia gets her two bottom teeth pulled today. It was kind of a sudden thing due to scheduling but pray everything goes well. She took a high dose of antibiotics to prepare and she isn't afraid. She gets "laughing gas" which she has never had but she just likes the sound of it.

Fozzy is MUCH BETTER!! I am feeling better. I started on some medicine to help with the fibromyalgia and I have an upcoming appt. with a neurologist.

My dad is doing well, he is actually getting very very bored. Our house doesn't have much activity to speak of.

Sharayah's graduation was awesome!!! I will post some pictures later. What a lot of graduates!!! 500 plus.

The biggest applause of course came when the last name was called:)

Well, we are off to the dentist. The cheek mass will be looked at today and get a recomendation as to what to do and who to go to.

I am eager to get that out of her mouth as well as it keeps me very very concerned as to what that really is in there.

Love, Tracy









May 21, 2007
GRADUATION DAY TOMORROW!!

HIYA:)

I am back!!! I feel quite a bit better believe it or not. Spent more downtime than normal, maybe 80 percent which is really great for me. I used a heating pad and ibuprophen and it really seemed to help. My back still feels bad but much better so I am much happier:)

Fozzy also seems to be feeling better. He was sick for 2 days with vomitting and the runs but that seems to be clearing up. We changed foods thinking maybe it was the food and that seems to be the case. Our last dog had an issue with some of those chewy kinds of food bits.

Katia is doing about the same. The newness of the puppy hasn't worn off one bit. They are just buddies and always together. She likes the fact he will lay down and watch her play. He isn't hyper at all unless we start playing with him so they are very good for eachother. Every great once in a while, he will start walking away with one of her toys but that gets solved quickly. She has a loud, "NO!" and he listens.

My dad is definitely doing much better. He is mending well and back to go out by himself to the store, reading his paper at the table, etc.

Sharayah graduates tomorrow!!!!! I can't believe it. She has been counting down to this date since high school began for her. She is a proud member of the class of 2007!! She is graduating with a 4.3 which some credit goes to the fact that I made a bet with her that had to do with getting above a 4.0. It worked!!! She is going into psychology and seeing I have used a lot of "reverse psychology" on her, it is a great field for her to get into. One big hurdle she still has is to get her actual driver's license. She still has her learner's permit. Since we don't have an extra car around here, there has been no real rush since we take her everywhere. She needs some more practice time and a car.

She changed jobs which she is very happy about. She works at a Day Spa as a receptionist. She really likes the job and the fact there are always people coming and going so she stays busy plus she gets free manicures, pedicures and mini-massages (of course she likes the job!) It also has better hours so instead of me having to pick her up at 11PM, she gets off at 8PM. Much better for everyone. Sharayah needs her sleep. She isn't much of a night person.

So, tomorrow, keep her in your prayers that she will have her graduation moment!! Afterwards she has Splash Bash which is a lot of fun for everyone. I don't think it is totally sunk in she will soon be "on her own" well kind of. She will be a college student. She will be far enough from home so she needs to get her dorm stuff together and such. But, she will be close enough in case of an emergency.

So, I have babbled but see, that means I am BACK:)

Love, Tracy

PS I have received a few emails (which I do try to respond to) about graduation cards/gifts. The PO Box for Katia is good to use and Sharayah is a gift card person. She loves to go pick stuff out. She has to save up some money also so she can move up there in August and have enough to hold her over until she can find a job. Her summer is going to be spent working two shifts at the Day Spa so hopefully she can put some money aside.

Katia has poor Fozzy in the middle of a tea party:) We aren't used to having boys around the house!!






************

May 18 2007 3:40 PM
Click HERE for the Message Board. No registration required.



WELL I DID SOMETHING TOTALLY STUPID TODAY! WE HAVE MORE THAN 100 MAYBE 200 VIDEOS AND I DECIDED TO TAKE THEM ALL FF THE SHELVES, INDEX THEM AND TRY TO SELL THEM ON EBAY. IT WAS TIRING AND MY BACK HURT BUT IT WAS A PROJECT I HAVE REALLY WANTED TO DO AND JUST BOTHERS ME TILL I GET IT DONE. I HAD THIS EXTRA DUMB IDEA I WAS GOING TO CLEAN CARPET AFTERWARDS (I AM A WORKAHOLIC). ANYWAY I GAVE UP ON THAT IDEA AND DECIDED TO JUST FINISH THE PROJECT, RUN THE VACUUM AND BATHE. I HAULED OUT TWO VERY BIG BOXES FULL OF VIDEOS TO THE GARAGE. IT HURT BUT MY BACK ALWAYS HURTS, A LOT. I RAN THE VACUUM AND WENT TO TAKE A SHOWER. I BENT DOWN TO TAKE OFF MY SOCK AND WHAMMO, THE WORST TWISTING, WRENCHING BACK PAIN EVER! IT KNOCKED THE WIND OUT OF ME AND JUST SHOCKED ME LIKE. OKAY SO THE VIDEO PROJECT IS PACKAGED BUT NOT YET LISTED, THE CARPET IS VACUMED BUT NOT CLEANED, I AM SHOWERED. SO I CALL MY POOR DOCTOR WHO IS LUCKILY (FOR HIM) ON VACATION. I WAS TOLD TO STAY OFF MY FEET AND COME GET AN XRAY ON MONDAY UNLESS I FEEL I NEED TO GO TO THE ER. I DECIDED THE ER IS NO LONGER AN OPTION FOR ME UNLESS I AM UNCONSCIOUS OR BLEEDING NON STOP SO I AM FORCED TO LAY LOW AND THAT MEANS NO COMPUTER, JUST MY PHONE SO I HAVE TO RELY ON THE MESSAGE BOARD OVER THE WEEKEND. SORRY
I KNOW I WILL GET UP. I AM TO HYPER AND HAVE TOO MUCH OF AN OCD PERSONALITY TO NOT STAY BEHIND THINGS BUT I WILL TRY TO LAY LOW.
LOVE
TRACY






May 17, 2007 9:20 AM
WBC 2.9
HGB 14.4
PLT 305
FK506 7.7

Good morning:)

We had clinic yesterday for Katia's IVIG transfusion, no not yesterday, Tuesday (wow, I am getting old!!)

So, as you probably know, busy has taken on a new meaning around here. Fozzy keeps ALL of us pretty busy. His favorite thing is emptying the bottom of the silk trees which has that mossy stuff. What a mess. When he does, I certainly don't put it back. I vacuum it up and throw it away. I just know he will go right back and do it again:)

He is housebroken!! He has proved that now very well. He did have one small accident in the house while Katia and I were at clinic. Grandpa was doggie sitting and Fozzy hasn't quite got a way of letting people know he needs to go out yet. But, one accident? I am just in awe!! He has brought a LOT of joy to this house and he is such a good playmate for Katia, really good. They are just so cute together!

Katia will soon get her two bottom pulled as well as getting that mass cut out of her cheek. It has grown bigger over the past year, a lot bigger so we are going to remove it and send it to pathology. She heard us discussing it and got pretty nervous at the idea. It probably will take a couple of weeks to line it up with an oral surgeon though so we will see. It has just really gotten big as you can see in the updated GVHD Pictures (graphic) over the last year. I was shocked when I compared the pictures. Since I see her everyday, I don't notice things in such an extreme way until I compare.

Also I was sent a link of a little boy, Thomas who could really use some prayers right now. He just turned 3 and was diagnosed with ALL in January.

I will try to update all the prayer requests over the next few days. I feel like a slacker.

Thank you for your prayers for me. One new problem is actually my hands so typing isn't the greatest thing for me. My hands feel like I was in a boxing match or something. Back is still the same but my head is feeling much better!!! That is thanks to prayers:) There is a bulging disc located in my back which may be part of the problem but they said it isn't in too bad of shape enough to try to go in and fix it.

I am scheduled to see a neurologist which I think is a good idea as there are just too many things going on at one time and I think it may be something very simple that is being overlooked.

So, please continue your prayers.

Sharayah graduates this Tuesday!!!! Rehearsals are today. She is very excited. Currently she has a hurt neck, whiplash, from some ride she went on. Sharayah is our strong one around here that is never sick or sore so we need her back up to feeling great, especially for her graduation and such.

So, I think that is everything. Boy, do I get long winded.... WOW!

If you don't hear from me, always feel free to email me. It comes to my phone which makes it easy to check. I don't get to this computer much as it really causes my back to worsen. You will hear from me much more when I get my hands back onto a laptop keyboard. Then, I just put it on the kitchen counter or on my bed and it is much easier on my back. I feel bad when I don't update the prayer requests but I will, I promise:)

Love, Tracy









May 14, 2007 12:34PM

HELP SAVE LIVES

Please be a part of saving lives at some drives going on in a lot of locations. The information can be found HERE about specific locations and you can read more about Ethan Powell, a little baby who desperately needs a match right now.

No matter how people get on the registry, and where, the registry helps ANYONE looking from ANYWHERE!!

We actually found out the Myron's younger brother Tyron is now a potential match:) The gift that keeps on giving for years to come. He registered during Katia's drives but a lot of people that registered during those drives weren't her match but have been found to be matches for meany others so if you aren't on the registry, please please take these chances to join.

Check out the Locations on Ethan's page or check with your local blood services. Swab testing is getting used more and more so there is not always the need to even give blood to be checked. NOTE: When you register, no matter why you do or who you register in honor of, remember you may be called on for anyone that needs a match, child, baby, adult, the elderly. Please always keep your records updated so the registry has an updated address and please always be willing to save anyone's life. Bone Marrow Donation is a way to save lives while you are living and sometimes even more than one life:)

Love, Tracy






May 12, 2007 9:25 PM

Today has been a very very good day!!!!

I love starting out like that!

I am updating before I put the pictures on so I can explain the pictures a bit.

As you know, Mother's Day is Sunday and most likely, next year, Sharayah will be off at college so we went off to the park and took some very special pictures of the girls together, me and the girls and just enjoyed walking around and playing a bit!

BUT, Myron and I knew we were there for another reason as well!

We got a call about a PUPPY!!! Yes, we have a puppy!!! His name is Fozzy. He was given to Katia by some friends of ours from Fore The Children and their whole family came out and surprised us with the puppy!

He is so cute:)

HE is 5 months old, born on December 25, 2006. He is a cockapoo. He is (well you can see his color in the pictures), Buff colored, 5 pounds and just adorable. We went over names on the way home and settled on Fozzy because he looks like Fozzy Bear from the Muppets and we just like the name.

He is a really good dog and we are all very happy to have him around the house. We have always had a dog until transplant but now, with permission, we have a new dog:)

Katia has been so full of giggles and playing and just so happy. It is awesome to see her so happy and we have been able to get quite a few pictures today to share.

After we picked up the puppy from the park, we got home and he peeked in the front window, met Grandpa and has basically just made himself at home! So, plan on lots of puppy pictures for many years to come. The cockapoo I had before, I had for 19 years!! The peekapoo we had before transplant we had for about 13 years, gave him to my sister and he passed away a little over a year ago now.

Fozzy has played, eaten, bathed, done his "business", played some more, slept and just peeked all over this house to see his new home. He hasn't had any accidents in the house, seems to do pretty well with some basic commands and is just so cute that he already knows his name!!

Can you feel the happiness here?

So, just to close.

Today has been a very good day and we plan to have a very special Mother's Day tomorrow. No big plans, just laying low, relaxing and everyone being home together:)

Love, Tracy

PS Now I can post the pics so make sure you click on the Photo Album










May 11, 2007 4:48 AM

Yes, the time is right, I am up:)

Just a short entry though. My MRI results are clear which is great! But, it doesn't explain the problem.

So, for right now, until I feel better, the updates are going to be on the Message Board as it just hurts to sit at my desk. I relied on my laptop alot if I didn't feel good or Katia was admitted but my phone is easy enough to jump on the message board or even just starting new journal entries on here but sometimes I just like to add on for a few days.

My dad gets his stitches out this morning. A bit of them look red and irritated so it will be good to get them taken care of and hopefully will make him feel more able to be more active. He has been walking outside with his walker and more active around the house. Home health care has been coming out 3 times a week to keep an eye on him so this will be his first appointment with the doctor.

I draw a blank mind when I sit here. My brain gets foggy....

So, thank you for your prayers. Don't worry. I will update on Katia via here. Her next appointment is an IVIG transfusion on Tuesday. She also is in the works to get those two bottom teeth pulled to make room for the new ones behind them. This will be her first tooth fairy visits when they do get out:)

Lots of love, Tracy

PS Feel free to post your own prayer requests, messages and such on the Message Board also:)









May 9, 2007 10:12 AM

Good morning:)

Okay, I guess I have been really slacking... sorry.

I have really only been checking in via my phone to check on other websites and really do much of anything. No answers on my back yet. Things move much quicker with Katia's tests so I have been spoiled.

Right now, my back, my neck and my head as well as my left leg just hurt. I don't want to whine about it as I watch Katia go day to day and I see so many others going through far worse. I just don't spend much time at the computer right now as it pretty well hurts to sit here. I used to put my laptop on the kitchen counter and I could just walk up to it and not sit down. I really am not one (unlike what a lot of people, including my family, believe) to stay at the computer long. I come and go many times. But, sitting and standing just don't feel well.

Okay, so I have whined:)

Katia is having some pretty good days right now. It is great seeing her happy and moving around. Her haircut has seemed to bring a new spunk to her step:) She is much happier that she isn't bothered by her hair having to be put up or in her face. She didn't like either choice but now, it is just lovely and she looks adorable!!

We are on the countdown to graduation in this house! 13 days and counting till Sharayah gets her diploma. She already has her WHITE gown and special tassle. She has been waiting for this moment since about 4th grade. Seriously, she is quite goal oriented and eager for the next step on her road of education. She is also about to get her driver's license!! Due to a lot of side things, Sharayah has had to wait on some things and driving was one of them. But, now she is ready:) No car, but she will have her license soon.

Tatiana is eagerly awaiting summer! She really isn't one to enjoy getting up each day for school. Sharayah and Tatiana are opposites when it comes to school. What is hard to imagine is next year, Tatiana will have to get up TWO HOURS EARLIER for school!!! I don't think she is really understanding that right now. High school is great but it is earlier:)

Katia just wants school to be done so she can keep Tatiana around the house BUT Katia will be having summer classes. She is doing kindergarten work and is currently assigned to the 1st grade so we will have to see what we are going to do from here. She will still be homebound next year but the grade has yet to be determined. Pretty much we are settled on her repeating the 1st grade and trying to move ahead instead of us pushing her ahead.

My dad? Well he is doing much better. He still has no energy to speak of but as I type he is sitting at the dining room table reading his paper (one of the highlights in his day!) He is able to get up and down much better. He is walking around more (still with the protection of his walker but not so much the need). He even made ME lunch yesterday so he is getting back to himself. I told him he has to get better so he can help take care of me:) One sick adult at a time in this house. That is the rule:)

So, that is about everything. Myron and I still stay quite busy with The Katia Solomon Foundation work and are currently working with 4 families. It is a big part of our lives but it is a part we enjoy doing and we know makes a difference. We are also (including Sharayah) working on this Arbonne and has been fun building the website as a family and reading up on things. We do work well as a team which is a GREAT thing!!!

This weekend is Mother's Day!!!!!!!!!!!!!!!!!!! I tell people all the time Mother's Day should be a Monthly, not Yearly holiday but I always look forward to Mother's Day. This year will be extra special because all 3 of my girls will be here. Next year, Sharayah will be off at college. I am not sure what to expect but I do know I usually don't have to do much of anything and I smell some yummy food being prepared in the morning:)

I also have 2 special Moms in my own life. I have been blessed with not just my own Mother but Myron's Mom. I was raised by my dad but now my Mom and I stay very much in touch via email and phone calls and I am so happy for that. Myron's Mom has been a blessing to me literally since the first time I met her! She has just been someone I could always look up to and she is just so loving and genuine and a person of great character. She is one of the most humble, honest and loving people I could ever imagine to meet and I am grateful that she is so much a part of my life. So, see Mother's Day is very special for many reasons to me:)

Okay, hopefully I can come back with some MRI results but I will sign off for now and go lay down for a bit.

Lots of love,

Tracy


*******************

May 6, 2007 4:00PM

Hello:)

Wow, no update since the 3rd? Unbelievable.

Let me catch you up. Katia is doing about the same but it does seem her eyes have been having some better days. Not great but better. She will take any improvement and comfort. She listens to the TV but hasn't been watching it much but she is walking around here with her eyes open for the most part and sleeping less which is good:)

She is loving that haircut!!! She loves the fact it doesn't get in her face nor is it pulled back in ponytails.

My dad is improving each day. He is walking around with his walker. I took him and Katia out for a walk the other day down one block and back. It was cute:) He is still totally out of energy and runs out of breath easily but he is doing better than they thought he would at this point:)

Me? I am in pain! My back is just really bothering me so much and my left leg BUT I did go have the MRI done on Saturday morning so we will see what it shows and other than that, probably start some type of treatment around the Fibromyalgia. I do need some relief. I am still a hyper person and do my regular day to day stuff but it just hurts more. I am not one to give in to pain although I do think I complain a bit more:)

My family does take very good care of me and I know how lucky I am to have them around. I do actually think this may have a lot to do with Tatiana's problems too so we are going to talk to her pediatrician. My dad feels bad with me taking care of him because I don't feel good but I can get him moving around better and then he can help take care of me:)

Please keep a young lady Kristen in your prayers. She is 22 weeks pregnant with her second child, a baby girl and has just found out she is at risk for pre-term labor. She is quite scared as you can imagine and knows how prayers can help in so many ways.

Myron stays BUSY! They say that keeps a person young so I guess it is good for him.

We are working on this Arbonne Consultant business. I like it. I know different people try different things and seeing that I have all girls, this seemed to fit well. Sharayah is headed off to college and she is wanting to give it a try also.

CAN YOU BELIEVE IT, SHE GRADUATES MAY 22ND!!!!!! My first baby, graduating!!! Unbelievable how time flies. She will be the class of 2007. Tatiana will be the class of 2011. Tatiana was 7 when Katia was born and Sharayah was 11. It is a 7/11 thing:)

Anyway, I know quite a few people have been asking about invitations but we didn't get them just due to cost involvement and everything going on around here but that is the date, May 22nd. She will then be heading off to the University of West Florida and her plan is Psychology:) She is graduating with a 4.3 so we are very proud of Sharayah!!!

Well, gotta run... no boredom around here. Love, Tracy









May 3, 2007 10:00 PM
2nd Update Today

Katia loves your comments!!! She loves her hair. She likes running her hands through and the fact it just stays looking the same no matter if she lays down or whatever. I LOVE IT!!! I keep rubbing my hands through it also:)

She is very pleased with the "beautiful" and "pretty" comments. It is really taking some getting used to when I look at her but she just greets my look with her adorable smile and that just makes me happy that she is happy.

Grandpa has been pretty active today. Of course, he visits the pantry often which means getting out of bed and using his walker. So, exercise to get food is good!

Katia's teacher brought us a fabulous dinner tonight!!! Thank you, Ms. Michelle!!!!! That was so sweet as it was something I didn't even have to think of today.

Something that came to mind is we left my dad's clothes at the hospital. He had a locker they were put in on the day of surgery. Since he came home in his pajamas and slippers, we didn't realize it. Since he only brings a few things, that means his only shoes and belt here are there to be picked up:) I feel like an idiot that we forgot his clothes but they weren't in his suitcase and I just didn't think about it... So, I will go get them tomorrow, or Myron will. Right now, he is stuck with slippers and no belt. He does get himself up and dressed and takes care of himself well. Home Health Care came out today and was pleased with how well he is doing.

As I type, I hear him pouring a bowl of cereal so his appetite is back. He doesn't realize I am still up because he is trying to be quiet:)

Lots of love, Tracy







May 3, 2007 3:15 PM

Hello:)

Today has been going well. My dad has gotten up and down and is doing well. No falls:)

He walked out on the porch and ate lunch, sat at the dining room table to eat breakfast. I tease him that food makes him move!! I don't deliver to the room:)

He is feeling better and his spirits are much better!!!!!

Katia got a TOTAL haircut today! She got the cutest (don't tell her I said cute-she likes PRETTY) pixie looking haircut!! Adorable (another word she doesn't like!) and it is all out of her face and what is left is very healthy looking hair. The ends were just all so dry and messed up.

I tried to get some pictures but of course, she won't look at the camera so I will post some of the back and sides:)

I am just happy to see that she is happy with her hair cut. She is because she gets tired of me fixing her hair all day to keep it up and out of her face. Don't have to do that anymore!

I got the Arbonne Site up and going so take a look and pass on the link if you can. It would be very helpful and I would greatly appreciate this.

Okay, let me upload these pictures. I should have them up here by 3:45 if I have no interuptions:)

Love, Tracy










May 2, 2007 1:12 PM
UPDATE 5:35 PM GRANDPA IS HOME:)

Well, I talked to my dad and he is eager to get home. I think he was very nervous when the idea of a nursing home or rehab center came up. He doesn't want to over-burden me but he also likes to be here at the house so we will work with him and just see how things go. I REALLY THINK PRAYERS AND ENCOURAGEMENT ARE DOING A GREAT DEAL FOR HIM!!! I think being back here around the house will bring improvements each day with his recovery.

As for me, I went to the doctor today. I have gone through a LOT of backpain for quite some time now. It has then spread to certain parts of my arms and both legs. I am a hyper person so I usually just go on and ignore the pain. However about 10 days ago I guess, it moved to my lower left leg and that was a bit more than I could handle seeing a bear weight on that leg (quite a bit of weight!).

Yesterday, that leg gave out causing me to fall right there at the hospital on my way to see my dad. So, that scared me enough to call the doctor. I saw him today and have an MRI of the whole back lined up for Saturday to see what is going on with that leg and such. His idea for a lot of it is Fibroymyalgia which has been brought up to me before.

So, hopefully Saturday will bring some answers and then we can see what we are dealing with it if it is just the Fibromyalgia or more.

Sounds bad for now I am putting that on the back burner till Saturday. Katia? Well, she is giggling right now:) It is a lovely sound!!!!! She is with Tatiana. I kept Tatiana home primarily because I didn't want to be by myself due to my leg and I needed to go to the doctor. Tatiana is great with Katia and keeping her amused as well as being able to handle anything that comes up. Katia's eyes are a matter all on their own. We did change the steroid down 1mg so that is good and now there will be no changes for a while. We will see how she reacts. If it weren't for the steroids keeping her so hungry, I think her mouth pain would make her not eat. BUT, her brain tells her to eat whether her mouth wants her to or not. Her mouth just looks painful inside! Her eyes also, especially at certain times of day. Her knees look bad but don't hurt her and her hips kind of hurt her depending on cream application and just activity level. She does still do PT but not that she knows about. It was always an argument for her to go in but she still has to do it for me but we make it fun:)

So, that is it for now.

Check the Message Boards for the links to the new ARBONNE PRODUCTS as well as if anything comes up that I can't get to my home computer about. My laptop no longer exist so it is just this computer or my phone and I can't update this page from my phone but the message board has been great for that!

Lots of love,

Tracy









May 2, 2007 8:30 AM

Well it appears Grandpa may be headed home today from the hospital. His doctor says he looks much better and seems more "with it" this morning.

I have a doctors appointment this morning and then I will run over to the hospital to see what is going on. He is going to be coming home using a walker (well I will drive him!) and probably a bedside comode (however that is spelled) but hopefully, once he is home he will get better with each day and more back to himself. I think it will definitely help him mentally to hear the noise around the house instead of being all by himself. He feels ignored at the hospital since the nurses don't stay with him or come in much and I think that has a lot of the reason he has been the way he is.

So, I will update later here or on the Message Board (link at top of site).

Thanks so much for checking in.

Love, Tracy










April 30, 2007 7:50 PM

Hello:)

Things here are much better today than yesterday so I thought I would update:)

I am glad people have been able to follow and keep up via The Message Board as it has proven to be a very useful tool and easy for me to update.

My dad is doing much better today than yesterday!!! Yesterday, he was so "out of it" and just not making any sense. He had everyone worried. He is just now being able to use the bathroom (number 1) on his own and that is a good sign. He is sitting up in his bed and trying to go for 2 walks each day with the walker. Maybe, just maybe, he will come home tomorrow. My rules is he has to be a bit more steady, using the bathroom on his own and understand he has to eat and drink good. I think that is fair.

Twice now, he has gone to fall and I catch him which is not good on me. Needless to say, I am kind extremely sore right now. My body is not built to catch a full grown adult. I have given up carrying Katia unless it is absolutely necessary.

I have a prayer request which I will add up with the rest tomorrow when I get more info but for now, please stop by Carter Finger's Site as he really needs prayers for a miracle. His disease is rapidly spreading!

Katia is doing okay today. We are going to go down to 10mg of steroid today and stop there with the weaning. Then maybe in a month, try to wean another medicine. She is still having extreme problems with her eyes but she tries to go through her day and play some but spends a lot of time "resting her eyes".

We are on the look out for a dog for her (yes, I said a dog!!!!)

We are looking for not so much a puppy but maybe a puppy. Pretty specific on breeds for shedding purposes and colors because she has her wishes. We are looking along the lines of a cock-a-poo or yorki-poo, something that won't get any bigger than maybe 12 pounds, all dark colors, preferably mostly black. Here is an example picture.


CUTE, HUH?

There are a few mixes with poodles that are great like terrier mixed with poodles and such. So we are in no rush, just looking and feel the right one will present itself:)

It has been a long wait for the okay to get a dog so a little more waiting isn't going to feel so bad.

Have a good evening:)

I feel like I have been gone from home more than at home so I am going to spend some time catching up with the girls:)

Love, Tracy


******

April 28, 2007 11:20 PM

Hello...I am home so I wanted to jump on here and update. I didn't want to do this from my phone because last time I did that, I erased all the HTML coding it takes to keep this page up (not a good idea) so that is why I am working through that message board. SO, if you don't hear from me, you can check over there and there is no registering or anything like that.

So, first I will start with Katia. I feel bad because she misses me. She is so used to having me all to herself but she understands that we have to help Grandpa right now. Last night we had the fundraiser down in YBor City and it was a very fun event and I want to thank everyone for attending!!

It was a very late night so needless to say, I am at the age, that doesn't work well with me. So, this morning Katia was up before me and trying to get me up. (COFFEE!!!!) Anyway, I woke up and she was playing with my hair and rubbing my face and saying she missed me. She is TOO SWEET!

So, then Myron and I went and visited my dad for a bit. He had a small anxiety attack earlier in the day but when we got there, he had just gone for a walk he had a bath and was resting in bed. He looked okay.

So, we stayed for a bit. We came back home and I told him I would return later in the afternoon. I was doing some running around with Tatiana and Katia and his nurse called saying he had another anxiety attack, much worse, they gave him ativan but she wanted me to know. He couldn't talk on the phone yet but he seemed to be improving. So, I dropped off Tatiana and Katia and went to the hospital. When I got there, he seemed anxious but better and was glad I was there. So, I stayed for a couple of hours and just made sure he ate and had what he needed, talked to his daytime nurse (it was about time for shift change) and I left.

All seemed okay.

Then about an hour after I get home, he calls. He was out of breath and in a panic and was just not being able to communicate that with his nurse. He wanted me to call them so I told him just push his nurse call button and keep me on the phone so I could speak with her. I did and after a little going back and forth (which I fully understand nurses have their hands full) she did get him his next doses of medicines (Ativan included) and stayed there with him until he was breathing better. He is still on oxygen but his oxygen level was fine.

It seems he panics when he thinks he isn't being understood or things get out of a normal routine for him. Which seems to be around shift change time. So, he is going to get his next dose of medicines BEFORE shift change time so they can change shifts and such without this going on hopefully.

Katia heard him on the phone with me tonight and he wasn't breathing well and he was in a panic and she said, "Tell him to breathe and watch TV". I didn't even second guess her and told him what she said. Hey, she knows:) It is good to focus on something and not concentrate so much on what is going wrong at the moment.

So, hopefully he can have a quiet night. His doctors have been great with keeping up with him, visiting him, answering my numerous calls and such. I have to really say they have shown a great deal of compassion for him and the fact he is nervous there and just wants to feel good. His back surgery seems to be a 100 percent success. It is just setbacks with what seems to be 2 infections and this oxygen need right now. He is also not able to urinate and is relying on a catheter so they are going to try going without it again tomorrow. That is one big thing keeping him there along with he needs to be more steady on his feet and off the oxygen.

I really pray tomorrow brings a BIG difference in a positive way!!

Thank you for your prayers and if you don't hear from me on here, check over the Message Board. There are also some prayer requests over there that others are posting that could use your prayers.

Lots of love, Tracy








April 28, 2007 6:45PM

I just updated on my dad on that Message Board. it is easier to update over there.

My dad is still in the hospital with a few things going on so please continue your prayers.

Love, Tracy


**************

April 27, 2007 12:48 PM
Add ons 1:50 PM

Prayer Request:

I appreciate each of your prayers for my dad and he very much appreciates knowing that he is being prayed for. He is dealing with a UTI right now and also some breathing issues. He just feels that he can't catch his breath.

He isn't the kind of patient to communicate very well so he just gets frustrated and he feels bad for feeling bad. I really can't think of another way to put it into words.

So, please pray for him.

We have the fundraiser tonight so things should slow down some after that. I am feeling better (thank goodness) and I am drinking TONS of water! A lot of you are asking:)

Thank you for your prayers for me as well. I just didn't have it in my schedule to get sick yet:)

Katia is having an okay day. She keeps us in the dark (literally) so the curtains stay closed and the lights off. I am used to it actually. She always used to have all the lights off in her hospital rooms so I function better I think in the dark just from so much practice.

I am keeping the pictures from the Fashion Show up until Katia is feeling better and can get some new (non-GVHD) pictures up. Hopefully soon:)

Lots of love,

Tracy

PS They have him on oxygen to help him with the breathing issues and his sister is going to be spending the evening with him. His sister has just always been there to help take care of any of the family:) Thank you, Aunt Marilyn!!!








April 26, 2007 3:15 PM

Hello:)

I just wanted to jump on here and ask for a prayer request. My dad started running a fever today and now he is also having urinary issues so a urologist should be seeing him shortly.

I haven't gone in today because this kidney infection seemed to be improving but now not so much. I just feel pretty crappy to say the least BUT I don't complain because I know too many others are going through so much more. There was another prescription called in for me but I have to pick it up:)

Katia is having a so so day. Not much changes with her on a day to day basis right now so the prayer is that things will change for the better soon.

Thanks for checking in:)

Love, Tracy

PS Did you see the 3 million hit mark was passed? WOW!!







April 25, 2007 2:45 PM

It has just been Katia and I at home for the most part today so we have gotten caught up on a few things. When Myron and Sharayah get home, Myron and I will head out to the hospital to see my dad for a bit. He sounds better today though on the phone, much clearer and easier to understand. The PT (physical therapist) was there to get him out of bed and walk a bit.

I get quite a few emails asking about Katia's particular GVHD. I usually answer them or update here but today I am going to post kind of a detailed update about Katia's GVHD. It has been nearly a year since we took pictures for comparisons so we did that today also.

So, here is where she stands right now and what our long term "idea" is.

First her GVHD is painful in certain areas and not so much in others. Due to the GVHD, she has very thickened, hardened skin in her hips which becomes painful as it isn't able to stretch so it hurts as it is unflexible with hip movement. She has lotion she uses to keep it from scaling and peeling but the hardening is permanent and effects 3 to 4 layers of her skin in that area on both hips.

Her knees have the same thing but the skin is just thickened and hard but not as stretched so they look painful and irritated at times but she doesn't complain they hurt.

Her mouth gets a lot of mouth sores and has one permanent enlarged area in her cheek. Her mouth improves and gets worse with no real explination and she has learned to eat without biting the enlarged area but somedays are worse than others with pain.

Her eyes are the most ongoing and painful issues that more effect her quality of life, school, sleep, going outside, riding in the car or even having houselights on. That is what causes her the most ongoing pain and what causes us the most grief as we know it effects her comfort and happiness and is effecting her schooling.

For all of this she remains on immune suppressing medications for an unknown amount of time. Maybe one day her body will just stop rejecting her marrow. Maybe she will be on her medicines for a long long time. Maybe a new treatment will come along or a trial drug that will work. The steroids seem to be the one thing that keeps the GVHD from taking over her. She has been on them since transplant in February 2004 and they are stunting her growth completely, hard on her bones having caused severe osteoporosis in her hips and spine and just aren't really holding the GVHD back the way they used to BUT we can't seem to wean them down all the way or she flares up with such severe GVHD, it could be fatal so for now, we just keep her on the same drugs as long as need be or until her body accepts the marrow or a new treatment comes along.

She is free of leukemia. She does stay pretty happy, does't complain much and accepts her life as a way of life. She smiles and laughs a LOT. She is very loving and a joy to be around. She is always full of hugs and kisses for me. Sometimes she is very very moody but that is due to steroids and not feeling well.

So, that is pretty well a detailed idea of what is going on and what our hopes and ideas are at this time.

Love, Tracy










April 25, 2007 12:04 AM

Yep, it is late. Long day, long long day!

But, surgery for my dad is done. They went in and removed a synovial cyst about the size of a walnut. There was no herniated disk which was good news. They also expaned some spinal area that was thinning so he should come out of this feeling better than even before all of this.

The surgery lasted about 2 hours plus and recovery maybe over an hour but he got up to his room and when I left around 9PM, he was anxious (he doesn't like to be alone) but he was in good hands.

There was some concern today over an "area" that showed up on his chest x-ray so that is going to be further looked into, hopefully it is just something that is nothing.

The plan is he should be home Friday or Saturday to recover the rest of the way here. Friday we have our big event that benefits the Katia Solomon Foundation so if you are local, please come out!!! We would love to see you out there. It is a Bachelor/Bachelorette Auction but we also have a package with Ryan Nece (Bucs Player) that would be a lunch date, tour of their state of the art facilities and an autographed football so that is perfect for a family to bid on for their child or a dad and son to go out with Ryan Nece and have some good quality time!

There is also some new packages still coming in. I will add more about these tomorrow.

I need to update the KSF website with the new info as well (just thought of that!)

It has a been a long few weeks with a lot going on.

Remember, if you don't hear from me, check out the Message Board as I can add to that and update from my phone and it is really catching on to the fact that anyone can talk about anything! It is not just something around Katia and my family or KSF. It is open to discussions so please check it out, pass it around and let's "Stay In Touch" which is the name of the Board:)

So, if you are looking for updated info and I haven't posted here, check there:)

I want to thank my Aunt Marilyn (my dad's sister) for spending the day with me while my dad was in pre-op, surgery, recovery and all the way up to his room. We had a nice day together (thank you Aunt Marilyn!!!)

Love, Tracy


******

April 23, 2007 8:30 PM

Wow, it is later than I thought....

Well tomorrow is surgery day for my dad. We will go in around 9AM and surgery is at 11AM. Hopefully he will be done by around 2PM to 3PM and everything will go according to plan.

The are supposed to make an incision of about 5 to 6 inches and he should be in the hospital for about 3 days recovering.

I will update via my phone on the Message Board which has become quite handy and is catching on well. Please take a chance to go by there and feel free to post on there.

Katia? Well, her eyes have been horrible tonight! She is just keeping them closed or wearing her sunglasses all the time. She has a really good pair of glasses from the American Cancer Society (thanks, Karen) and those things have really been good for her plus she gets a lot of compliments that they look cool!!!

Please pray that the doctors and Miami and can work on and come up with a plan to give Katia some much needed, long term relief.

Me? Well, my kidney infection is going away and I am so relieved!!! That was bad. My back still hurts quite a bit but it is getting better. I am not one to listen and slow down so my back hurting is 100 percent my fault I think:) I take the blame!

Also, I ask you to pray for one of my uncles. It seems he had a biopsy taken of a tumor behind his ear and it has shown to be malignant. This is my dad's older brother.

I still think there should be an International Holiday that nothing can go wrong for a whole day and everyone can just relax. I get nervous to turn on the news right now and my phone seems to get non-stop "Breaking News Alerts".

I tell you one thing that helps me get through each day is prayer and faith. I read something somewhere, probably on a site or in an email about thanking God for stop lights and traffic! Yes, you read that right. Well, it went on to say that it was God providing you with a moment, a break. I think about that everytime I am at a light now or stuck on the bridge heading back from clinic. It really does help to think of it that way. I kind of look around and just wonder what other people around me may be going through. What are they thinking about in their cars? What are they listening to on the radio. I think I literally mouth the word, "Thank you" (I guess that is two words) every time I get to a stop light. Luckily I don't drive a stick shift anymore.

But seriously, try to think of those times as breaks God is giving you. I guess it is hard to do if you are running late but if you leave 10 minutes earlier, you may really have a lot of "breaks" in traffic and at those red lights:)

Love, Tracy










April 22, 2007 3:50 PM

I am very saddened to say that Angel Taylor A. passed away this morning. Please keep her family in your prayers at this time. Taylor fought a long hard battle and remained strong throughout.

Love, Tracy









April 21, 2007 2:22 PM

Hello:)

Feeling better than yesterday so that is good.

I wanted to add a small update about Pastor Harold Warner. I had mentioned him earlier that he was diagnosed with bone cancer but also had a fungal infection that needed to be cleared up before starting chemo. I just spoke with his wife and he did get the infection cleared up and has had 2 chemo treatments so far and is continuing treatments. They very much appreciate the prayers. So, prayers are working:)

I mainly wanted to update on his health as I hadn't for a while and I know a few people that do check this website actually recognized his name as he has traveled around the world as an evangelist and helped train many pastors in opening their own churches. He has continued this until just before being diagnosed.

The weather here today is perfect!!! Someone asked if we had seen any ladybugs recently. Actually yes:) The day I was taking my dad to the ER after he arrived, there was one crawling on my car. That just made my day better.

Have a good weekend:)

Love, Tracy








April 20, 2007 4:22 PM

Hello.

Okay, I guess I have seemed a bit out of touch lately, I felt LOUSY!!!

But, the good news is I have a kidney infection! That explains it and I am now on antibiotics so I should be on the mend hopefully very soon.

I added the prayer request for Taylor so please keep her in your prayers.

I know we are coming up on a weekend and this week has just been a draining and horrible week with so much going on around our country. There are a lot of prayers needed for just so so many. Oprah said something the other day that has brough our family comfort through the last 5 years, "So many people you don't even know are praying for you." That is true and so very very encouraging and uplifting. Prayers are good.

Sometimes the prayers are to just help someone feel better, bring answers to an exausted treatment and offer hope for more options, financial help, physical strength, rest, etc.

I have a new prayer request. There is no site to this and it is a very sad situation that is already coming to an end. I can't give too much information but it involves a 3 year old neuroblastoma patient who is now near the end of her journey. She has a little brother just over one year old. The thing is she is now under the care of a "legal guardian" and they are unable to handle funeral expenses. This doesn't fall under the Katia Solomon Foundation so as a foundation, we can't help BUT, I don't believe in just not helping so I try to present the situation to as many people as possible to see if help can be found. As a foundation, we have helped with numerous funerals and it is just a sad thing to face but also it helps to know you are helping someone and their loved ones through a very tragic time in their lives when they are just beyond exaustion and sadness.

So, if you can pass this on and possibly reach me via email (tmsol87@aol.com), I will be in contact with the family over this weekend. The little girl is not expected to make it through the weekend though so this is an urgent need.

Update on Katia... Katia is doing about the same. Her biggest problem is her eyes. Last night she was walking around here with a cane leading her way because she just couldn't open her eyes, they just hurt. BUT, today has been better:) We have gone down one more mg. on her steroids and when we reach 10mg a day, she will stop weaning those and we will start trying to wean her Cellcept.

My dad? My dad is pre-registered and waiting for surgery next Tuesday. He is nervous but so eager to get it out of the way. He has a very assuring doctor and has had numerous opinions so I think he is secure in what is going on and that it is being handled in the best way by the best doctor. He very much appreciates the fact that so many are praying for him and he was surprised when he even got some Get Well cards:) Thank you!!

Have a good weekend and hopefully this will be a safe weekend all over.

Love, Tracy
tmsol87@aol.com











April 20, 2007 7:43 AM

Please keep Taylor and her family in your prayers as they are going through a very critical time with Taylor. Taylor is in the hospital at the moment but they plan to get her out and home on 24 hospice care. Please pray for her to feel better and for her families ongoing strength and encouragment.

Love, Tracy









April 18, 2007 11:15 AM
PRAY REQUEST UPDATED 8pm


WBC 3.10 (low)
HGB 13.4
PLT 361
ANC 1400
FK506 8.2 (good)
Creatinine Clearance (pending)

Hello.

I am sorry, I didn't jump on here yesterday and update. I thought about, I wanted to but things just get so busy sometimes. I know you know what I mean.

Katia's appointment went smoothly yesterday. Her port seemed like it wasn't going to work but then it started working perfectly! I was happy about that.

This morning. My dad went to do his pre-op workup with blood work, EKG and still has a chest x-ray to go do. He is waiting for me to be ready to go do that. Things here have been pretty stressful lately. There is just a lot going on as you can imagine so I ask you keep that in your prayers.

I haven't had much of a chance to really watch the news but I feel so bad for the families and that whole town in Virginia affected by this recent horrible act of violence. It breaks my heart to see life taken without reason. I could go and on but it is just really upsetting to me. People fight to live, people work hard in life, people are put here to make a difference and then, they are suddenly gone just because. So sad.

I have a silent prayer request to post here. It is something very close to me. I will share that.

Also, I haven't had a chance to get around to any other sites for the last 2 days but please feel free to use the Message Board for any updates or further prayer requests. The message board is really working out well. Hopefully the more people that get involved, the more it can accomplish and help.

Katia got her report card yesterday. She is pretty much where we thought she would be. Although she is in 1st grade she is still doing Kindergarten work but her effort is great! I always joke that she is never late to class:)

Well, that is it for now. Thank you for your prayers. My dad has surgery on the 24th and he is very eager still to get on the road to recovery and off the road of waiting.

Love, Tracy











April 16, 2007 11:39 AM

Hello:)

We are waiting for Ms. Michelle so Katia is sitting at the table ready for school:)

My dad is actually sitting at the table reading the newspaper (a daily thing he looks forward to) so he is feeling better right now. He is supposed to stay in bed as much as possible but he has to lay the newspaper in front of him to read it. So, I am not griping at him to get back in bed:)

I got a good night of sleep so I feel better. There is just a lot going on right now between Katia, my dad, this upcoming Bachelor/Bachelorette Auction for the Foundation, etc.

Katia's next appointment is tomorrow. She will be at clinic most of the day for IVIG which she really needs. She has put on about 3 pounds (mind you she is only 3 feet tall so that is quite a bit) of water weight it appears. That could be caused by the steroids but we are also collecting urine all day today to hand in to check her kidney function. The appointment tomorrow MAY be changed to Wednesday so we will see.

My dad's next appointment is Friday for PreOp and then the Surgery is set for Tuesday April 24th at UCH. He is looking forward to getting that behind him so he can start hopefully really feeling better and getting better. Right now he is totally relying on steroids and pain meds to feel better. Without those, on a scale of 1 to 10 for pain, he is a 12.

I appreciate the involvement on the Message Board. I think once it gets out there, it will really catch on and can be used as a good form of communication between each of you:) Like I have said in the past, I enjoy following you through your guestbook entries or emails and I think we can each learn a lot from others. Parents or caregivers of other kids going through illnesses can get on there and communicate back and forth.

So, hopefully it catches on:)

Lots of love, Tracy







April 15, 2007
7:10 PM

5 years ago today, Katia was diagnosed with leukemia. to most people this is tax day and I actually thought about that in the ambulance that day from Tampa General to All Children's.

So a lot has happened in 5 years. Some day I will put it in my own words in a book:)

I want Katia to help me:)

I have learned more from her than she has learned from me.

Update on my dad. He is here and happy to have been discharged. they sent him home on antibiotics until his surgery on the 24th. He is very eager to get the surgery behind him

He is run down though so hopefully he can rest over the next few days and not be in too much pain.

I am totally worn down which is actually unusual for my hyper self so other than Katia having school Monday and clinic all day Tuesday (IVIG transfusion) I plan to lay low:)

thank you for your prayers, mail for my dad, Tati and of course Katia:)

the USPS delivers a lot of daily smiles to a lot of people!

The link to Katia's message board is above. it is nice to see people using it. it is a good way for each of you to get to know each other, ask questions, post prayer requests, etc.

Love

Tracy


************

April 14, 2007 12:35 PM

Hello:)

I am just jumping on here quickly to update as I am headed out to the hospital.

After a 6 1/2 hour wait in the ER from 4PM to 11:30 PM, my dad was finally taken back to the ER beds. They accessed him and he was getting worse and worse. Delerious, fevers, chills, did I say delirious, he couldn't walk, he couldn't pee, nothing was going right for a while and he was just moaning and crying out.

Finally, the started him on fluids and antibiotics and after running blood cultures and regular labs, they gave him some tylenol for the fever.

After about 2AM, he slowly started coming back around and they admitted him to the floor around 4AM. I got home about 5AM, long night/morning.

He felt guilty for keeping me out so long but I told him I am used to it and I know he would do the same for me, he would:)

So, today the plan is to see what the cultures grow and possibly send him home on antibiotics to LAY LOW! He is kind of a handful there I understand. Soon after I left, he tried to get up to go to the bathroom and pulled the IV out of his hand causing quite a bleed as he is always on blood thinners... not a good thing but they got him cleaned up and back in bed.

I just talked to him on the phone and he is making sense again. He doesn't remember a lot of last night which is good as the ER was quite busy with a lot going on which would have just caused him a lot of stress and concern for things going on in there with others. That is a very sad place and a lot of people are going through a lot of different things including some losses from a big car accident. Please keep those families and friends in your prayers.

Well, I better finish up and get back over there. Hopefully he comes home today. I can take care of him as long as he isn't falling down and he seems more stable.

Lots of love,

Tracy

PS I can update the Message Board from my phone so if you don't hear from me, check there:)








April 13, 2007 12:52 PM

Hello:)

We are back. Surgery is set for Tuesday April 24th. The neurosurgeon says there is a still a bit of uncertainty as the films from yesterday show another area on the other side of the spine. He may have to remove more of the disc than he is planning on once he gets in there but he is assured this is not a tumor at all and that my dad can plan on a full recovery within about 3 to 4 weeks following surgery. Usually I would say my dad bounces back from anything quicker than one would think but then again, I have never seen him like he is now. He is bundled up napping right now. He is still very dizzy but they said that should clear up over the next 24 to 48 hours. He hasn't had any nausea but he had a lot of GERD last night and kept having problems waking up and coughing and coughing during the night. My ear was open for anything so I sleep lightly. I kept going in and checking on him. I just didn't want him up and about and falling down.

Well I was delayed. My dad started feeling very bad with chills and fevers so he may be going in?

Love, Tracy





April 13, 2007 8:00 AM

We are off to see the neurosurgeon this morning to find out DETAILS.

Love, Tracy

PS Thank you for all Katia's Message Board entries. Hopefully it will be good for opening up communication between a lot of you that follow Katia's site plus a place to ask others about their experiences with treatments, medications and such. Anyone can post but a SUBJECT LINE will allow others to reply:)

Love, Tracy









April 12, 2007 2:28 PM

First, I want to say Happy Birthday to my nephew Casey today:)
He is turning 15 years old.

We went very early this morning to University Community for my dad to have a Myelogram done as one last test to better see (they is still some uncertainty) what is going on in there prior to surgery.

He said that hurt VERY BAD when they put the needle in his spine and injected the dye. I know that hurt but hopefully it will give a more clear picture so there are no surprises come surgery day. Surgery will take place the week of the 23rd not sure on a definite date though. Thank you for your prayers and sharing your experiences for those that have gone through back issues and such. It is greatly appreciated!

So, I thought...a lot of you follow Katia and also follow each other because you have become accustomed (sp) to seeing listings in the guestbook. Plus the guestbook is a perfect place to put a prayer request out there when I am unable to get right onto something. So, how about a message board? You know me, I definitely believe in communication and networking of prayer request so the more people that can see the updates on those in need of prayers or share similar experiences with others, I think it would just be a great idea!

So, keep an eye out and we will see how it works. I will try to get one up and going although I have no clue HOW, I am reasonably sure I can figure it out:)

ADDED 2:50 PM~ THAT WAS EASY! OKAY LET'S SEE HOW THIS WORKS:) HERE IS THE LINK TO KATIA'S LADYBUG CLUB MESSAGE BOARD! (Everyone is welcome!)

Katia is doing okay today. Her eyes are again giving her a very bad time today. I don't know what causes some days to be worse than others because, for the most part, she is home everyday so the environment really doesn't change. But, she said they are very sore inside. They hurt behind her eyeballs. That is in her words.

So, please keep that in prayers.

I will update later.

Right now my dad is home and is SUPPOSED to stay in bed, drink a LOT of water. However, he is unable to swallow the water so I just put a call into his doctor. We about went to the ER last night but then the problem went away when he fell asleep. He is in a lot of pain though and the pain meds have stopped working so he has shooting pain throughout his back, hip and left leg down to his calf muscle. He tries not to complain but you can easily see by looking at him that he is in pain and feels bad. I have never seen him like this so it is weird to me as even though I am much much younger, he is usually the one with more energy and helping me out or pick things up for me. I have always been the weaker and frail boned one in my family so it is just unusual to him to have people taking care of him but we are and we are keeping him well fed (gotta love those steroids) and keep checking on him and keeping him as comfortable as possible.

I will update later.

Love, Tracy





***********

April 11, 2007 11:14 AM
NEW PRAYER REQUEST ABOVE FOR RACHEL H.


Good morning:)

First I want to update a bit on my dad's appointment. He needs to have one more scan done tomorrow in the hospital. A myelogram. The spelling may abe off a bit but it is where they inject the dye into his spine and look specifically at the problem area up close. His surgeon wants to do that so it limits getting into surgery and finding a suprise.

His feeling is either a herniated disc or a herniated cysts. Both can be corrected so that is good. He would then be having surgery not this coming week (the doctor will be at a seminar that week) but the following week. Not sure on the date yet. That would be the week of the 23rd. He would spend a few days in the hospital and then come back to my house and recover for about 3 weeks or so. He should be able to expect a full recovery!! That was good news yesterday and well worth the trip to Zephyrhills (in the rain). I am not the best driver but nobody behind me on the road seemed to mind me driving so slowly:)

The car is back up and going!! The list of problems they gave me and the scare they gave me seemed to be a little "exagerated" to say the least. It ended up 2 tires were about to blow but it wasn't due to a lot of things that were wrong but that the car had gotten very bad out of alignment. So, that was an answer to prayer and it drives and feels much better.

Car battery $80
New tires $131.00
Alignement $59.95
Peace of mind and safe driving! PRICELESS

I am grateful, so grateful that I have the car back and feel safe driving it. Plus it is 90 days, no interest. That is good:)

I like to share good news as it seems so many times I am asking for prayers for Katia or others. I do like to follow up and keep in touch to see how things continue to go.

Another bit of good news is that although Katia's eyes are still at their regular level of pain and irritation, they have not gone back to being as extremely bad as they were last week. That was bad, very bad. She was just "over it" and so upset and it was breaking our hearts. However, I think there is a plan of action being worked out that may hopefully solve her eye problems for good even if it is with continued treatment of some sort. I am sure whatever can be done for her will help a lot of others going through eye trouble due to GVHD.

I want to ask you to pray for a little boy Oscar who is preparing for transplant. Myron spoke to his dad last night and they are just very nervous and could really use prayers. He doesn't have a website but I will try to keep you posted as we find out how things are going via his dad.

Thank you:)

Love, Tracy








April 10, 2007 12:46 PM

Hello:)

We will be headed over to my dad's appointment soon which will hopefully not only bring some answers to sum up the MRIs but also a treatment plan whether it be surgery, treatments or whatever. I know he is nervous that an "answer" may be something he doesn't like but right now we are stuck in the middle just not knowing and he is continuing to get worse and be in more pain. I don't know how bad it would be if he wasn't regularly on steroids and pain medication (vicodin) because even those are doing less and less for him now.

His older brother also had a biopsy yesterday because of a concerning lump behind his ear and he should resolve the results from that early next week.

There is a lot going on right now.

Katia has an appointment on Friday for her IVIG transfusion and Thursday we will collect urine all day so they can do the Creatinine Clearance test to see how her kidneys are doing at this time.

Normally I feel so much more organized than right now, especially with my daily routines such as checking on other sites and updating prayer request so if you know of any updates on those listed, please feel free to email me. The email address is at the bottom of this page. I really appreciate it.

It has been raining and cold here the last few days which is weird for this time of year.

I better sum this up. Katia's hair needs some attention before we leave. Right now it looks like an egg nest. It is all over the place:)

Love, Tracy












April 9, 2007 10:13 AM

THE BROWN SHIRT HAS BEEN FOUND! After a long and exausting search, it was found the following day. Do you know where? It was under a big teddy bear! The teddy bear was sitting on top of it. How it got there? No clue. We retraced steps, turned over stone (not every bear obviously) over and searched and searched. I think I was more panicked than Katia.

I hope everyone had a good Easter. We had a nice devotion, watched The Nativity Story and had an easter egg hunt in the living room. Since Katia's eyes have been hurting so much, we didn't even venture out to the back porch.

To me, her eyes look a bit better though. We did do some reading last night. "Dick and Jane". We are nearing the end of this book which is a lot of books in one.

I will probably update later today. Today, we go pick up my dad's films to have them for tomorrow's appointment with the neurosurgeon. I am eager to hear what the neurosurgeon has to say and what these last 2 films read. We haven't gotten the reports. We just know they wanted a repeat which we did.

Thank you for your prayers.

Love, Tracy











April 7, 2007 10:17 PM

MISSING


1 Brown Shirt


Picture taken January 2005





This shirt is needed for sleeping, napping, hugging, holding, padding, eye covering, head covering, comfort and LOVE.

This shirt is 7 1/2 years old (almost), in perfect shape, no tears, lose threads of any kind. It has been taken care of with lots of TLC and has traveled back and forth over the bridge and back many many times. It has been on an airplane too!

If found, please return to Ladybug Katia. She is missing her shirt.


Okay, seriously, we can not find that shirt anywhere!! It has to be here but where? She had it last night and today. She had it on her head part of today but now, at bedtime (well we have been looking for a while since 9PM) it is nowhere to be found. We have looked everywhere I can think of but Katia does have a problem with hiding things to protect them so... but she can't remember!

Anyway, she is in bed with what we call the "subsitute shirt". It is also another shirt of mine and has had to be used in the past if the brown shirt had to be washed during the night due to puking, pooping, etc.

So, hopefully she has a good night sleep and we find that shirt!

Have a Happy Happy Easter:)

Love, Tracy












April 6, 2007 5:23 PM

Hello:)

Amy, I will take you up on that cleaning thing one day:)

First, I hope each of you will have a nice and safe Easter Weekend. Easter is a very special time to us as the whole meaning behind Easter brings so much to us as Christians. I am not sure how I personally would have gotten through the last 5 years without my faith and belief in God and the fact that there is so much more than just this life here on earth.

Katia's eyes are still quite bad. It seems there is a "plan" maybe in the works in Miami so I guess we will be planning another trip to Bascom Palmer Eye Institute. It is always better the second time around as we learned a lot from the first trip and know some things to work out ahead of time. I am not sure when yet but of course, I will post. Katia really needs some relief and this is the one thing that really bothers her most. Whether it is totally tied to GVHD, we aren't sure but I don't think so. I think it is just everything from tumor, radiation, chemos, side effects to medications and GVHD. So, we have a lot to discuss and get lined up before we go so we have a definite plan of not so much ACTION I guess but a starting point at getting her to feel better. She amazes me though. Right now she is on the back porch playing with Tatiana but her hand is blocking her eyes from the light. Luckily, today it is not so bright outside (at least not on the back porch) but she is constantly holding her eyes, blocking her eyes and they are just very sensitive. Usually, I take pictures but I don't even want to do that right now. They are just that sensitive looking and irritated.

I did get some Easter eggs for her today so hopefully she will be up to finding them. We will just hide them in the house anyway. My dad says he needs a flashlight to get around because we keep the house so dark:)

My dad has an appointment this Tuesday and Katia on Friday. I really hope Tuesday brings some answers to my dad as his pain has increased as well as his need for pain medication. Katia will spend a good part of the day at clinic on Friday to get her IVIG transfusion and labs. She had her PFT (pulmonary function test) last week so hopefully she can get the IVIG and get a week to 10 days off. I really want to be able to get a "plan of action" for my dad and get him headed to feeling better.

Myron is feeling somewhat better. He is back at work:) I think he just wears himself down which never allows him to fully recuperated from being sick.

Well, that is about it for now I guess, I hope.

I did get around to check on some sites although I didn't update the prayer request section. They are there for you to click on. I know Taylor A., Samantha Lee, and quite a few others definitely need your prayers.

Also, please keep my Mom in your prayers. It was one year ago yesterday that she lost her husband (not my dad) to leukemia AML, same kind Katia has. It took his life in just a few days.

I have many prayer request in my head so I will just say to please pray for the prayer request I have mentioned, haven't mentioned and don't even know about.

Love, Tracy










April 5, 2007 10:14 PM

Hello:)

First, thank you for your prayers. I had an email from someone concerning one of the silent prayer request. Amazing update! Your prayers are not just giving strength but also are just unfolding some unseen options. Just a quick update on that.

Also, my car is slowly on the mend:) I am so happy!! It seems like such a weird thing to me to ask for prayers concerning a car but I really rely on and need that car and prayers are working. It seems some things aren't as critical as they were said to be, maybe because someone was trying to take advantage of me... I don't know but I DO KNOW prayers are being answered.

Please keep Katia in your prayers tonight for those eyes of hers. They are REALLY bothering her so bad today and into the night. She is blocking them, keeping them closed and they just look very painful. So, please pray for her. I feel so bad for her as this is such an ongoing issue and her eyes are already so sensitive.

On a positive note, well not so much positive but more of a example of how amazing Katia is to me. Tonight, she was laying with a cloth on her eyes. I could tell they were still really hurting her because she had her hand squeezing the brown shirt really hard. BUT, she was also sitting there singing to herself and rubbing her two cute little feet together under her blanket. Part of her looked so content while the other part looked so painful. It was like she was trying to get past the pain. I am proud of her as you can tell but I learn so much from her on a daily basis. I am sure I learn more from her than she learns from me. That is a certainty:)

Love, Tracy



***************

April 4, 2007 6:44 PM

Hello:)

I love reading the messages in the guestbook! I really appreciate the messages. I laughed at the one about Myron on the front porch with a bat. Believe it or not, that would be me! Myron is very protective of his daughters but I am OVER protective I think. They appreciate it more as they get older but they always know I know where they are and what they are doing:)

Myron seemed quite a bit worse this morning but this evening he seems to be improving. He went to the doctor and it seems to just be what is going around. I just wish it would stop going around this house! I did quite a bit of laundry today and cleaning so maybe that little virus (and all of its cousins) has been washed away. I would think they could smell the scent of bleach and warn eachother not to come here but cleaning certainly doesn't protect you from everything. Also, after 20 years of marriage and 3 kids, you really accumilate a lot of stuff and I am not a person that really likes clutter. I wish I could just take each and every item out of the house, scrub down the entire house from top to bottom and clean each item before it came back in the house. If I had the energy, trust me, I would do that!

Katia is doing okay. She is pretty worn out though. Her eyes have really been giving her a hard time as well as her mouth. We are down to 12mg a day on steriods. When we went up this last time, we went up to 15mg so we are weaning slower than usual and will probably stop the wean around 10mg and try to get her weaned off another medicine instead of the steroids. She calls her pills "desert". She gets "desert" before breakfast and dinner! How many 7 year olds can say that?

My dad is doing okay. He went to his doctor today and they checked him out. His MRI from Monday hasn't been read yet but his appointment with the neurosurgeon isn't until next Tuesday (long wait). I understand the "opinion" of the films has changed again but I wasn't back in the doctor's office with him so I will just wait for the report. Whatever it is just needs to get taken care of because the pain is just building and building and I really hate to see him in so much pain. He is normally a very active, over active, person.

Please continue to pray for Pastor Harold Warner. I will update when I know more but the prayers are greatly appreciated.

Also, the car situation is still the same. My reliable car is not at all reliable right now. If I have to go over the bridge, I trade cars with Myron. Right now, I just don't feel safe in my car and there really isn't a lot I can do about changing cars or fixing that one. So please just keep this in your prayers. There are many other prayers more important than this one as I definitely know the difference between people and material things and I also trust God will take care of this situation. We aren't due to go back to clinic until next week now.

I am about to get around to some other sites.

Again, thank you for checking in, thank you for your prayers and messages and thank you so much for checking up on others:)

Love, Tracy








April 3, 2007 6:00 PM

WBC 2.83 (low)
HGB 12.9 (steady and good)
PLT 331
FK506 9.8 (I like this level)
IGG 688

We had clinic today and Katia's port worked perfectly well:)

After clinic we went over and had pictures done by a wonderful Foundation, Flashes Of Hope and met their executive director. You know how I love pictures and believe in taking lots of pictures! Well, they did hair and makeup and a photoshoot. It was very nice and a lot of fun!

Myron is home sick today, sounds like bronchitis. What is it with us and getting sick these days? Hopefully his medicine will help him get to feeling better soon. Katia is pretty well having to stay clear of Daddy (it is like a divided house with sickness) and especially so since she seems to just be getting over some bug and her WBC count is low. We are still waiting on the IGG level (antibodies count).

My dad? Well, his pain is worsening. He does have his Neurosurgeon appointment set up and we take the MRI films with us to that. That isn't until next Tuesday though which was kind of hard for him to understand the waiting but there really isn't much we can do about the wait. Right now Katia is reading to him:)

I have 4 silent prayer request for you. Also, prayers for my dear pastor I had mentioned earlier. His name is Harold Warner. Please keep him and his family in your prayers.

Sharayah's countdown to graduation is nearing so she is pretty excited about that!

Well, I should finish up dinner I guess.

Lots of love,

Tracy







April 2, 2007 6:00 PM
2nd Update today

I figured out (after a few emails) that you can't view the pics in my MySpace site unless you have a MySpace so here are 2 of the pics that were over there:)

Ricardo is a good friend of Sharayah's for the last 4 years or so and Laura is a good friend to Sharayah. They are planning to dorm together for college in the Fall.


Sharayah with Ricardo for Prom 2007



Sharayah with Friend Laura for Prom 2007



Love, Tracy








April 2, 2007 9:54 AM



Good morning:)

Long night....

I feel like everytime I come here, I am posting a new prayer request for someone in my family or circle. So, first let me start off with something from yesterday that was just a cute time:)

Katia spotted a ladybug on our front windows. She kept an eye on that thing for about an hour and was worried that something was going to eat it. Then a bird landed in the front yard so she pulled up a chair inside and kept tapping ont he glass to keep the bird away and protect the ladybug. Anyway, to make a VERY LONG story short, we ended up going outside and getting the ladybug onto our hands and making it fly away. I have no idea where it flew to but it seemed quite content on our front window for a long time:)

Okay, now onto the other news. Last night, Katia was quite pink, then red in her face. She didn't feel warm and had no temperature. Checked her Blood Pressure and Glucose Levels. Those were fine. I was pretty surprised how low the glucose was (122) as she had just had a brownie after dinner. Anyway, so I just had her stay with me and calm down so we watched some TV (Frasier to be exact). She seemed to feel fine but she just looked really puffy. She has gained a pound since clinic on Friday which makes me think she is retaining fluid?

Anyway, she came in my room twice within about 30 minutes to use the bathroom after she went to bed. Both times were lose stools which isn't like her. She came back in a 3rd time so I took her temperature again, Fine:)

Then about 20 minutes later she came in (this is around 1AM now) saying she needed a "pukey pill" (Zofran). I decided she should sleep with us. So, I got our puke bucket and some cloths along with her brown shirt, blankie, pillow and chickie and gave her the Zofran. About 20 minutes later she threw up. She ended up doing this about 3 times and then fell off to sleep. She started feeling warm to me but due to her throwing up I didn't want to take her temperature in her mouth so I took it under her arm (not really a true reading since I hadn't been doing it that way) and she was fine.

She still feels pukey this morning. So please pray for her that she doesn't get sick or fevers or anything. She has had a busy few weeks lately which may have exposed her to something and we really don't need her sick. Right now she is nibbling at her breakfast and watching TV.

She has school in an hour and is doing the standardized testing. Hopefully she can at least put her mind to that for an hour or so.

Thank you for your prayers:)

Love, Tracy










April 1, 2007 6:00 PM

Hello there:)

I just wanted to jump on here quickly and let you know things are moving along here, kind of I guess. My dad is getting anxious to feel better so hopefully this week will bring some answers and results.

Sharayah had her Senior Prom last night. I will have to get some pictures on here. She looked smashing!!! She had a lot of fun and now that is behind her. Graduation is coming up. Wow, I feel old!

Anyway, that is about all I think.

We have a big event coming up for The Katia Solomon Foundation so if you are local or close by, please stop by the Foundation Site and learn how you can attend or participate in some way. Just go to the Current Events section.

Have a good evening:)

Love, Tracy


**************

March 30, 2007 5:30 PM
2nd Update today...

Still no labs but I have some prayer requests to ask of you. One is for Marc who is listed above. Please see the request above for more information.

Also, a very very dear person to me has just found out he has bone cancer. He is my Pastor from when I was growing up. He has been a very dear person to me from a very young age and has followed Katia throughout her treatment. He does a lot of missionary work now in Honduras. He 77 years young. He is also dealing with a fungal infection at the same time and until that is cleared up, they cannot start chemo for his treatments. He has been a HUGE inspiration in my life, counseled me and taught me so much about how to deal with struggles. Little did I know how much his lessons would help me through life. He stressed the importance of always leaning on God in difficult times and thanking Him in good times. His wife and Mother-in-law all have been an important part of my lives. They raised together 2 sons who have faced many disabilities from a very young age. They are just an amazing family to me and I hate to see him going through this now. I do know he believes strongly in the power of prayer and appreciates any prayers said for him and his family.

I have another prayer request to mention also but I need more details before I post it so I will be back later, hopefully with lab results also.

My dad goes back in for another MRI on Monday afternoon with contrast and to a neurosurgeon later in the week (next week). Hopefully this can be resolved. Please pray for him as he is feeling worse and is just tiring out. He is however catching up on some movies I have him watching so I keep him kind of busy and well fed:)

Love, Tracy









March 30, 2007 1:15 PM

WENT TO CLINIC AND FORGOT TO GET THE LAB RESULTS-I WILL POST THEM WHEN I GET THEM TODAY


First, I must ask your prayers for Penelope. She has been fighting neuroblastoma since 2003 and is currently nearing the end of her journey. Please go by her site, read their updates and leave a quick message. We have followed Penelope for quite some time and she has fought a very tough battle.

Also, one of Katia's Ladybug Club members is having some surgery today so please keep Tonya in your prayers. This will be her first time under full sedation so she is pretty nervous.

Katia is doing well. She had her Pulmonary Function Test today to check her lungs. The test itself is hard for her to do due to her size and age but she tried very hard and shows improvement since November 2005 so that is good. I totally forgot to pick up her labs before we left so I will post those later.

My car is still not fixed and we are working on being able to put it in to fix it but we poked over to clinic about 50 MPH and still got there a bit early. The car has some mechanical issues which have totally worn out the back tires (they are only a year old) and cause the car to shake. I am not a car person but it is some "boots" and "tie rod joint" that need to be replaced and the big thing is labor I guess due to the difficulty and time of taking off the old parts and replacing the new parts. Anyway, it got us there and back. We have to go back on Tuesday or Wednesday as Katia's port was giving a hard time today (which it hasn't done since she had it implanted). So, they need to check it to make sure it will continue to work for her. This is where she gets accessed to get all of her labs done and IV transfusions so it has to work!

Thank you for your prayers. Please keep our friends in your prayers and have a good and safe weekend:)

Love, Tracy










March 29, 2007 11:05 AM



In Memory of Jerry Gomez


August 24, 1954 - April 1, 2006


This was sent to me via email from a very close family friend of the Gomez Family so I wanted to post this. April 1st will be one year since Jerry's Passing... He lives on through the work of the
Katia Solomon Foundation and the many lives he touched and continues to touch.

Dear Friends,

It's hard to believe that we are approaching the anniversary of the passing Jerry Gomez. Of course we all laugh that he picked April 1st.....but know that it was typical Jerry!

Carol and the triplets are doing fine and coping the best way they can, spending a lot of time with friends and family. The triplets turned 9 last month! Carol has shared moments of feeling Jerry's presence, from a musicbox playing spontaneously after being silent for months to spanish moss dropping around her (Jerry used it as a baseball mit when he was younger). We all miss him terribly but know that he is seated right above 3205 Bay Vista watching his family!

Please take a moment to remember Jerry and his family in your prayers on Sunday. You can also drop them a note or email.

Carol's Email

Home:
3205 W Bay Vista Ave
Tampa, FL 33611

Visit the website guestbook:
Jerry's Page

Thank you AGAIN for all of the support and help that you offered the family while Jerry suffered through his illness and the help offered to his family once he passed.

Hug your loved ones and cherish everyday!
:)Brandi (Close Gomez Family Friend)


How is Katia today?

Well Katia is doing well:) She had school this morning and is going through some standardized type of testing. She did pretty good but of course has a very small attention span. She has an appointment with Pulmonology in the morning to check her lungs and then clinic for her regular labs and such. Next week she has her kidney function test and maybe IVIG depending on her labs from tomorrow.

How is my dad?

Running a little out of patience. Okay, here is where we stand with that. He is feeling "okay" but is in quite a bit of pain moving and other than that he is very concerned. He just doesn't like not knowing for sure what is going on and just wants whatever it is OUT so he can begin to recover and worry less about the unknown.

The diagnosis has gone from a TUMOR ON THE SPINE to A CYST ON THE SPINE to a HEMANGIOMA IN THE SPINAL COLUMN? Three different opinions from three different radiologist. Right now, his doctor is calling for him to see a Neurosurgeon since my phone calls didn't get a lot done. They wanted their own MRIs which makes sense but that should have been done when he was at the hospital in the first place. Also, since he is on steroids, the films are going to appear different from when he is not on the steroids.

What we don't want is for the waiting to cause any permanent injury or for the waiting to end up causing any further problems.

When they said HEMANGIOMA today, of course Katia's history bounced back to me as that was her original diagnosis with the tumor in her eye. Two months later, we were facing leukemia.

So, I just want to see them come to a conclusion, remove the problem and let him recover. He is not one to lay around (he is hyper like me) and the waiting is causing a lot of worry and frusteration. I keep him busy with movie, talking and basically just bugging him:)

So, thank you for your prayers. Please keep Jerry's family in mind as they approach this year anniversary of his passing. Carol is doing a wonderful job with the triplets (Robert, Max and Julia) and they just celebrated their 9th birthday. Those are some great kids! I am sure Jerry would be very proud of them and their Mommy.

Information is below if you would like to send them a note, email or anything. Jerry and Katia were "New Blood Buddies" and they were so sweet together. He fought a very tough battle!

Love, Tracy










March 28, 2007 6:00 PM


Mommy and Me!

Thank you to Pepito's.

Love, Tracy



March 28, 2007 12:42PM



Hello:)

Katia had a fabulous time last night to say the least. The modeling show was a big success and a LOT of people turned out!!! A LOT!!

I know the gils (all the participants) had a lot of fun and they were a great group of girls. It was nice being able to spend time with them and see how happy they were and just having this chance to go have a night in the spotlight! There were some real big personalities back stage and I know I will never forget meeting the girls I was able to meet.

Katia had a lot of fun. She was happy to go get dressed up. When she saw the runway and all the chairs where people would be saying, she got pretty nervous. That surprised me but I knew she would get over being nervous. Backstage, she sat out part of the fun times but then finally got up and joined in the girls with "practicing their walks". It was really cute. I think there are some real potential models in that group of girls and definitely NO SHYNESS!

We stayed backstage until the time of the show and I was amazed when I walked out and saw how many people showed up for this event. That was very touching.

There is so much I would like to say but I don't have too much time (lucky for you:) so I am going to sum it up. I will work on getting the portrait of Katia and I on here too that was done by Pepito's Portraits. WOW, it turned out really great!!! I will treasure that picture:)

Katia DID get to keep her dress which made her very happy so she will be sporting that around over the spring and summer:)

She had a ton of fun!!

Go over to the photo album for more pictures. The escort walking her picked her up (she is heavy!) and she said she felt like Simba on the Lion King!

Lots of fun!!!!

Love, Tracy












March 27, 2007 9:24 AM

Good morning:)

Tonight is the modeling show at Saks of 5th Avenue and Katia is VERY MUCH looking forward to walking the runway!!!

This morning we have an MRI with my dad. It seems nothing really happens the way it should on the weekends when you go through the ER under doctor's orders. They should have really rerun the MRI and admitted him and things would have moved quicker and he would be doing a lot less moving around.

After we do this MRI today, his doctor will line up the Neurosurgeon to view the MRIs. Things should move quicker along now. I hope so. He just wants whatever is in there out, tested and him be on the road to recovery. Makes sense.

Katia has been doing good. She is turning pink quite a bit either with hot flashes or her GVHD on her face and arms mainly. But, she feels okay. She has a BIG appetite for things she wants but she won't just eat anything in sight like she was doing. Her big thing right now is KFC Kids' Laptops! They are good and they fill her up:)

She is eager to wear her dress tonight and little pink shoes to match:)

Lots of love, Tracy










March 26, 2007 9:23 AM

Please keep Angel Matty D's family in your prayers. He passed away peacefully last night surrounded by his family.

Love, Tracy











March 25, 2007 12:36 PM

HELLO:)

My dad came in late last night, we went through the ER today where they gave him a physical, did blood work and looked over his MRIs and XRays.

They say, it is a cyst. So that is better than a tumor. He is home here and we call a neurosurgeon tomorrow to line up where to go from here to get it out or drained or whatever they decide to do:)

So, prayers are working!!!

THANK YOU!!!

Love, Tracy







March 23, 2007 7:04 PM

One thing I have learned along this journey with Katia (well I have learned a lot) is to focus on the positive and not on the negative. Not that I don't down in a "slump" (I keep a blanket and pillow in "the slump" because I get there a lot!)

I cannot have a complete day without checking on others and praying for others and I really think God gives me added strength through others. I know HE does.

Do you remember me mentioning Gaylene "Gay" a few entries back. She is in need of prayers for healing. They did a lung biopsy and it shows an aggressvie small cell type of cancer. The word cancer itself is scary to anyone but also knowing that many are praying for you helps so much. One of her friends has kept up with Katia for quite some time and has offered a lot of encouragment along the way so now we want to do the same thing for her and her friend Gaylene.

I spoke to my dad earlier. He arrives in the evening tomorrow so it is going to be a long day. I spoke with his primary doctor today and have as much of a "gameplan" as I guess we can have for a weekend admit. I told my dad I am very confident he will be in good hands and that scores of people will be praying for him. He also has a little "Ladybug" Grandbaby that is quite an inspiration. He was scared of the MRI (as most people are) but then he thought of the number of times Katia has been through them and CT Scans. Usually she is asleep for MRIs but there have been a few she was awake for and although she hated them each time because they are so noisy, all she needed was some stickers to cheer her up afterwards.

Today has been a hard day for a few reasons BUT I know God will never give me more than I can handle. I may not see that always BEFORE I start something but when I look back, I think, "Wow, where did that strength come from?" The answer is so obvious!

When things get really bad either with Katia struggles, family struggles, financial struggles, I tend to shut down into a shell and try to gather my thoughts, pray and just get myself together.

Another prayer request I have is for a family memeber of ours. They just lost their grandson. He was 34. This was a very shocking and sudden thing for them and they could really use prayers right now. I think of the families of Kelly Muldoon, Mark Desmaris, Bailee, Christi Thomas, Little Jake, Amazing Jacob, Katja Sufka, Abby O., and just so many others. I cannot imagine the mending their hearts are trying to get through and what it must be like to wake up each day. I have been blessed by each of these families and MANY more sharing the journey they traveled with their own loved ones.

I am babbling I know, but I just have a lot going through my mind right now and my fingers sometimes type faster than my brain works so... I babble.

Thank you for our prayers. I will keep you updated as things progress.

I look at the Disney Picture at the top and know how blessed I am!!!!

Love, Tracy










March 23, 2007 12:30 PM

Please keep Kathy D. in your prayers right now as she really needs some extra encouragment right now.

I feel like a dud right now. It was just brought to my attention the items from the last auction weren't mailed. They are still sitting on my desk (well not anymore-they are packaged and ready for the post office). I feel so bad so if you have been waiting, they will be on their way by tomorrow, 1st class mail. I am usally much more organized than these last two months.

My car? Well that is another thing that I can put in a list, "Things that just go wrong..." It is just very bad timing and something I tremendously rely on as you could guess. Right now there are more things wrong with it than I thought and really not much I can about it. It is a 1993 Maxima with quite a bit over 100,000 miles on it but it has been a good car.

On to good news, Katia is a lot less "high-strung" today. She has been cooking with Tatiana in the kitchen. More play cooking than real cooking but it is keeping her mind occupied, somewhat off of food and a lot less stressed which is helpful to me!

My dad should be over on the island now with Myron's parents and will be on his way here first thing in the morning. He should get here in the late afternoon sometime. Again, just bad timing for my car to be acting up. I am going to be back and forth more now with him and also Katia.

Love, Tracy











March 22, 2007 8:26 PM

Hello:)

Thank you so much!! Just for everything:)

I talked to my dad today and he is on steroids so the swelling has gone down and the pain medicine is helping. I asked him how he was doing and he said, "Very much looking forward to getting back to Tampa!" I know he just wants to get taken care of.

He has seen a few doctors there and we have him lined up here for this coming week. He will be admitted here and is bringing his results from there. He has been seen by a general doctor there, neurologist and a few different radiologists to look over his films. That was all there. Here, he will be starting over.

I do appreciate the idea of cards for him. He knows Katia has touched MANY lives but I am not sure he knows HOW MANY and he is Grandpa Bug:

The address can be the PO BOX at the bottom of the page.

Katia knows Grandpa is coming in but going to the hospital and not to the house. She said, "He will like to be able to order from the Menu." Grandpa does like to eat BUT this is not All Children's Hospital so it isn't that fantastic menu she is thinking about centered around kids every waking hour:)

She is going to draw him some pictures to hang up.

A few have asked how am I doing? Well, I do feel God would never give me more than I can handle. Although as I look ahead, sometimes I don't see that but as moments arise in life, I feel added strength. As a Foundation, we are working on some upcoming events and new projects which we are going to continue doing. The "An Affair To Remember" Bachelor/Bachelorette Auction here in Tampa is going to be a lot of fun and I know it is opening doors for the Foundation to expand. We are looking very forward to seeing this event do well and hope many many people attend the event.

We have some upcoming meetings that are already planned so I will be coming and going a bit more but when I think about it, I know things will work out the way they need to.

Currently, my car is sitting in the shop... hopefully they get it working. It just stopped! Literally. It wouldn't start. It has like 130,000 miles on it but it has been a good car, been through 2 minor accidents and has been back and forth over the bridge many many many times to and from clinic! I told them to take good care of the car. Hopefully, it is nothing major as we can't deal with that right now so hopefully they call and say it is something minor. So, keep that in your prayers. I rely on my car a LOT as you can imagine.

Katia is having a good day for the most part but her eyes are bothering her a LOT the last few days. She says her right eye ("they eye") is being poked with needles? Right now she is listening to the TV but not watching it. She loves to watch "America's Next Top Model" and "Survivor" along with a host of other shows. We tape them and watch them when we can but tonight she is listening. Tonight we actually sat down and watched some of the recent "Oprah" shows while she is traveling across the US. Very funny!!! We have been in "The Middle of Nowhere" as we used to live in Oklahoma and traveled the areas. Tatiana was born in Oklahoma. We are big Oprah fans!

So, just a small update (with a bit of babbling since I am somewhat nervous but feeling better) on how things are going. I appreciate your prayers so much!

Love, Tracy:)










March 21, 2007 6:40 PM

So, the plan is to have my dad admitted to another hospital via the ER on Saturday, see the doctors, run whatever tests, share his MRI films and do whatever is needed. Then, go from there. Hopefully this is something benign and is able to be totally removed without messing up or having already messed up any nerves permenantly.

Thank you for your prayers. We really appreciate them and I will share your entries with him when he gets here. He has no Internet there so he is always amazed when he comes up and I show him Katia's page and mail and such. He is amazed how many people are able to follow her via the Internet and have really opened their hearts to her. I am of course always amazed and touched and I know when prayers are needed, I know where to turn to:)

So, again, thank you very much and I will keep you posted (of course you know I will).

Love, Tracy











March 21, 2007 11:20 AM

Thank you for your prayers. My dad is coming up this Saturday. He moved it up as there is a lot of concern for nerve damage and this needs to be taken out ASAP. We are trying to line him up with Moffit which is really hard to do since he isn't physically here yet. It is hard for his doctors to refer him from here if THEY haven't seen him. We are waiting for his reports to get faxed here. He is nervous and scared. Finally told me that today.

The plan is to admit him when he arrives and get things going. Hopefully, it will turn out to be a benign tumor, there will be no permanent nerve damage, he will just need to recover from surgery and he can be back to himself. That is our prayers.

Love, Tracy






March 20, 2007 8:30 PM

We started off at clinic today to check Katia's FK506 level which is 7.0 so that is going up which is good. We want it around 10.

I came here to update moments ago and my phone rang. My dad lives in Honduras and has been having back pain. He got into so much pain that he needed to go to the nearest main hospital which is a few hours away. They did x-rays and then wanted to follow up with an MRI today. He just called and said it is a tumor on his spine.

He will be returning here a week from Saturday to have surgery to remove it as soon as possible and send it off to be tested. It is obviously pressing on his nerves so they want him here and to have it out as quick as possible. The only reason he is waiting this long is on Saturdays, there are direct flights but other days the flights and waiting in between at layovers take ALL DAY. He can't sit that long feeling like this. Just please pray for no damage to happen while he works on getting up here.

He is 72 years old and has always been very healthy. I know this has him nervous because it kind of has him unable to really walk or anything.

Love, Tracy




*****************

March 18, 2007 7:20 PM

Katia had a very exciting trip to Disney thanks to Ronald McDonald Corporation!

She has been asking, dreaming, praying and just really really wanting to go and this last minute opportunity perfectly presented itself!!

DREAMS DO COME TRUE!!! What a true saying!

Katia got to meet a lot of the characters, have a private meeting with Cinderella and we all got to spend the day together, as a family:)

Words can't really describe the day other than, "Dreams do come true!"

Thank you so much Ronald McDonald and friends!!!

We didn't spend to long of a day over there as Katia really hasn't been feeling the best and isn't up to much walking (not like that!)

About 30 minutes after we arrived, her head really started hurting. Thank goodness we brought her wheelchair because it gave her a chance to rest in between doing other things. She slept on and off a lot and after a few hours being there, she was ready to come home but mad that she felt bad BUT she was very pleased to have pictures to look back on and she was extremely happy that her and her sisters had a wonderful meeting with Cinderella!!! It seems there are about 20-25 appointments a day to have a personal photo session and time to yourself with Cinderella and someone approached us soon after we entered the park to see if we wanted to meet with her! THREE GIRLS WANTING TO MEET CINDERELLA? OF COURSE!

I don't know who was more in awe of the meeting. Cinderella talked to girls and they were all just (without a better word) in AWE!! She sounded and looked just like someone out of the movies!

So, without much more to say, click over and enjoy the pictures on the picture page and click over to
My MySpace site to see 2 videos of Goofy taking Katia for a WALK (run!)

Lots of love,

Tracy







March 17, 2007 4:00 PM

WBC 5.18
HGB 13.0
Plt 448
IVIG given March 16th
FK506 3.2 (I think...)

I keep typing 2006 instead of 2007. I think it is too late to be making that mistake...

I have a few things to post as far as some prayer requests and an upcoming event for a family.

Laura has asperger syndroma which is a type of autism. She is 21 years old and in need of prayers right now as she is trying very hard to pursue her career in research psychology but is having ongoing issues caused by medication imbalance and just a lack of understanding sometimes on the part of her teachers.



****************

HOPE FOR HANNAH EVENT

"A Night of Hope for Hannah Benefit" is going to be taking place on March 31st. Dinner, dancing, Children's Activities and a Silent Auction!!!

If you can attend and meet this beautiful little girl and her family, please make it a point to do so or maybe there is another way you can participate and helpf the family even if you aren't able to attend.


As a family that has traveled this road and continues to travel this road, while you spend so much time counting your blessings everyday and appreciating the smallest things in life, the world and life doesn't stop while you face hard times. The 1st always rolls around each month, electric bills come in, water bills, etc. I know others face these same situations which makes life seem so hectic. Do you ever feel like one of those gerbils on a wheel? A squeaky wheel at that?


***************




Katia is doing pretty well. She is more herself today which is nice to see:)

We go back next week, Monday, Tuesday or Wednesday to check her FK506 level as it was really low so we upped the dose and we need to get it closer to 10.

Katia received her IVIG transfusion yesterday so we pray this one will stick for a while. The immunosuppressing drugs she is on pretty well eats up a lot of the antibodies.

I am going to cut this short but I swore, I would get over here and update.

Please continue to pray for Matty D as he is having ongoing pain issues and they are really trying to just make him comfortable. Pray for Angel Kelly's parents as they have services this weekend. I can't imagine their pain and sadly, there are plenty others out there who can and who will be facing this pain soon.

Someone emailed me this question.

"Do you get burned out of following so many kids or used to their loss?"

I think that is a very good question. No, I do not get burned out. Actually my day is not complete if I don't check on the different sites. I actually pray as I check and I also pray that God leads me to sites I may not have checked on for a while that someone may be in need of prayers. My relationship with God has definitely grown since 2002.

Do I get used to people losing their battle? No, not at all. I see each person as an individual. My memory is not as good as it used to be but for the most part, their names, diagnosis, history, sibblings, parents, etc. really are individual to me. I feel everyone is here for a reason. I am sad to know how many pass away that I keep up with but I am also sad to know how many also pass away that I don't know of. That number is too large and these diseases take way too many lives!! I am honored to have the chance to in someway be a part of or learn from their journey.

A lot of times, you can tell by udates and medically speaking that things may not turn out good but I promise you, until a person passes, I pray for a miracle. I also pray after a person passes that their life will continue to touch countless others and their names will never ever be forgotten or unmentioned.

So, with that said, thank you for asking the questions. Thank you for following Katia and others. Your outreah of love is totally appreciated and needed.

Lots of love, Tracy




*******

Marh 15, 2007 4:50 PM

Hello:)

I keep sitting down to update and something comes up...I am not usually easily interupted but I am just having one of those "crazy brain days".

We are off tomorrow to clinic for an IVIG transfusion. I didn't realize her level last Friday was 506 so I am imagining it is down near 400 or below by now. She needs the transfusion. I always feel like that gives her an extra shield of protection against what could possibly be around as far as viruses and such. Her last dose was February 23rd. She used to longer between needing the doses, maybe 6 weeks so hopefully her body will start making and keeping its own antibodies.

Everytime we get IVIG, I think of the thousands of donors it takes to make a single dose of this blood product and I must remind you to tell others about this need. When the blood supply is low, these blood products get low and people like Katia need these blood products to live.

Katia is very much looking forward to the Modeling Show! We watched Americas Next Top Model last night and she is practicing her wave:)

I have to ask your prayers for Katia as she has just been feeling puny. She is giving out easier and is just kind of slowing down. Sometimes I think maybe she has a virus and her body is trying to fight it off. I keep thinking her hemoglobin level may be low or her magnesium even but they have been okay recently? Not sure. She sleep good! She takes a nap or two a day and is falling asleep pretty quickly at night around 10PM and wakes up on her own around 8:30 every morning.

Right now, she is flopped out on a living room chair.

She got a beautiful pink blanket the other day in the mail with her name and ladybugs on it. It is very warm and cozy and right now she is piled up in it and snoring.

She also got one of her magazines subscriptions someone order for her birthday, "National Geographic for Kids". She was very happy to get a magazine. I get Readers Digest but this was for Katia, her very own! She has always been big on mail!! She loves the mailman and points out every UPS truck!

I need to get by some other sites and will update any prayer request that I can. Please keep these families in your prayers.

I have 3 silent prayer requests to ask of you plus an update on a prayer request I had posted for a lady Gaylene, "Gay". The original prayer request was around March 7th. An update is her doctor says the biopsy shows only inflammation in her lung, not a malignancy. But he's not satisfied to stop there so he's sending her to a cardiovascular surgeon on the 20th. What he thinks this guy will do is called a mediaspinoscopy. It's doing a small incision, inserting a scope behind the sternum and checking the lymph nodes there. That will probably happen on the 23rd. So please this in your prayers. Prayers are definitely working already though:)

Lots of love, Tracy









March 13, 2007 12:36 PM

Today we had a Photo Shoot for the Modeling Show. It was done by Pepito Masterpiece Portraits.He took some very sweet pictrues of Katia and I. One will be on display at the Modeling show on the 27th.

I was going to jump on here and update last night but really just couldn't think of what to say.

As we have traveled down the journey of cancer, we have met some people that words cannot describe. Cancer Paients, Moms and Dads, brothers and sisters, doctors, nurses, hospital staff in general, volunteers, organizations, and so many. It has given us a glimpse into the world and the people in the world that is not often seen. Genuine hearts of gold, courgaeous people facing overwhelming battles, graceful and honorable young children so far beyond their years, and just so many people who although they themselves do not have a family member or even a friend with one of these horrible diseases, they have felt the need to get involved in many different ways. From grand gestures to grand hearts to just being around year after year as a true friend and an angel in our lives.

When Kelly M. had started to decline, I knew her passing would come some time. I never give up the hopes of a miracle but sometimes what we think is the right outcome doesn't happen and I believe God has a reason. Throughout Kelly's journey with cancer, her parents and family have surrounded her with everlasting love. Their words in their updates couldn' come easy but yet somehow, although things were so bad, I never read a single update that I didn't feel blessed to be able to have a glimpse into not only Kelly's life but her family's life as well. It is hard to share your emotions, even the good ones. It is hard to sit down and spill your heart sometimes.

I know when Katia relapsed back in August 2003, things had been going so well. I felt that her website was an inspiration of hope to those just starting the journey. If you go back in the journal history, go down to June and July 2003 and just read up as the summer was progressing. There were down sides but mainly, we were happy and Katia was doing well and enjoying life!

Then August 24th, things started showing that there was a problem and I became concerned of relapse. I wanted her tested and I was very persistant because I believe in my intuition. August 26th, she had her bone marrow and spinal fluid tested and under the microscope things appeared great. Her blood counts were literally perfect!! Not just for a cancer kid but any kid. I came home and was relieved to update her site with GOOD NEWS!

Then the call came...Katia had relapsed. Heartbroken, I called Myron, talked to Katia and sat down to update the site. I felt bad taking peoples' hope away and giving such bad news to so many who had shown so much love to Katia. I felt scared and drained all of the sudden. I had no idea what would take place the next day as we headed back for treatment but I never guessed we would be gone 11 months and all of the things that would take place. BUT, I did know I would share each step of the way via Katia's website. The ups and downs, all of it.

So many of you have never met Katia and probably never will but yet you have given a genuine piece of your heart to her, us and her journey.

It hurts so bad when someone passes. There is no "getting used to it", "expecting it", "preparing for it". There just isn't.

Yesterday, I had to pause and take a step back. I took Katia to the park and just tried to enjoy her and let her live and be happy. I knew how much Kelly Muldoon believed in living and loving so I wanted to honor her in that way.

So, I think the best thing to do to honor those that have passed, kids and adults from a variety of illnesses is to LIVE, LOVE and LAUGH!! Never forget their names, never stop saying their names and never lose hope.

Lots of love, Tracy









March 12, 2007 11:39 AM

I am at a loss for words right now. Please pray Angel Kelly's family at this time. She passed away very early this morning.

Also, please pray for Matty D. as he is having significant issues and there is a great deal of concern as to what is going on right now.

I will be back later. I am truly just at a loss of words right now.

Love, Tracy






March 11, 2007 3:45 PM

What a fun day!!!!

After a very very long long night with me coughing and feeling absolutely bad enough to cancel or send Myron, I had a very good time and I am so glad Katia and I had the chance for the "Mommy and Me" Time!! We had a lot of fun.

Katia's favorite thing was the part of picking out dress, getting her nails done, getting her makeup done and a fabulous surprise package at the end that had all sorts of great gifts and I got a surprise bag too!!!

THANK YOU TO THE PEDIATRIC CANCER FOUNDATION, SAKS OF FIFTH AVENEUE, MERCEDES BENZ AND THE MANY MORE PEOPLE INVOLVED IN THIS DAY TO REMEMBER!!!

Our day started off with getting picked up in a brand new Mercedes and heading off to International Mall to Saks. The store was just awesome and only employees around. We were greeted at the door by a photographer and he took pictures of everyone and they video taped everyone throughout the day!

I prayed this morning as I was ready and waiting to go that God would not only give me a good day with Katia but that I wouldn't start coughing. These are all cancer kids and although I have been on antibiotics and am not contagious I don't like to cause worry because I know how that would feel. I think I coughed less than 10 times the 3 hours we were there!

I got to see people I have only known through their website and that had to be the highlight of my day! To meet them in person and their Moms (and one dad), it was just a blessing as each one has already touched my life and continue to do so.

Katia picked a very pretty summer kind of dress that twirls when she spins (that was a must) and each time she tried one on, she came out to mode, hear people's comments (she loves the attention) and get her picture an video taken.

Then we laid out the 6 dresses and she gave the pros and cons to each and decided on the one with the best "twirl effect". Plus it is soft and not itchy:)

So, now we wait for the modeling show on the 27th...

I just wanted to add some updated pics of Ms. Happy Katia!!! He picked the nail polish color herself (as you can probably imagine) because se wanted to look like a "Woman!" She wanted lipstick which she got and makeup but no mascara. That is not necessary. She has great eyelashes and I didn't want to risk anything with her eyes. She was happy happy and a bouncy bubbly joy!!!

Lots of love, Tracy


**************

March 10, 2007 6:26 PM

WBC 6.90
HGB 12.8
PLT 406


Hello:)

Sorry for no update yesterday. Things have been pretty busy with Katia to clinic, Sharayah preparing for prom, and my doctor appointments and such. BUT, I did have a chest x-ray done lately which I won't hear back about until Tuesday... I hate waiting. With Katia, things happen very fast. They take blood and results come back in the next hour to day. X-rays are read right away, CT Scans, etc.

I am feeling much better with my throat. I certainly do not feel contagious at all. My breath is still short especially at night and I am still using the inhaler. Seeing that I am NEVER one to get colds, the flu, pneumonia, bronchitis, etc., this all not normal for me. Sharayah had childhood asthma which only acts up if she is exposed to a lot of dust or something. Tatiana always had bad allergies but they are under control now since starting on allergy meds. Her, Myron, Katia and myself are on allergy meds which I am doing just to make sure I am not having allergies.

Okay, tomorrow!!! Katia is very looking forward (as am I) to the day of pampering at Saks. We get picked up from the house, have nails and makeup done and Katia gets to pick out her dress for the fashion show which takes place on March 27th. She is very eager!!! She has never shopped for anything since she hasn't been allowed in stores and before she was diagnosed, she was 2 so it didn't matter to her. She is going to be in awe really because of all the Easter stuff out and pretty dresses!

She is feeling better today. Yesterday wasn't too good for her as she had no energy but today she is back to herself it seems:)

So, that is all for now.

Katia has agreed that we should get some updated picures of her in her past dresses and shoes so we will do that this week sometime. It isn't like I have to twist her arm to dress up and take pictures!! Tuesday, she has a photo shoot for the Modeling show. They are going to have an easy job with Katia as she can definitely strike a pose and smile!

Love, Tracy











March 8, 2007 10:00 PM

Going to bed.. Katia just went to sleep, had to catch up on Survivor and American Idol.

I am not feeling too well so please keep that in your prayers. I am glad I am getting x-rays tomorrow but we have clinic first. Please pray Katia is doing well:) I think she is doing great (as far as her counts).

Love, Tracy











March 8, 2007 6:00 PM

Hello:)

First, I am feeling much better. Thank you for your emails and guestbook entries. My coughing is much better and my throat is not sore any more. I still have the shortness of breath especially at night. I just came from the doctor who hears something? Wants a chest x-ray. I went directly to get one done BUT I got there 5 minutes after closing so I will go tomorrow after I take Katia to clinic. He put me on Prednisone for a bit (like we need another steroid person around this house) and depending on what we find out from the x-ray, I may need to see a pulmanologist. We will see. I don't sound as bad though. Katia is happy I don't sound like I am going to puke and I can be around her again. I am not contagious at least:)

So, now that I have updated on me... let me tell you how Katia is. We have clinic tomorrow to check her out. She is doing a lot of school work right now. I am trying to catch her up on a few things and work with her in different ways to see how we can make things "stick" in that brain! She is having fun trying different things and of course is happy to spend time with ME:) Isn't that sweet! She is happy to do schoolwork with me.

We have a surprise for her which I will share probably over the weekend while we work out some details...

I know I ask for prayers for others very often but I also have a prayer request for our family. I won't go into specifics as God knows what the prayers are for. He ultimately knows the answers we could never even think of the questions for. I just ask that you keep this in your prayers.

Also, (I know I ask a lot of you) please keep Kelly M. and her family in your prayers, Matty D. in your prayers and countless others. I am waiting to hear back about a few of the prayer requests from the last few days. Also the Katia Solomon Foundation. We are doing quite a bit right now with some upcoming events which more info can be found on the Katia Solomon Foundation Website. We have big dreams for the foundation and of course it takes a lot of work to get there.

Katia is very very much looking forward to the modeling show and if you would like to attend the information is above the journal entries. Her and I have a "day of pampering" coming up this Sunday which with everything going on lately, this is just perfect timing!!!! We get our nails done and she gets to pick out her outfit at Saks. She is so eager for this!!!!! She loves pretty dresses. Since she hasn't grown in the last few years, she has some pretty dresses and her fabulous "clip clop" shoes that she loves so much and she wears them like a princess!!! I should take some updated pictures in them. That is one good thing about not growing, you build up a good wardrobe:) She has a few dresses she has had since she was 3 including her favorite ladybug sundress and hat:) When she relapsed, she decided she wanted to go back to the hospital in that dress so she got all dressed up, not realizing we would be gone for 11 months. That dress still fits her and is one of her favorites!! For the summer, she has decided she just wants to wear dresses. She is the only one of my daughters that feels that way and is totally opposite of me! (Right, Amy?)

Well, that is it for now. I will update after clinic tomorrow.

Love, Tracy


*****

March 7, 2007 6:00 PM

Click Here to find out what is coming up with the Katia Solomon Foundation. It is going to be a lot of fun!


Good evening:)

First, I have a prayer request to ask of you for a woman who was just diagnosed with thyroid, lymph and lung cancer. Gaylene "Gay" came to my attention from one of Katia's longtime Ladybug Club Members (I wonder how many in all there are now?). So, please keep this woman in your prayers as she goes through more testing to find out the severity and aggressiveness of this cancer as well as a treatment plan. Thank you:)

Katia and I made baleadas today!!! It is one of those things she missed while I was sick so we made a batch of them. We also spent quite a bit of time these last few days catching up on school work. She received a very nice set of learning books in Math, Reading and Writing from a very lovely lady that follows her site. Those books have really proven to be the source Katia has needed to get that little brain working and retaining information. So, along with her regular school work from Ms. Michelle, we work on these books. There are quite a few reading books in the series and they each build on the one before. Each group has 4 books and we have finished 3 books from the first group. She tries very hard and she works very hard. We are also working on spelling words right now. She always gets the first and last letters but leaves out the vowels so we are working on that also.

Another thing we are working on is writing her numbers and counting and she is doing very well on both! Her handwriting (numbers) has gotten much better!! Her little fingers are pretty sore right now with GVHD but she still does a very good job. She loves books!!!

I have a silent prayer request to mention here also before I leave and to also ask you to please keep Kelly M and her family in your prayers through these times. I have learned so much from her family and Kelly's journey and she has touched countless lives!!

Lots of love,

Tracy










March 6, 2007 9:00 AM


I have tried to update some of the prayer requests above as best I can. Please keep each of them in your prayers. Mark's family is having a very difficult time since his passing so please pray for them as well.

I have 2 prayer requests to add and there are no page links. These are family to some of my aunts on my Mom's side. Linda, was found to have a large mass invading her stomach, intestines and pancreas. She had surgery which was able to remove the slower growing cance but not the faster growing cancer. Please pray for her.

Grace had surgery to remove what was thought to be a benign breast lump. The doctor was wrong as it turned out to be malignant and she is starting treatment. Please pray this delay in treatment will not hurt her prognosis.

This is very close to me as there is a lot of cancers on my Mom's side of the family. It is like walking on egg shells sometimes. I am very much on time with my annual appointments with my OBGYN and mammograms yearly. I have had a few scares that have turned out to be benign and I am very grateful for that as well as for having a good OBGYN that is on top of things and does not hesitate to take the next step to make sure I stay healthy.

Also, please continue to keep Sheila's (one of Katia's ladybug club members) brother Stan in your prayers. More information can be found in the March 2nd update.

I had a rough night and started off with a not so good morning but right now I am feeling better. Thankyou for your continuing prayers.

Love, Tracy








March 5, 2007 3:00 PM

Here I am:)

I cannot begin to express how thankful I am for your prayers. I have to tell you these have been some rough days and rougher nights for me. Last night was the worse I think yet BUT today, I somehow am feeling quite a bit better? I think that is just due to prayers:)

I really hope I continue to feel better. The day I went to the doctor I felt so well through the day, I nearly cancelled thinking they would just look at me like, "She is sick?" Then, I got there and fell apart... so I pray this is the real deal of beginning to mend. For someone that never gets sick with colds, flus, coughs or barely sneezes, this has just been weird and scary for me as well as for Myron and the girls. Mommy never gets sick!!

So, please pray this last and I have a much better night than last night.

Katia did have school today. I am still staying away from her (doctor's orders) although I feel a bit better, more than a bit:) I still may be contagious if it is anything viral causing all of this. I used up the inhaler which I do still need so I need to pick up the refill.

Again, thank you for your prayers!!!

Katia is doing well. Her skin is still looking good so we went down 1mg on the steroids. She should also start getting off of the preventative medicines she has been on to hopefully avoid getting sick. She just wants Mommy back:)

Lots of love, Tracy











March 2, 2007 8:40 PM

I have a couple of prayer requests to post real quick that really need your prayers. One is for a friend of mine's little girl. I grew up with this friend and her little girl has Cellulitis and Osteomyelitis, a bone infection in her leg. They are in good hands at ACH here though and are hopeful for a full recovery. The little girl's name is Anslee. The other prayer request I have mentioned before is for the brother of someone who has followed Katia's site for a very long time. Stan was diagnosed with Colon Cancer this past fall and now it is found to have spread to his liver and lungs. The doctors aren't giving much hope for treatment option/cures so I ask you to pray for a miracle for Stan.

I know I had another prayer request but I just can't think of it off the top of my head. I did get an inhaler so I don't feel so panicky about not being able to breathe. Hopefully whatever is causing all of this will start to clear up and I will be back to my normal self soon. The latest thought is strep throat and pneumonia. Myron thinks it is whooping cough (pertussis) which was also brought up and makes a lot of since. Immunity from the pertussis vaccine decreases over time but does not necessarily disappear so adults may have a lighter case than a child without the immunization.

I feel bad feeling bad around Katia because of all she has been through and continues to go through but these last few days I have just been down and out. I have moments that I feel nearly normal but then it all comes back and sometimes worse than before so she told me it was okay to be sick for a bit. She even made me a card of us in a big heart. It was really cute:)

Lots of love,

Tracy








March 2, 2007 3:00 PM

Hello:)

I type the little smiley but I still feel bad, worse actually. I have been trying to lay low all day but that is hard for me to do. Myron seems to be sick now also but his seems more like a cold or flu.

Katia is pretty upset and she keeps coming and blowing me kisses but she has been pretty pouty and bored. I am glad the weekend is here so the girls can spend some time with her.

I guess if I get worse, I will go to the ER but for now I am just praying that I stop coughing. I feel like I am going to either bust a rib, choke, puke or stop breathing. However, I may be a baby with this because like I have said I RARELY get sick with any of this kind of stuff.

Thank you for your emails. I read them but I don't get a chance to answer them too much but I do read them.

I haven't been around any sites today as I have stayed away from the computer for the most part but I am going to try to go around some now. I may not be on here for the weekend though depending how I feel. Please email me if you have an update on a prayer request:)

Thank you,

Love, Tracy









March 1, 2007 10:20 PM

The last update was short and quick because I was updating from my phone. I am trying to stay in my room while Katia and the kids are up and about so I don't get them sick. I am a little concerned though. There was no swab test done to check for strep and I haven't been running a fever which usually goes along with strep. Maybe I am just over analyzing this but today was scary for me and I don't want that to happen in the middle of the night or anytime. At least today I was at the doctors office and they put me on a breathing treatment which seemed to open my airways up pretty quickly. I feel lousy tonight and it gets worse when I lay down so I am up and about. I think if I could get some decent sleep that would help but I can't sleep propped up or anything. I literally feel like my throat closes and that makes me wake up coughing and coughing and then it just gets worse before it gets better. I started the Zithromax tonight. I am on Robitusum DM and cough drops. I can't count how much water I drink. So, please keep this in your prayers. Thank you:)

I know there are far more needed prayers out there like I ask you pray for Kelly M. and her family. She is in the Prayer Request above. Please stop by their site and read their updates. Usually her dad updates the page and it is filled with so much love and sadness but mostly love for Kelly. Her journey here is coming to an end and it is just heartbreaking.

I haven't had a chance to really get on the computer but I try to do some from my phone. My laptop has basically called it quits on the internet, the processor is just worn out and too slow. Since Katia uses this computer I try not to be around it but I sterilize it when I am done if I do get on here. Who knows what is going around inside me but I don't want one little "icky" thing to get on Ms. Katia and get her sick!!


Love, Tracy








March 1, 2007 6PM

Now it seems I have Strep Throat? I got pretty sick today at the doctors. My throat just felt like it closed and I couln't breathe. I have been coughing non stop for 3 days. He put me on Zithromax and Katia has to double her dose of penicillin for 3 days. hopefully this will pass by and nobody will be sick.
thankyou so much for your prayers and messages.
Love, Tracy

Katia and the Brown Shirt say HI.


*************

February 28, 2007 11:00 AM

Hello from sunny Florida:)

I have a favor to ask of you. One of our previous prayer requests kids is in the hospital right now and she needs some happy mail and some pretty pictures for her room. Katia just put two pictures in the mailbox for her and decorated the envelope and everything. She had a lot of fun. Niki H. is at All Children's Hospital
801 6th St. South
St. Petersburg, FL 33701
ATTN: Niki Hawkins Rm 262B
Maybe we can send her a LOT of ladybug love!!!!

Thanks:)

Katia is doing just fine right now. She is tired of me telling her to drink water but with the high dose of Acyclovir she is on right now, she needs to wash it through I have to nag and nag and nag:) Don't worry, I have had a lot of practice!

I am feeling somewhat better today. I still have this horrible sounding cough and a spooky sounding voice at times but I sound worse than I am I think. I feel pretty wiped out. I am not normally one to catch colds or the flu really so I haven't had a lot of practice in this field (which I am grateful for). I don't know what I have but we will just call it the "ickies" and I am ready to be done with it!

I stay away from Katia so I don't get her sick which has never really been an issue with us before. I am always the one she can snuggle up to that doesn't have a cold or cough. So, she isn't too happy right now and supposedly the brown shirt wants to cuddle with me too and is unhappy.

Katia is very much looking forward to the Modeling Show coming up with the Pediatric Cancer Foundation. Her and I will get a day of pampering in a week or so and go get a picture taken together which they will have set up with other pictures on the night of the modeling show. Then, she gets to pick out a dress to wear and strut her stuff. She likes that part!! She is practicing her walk right now... a little too much "America's Next Top Model" episodes in this house.

You know how Katia doesn't like to be laughed at? Well she still doesn't but I told her if people laugh it is because she is making them happy not that they think she is doing something dumb. I think she is okay with that. She just does these little things that make you laugh and I really wish she could get over the fact of that bothering her because it shouldn't. I really can't remember a time someone has laughed AT Katia.

It is hard to remember sometimes that she is a SEVEN year old in that little body and things really do go through her head like concern over a little pimple on her face right now. She does have 2 older sisters so that adds to the "drama queen" effect. But in so many other ways she is like a 3 or 4 year old that you just want to scoop up and hug and play with:)

In her mind I think she is sometimes 3 or 4, other times she is definitely acting her age (7) and then there are times she is like a 30 year old and can downright argue her point. I always wonder what she would be like as a person sitting next to me on a plane that I didn't know. What would she talk like? Act like? Very interesting to say the least:)

I haven't really been on the computer much but emails come to my phone and I do try to get right back to them. Everytime I use the computer I disinfect it cause Katia uses it too. So, I am trying to keep clear of it.

However if you know of a prayer request or an update on a posted prayer request please let me know via email. I really do appreciate it.

Lots of love, Tracy







February 27, 2007 2:47 PM

WONDERFUL NEWS:)

SHARAYAH AND I BOTH SHOW ANTIBODIES AGAINST CHICKEN POX!!! YEAH, NO SPOTS!!

So, I am changing antibiotics for my throat and should be back to myself here soon. I have still been cleaning today so I have not totally been out of the loop, now I just won't feel like I am spreading disease around as I walk:)

Oh, I so did not want to go through Chicken Pox. I was worried about a lot of things like Myron having to take time off to take care of Katia, Katia getting even more exposed and just a LOT of things. I am not used to not being in the middle of taking care of things.... (Hint: I am kind of a control freak!)

Anyway, so thank you for your prayers:) Hopefully by tomorrow or so I will stop hacking and coughing. I keep reminding myself of that movie, "The Bird Flu Epidemeic".

Katia is happy. She didn't want to have to wait much longer for a big hug so I gave her a "small" one and told her I should be back to normal soon:)

I have to share this...

Katia had Tatiana help her make me a card two days ago. It says,
"Do you know how much I miss you?"

"Do you remember the balleada times?" (Picture inserted of us making balleadas)

"Do you remember the times we play mancalla?"

(Picture inserted of us playing Mancalla)

"Do you remember when you lay down and I kiss you?"

"I love you and get better soon so we can do the fun stuff again."

"Katia"

(She drew a "Mommy Heart" and a "Katia Heart")

On the back she made the little Hallmark symbol and the two hearts holding hands:)

Isn't she sweet!!!

Love, Tracy








February 26, 2007 6:00 PM
WBC 6.20
HGB 12.1
PLT 394 (much more normal)

We went to clinic today primarily to run tests to see if Sharayah and I show the antibody for Chicken Pox. No results yet but we have started medicine, Acyclovir, 4 times a day for 21 days. Katia too.

Katia's counts look good. Her T-Cells are still low at 175 (normal is 600-1500 approximately) but her other counts look pretty normal.

Katia is feeling okay. I feel pretty lousy, mainly flu like. Sharayah feels splendid. Tatiana most always has a cold but she is sick right now with a headache and cold.

Myron is healthy:)

As you can imagine, we are bathed in GermX around here and I am wearing a really great face mask. No chances on getting Katia sick.

Katia went out on her bike a bit with Myron but just a bit. Sorry about not taking pictures lately. I can't believe I haven't picked up a camera over the last few days...

I will update tomorrow with any other results. Thank you for your prayers:)

Love, Tracy











February 25, 2007 5:00 PM

Hello:)

I don't know if I shared this but yesterday was Estephany's one year post transplant anniversary!! She is home and healthy:)

The plan for Katia this week was to go to clinic on Friday and have her GVHD checked along with her FK506 levels. Now, with the recent episodes, she is going tomorrow as well as Sharayah and me. The idea is to see whether our blood shows any antibodies to Chicken Pox. If not, start treatment. Katia will be put on treatment with Acyclovir anyway, about 3 times the dose she normally gets if I understand correctly. I will know more tomorrow.

Hopefully this goes by and nothing happens and nobody shows any symptoms BUT the fact is, we have to protect Katia which means to protect me and Sharayah. Sharayah has a STRONG immune system but I don't. It has always been low. I don't catch the common cold which has been great. I don't catch the flu ever which has been great!!! I do however feel pretty bad right now, mainly my throat for the most part.

So, better safe in this circumstance. Katia needs to be protected at all cost. She is upset because she can't cuddle with me and kiss me right now but until I know I won't get her sick, I will just have to take those precautions. Tatiana is however VERY much able to play with her so that is good! Myron has had Chicken Pox also so that is also very good:)

So pray for good check ups tomorrow and that hopefully somehow Sharayah and I show antibodies against Chicken Pox:)

I haven't been around to websites this afternoon but I was earlier today. Please keep Anthony in your prayers. He is doing well following transplant and we need to pray that it stays that way. Kelly M., that is just so close to me right now. Her family, Kelly, they are just amazing people and they are going through a very heart breaking situation right now. I always pray for MIRACLES!!!

Please also pray for Penelope as she just had another Stem Cell Boost the other day so pray these really go in and do their job. This is her 4th if I am correct.

I will update tomorrow when I know more.

Love, Tracy









February 24, 2007 6:10 PM
WBC 7.38
HGB 12.4
PLT 521
IVIG Given yesterday...

Hello:)

Today has been a long day and hopefully it will end well as well as the next few weeks.

It came to our attention that Katia was exposed to Shingles on Wednesday. Long story short, she has never had the chicken pox. She did have the Chicken Pox vaccine but all of her immunizations were wiped out with transplant and she has had none since. Although that wouldn't stop her from getting sick. The good thing is she got the IVIG yesterday which was 2 days after being exposed so that may help her system fight this off. I however run the same risk of getting sick which would make me unable to be Katia's "caretaker" for a while so please pray that nobody around here gets this. Sharayah and I both had a VERY LIGHT case of Chicken Pox back when she was 1 or younger. Just to keep the Shingles/Chicken Pox away:)

As you can imagine, I have just been doing extra cleaning today. It is what I do to busy myself if something is on my mind.

I have a prayer request for you. I will need to find out some more information but for now, can you please just keep Cameron R. in your prayers.

Also for my friend Karen who had surgery yesterday. She is quite sore today and healing so keep her in your prayers as well please.

Katia is napping right now so I am trying to catch up on a couple things. Believe it or not I haven't even been around to any other sites today yet...

Lots of love, Tracy



*****************

February 23, 2007 8:15 AM

We off to clinic for the day to get IVIG but I wanted to post a prayer request here real quick before I leave.
Kathy D. was just diagnosed with MS. Her site is new so if you know anyone with an MS diagnosis maybe you can pass this info along. Her sister started the site for her. She has 3 children and a husband by her side and it sounds like she has quite a family behind her also.

Meghan N. was just diagnosed with a brain tumor and is starting treatment at CHOP (Children's Hospital of Philadelphia). Meghan is 5 months old. Please keep her and her family in your prayers.


Katia is sleeping right now, probably having some good dreams but I have to go wake her up (she likes when I wake her up before she wakes up on her own) and get today going. She looks so cute and comfy. Speaking of which, I will try to get some new photos up over the weekend. Maybe get her out on her bike again! She has been on it once so far.

Have a good day:)

Please pray for my good friend Karen today also. She is undergoing breast surgery today to remove some questionable areas. Please pray the surgery goes well and there is nothing found within the tissues removed.

Love, Tracy








February 21, 2007 2:50 PM
2nd Update today...

I have another prayer request for you. This is for a little local child. She is 12 and on December 29th woke up with a lump in her neck. Everyone just thought it was her lypmh node and thought she was fighting something off. Well 2 days later she awoke in pain so her doctor sent her for a CT scan and the tumor is on of the biggest ones her doctor has ever seen. It went from her lymph node all the way to her hip on her left side. She had 3 weeks of chemo and is now back in the hospital with a high fever. Please keep this little girl in your prayers.

How is Katia today? Well Katia is FULL OF ENERGY. A lot!!! She just beat me at a game of Mancala. She is getting really good at this game. Sharayah, Tatiana and I play it alot and it seems Katia has really been paying attention! There is online version of Mancala if you want to see what it is.

We have clinic for the day tomorrow for Katia to receive her IVIG transfusion. Katia is eager to go actually. She is taking something for one of the doctors that she keeps forgetting so now it is sitting by the door.

We had school this morning with Ms. Michelle. Katia did VERY GOOD on her counting, got all the way into the 80's! She has caught on to the counting pattern. She is still have some difficulty writing things backwards or putting sentences together but her brain is functioning better than it was so she looks forward to classes.

I have been working on changing some of the Drop Down Menus around and making a better list of information. You can find the New List of Information here. Let me know other links and I will check them out.

Well, I think that is about all. Please continue to pray for everyone in need of prayers and even those we don't know about. Please continue your prayers for Katia and her GVHD, eyes and bone issues. Thank you so much for stopping by.

Lots of love, Tracy








February 21, 2007 9:30 AM

Good morning:)

I will be back a bit later but I have a prayer request. There is no link to visit but the little boys name is Christian. He has a blood disorder (I am not sure of the details) but just had a bone marrow transplant via his brother Alex who was a perfect match. Please pray for his recovery.

Love, Tracy






February 20, 2007 5:25 PM

Hello, am I getting later at these updates?

It has been a pretty stressful day so I am going to keep this pretty short.

I did however get to work on something I have been trying to get done for a while. I know a lot of people have trouble with the Drop Down Menus on this site and the www.ladybugkatia.com site SO, I have been putting everything over to another format. The links are above and the Drop Down Menus are still available. The new sites with links make it much quicker and easier for those on dial up, using AOL or linking in from a mobile device. So, I hope this helps. I believe in sharing information:)

If you get to a site that doesn't work, please let me know so I can update it. I have tried to click on and check the sites as much as I could.

How is Katia today? Well, grumpy first, sore second and a doll always!!! She can tell when I am stressed so she keeps coming up to me and patting my arm:) She is mad that she has to take more steroids but she is happy that her face isn't red. It looks really good today actually as well as her mouth. I am grateful she still responds to the steroids. That isn't always the case.

Also, I want to point you over to see about the DVD SLIDESHOWS information. It is something I very much enjoy doing and they turn out really nice. If you would like more information after you read what is over there, please feel free to email me. You know me, I love pictures!

So, that is all for now.

I don't know about you, but we are definitely American Idol people!!! We also are SURVIVOR people (in more ways than one!) so the girls very much look forward to Tuesday, Wednesday and Thursday nights.

I am not sure who we will be routing for this year but there are some really good American Idol Hopefuls and also a lot of good people on Survivor!

Lots of love, Tracy









February 19, 2006 7:30 PM
WBC 7.25 (kind high for Katia?)
HGB 12.5
PLT 609 (high)
FK506 3.7 (LOW)
IGG 536 (she gets IVIG on this Friday)

First two silent prayer requests to ask of you. Thank you:)

Secondly, if you live in the local area, here is a fundraising effort that is going on to raise awareness and finances for a family greatly in need. I know they have put a lot of time into this fundraiser. Hannah's Site will have all the information but you can stop by and read her story and see her new webpage. Our family knows very well the financial struggle brought on when your life is turned upside down and it goes on for years and years sometimes. Treatments can continue for MANY years BUT we are grateful becuase we also know there is a much worse side so we are grateful to have our kids and have the hope of tomorrow.

Katia is doing well. Her skin looks much clearer!!! I am glad the steroids can still get in and clear up the GVHD. We are lucky for that. Our idea is just not to fully wean for a long long time. We are going to try to wean one of her other drugs and see how her body responds to that first. GVHD can quickly get out of hand and literally become fatal so Katia's body has let us know, it needs the steroids right now.

Her FK506 level was also very low at 3.7 so we are going up on that as well. It also helps Katia greatly with the GVHD. The level for her should be between 10 and 15. This drug is however very hard on her kidneys but we know this and just make sure she drinks a lot of fluids.

I think that is about it. The auction ended. It didn't do too well but maybe wasn't good timing for a lot of people. Thank you for popping over there and checking it out though. Also, I have an update on a silent prayer request. I had asked for this sometime back. I know I don't go into specifics but your prayers have totally turned things around for this person and their family and a lot is due to the fact of knowing so many people were praying so thank you:)

Lots of love, Tracy







***************

February 16, 2007 8:57 PM

Angel Mark D. has passed away. The service information will be on his site later. Please pray for his family and friends at this time.

Love, Tracy






February 16, 2007 12:05 PM

Good morning/noon.

Last night was a long night as Katia is hungry non-stop now. She came in on an hourly basis wanting something to eat. Just to think, last week her appetite was bad...

Anyway, her cold is gone it seems!!!! YEAH! I am so happy about that. I don't think she realizes it but she isn't dragging a box of tissues around with her.

Her face, mouth and skin seems to be showing improvement now as the steroids get into her system more. As happy as we are to see this improvement, I know the steroids are not the answer.

She is also complaining a lot about her back. Motrin seems to help ease the pain but the concern is her severe osteoporosis and the concern of fractures. Steroids are just not helping that matter, they are hurting it. She does take Fosamax weekly to help slow down bone loss. We don't scan her (DEXA SCAN) until July and our hope was she would have been off steroids for a bit and have time for improvement with the Fosamax. We aren't giving up hope. It is a blessing that Katia is so small as it is less weight on her bones. She personally doesn't want to grow because she says "growing hurts" and that she will have to do "chores". As you can see, she is a typical 7 year old in that manner.

I have a question for you. There is a family in great need of help. They do not fall into our Foundation's criteria since we are "Blood Cancers" but their need is for a rental car. They will be going to Boston for treatment on the 19th of this month. The facility they can stay at free of charge, like RMH there is one hour away from the treatment facility. If they stay closer, then the lodging would be about $75 per day. So they are really in a bind. If you know of anyway to help this family either with Rental Car connections or something, please email me and I will put you in touch with one of the hospital coordinators. Today being the 16th, there isn't much time. If you would like to make an online donation to help them, please let me know and I will let you know how you can do that also. They will need to be in Boston for 6 weeks.

I just updated the Prayer Requests above. I have fallen behind in that just do to some family issues and with Katia not feeling well but I sat down today and just said, "I have to do this!" so that way I am sure to get it done.

Also, thank you so much for those of you going by the Auction. Without going into great detail, you are very much helping.

Love, Tracy









February 15, 2007 10:30 AM

Hello and good morning:)

Katia's day hasn't started off too well today either. I like to get on here and say, "Things are better." Not yet though. Her face looks a bit better though and her mouth seems quite a bit better. Her hips and knees (the skin) is thickened and very sore. She basically itches all over and can't really get too comfortable. Her mouth gets sores throughout as well as on her tongue. Her eyes stay dry and irritated with or without eye drops and cold clothes, etc. When she falls asleep, she does sleep comfortable it seems. She is pretty still when she sleeps which is good as I am sure moving around would probably wake her up.

Chronic GVHD is something that can go on for years and change in the severity or what part of the body it effects. It can effect externally/internally. The reason Katia's seem to come and go is due to immune supressing drugs she is on. FK506-Prograf (we call it "Wonder Woman"), Steroids, Cellcept and Septra hold back her immune system. As we try to wean certain drugs, her immune system becomes more active and that is why the GVHD suddenly seems to flare up. The hope is that her immune system can learn to not fight against the new marrow. Until then, we have to keep her immune system suppressed which makes her more easy to catch sickness and doesn't allow her to redo her immunizations from childhood.

On a better note, Katia is a pretty happy-go-lucky little girl so a lot of things she manages to deal with on a daily basis. That is a huge blessing. She is used to this so she doesn't feel sorry for herself or anything. Today she is very crabby because her backbone is hurting her a lot and she has a headache. But, she is sitting in the living room on the sofa cutting out little hearts to make Myron and the girls (she already gave me mine) "Happy Friendship Day" cards and watching cartoons.

Due to her not wanting to really get up and move around much, she has had a few bathroom accidents the last couple of days. I think she just tries to hold it and then it gets to be too much.

So as much as I try to stay very positive and acknowledge the fact things could be much much worse, Katia is my baby and I hate to see her feel bad. It breaks my heart. To her, I just stay upbeat and go on with day to day activities. Chronic GVHD can cause depression and Katia doesn't seem to have any depression at all. STEROIDS (those little monster drugs) do make her mad and she says she can't help it. She does have outburst or gets upset and throws something down but right away, she realizes it wasn't nice to do. It is like there are two people at times, Katia and the "Steroid Katia".

Right now, she is on 1/2 the maximum dose for her each day. Monday, she has another appointment to judge whether or not it is working. I think by then, she should be showing some improvement. If not, then we will go back up to the maximum dose. We have discussed over and over how Katia really can't remain on steroids. It is really bad for her health, especially her bones. BUT, there isn't a lot more choices for her right now and if she reacts quickly to them, then we can start weaning down and maybe just stop at a low dose and stay there.

So, hopefully that explains things better.

Someone asked, "Could this go internally?" Yes, it can if we allow the flare up to continue especially. That is why we have to react quickly and aggressively to flareups.

I have gotten a lot of emails and your concern is greatly appreciated. You are not bothering me... ever. I answer them as I can or I just answer them in an update so if you don't hear back from me via email, please don't think you bothered me.

Always feel free to Contact Me Via Email

On a side note...


ACTIVE AUCTION UNTIL FEBRUARY 19TH


As most of you know, we are a one income family and God has blessed us with being able to function and keep me home fulltime with Katia. Without going into much detail, we are needing to do something to bring in another income opportunity without adding to our already hectic and always changing schedule of care. SO, I thought about this auction and I will see how it goes. These items are Costume Jewelry. The items are much better than the pictures show!! Trust me, I wish I could take better close up pictures. All bidding is greatly appreciated! You are helping in more ways than you can imagine. Thank you:)


Lots of love,

Tracy





******************

February 14, 2007 10:00 AM

HAPPY VALENTINES DAY!!!

Here is what Katia brought me this morning:)



Mommy and Katia Cooking




Katia's Valentine Card to Mommy 2007



Isn't that sweet. She had the little card all folded up with a red ribbon and a sticker to hold it together.

It says, "Happy Valentine Day Mom, By Katia" with a lot of hearts and smiley. On the backside (which I didn't show) is us cooking. But, I included another picture of that:)

That is one of her favorite things to do is help me in the kitchen.

So today is one of those baleada days. I promised her we would cook some:) She loves to eat the left over beans and cheese mainly but the girls love coming home and finding a whole pan of baleadas! For those of you that don't know what that is, it is tortilla with beans and cheese inside and heated up in a pan. Very simple but she LOVES them!!! And she loves putting on her red apron and helping me. She spreads everything on the tortillas and I am the one in charge of the fry pan:)

Katia woke up feeling quite loushy actually but she says she wants to cook with me. Right now she is resting on the sofa and will tell me when she is ready. She is just so wiped out lately, sleeping a LOT and feeling bad. I am really hoping by THIS Friday she will be feeling better and have a good weekend with the girls at home.

Next month, she is supposed to participate in the Pediatric Cancer Foundation, "Fashion Funds the Cure Event". It is a modeling show at Saks of Fifth Avenue to raise money for PFC. She is really looking forward to it but is upset because her face is so red right now and she doesn't like that. She is a 7 year old girl with two teenage sisters...

So, please just pray that this GVHD gets back under control soon and certainly doesn't worsen. Also, please pray that Ms. Katia will get some "spunk back in her step" and be feeling better all the way around. Her cold is still there but seems a bit better. NO FEVERS THOUGH!

I don't think I shared this the other day but Katia got her first BIG BIKE!!! She got it Saturday and we took her outside for about 10 minutes. I am uploading that video and the video today of her making baleadas to My MySpace Site so it should be there by around 12:30 at least.

Lots of love, Tracy

PS I just listed a new Ebay Auction. Happy Bidding!










February 13, 2007 3:40 PM

Hello:)

No fevers and Katia is feeling a bit better, no real appetite due to her mouth hurting but she has eaten some and is drinking well. She wasn't too happy to have the added number of pills this morning but then she shrugged and said, "Oh well..." and took them.

I REALLY hope this steroid increase can be temporary although most importantly is that her GVHD gets under control. It is so great to be going down down down, not up. But, is it makes her feel better, then we will work with it and see what we can figure out:)

Today has mainly been spent doing little to nothing (for Katia at least). She was playing on the Living Room floor for a while but keeps ending up back on the sofa which has her pilow, blankie, brown shirt and chicky:)

I can always tell when she is feeling bad because she doesn't follow me around. Normally she is my shadow!

Thank you for your prayers. She told me this morning, "I'm sorry." I said, "Why?" She said, "It is those pills that make me feel mean." Poor thing but she is right. They do give her an emotional roller coaster, especially during the day since she takes them in the morning. But, usually the evening time rolls around and she is calmer and can sleep better.

Lots of love, Tracy

PS The guestbook was rolled over again, so it should load a LOT quicker:)
Thank you, Caringbridge!








February 12, 2007 3:00 PM

WBC 5.18
HGB 12.6
PLT 419
Glucose 45
Creatine 0.5

Hello:)
From home:)

We went to clinic after I packed a small bag in case Katia's body decided to spike a fever. She checked in fine. She definitely lost some weight. She went from 17.6 to 16.5 which is (in pounds) 39 down to 36. She doesn't need to lose weight...

Anyway, her labs looked fine. She was dehydrated so we got some IV Fluids, IV Zofran since she couldn't keep down the other Zofran and stop throwing up. Now it is in her and should last 24 hours.

On the bad side, we are going back up on the steroids, hopefullyt temporary. The highest she can go is 30 but we are going up to 15 so we aren't going all the way back up to where we normally go back up to. That is good. We were just really hoping for this wean to work. She responds very well to increase in her FK506 but since she was dehydrated we can't do that because her kidneys couldn't handle it so we are going to see how this goes first and go back next week or sooner if need be.

All in all, she still feels pretty crummy. She thought they were going to admit her so she packed her GameBoy and another cool little toy she got for her birthday. She had already figured she was headed to a room. She was happy to hear she wasn't!

So, please pray for no fevers and pray the steroid increase will get her GHVD back under control quickler. Her mouth and hips are the worse parts right now. Her eyes continue to be a problem. Her face and armpits look pretty bad right now and her knees look bad again. Her hips and knees are already permantly scarred from all of this with thickened skin and scarring.

On a good note, her hair has been thickening. We started using Nioxin shampoo and scalp treatment. I was hesitant but it REALLY REALLY works!!!

Also, please pray for one of Myron's friends at work who just lost part of his family in a car accident and his son remains in critical condition. The daughter in law and baby died though.

Also, I have two silent pray requests. I can share with you they are for emotional strength.

Love, Tracy












UPDATE AND PRAYER REQUEST FOR KATIA
FEBRUARY 12, 2007 12:05 AM

PLEASE PRAY FOR KATIA. SHE IS FEELING VERY BAD. HER SKIN SEEMS TO BE SHOWING GVHD COMING BACK. HER MOUTH IS IN HORRIBLE SHAPE. SHE ISN'T EATING. SHE IS SLEEPING MOST OF THE TIME. TONIGHT SHE HAS BEEN THROWING UP SINCE ABOUT 10 PM EVERY 10 MINUTES OR SO. MORE HAS COME OUT OF HER THAN HAS GONE INTO HER THE LAST COUPLE OF DAYS.

SHE FEELS BAD. SHE WANTS TO GO TO THE HOSPITAL BUT THIS TIME OF YEAR THE EMERGENCY ROOM IS WORSE THAN WAITING TILL MORNING TO GO TO CLINIC.

SHE IS ALSO PRETTY BRUISED UP ON HER LEGS AND HAS ANOTHER ONE OF THOSE "MYSTERY SPOTS".

THE COLD SEEMED TO BE GOING AWAY BUT IT TOO MAY BE CAUSING SOME OF THIS? NOT SURE.

I WILL FEEL BETTER TO HAVE HER BLOOD COUNTS CHECKED AND I THINK SHE NEEDS TO GO BACK UP ON HER FK506 AS THE LAST LEVEL WAS AROUND 6 AND SHE DOES BETTER BETWEEN 10 AND 15.

WE WILL SEE BUT PRAYERS ARE NEEDED. I HATE TO SEE HER FEELING SO PUNY AND WEAK AGAIN AND CRYING BECAUSE SHE KEEPS THROWING UP AND JUST WANTS TO GO TO SLEEP...

I WILL UPDATE WITH ANY CHANGES OR IF WE END UP TAKING HER IN.

IF YOU DON'T HEAR FROM ME ON THIS SITE, CHECk MY MYSPACE site as it is easier to update from my phone. Katia's CB site has way to much HTML code to mess around with and risk losing everything again. My laptop seems to be worthless at the moment so I have to work with what I have.

The link to My MySpace site is also at the bottom of this site as well as my email.

Love, Tracy







February 10, 2007 11:25 AM

Good morning.

I have updated a couple of prayer request. It is heart breaking to find out about disease progression and just knowing it is tearing a family apart. I didn't update yesterday for that reason. Sometimes, I just need to step away before I come and update. Thank you for your prayers for each of the above families though.

We heard from the Portillo Family last night. They arrived safely back in Honduras and everyone was so glad to see them and see how well Estephany looks. She was so sick when she left there back in early 2005.

Katia's cold seems to be going away. She seems to be fighting the end of the cold. She is however quite red in her face and arms, armpits and hips. Her mouth appears to be more irritated. Hopefully this is due to her body trying to fight a cold and not GVHD flaring up again at the "near end" of this steroid weaning process. She also has another one of those "mystery spots" she had problems with earlier. Just one though on her belly.

She is more spunky these last 2 days and up and about more. Plus, I odn't think she has picked up a tissue all morning so that is good!

Also, I need to let some of you know about my email. The email at the bottom of the page and the other sites is good. The tracysolomon@tmail.com however is no longer working. So, if you have it in your address book, it needs to be changed to tmsol87@aol.com
Contact Tracy

Hopefully we can get outside and do something today because the weather is perfect!

Love, Tracy











February 8, 2007 2:00 PM

Hello from Sunny Florida. For those of you in those COLD areas, we are sending you sunshine and warmth:)

Katia is feeling CRAPPY today, just really really bad. We called off school at the last minute. I waited to see if morning medicines would make her feel better but they didn't. She is going to just have to get through this cold.

She was REALLY congested last night and her cough got pretty bad but some pediatric Musinex seemed to help that alot. Her nose has run away but at the same time it is plugged up...

She has slept most of the day but right now she is up not knowing what she wants to do, what she wants to eat, what she wants to watch on TV... she is just kind of "unhappy".

So, I am going to finish up some things I am doing and watch something with her (her choice). Best thing she can do is sleep through as much of this as possible. I said (I shouldn't do that) to her that she would be feeling better by Friday. Usually colds don't last too long with her or they get a lot better but right now, I think I may be wrong and she is learning the days of the week. She knows tomorrow is the day mommy said she would feel better... Maybe we can mess around with that calendar:)

Love, Tracy

PS Anthony N. is scheduled to have his Bone Marrow Transplant today, Mark is battling more fever and infections.

ON A VERY GOOD NOTE!!!! Estephany left to return home today. They should be about back to Honduras now. I am sure there will be a lot of people VERY VERY VERY happy to see them. Estephany was gone from home since around May 2005. Long time.












February 7, 2007 11:45 AM

Good morning:)

As I type, Katia is laying on the sofa feeling pretty lousy but all of this is just due to her cold. Hopefully she will be back to herself by Friday:)

One thing she is learning right now is the Days of the Week so that is our goal to feel better, Friday.

Please keep a few prayer request in mind for Katelynn in your prayers. Another prayer request is for Carson. I will update more on these as I know more or if I can add a link.

Also there are a few silent prayer requests to add.

On another note, living down here in SUNNY FLORIDA, our prayers are with all of those going through all of these snow storms!! Wow, the pictures are just something else. When it gets 50 degrees here, we think that is COLD. My gosh, some places are below 0... How do you do it?

Also, for the victims of the tornados in Central Florida from last week. Some of those families are going through funerals this week and it will take quite some time for those who have lost their homes to get back into a home.

Please pass this following message on to all those you can.

IF YOU AREN'T A REGISTERED MARROW DONOR, PLEASE BECOME ONE. I KNOW MANY CAN'T DUE TO HEALTH REASONS. BEING A MARROW DONOR IS LIKE A LOTTERY FOR LIFE. WHEN YOU GET CALLED AS A MATCH, YOU COULD SAVE A LIFE, EXTEND A LIFE AND DEFINITELY GIVE HOPE TO SOMEONE REALLY IN NEED. ALSO, PLEASE REGULARLY DONATE BLOOD/PLATELETS OR BLOOD PRODUCTS. MAYBE GET SOME OF YOUR COWORKERS OR FAMILY MEMBERS LINED UP TO GO AS A GROUP ON A REGULAR BASIS. I KNOW FLORIDA BLOOD SERVICES IS IN CRITICAL NEED.

Also, Myron and I were talking the other day and just wonder how many have done either of these things after reading Katia's story or hearing of Katia's need for a match back in 2003.

I would love to hear from you, your story and if you have been called on as a match.

Whatever comes in as far as those who donate blood/blood products, have registered as a marrow donor or donated an umbilical cord (that is what saved Katia's life) I will print up and put it aside for her. What better way to let her know how her life has touched others than that?

I love to hear from each of you, really. Some of you are newer to Katia's site than others but some have been around since November 2002! Although Katia thinks you LIVE in the computer, I know you take a part out of your day to check in on Katia and others listed on her site. THANK YOU!

Lots of love, Tracy

PS You can either leave your stories of donating marrow, blood products and such in the guestbook or email them to me. I will work on collecting them and putting them together. I am not sure what I will do yet, but I will make something special:) Hopefully something I can share online.


Email: tmsol87@aol.com


PSS Katia has received a few more Birthday Gifts so I added them to the birthday photo album at: Katia's Yahoo Photos

THANK YOU!!!!


***************

February 5, 2007 11:23 AM


THREE YEARS POST TRANSPLANT!!!


Today is three years post transplant and that just makes us so happy!! When a person is headed into transplant, you think ahead to these days:)

Katia has been fighting a cold for a bit now but today, it is pretty well topping the charts on how bad it is. No fever though and it seems she felt a bit better after a bath. She is with Ms. Michelle right now doing her school work so that is good:)

We watched the Superbowl last night! WAY TO GO COLTS!!!

It was very nice to hear the speeches at the end on how God played a big part in their winning and their year. Dungy was with Tampa Bay for a while and his son went to school with Sharayah. We so wanted to see him GET TO and WIN the superbowl!! He is a great man! Also, I was sent a news clip on Gary Brackett and his family struggles over these last 2 years. He was a bone marrow donor for his brother who fought T-Cell Leukemia. His brother later passed but watching him play, after reading that story, just really made the winning even more victorious!!

Thank you for all of your prayers and for checking up on Katia over these years. In November this site will be 5 years old. Wow five years of my babbling:) Unbelievable.

Katia said to tell you thank you. Just thank you for everything! She appreciates her friends "inside the computer".

Love, Tracy












February 4, 2007 3:28 PM

GO COLTS!!!

Hello there:)

We are going to be settling down to watch the game here soon but I wanted to update while I have the chance.

I just checked on some of the Prayer Requests and thank you for posting your encouraging words in those guestbooks! Mark has a good update, he is staying stable.

Katia is feeling much better so her head is good and her back feels better:)

Thank you for your prayers!!

Lots of love, Tracy











February 3, 2007 11:21 PM

Late update I know but we are fine. Those were some ugly storms yesterday but we just got a lot of rain and winds. I feel so bad for those affected so please please pray for them.

Having been through a Tornado (when I was little) and two housefires that were total losses, I know they must just be feeling lost at this time.

Katia is doing well. She went down a slide and didn't stop at the end so she fell off and hit her back and head. Her head seems fine but her back is hurting her still tonight. She took some codeine and hopefully will feel much better in the morning. Accidents are scary with her due to the severe osteoporosis in her spine and hips and obviously any head injury is unwelcome.

She is having to sleep without the brown shirt tonight as it needed to be washed due to some blood on it...not sure how that got there but she is using the "subsitute shirt" an orange shirt that I have had since she relapsed and it is "okay" for her when the brown shirt is unavailable.

I am washing and drying it tonight so if she wakes up in the night, it will be there on her bed.

Well, I am tired so I should sign off and try to get ready for bed. Thank you so much for checking in. Monday will be 3 years since Katia had transplant!! Can you believe it? WOW!!

Love, Tracy









February 1, 2007 5:30 PM

I can't believe it is already February!!! This time 3 years ago, we were working up to Katia's transplant. Right now she is in the livingroom playing a game:)

We feel so blessed.

I was just going around to some websites and saw something that made me chuckle about kids without hair. "Some kids are too cute for hair!" I thought that was just precious.

I remember back in April 2002 when they SAID Katia's hair was going to fall out due to chemo, I thought, "She has some pretty tough hair." But, it did and I thought she just looked like a little angel. As a baby, she was never bald (none of our kids were) and I thought she had the most perfect little head:) She enjoyed the fact I didn't have to wet it and brush it each morning and she still thinks back to that when she gets a knot in her hair or something.

I also remember this time 3 years ago how important this website was (don't worry it still is!) and how much encouragment I felt. We had been in the hospital for 5 months straight by this time and I knew we had a while more to go before we would go to the Ronald McDonald House and finally home (ended up being 11 months). I never really felt "locked in" due to having so much connection with the outside world and so many people praying for and keeping up with Katia and others like her.

I get a lot of emails about how great it is to find the time to not only update on Katia but others BUT really, I am in awe of you that check in on Katia and others. Many of you do not have anyone in your family with cancer but yet your compassion and love just shines all around us and the whole CB community (and many other websites). It is YOU that gives me the ability and the reason to check on and update on others. I think everyone should have a website because I think everyone has something GOOD to share with others.

I learn far more from other websites than I could have ever imagined. I know the Internet can prove to be scary and even bad at times but there is a REALLY GOOD side to the Internet when it comes to research and worldwide communication.

I read the guestbook daily and I pray for those of you who are going through trying times and I am thankful for each of you. I am thankful for your caring which I think goes well along the lines of what CARINGBRIDGE was named for. CARINGBRIDGE offers such a great opportunity for networking and reaching out. I am very very grateful for them!

How is Katia today? Yeah, I will get to that sometime:)

She is doing well. Her IGG level came in at 673 which is over 500 so there is no need to do a transfusion at this time of IVIG. I am glad. Although I am grateful for the opportunity to get her the medicines and blood products she needs, this has been a hard few weeks with me not feeling well and 5 hours at clinic is not too welcome right now. Actually we will check her in THREE WEEKS!! We have a break from clinic right now:)

Katia had school today which went well. The Thursday classes were moved from 9AM to 11AM which makes a big big difference with Katia and her level of concentration. So now Monday and Thursday are at 11AM.

The Katia Solomon Foundation has an upcoming event which I will share more about as the date approaches. We are working on details. As the Foundation grows, it allows more to be done and also to add more and more people to that National Marrow Donor Registry which saves lives each day. Please continue to pray for our Foundation as it strives to grow.

I have updated/added to the prayer request above and I appreciate your checking in on those prayer requests above. There is an update on Meagan in the guestbook, the little girl that was having seizures that I had mentioned earlier in the week.

Please continue to pray for Mark as he remains in ICU fighting for his life.

So with that, I will let you go. I type faster than I talk I think so I tend to "babble type".

Lots of love, Tracy


*****************

January 31, 2007 1:50 PM
ADD ON @ 3:55PM: Please pray for a silent prayer request from one of Katia's Ladybug Followers. IGG levels won't be available until tomorrow.

WBC 4.05
HGB 11.9
PLT 397
Magnesium 1.9 (much better)
IGG 637

Katia had a good visit at clinic. We are waiting for her IGG levels to see when to do the next transfusion of IVIG so I will add that level on here when I get it. Her WBC and HGB have dropped but as long as they don't go lower, we should be good.

Katia has been kind of acting like a "slug" these last few days but I think we all kind of are. Birthday week was BUSY.

She just came and told me she needed a hug. I asked her why and she said, "I just do." I think she is off to take a nap which seems to be a daily thing right now at this time.

Her eyes are still her biggest problem I think. They are most always red and irritated but she doens't mention it much. One, she doesn't want eye drops as she says they don't work and secondly because she says she doesn't like to complain...We can usually just look at her and know when they are bad.

Good news though:) Her BUTT seems to be feeling better!! That is a big plus!!! She is happy and even made mention of it on the way home from clinic. She is happy when she feels better. After that, she slept the whole way home until we pulled into the driveway.

Well, I have to cut this short but I will add the IGG level when I get it. Hopefully it is well over 500!

Please keep a friend of ours in your prayers right now. His sister-in-law was recently diagnosed with lung cancer in December and passed away yesterday. The diagnose came pretty suddenly as well as her passing. He and his family are very close friends of ours and have followed, prayed for and have been such a support for Katia and our family.


Love, Tracy


PS I keep forgetting this. THANK YOU SO MUCH for your messages not only in Katia's guestbook (which we love to read) but also in other guestbooks linked to via the Prayer Requests or links from www.ladybugkatia.com Drop Down Menus. I know how appreciated those messages are and I appreciate seeing entries from the "Ladybug's Friends". You are so sweet!









January 30, 2007 2:40 PM
2nd Update Today

PRAYER REQUEST

Caitlin battles Autism. She is 8 years old. She has 3 sisters also ages 12, 10 and 3. Kristen, her oldest sister was diagnosed also with a higher functioning form of Autism called Aspergers Disorder. Now her youngest sister Megan is in desperate need of prayers. She had a strong seizure at school and things have just gotten progressively worse since then. More info can be found on her site. She is in PICU and has been for a few days. She is not doing well at all so please pray for this entire family. This family has followed Katia's story for sometime and now I think they really really need our support so please drop by and let them know the ladybug sent you by. Please pray for them to get some answers from the doctors and for Megan to start feeling better and doing better really really soon!







January 30, 2007 10:40 AM

Hello and good morning:)

I was just updating some of the prayer requests and I have some more to actually add but I will have to get back here later in the day to do that.

Katia is having a good day. Her "tushy problems" remain the same though so please continue your prayers for that TUSH. Katia did have a haircut the other day so those pigtails aren't as long. It seems they were going faster than any other part of her hair!! The length is still the same, just more evened out.

She is going to be participating in this years Pediatric Cancer Foundation's Modeling Show at Saks which comes up in March I think? She is very much looking forward to it. She wants to wear a pretty dress and "clip-clop" shoes. Katia is definitely not shy at all when you put her in some "clip-clop" shoes:)

She had a good day of school yesterday. Her brain wasn't too on top of things but she enjoyed her classes:)

Lots of love,

Tracy AND KATIA (she is sitting here ON me!)











January 28, 2007 4:00 PM

I have heard the picture link isn't working so let me know if this one is:)

Katia's Birthday Pics


Love, Tracy








January 27, 2007 9:30 PM

Katia had a fabulous 7TH BIRTHDAY!!!!

Thank you to each of you who sent a card, gift, message, etc. You made her day wonderful!!!

Here is a link to pictures and you can save any you wish to save:)

Katia's Birthday Photos

She had a lot of fun all day!!

Also, there is a video of our bad singing and her blowing out her candle to make her wish:)

Katia Birhday Cake and Song!

I haven't been online ALL DAY as we spent the day cleaning and cleaning and organizing and organizing. I will be back by tomorrow.

Lots of love and again, THANK YOU:)

Love, Tracy












January 25, 2007 9:35 PM
Katia's American Idol Tryout and Other Videos.


Happy 7th Birthday Katia

Wow, I can't believe when we wake up tomorrow that Katia, my baby, will be SEVEN!!! I have just had to hug and kiss her all night!!!

She is so sweet and she has been through so much that this is not only a milestone but a miracle. I know many have traveled down the cancer journey and not had this opportunity and we are so GRATEFUL and BLESSED. Katia has been a blessing in so many ways! She is a blessing in our lives and the lives of many others.

She is going to bed now (with the BROWN SHIRT) and she is very anxious for tomorrow to get here! She is so thrilled about presents and cake (I love cake too!) and I love to see her so happy.

I could share so much about Katia (I should write a book)! She loves to hear about the day she was born and how she was such a joy to all of us. We used to put her little bouncy seat ON the dining room table while we ate. Sharayah and Tatiana were just so thrilled with having a little baby in the house as were Myron and I. Sharayah and Tatiana thought we were joking when we first said we were having another baby BUT they were so much like little mommies and such helpers to me. They were 7 and 11 then and now they are 18 and 14. Still very much helpers though and still pleased and happy to always be part of Katia's days. She is a great little sister and they are awesome big sisters!

We are a very blessed family.

Love, Tracy

P.S. I would go on but I am getting all teary and stuff so I should stop here:)


***********

January 25, 2007 7:45 PM

Kody's brother has been found. Thank you for your prayers!!!

Love, Tracy






January 25, 2007 11:45 AM
ONE MORE DAY TILL THE BIG #7 BIRTHDAY!!

Katia's American Idol Tryout



Here are some videos we did just a bit ago. Katia is pretty excited about tomorrow so today I figured, PICTURE TIME!!! Why not take advantage of her very good mood:)

I had to move them over to my MySpace Site so the background music didn't interfere with the video.


Enjoy:)

Love, Tracy








January 24, 2007 4:40 PM
2 days and counting till the big BIRTHDAY!!!


First, I have a silent prayer request to ask of you. This has been a posted silent prayer request before and prayers are working but they wish to have them continued please for a lot of encouragment.

We have had a decent day. Last night wasn't too well. Katia has been having quite a bit of "BUTT PAINS" again and last night was kind of an all time high for a while. A lot of crying and screaming BUT she felt better by bedtime after some medicines.

She has had these issues in the past and it is really something that more has to heal on its own than anything we can do other than give her pain meds and creams. IF it gets worse, she can go in for added pain medication but I think she would chose to stay home and do the best we can. Hopefully her tush is feeling better by Friday so she can have a pain free Birthday!!

She is doing better on her counting!! That is great news! She learned to count 10-20-30-40-50-60-70-80-90-100 AND she is able to look at her counting chart and go from 1-100. She can also recognize how the 20's, 30's, 40's, etc. repeat themselves so she has caught onto that which is a BIG thing for her to catch onto. I kept telling her that once she could get up to 20, it would get easier from there. She needs the counting chart to count but I think it will stick with her soon. She says her brain is like oatmeal now, very sticky so things are STICKING:)

She has been quite happy with her Birthday Packages arriving. She can barely contain herself when the mailman pulls up. He must have a great job when someone is so so happy to see him!

I can't believe my little baby is going to be 7!! That is how old Tatiana was when Katia was born. Tati was 7 and Sharayah was 11. Now everyone is getting older (as well as me) and just moving along.

We are SO grateful for these milestones in Katia's life! She is truly a miracle!! We know that and we are blessed. Just 10 days after her birthday will be her 3 year post-transplant anniversary. I remember her 4th birthday in her transplant room with the nurses and doctors as well as some friends from the Leukemia and Lymphoma Society. It was a scary and hopeful time headed into transplant. I remember there was a LOT of balloons and a LOT of cupcakes!!!

This year, she picked a Disney Cake with glittery stuff on it:) It is going to be good! I love cake and I think it should be considered a vegetable or something and it should make you lose weight the more you ate it! Wouldn't that be great! Not likely going to happen though.

So, that is what is going on here. So, please pray for Katia's tushy and for all of the other prayer requests above. I have a few things to change around on Katia's site the next few days including some updating on the prayer requests.

Love, Tracy


****************

January 23, 2007 1:00 PM

Hello. Just want to jump on here quickly. I was looking up some info today and ran across this video story,
"A Brand New Life-TJ Reed's Battle With Leukemia Video"
It is pretty lengthy but really goes through the road of preparing for a bone marrow transplant and a lot of things that are involved that many people don't know about.

Katia is having a good day. She is wanting to get on the www.playhousedisney.com site right now but for some reason it keeps closing down so she isn't happy about that. There was something on TV she wants to look up.

Technically savvy kids these days:)

You know how they always say, "Ask your parents if you can sign on...", she always does:)

Please pray for Kody's Family today as there are some problems going on with Kody's brother. I know they could use your prayers and encouragement.


I have had a horrible headache and just ache all over. It has gone on for a few days so keep that in your prayers. I have an appointment on Thursday (I am difficult to force to the doctors...) so hopefully they can make me feel better.

Lots of love, Tracy








January 22, 2007 2:47 PM
WAY TO GO COLTS!!!!

We were watching the game last night. It was a GREAT game!! I of course had sweet Angel Donovan on my mind and I just knew the Colts were going to pull it off at the end!!!

I have to share something with you:)

Katia had a GREAT day of school today!!! Ms. Michelle and Katia were both very happy with the way Katia went through her school work. Hopefully this boost of Magnesium will solve some of her problems. So far, it really seems to be helping!!! She is very happy today though.

4 more days till the birthday!! She is counting down. She has received quite a few presents in the mail (THANK YOU THANK YOU THANK YOU!!) so she is getting very bubbly to tear into them!! I love seeing her with energy. We are coming up to her transplant anniversary on February 5th. It will be three years. I think of where Katia was before diagnosis, where she has been since diagnosis and where she is now and I am just grateful! I know she is also. There is a lot in that little bitty head of hers that she understands but doesn't communicate all the time. She can sit down and carry on a conversation with me though that just blows my mind sometimes and other times, she is just a typical little toddler/girl. I love her explinations as to why she feels certain ways or should get to do certain things.

Last night, she was getting a bit over anxious about the football game (mad I must say) so I called her down. She went a drew a picture of why she was acting the way she was. She says she doesn't control when she gets mad, it is these little guys in her head (they were ugly little characters!) She did it on a little doodle pad but I told her to draw it on paper so we can take it to clinic. Maybe her doctor will see those characters in her head when they look in her ears and can pull them out. She said, "No, they can only be seen with a CT Scan!" Okay? She is so matter-of-fact about everything. There really is no point in arguing sometimes.

So, that is what is going on in our world today.

Thank you for letting me know your TV favorites:)

Love, Tracy










January 21, 2007 10:30 AM

Please pray for Angel Donovan's Family as he passed away last night at 9:25 PM. As I watch the Colts play, I will know Baby D is watching from Heaven, feeling no pain and happy. I also know his parents will forever miss him, love him and remember everyday he spent with them. Baby Donovan will always be remembered.

On another note, in the last update I said I feel like the "bearer of bad news" a lot of times.

I have some very good news to share with you about someone listed in the drop down menus that I have followed for quite some time! Abigail is finished with treatment!!! No more x-ray, CT scans, nothing! She has gone through treatment for 4 1/2 years! She is OFF TREATMENT!!!

I love sharing good, great news too! Way to go Abby!!

Love, Tracy








January 18, 2007 8:00 PM
Second Update today...

I updated the prayer request just now. Some sad news up there.

Sometimes I feel like the bearer of bad news but I SO believe in the power of prayer and the need for encouragment. Please, if you can, go by those sites (or any in the Drop Down Menus on www.ladybugkatia.com and let them know the Ladybug sent you. "Sharing Hope on the Wings of a Ladybug". I go by the sites and I see some of the signing and I so much appreciate your leaving messages for our little CB friends.

A prayer request above for Marc is important to me, extra so. His Aunt Susan has followed Katia for quite some time. If you go by his site, he is being treated for Mental Illness. This is a HUGE journey and new to everyone involved with him. He likes Legos and Model Cars or things like that. Things he can work on and focus. I know a lot of attention is given to younger kids a lot of times but I can understand his need and his family's need for encouragment during this time. So, with Katia's birthday coming up, maybe we can give him a gift of Legos or Model Car Sets in honor of Katia?

Also, I got a really good email today, which I posted on my Personal MySpace Site in the blog entries. It was really eye opening. I am really trying to reach out in the MySpace world with the need for blood/blood product/marrow donations, etc. It seems to be working. One of my friends listed on the site is AMY and she has followed Katia's story since Katia's relapse in 2003. She is "Losing Weight to Raise Awareness" which I think was just an awesome idea!!! You can click on her site from my MySpace Site.

I have a question? We are into American Idol and the PlayOffs right now. I always wonder what everyone likes to watch. Katia is a big fan of Survivor when it is playing. She has two of the past season buffs. We also LOVE House and Frasier, Reba, America's Next Top Model. We have to record everything because we don't get a chance to sit down much to watch TV. Other than that, we LOVE the Discovery Channel and Animal Planet and CNN. If you stepped in my house during the day, you probably would hear either CNN, BayNews 9 (local news) or Animal Planet.

Katia says to say hello:) She wants to go to bed now:)

Love, Tracy








January 18, 2007 8:00 AM
I added a quicker running slideshow up on the page.


Good morning:)

If you look in the CB Photo Album Page there is a picture of Katia right now as I type, talk about an up-to-date picture! I have felt bad that I wasn't changing out the pictures.

Katia is doing well on her steroid weaning. As you can see, her face is unpink! No photo touch ups there:) She is making biscuits with me in the kitchen last night.

Please continue to check on and pray for our Prayer Request Friends. Drop by their guestbooks and let them know the ladybug sent you. I know they will love to hear from you.

If you have recently sent me and email, you can I am behind!! I have a lot of catching up to do. I have some prayer requests to add and Khalita, please resend me your email as it is only partially there due to some phone problems (which appear to be fixed now). A lot of things weren't getting to me and I don't know if things I was sending was getting to people. I use my phone for everything. I am looking into changing it to a TMobile MDA (an office away from home basically) so I can do a lot more and not have to wait to get to this computer, which seems to be more and more Katia's and less and less mine!

Katia is doing well. The Magnesium seems to maybe give her an extra boost. She is taking it twice a day, a larger dose than she was taking. The neuropsyche testing is on hold it seems due to insurance but today, Ms. Michelle is coming over so I can see what she has come up with and then call BCBS again. They said okay but they had no Pediatric Psychiatrist (okay?) and she needs a psychologist to do the test anyway, not a psychiatrist. Anyway, they aren't going to win this battle against me:)

So, Katia is on the big birthday countdown!!! 7 more days till she turns 7. She wants to look at her Birthday Wish List but I said no because that is kind of like knowing ahead of time what you are getting. She at least got to make her own list. I am one of those mean parents that will get clothes and what child really wants clothes (other than teenage girls?)

Well, I better go get her up for school. It takes a while to get Katia's gears moving, get her meds down and eat something.

Lots of love, Tracy









January 16, 2007 10:00 PM

First, Donovan needs a miracle!!!!! Please pray for him and his family at this time.

That is all I can ask for right now. I am grateful for Katia, her health and her upcoming 7th birthday:)

Love, Tracy



*******************

January 14, 2007 11:20 AM

Hello:)

Katia's cold is 99 percent gone!!! We are all very happy and hope it NEVER comes back!

I will be here later today to update further but I have been working on a project.

You can learn more at the newest AUCTION listing. Please pass this link on after you read it as I think it is a great idea to save memories, give as gifts from weddings, childhood, graduation, etc.

I am excited to be able to start this and I hope it will help fill a gap in our family's income.

Lots of love, Tracy







January 12, 2007 2:51 PM

I have good news... it seems Katia's cold is leaving the building:) She is feeling much better today.

She keeps asking how many "sleep sleeps" till her birthday, that is how she counts down and anything above 10 is overwhelming. So we are down to 14 days now till she turns 7. She is getting very happy!

I have found out that insurance will pay for the neuropsychological testing but not with the doctors she has used in the past so we are looking at the other doctors on the Provider Directory. At least they will pay. I try to stay within the same group (ACH doctors) so they can compare notes and work together.

Right now she is listening to the Christmas Mice (no we haven't taken down our tree yet...) so she is in a very good mood today:) I am always glad to see that and share it with you. So many pray for her to feel better and have good days and today is one of them.

We went through Amazon and made her Katia's Birthday Wish List. It is more obvious that she is getting older by what she choses. One (well two) things I thought was cute are Toy Chests. She is getting a bit disorganized and I stay on her case about picking things up so that shows she wants to keep things organized. We have gotten a lot of things out that were put a way for a while like her stuffed animals. We cleaned them up and she was happy to see them. She actually remembers most of their names. I have done that slowly and it seems there were quite a few!

I also found a really cool way of downloading Audio Books so we are going to try that with getting an MP3 player for her. I think she will enjoy listening to stories quite a bit. It will also help lengthen her attention span. She does play a bit more by herself and talks to herself. She says she doesn't have an imaginary friend that she is talking to herself:)

Well, that is about it for now. I have been trying to do a lot of things with closing out 2006 both with our house and the Foundation.

Lots of love, Tracy









January 11, 2007 6:23 PM

Prayer requests have been updated and there are some very critical requests up there.

Katia woke up today feeling pretty bad so school was called off. Actually her teacher's daughter woke up feeling very bad too. So it probably was a good thing that we called off school.

Right now she SEEMS to be feeling a bit better so hopefully this cold is LEAVING the house and stays away!!

Katia is drinking a lot of water right now to help her kidneys so hopefully the next test shows a great improvement. She is also on a stronger dose of magnesium now so hopefully that will improve.

She had kind of an upset day today though because she just wanted to stay in her pajamas but around 11AM, I finally made her change. Then she seemed to get up and move about a lot more so I think it was a good idea to get her dressed:) She even slipped on her little gold shoes for a while and clip clopped on the tile:)

Love, Tracy









January 10, 2007 4:11 PM
WBC 5.73
HGB 14.8
PLT 425

We are home but I will have to update more later. I have some prayer requests to add (I just updated some above) and I need to add some more to this journal .

Katia's magnesium was QUITE low today at 1.4 so we are going to go up on that by double. Her FK506 (Prograf) was 22 which should be around 10 so we are going to go down on that and her kidney function was somewhat higher which we want it to stay lower. That may be due to the Prograf level being so high though as it is hard on her kidneys anyway.

I also thank you for sharing your thoughts on Katia's education woes. I learn a lot by other people's experiences. One child I have kept up with for sometime, James P. is right around Katia's age (just a few days off). He is having a lot of the same issues. James has had numerous bouts with headaches and other issues that have gone on for a very long time without explination. With him being Katia's age, I know what I would feel like to have so many ongoing issues without answers and relief so please keep him in your prayers. Please leave James a note in his guestbook as he looks forward to receiving messages. Let him know his little ladybug friend sent you:)

Also, please keep the family of Angel Dakota in your prayers as Dakota passed away last night. I had just been sent an email about him a few days back.

We are going to start working with our insurance regarding the neuropsych testing for Katia so hopefully it will be an easy process, or at least not too drawn out.

Well, I think I have covered most of what I needed to:) I feel like I need a filing cabinet for my brain sometime. When I am at clinic for the day with Katia, I have a lot of things pile up in my head that I need to do when I get home. I think clinic should have built-in home offices:)

I also have a silent prayer request to post. This is a very urgent prayer requests so please keep this in your ongoing prayers.

Love, Tracy




************

January 8, 2007 9:00 PM

Hello:)

Things remain the same here...still a lot of yucky sounds from Katia's cold. She is up more though so she must sound worse than she feels.

I REALLY planned to get some pictures of her today but she was having a really red, raw nose day today so we will wait until that clears up some. Her poor nose needs a break, more than even the softest tissues and lotion can give. I don't think her nose is always runny, it becomes more habit to her for the most part. She can't go 10 seconds without touching that nose!

Ms. Michelle did come over today and we discussed some concerns about Katia's progress. I also discussed this with her doctors. We are going to go ahead and line up another Neuropsych testing for Katia to compare notes from her last visit with them and see if we can more individualize her learning. I am sure there is some type of learning disability there but we can't pinpoint it because it isn't "black and white". In Katia's words, "Things won't stick!" She can read a lot of words but when she goes to write them, they come out totally different than they would be. The sounds are off. She makes the correct sound but writes down a different letter or the right letter the wrong way. The same thing with numbers 1-9. She is reversing or writing down a totally different number.

We definitely don't ask Katia to master everything but we do want to catch anything early on and find ways to work around these issues. I have learned many ways to work around things but this has me pretty stumped.

On a scale of 1 - 10 for effort, Katia is a 100!! She does try but I understand why she is getting upset and frustrated and no matter what we tell her, she has some goals and she wants to reach them. She likes to write sentences down to pass notes back and forth but she usually ends up having to tell us what they say and that bothers her a lot.

She was doing better with a word list that she could look at the words and form them into sentences but she has also regressed in that area, more so I think out of frustration and throwing in the pencil, literally.

So, please pray for her. I know this isn't a huge thing or a health crisis and I am thankful for that. We all want our kids to be happy and although Katia is quite happy, she is frustrated.

Well, I am being asked to come watch some REBA with the girls (we really like that show!) so I better close this out.

Lots of love, Tracy

PS Check out Amy's Blog as she continues to "Lose weight to raise awareness". She is doing really well!! Way to go Amy!!







January 7, 2007 4:00 PM

Hello from sneezy, runny nose and cough ville.

This cold just won't leave Katia alone... but she is drinking well so that is always something that keeps her moving along and keeps her doctors happy:)

She also believes in "feed a cold" so she is doing fine with eating:)

I have updated a few prayer requests over the last few days but I feel bad cause I have been semi-out-of-touch for a few reasons.

But, hopefully I will get back on top of things soon because my day doesn't feel complete if I don't get a chance to check on people, pray for people and update so others can pray as well. I am a FIRM believer in prayer.

There are plenty of links in the Drop Down Menus on www.ladybugkatia.com. Some are in treatment, out of treatment, looking for treatment or considered cure. But, I am sure any of them would love to hear from visitors:)

Thanks for keeping up with Ms. Katia. The prayer is this cold goes away quickly. She is due to get an IV Transfusion of IVIG this Wednesday and I would feel much more comfortable if she was over this cold so it doesn't complicate things.

Lots of love, Tracy








January 6, 2006 10:00 AM

Good morning:)

Katia is feeling somewhat better today. She just has a lot of crud in her head (she uses another word SNOT). She does keep getting little nosebleeds on and off. I think it is just due to her rubbing her nose so much.

I have a favor to ask of you. I know there is a lot of love out there to be shared and I ask that you drop by a site and leave a note of encourgement.

Marc has been mentioned on here before but they just started a CB site for him as the BLOG he had was a bit confusing. Marc is 18 and was recently diagnosed with mental illness. He has had problems throughout childhood but they went unrecognized as illness and were treated as bad behavior. Now, he is getting help but it is proving to be a very difficult journey as so many do not understand mental illness. His site was sent to me via his Aunt, Susan, who has dilligently kept up with Katia for years. She has stepped in and is helping Marc on a daily basis now. Hopefully he can get on the right treatments, be in a good home setting and really get on the road to recovery. Although it is a lifelong illness, he can get stabalized and lead a good life.
Let him know the LADYBUG sent you. He knows who she is and keeps up with her also:)

Love, Tracy









January 5, 2006 3:30 PM
2nd Update today

WBC 7.96
HGB 14.9
PLT 415

By counts, it shows Katia's body is trying to do something? The influenza came back negative so that is good and we are waiting on RSV. Hopefully it is just a cold and nothing else.

She sounds pretty cruddy but it is better she is coughing and it stays lose than not.

Katia wasn't happy about the nasal wash but she was happy to get it done and over with.

I added a new site in the Prayer Request and I have a silent prayer request to ask of you. There really needs to be some prayers said for this request and ongoing prayers.

Well, Katia is parked and instead of a bell, she yells. She is drinking good though which I am proud of her for trying so hard though. She does try to follow doctor's orders all the time:)

Lots of love, Tracy









January 5, 2006 9:00 AM

I guess Katia will be going in today. She sounds quite a bit worse and the wheezing is worse. She doesn't want to go but I gave her yesterday to see improvement and she sounds much worse this morning.

I told her they won't admit her, just do a little swabbing here and there and maybe a chest/head x-ray.

I will update later.

Love, Tracy









January 4, 2007 5:00 PM

Well, as I type Katia is up and about but she sounds horrible with a bad cough, sniffles, congestion and a tad bit of a wheeze, not too much. She has had no fevers though.

She did sleep most of her day away and she looks pretty puny. She has gone from 18.6kg to 17.2 (which is 41 pounds to 37 pounds) in just a few days but that is probably due to the recent weaning dose of the steroids. We are getting down to the amount where she will start losing her appetite. She threw up quite a bit last night but none today.

Our prayer is that this just stays as a head cold, doesn't cause any fevers, chest congestion, pneumonia or anything. By tomorrow if she doesn't sound better, she needs to go in and get SWABBED (that thing she hates so much stuck up her nose and down her throat) just to make sure it isn't something going around that could cause her to continue to get sicker.

Poor thing... she just walked by with her little kleenex, brown shirt, favorite chicky animal and her stethoscope. I guess she is her own doctor now:)

I just wanted to jump on here and update. As far as prayer requests, most of them are about the same but I know they appreciate your prayers and visits. I have another prayer request to add tomorrow but I needed to gather up some more info before putting it up there.

Love, Tracy



***********

January 3, 2007 9:50 PM
2nd Update today...

I just ask you pray for Katia. She is feeling quite bad with a cold, vomitting and such. No fevers though. She just feels quite bad right now.

Love, Tracy







January 3, 2007 1:30 PM

Just wanted to put a link on here. Amy has followed Katia for quite some time and has been a big supporter of the Katia Solomon Foundation as we continue to move forward raising awareness, helping others and working with other existing organization. Not long ago, Amy came to me with a very good idea on a way she could earn money to donate to the Katia Solomon Foundation. She has her own site set up on how she is doing this and I think she has a GREAT GREAT idea and is truly an inspiration!! Thank you, Amy!!

Visit Amy's Site to learn more.

Also Mark is showing some improvement today so PLEASE keep those prayers going. Just knowing there are so many prayers out there for Mark has to be comforting.

Thank you so much, Tracy:)







January 2, 2007 6:00 PM

Please keep Mark's family and Mark in your prayers tonight as his condition is worsening even more.

As today finishes, school holiday comes to a close so Sharayah and Tatiana are off to school tomorrow. They are happy. They like school and Sharayah just can't wait to graduate this year:)

Katia is also on the countdown now to her 7th birthday!!! Can you believe it, 7? WOW!!!!! She was 3 when I started this site for her. Unbelievable. She is a miracle and each day is a blessing. She is so happy to have a birthday coming up. I remember turning seven, it was a long long time ago but I remember I thought it was such a big number!! She is the same way, 7 is just HUGE compared to 6 for some reason:)

Lots of love, Tracy







January 1, 2007
HAPPY NEW YEAR!!

Note: If you have sent an email to my tracysolomon@tmail.com address and have not heard back from me, please use my address at the bottom of the page tmsol87@aol.com as my tmail is not coming through at this time. Thanks:)


I have just made some changes in the Prayer Requests section but I also wanted to add something here as well.

Please keep Mark D and his family in your prayers as he is still in PICU and it seems his condition is critical and worsening. He is just 2 months out of his bone marrow transplant.

Also, another person I would like to ask prayers for is, Donna who suffers from Dystonia. She led me to another Prayer Request which has been added above for Joseph M. who is also recently out of transplant for leukemia AML and is in PICU having a very hard time.

Caringbridge has been such a blessing for others to share their daily journey like we share Katia's and it is a source of hope, prayers and love for so many. I thank you for being a part of that with us.

Katia has been having a good year so far:) She has been doing a lot of writing (she got a new pen for Christmas) so she brings me the book and reads me her writing and I fix it up for her. She is also strengthening her muscles quite a bit by dragging that penguine in the picture above ALL OVER THE HOUSE:)


Love, Tracy








December 31, 2006 8:48 PM

No long update for tonight, I promise.

I just wanted to wish each and everyone of you a VERY HAPPY AND SAFE NEW YEAR!

There are already fireworks going off here. Katia is pretty wiped out so we are going to call it a night early (I am getting too old to stay up I guess) but I wanted to jump on here and send out best wishes to everyone.

Please continue to pray for the above listings in the Prayer Requests area as well as so many others. I have some new prayer requests to add so keep them in your prayers as well even before I add them.

I pray that this year will bring much hope for future cures and treatments as well as a good year for Ms. Katia.

Katia is a strength around our house. She is a typical 6 year old sometimes, a 2 year old at other times and a 30 year old many many times but most of all she is a beacon of hope and strength and an absolute miracle.

We are grateful to be ringing in 2007 with our little Katia:)

Lots of love,

Tracy









December 28, 2006 5:30 PM

NEW PRAYER REQUESTS ADDED...

Love, Tracy






December 27, 2006 8:35 PM

Please pray for the family of Angel Jenna. She passed away today after a very long and courageous battle. I followed Jenna for quite some time and was very touched by her spirit and strength. I can't imagine how much her family will miss her. I wanted to post a prayer request earlier today as a few people emailed concerning her condition worsening. I feel bad as that is what I came to do tonight. But, please pray for her family during this time. "Jenna, you will be very missed sweetie, but you will never be forgotten."

Love, Tracy








December 26, 2006 7:40 PM

Hello!

I have sat down here numerous times to update but I always get to checking on other sites and I don't update Katia's. There are so many in need of prayers right now. I can't list them all which is sad. It would be nice if EVERYONE just got a break during the holidays from chemo and sickness, fevers, treatments, etc.

We were blessed!!! That is all I can say about Christmas. It wasn't about gifts and food but we were all together and we were grateful. Katia looked so good this year compared to last year and the year before and so on.

She was tickled pink (but not GVHD pink) opening her packages. I will put some pics on tomorrow afternoon after a meeting we have. I have to say the pictures didn't come out too well... can you believe that? But, we have a few nice ones and I will share those with you:)

I was thinking of how different this Christmas was for Estephany from last year. Her family is just so grateful for having the chance to all be together this Christmas. This time last year, her dad was trying to get travel papers for him and Sara (Estephany's matching sister) and Mom was standing beside Estephany's bed as she laid in a coma.

I also thought about the many that spent last Christmas with loved ones that weren't there this Christmas like (just to name a few, Jake R., Jerry Gomez, Bailee, Amazing Jacob, Carlos M., Christi T., Will B., Ellis, and the list just goes on. Those links can be found in the Angel Drop Down Menu. All of these Angels that are spending their first Christmas in Heaven with the Reason for this Season, Christ.

This has been a year of roller coaster rides for so many also with so much uncertainty, stress, good moments, bad moments and just moments of numbness.

So, knowing all of this makes Christmas even that much more special as we are never promised tomorrow. The feeling of Christmas should live throughout the year. Not the shopping part and nonstop going but the moments that we reflect.

Of course life is not perfect and everyone has their bad days of feeling like, "This is the worst day ever!" Those days are going to happen.

I asked my kids this morning, "You know what the best part about today is?" I think they were waiting for me to say something thoughtful or fulfilling with meaning or even some lecture... (I lecture a lot) but instead I said, "It is 364 days till next Christmas!!!" Katia wasn't too happy about that but then she remembered, she has a birthday one month from TODAY! Yeah, she will be the big "7". That is the age Tatiana was when she had to stop being the "baby of the family" and hand that crown over to her new sister, Katia:)

So, I guess when we are packing our tree and putting away ornaments, I guess we should think about even though each year seems to FLY by faster and faster, so much does go on throughout each year. So much.

Love, Tracy

PS Thank you for the gifts and cards that were sent out to Katia:) She had a VERY fun Christmas!!


**********

December 24, 2006 7:30 PM

Merry Christmas Eve:)

Katia is just waiting to go to bed!! She wants Santa to get here... I have to agree with a lot of you, that Santa in the picture above looks like the real one to me!

I have updated quite a few of the prayer requests above. Mark D. is in desperate need of prayers right now as he is in PICU intubated and on the ventilator. Please keep him in your prayers throughout the night. Things can change either way for him very rapidly.

I know I usually write some very long entry for Christmas and other holidays but today, I just want to ask for your prayers for so many. I hope you will be able to enjoy your holidays with your family, take lots of pictures, share some good food and just enjoy being together. I know some family can make you happy twice, happy when they arrive and happy when they leave. But, it is nice to be able to get together and share memories and take a day to put work aside and try to slow down. That is hard to do, I KNOW! I have to force myself sometimes to sit down and just relax. I am a pretty hyper person, go and go and go. If Katia can keep up with me all day, she is getting some good exercise:)

So, have a fun, exciting and Merry Christmas!!!

Love, Tracy and the whole Solomon Family!!!










December 23, 2006 1:28 PM
December 23rd Tampa Tribune Article on Estephany


December 18th St. Pete Times Article on Estephany



I have a silent prayer request to come to you with. It is an urgent prayer request but the details are person and they do not want them shared. Maybe later.

All I can say is this family is in desperate need of your families.

On the other hand, how is Katia today? Well, she is mighty happy that the time is winding down to Christmas! She is a lot of smiles right now. Medically, she is doing okay. I don't know why her counts are so low but that definitely explains why her skin looks so good. There is no "fight" going on if there is no immune system trying to fight. So for now, we will just pray things start kicking in. I would rather have an immune system fighting on her behalf but I am also happy that her eyes seem better right now and that she isn't so pink looking.

I agree with a lot of you, that Santa above MUST be the REAL ONE!! Look at him!! WOW! Imagine running into him on the street in July or something?

I have been asked many many times what I want for Christmas. Honestly, there is a lot I want. Peace, Boredom, a lot of help for other families, Katia's ongoing health and many things along those lines.

We got some bad news this past week. Sharayah did not get into Princeton. Nothing against her but just a lot of applicants and the competition was set at a very high level. We are very proud of her. She has received a lot of very high recommendation letters and has achieved high grades. She will graduate with Honors and we are proud of that. She still has other applications in and has received a yes from 3 other colleges but she is applying to two more also. She has high goals which I am all for:)

Thank you so much for taking the limited time I know you each have to check in. Please keep Mark D. in your prayers as the results so far are showing infections and GVHD so he will be there for a while. He is still having fevers and feeling really bad.

Love, Tracy








December 22, 2006 4:40 AM
FK506 6.8 low

3 more sleep sleeps!! That is what I keep telling Katia every 10 minutes when she wants to know when Christmas is.

She is very very anxious. It is cute actually:) She is buzzing. Everyone else in the house is pretty busy these days with different things but Katia, she is all about CHRISTMAS!!!

We are going up on her FK506 (Prograf) since the level is continuing to drop but other than that and dropping one more milligram on the steroids, things are staying the same.

I know a lot of people in need of prayers right now for many different reasons. I updated some of the requests above and added a new one for a little girl who has been put on hospice now.

Thank you so much for taking the time to drop by:)

Lots of love, Tracy









December 21, 2006 9:50 AM
WBC 3.66
HGB 12.6
PLT 438

Sorry I didn't get on here yesterday. I still need to go through and update some prayer requests and I have a few to add so I will jump on here later today, I promise... well I think I promise.

Katia's labs were a little "off" yesterday. Her WBC dropped quite a bit? She is laying low anyway right now so she should stay healthy. Just 4 more days till Christmas and she is doing good:)

Please keep Mark D. in your prayers as he is the hospital and STILL running fevers (link above in Prayer Requests Section). Also there are some families that are really in need of help right now and prayers so keep them in your prayers also. For more information if you would like to help, please email me at tracysolomon@tmail.com

Other than that, Katia is doing well. I think we have decided against cutting her hair. She wants it cut but it seems to be growing out pretty nicely and becoming more able to be worked with. She doesn't like having her hair brushed so of course, she just wants it off but I think she will change her mind soon enough.

The steroids are being dropped again so we will be at 8mg a day from 30mg back months ago. We are headed in the right direction. Her appetite is dropping and so is her weight now. We had the talk yesterday (her doctor did) about if she stops eating again like last time. Last time she dropped down to around 25 pounds. She is at 40 right now. She can't really go below 35 SO, she needs to keep some of the weight on.

Have a good day and be safe whatever you are doing. Love, Tracy



******************

December 19, 2006 8:30 PM

Angel Chassity has passed away today. Please keep her family and friends in your prayers.

I will further update after clinic tomorrow.

Love, Tracy










December 18, 2006 5:43 PM
2nd Update today...

I have 2 prayer requests to add. One is for a dear friend of ours that just lost a dear friend to him due to suicide. He had suffered with mental illnesses for years and had been in and out of help centers. It is just a very sad situation as he was very helpful to our friend during a recent recovery from serious surgery.

Also, please pray for Marc who is not doing too good right now either and has had a real setback. He also is dealing with mental illness.

As you can see from the picture at the top, Katia met with Santa today (but she forgot her list) so she named off a doll and unicorn I think:) She told me, "He was a good looking Santa."

Lots of love, Tracy









December 18, 2006 12:45 PM
See Ms. Katia's visit today:)

Hello:)

These days are just flying before through the holidays. I don't think it is so much due to Christmas but more because of things we are involved in right now and trying to get a few last details worked out.

I want to share an article that came out in the St. Pete Times today.

St. Pete Times Article. We have been really trying to get things tied together for this event as well as Christmas (we are lacking on that end) and just a lot of other things. I must say, I look very forward to bedtime but I am grateful to be busy, really:)

Katia is feeling well today. I think I will have a NICE new picture to post here later today. Myron is out with the girls and I hope they are doing what I think they are doing.

I have some prayer request to update but I will be brief for the ones not listed above. Two are silent prayer requests. The prayers are working but they wish to have the prayers continued. The other is for a man, Paul that I have been keeping up with. He has no website but please continue your prayers. Also, please pray for those families missing their loved ones this time of year more than the rest of the days in a year. I imagine the pain never gets easier even as the years pass. Some of just lost their loved ones in the past week, weeks, month or months and this past year but others have lost theirs years ago and the pain is still there. No matter how a loved one is lost whether it be due to a drawn out sickness, sudden accident, whether it be an adult or child, the loss is still there. So, please keep these families in your prayers.

We go to clinic on Wednesday because Katia needs her counts done and her skin looked at. She has been itching like mad but she doesn't have a rash. Maybe her blood counts can explain this. It just comes on suddenly and then goes away after 30 minutes or so. She says it is driving her "bonkers!"

Well, thanks for checking in and have safe shopping and traveling times.

Love, Tracy








December 16, 2006 8:25 PM

I added a new prayer request above of a little boy that could use some visits.

Katia is feeling well today:) She has been a little low key and sleepy but she is up and feeling quite well right now. I think this time of year just slows people down...

I have recently met a few families via My MySpace site recently. I am always saddened to hear of new families facing cancer or ones that have struggled so long but I am also glad they have been able to reach out for the support of others.

I can't believe Christmas is so close!! I really haven't done ANYTHING to tell you the truth. We have a Christmas tree that is playing with when it wants to light up and not? There are 4 strands of lights I think that take turns on lighting up. I guess it has its own personality.

Oh, I have to share this. I was AGAIN hit by another wreckless driver today!!! The last time was right around a month ago when someone rearended me. Today, someone backed into me in a parking lot. Am I invisible???? The girl was very sorry and the only thing messed up on my car is the front bumper and light so it could have been worse, again. I get an instant headache and my neck is so easy to "stress".

I have an older Nissan so again, I have to say they hold up well:)

Lots of love, Tracy











December 15, 2006 8:30 PM

What is it with me and late night updating:)

Anyway, today has been a good day. I like those.

First, again I must say thank you for the help provided to the family who recently lost their house to fire. We went by today and dropped off some donated furniture, lamps, curtains, household items and other items. They were so grateful and seeing as I have been through a housefire of total loss when I was 15, I know how hard it is to start over. You reach for a measuring cup, it isn't there. You reach for a spatula, it isn't there. Well they are really getting things together and it is because of so many gracious people!!!

Also, Myron had a radio interview with the Portillo Family today. That went very well also. The Katia Solomon Foundation was started to help others in the way that people stepped forward to help Katia in her time of a marrow match and our family's need of help. Now it is for helping others. Estephany and her family are together, Estephany is SO healthy and they will soon be returning home. Estephany was filled with tears of happiness through her interview today. She knows how sick she was this time last year. It looked like she wouldn't make it through Christmas much less have a bone marrow transplant. Her dad and little sister were finally granted visas for travel to the US after a LOT of phone calls and letters and Estephany came out of a coma soon after her dad's arrival. Her sister (also her match) gave her bone marrow just a couple of months later and now, ESTEPHANY IS DOING GREAT!!! I mean she really looks so good and feels good and she is truly appreciative and happy.

I will add some new pics on her site soon that were just taken so keep an eye out over there:) I will post about it. Nice family pics.

Katia is doing better also. She was feeling quite puny for a few days and pushing a fever but it never got up to 38.0, she is home and healthy and Christmas is getting closer. She is very excited!! Right now she is having a really bad headache and her eye is really bothering her so we are praying she will feel better tomorrow. She continues to have a lot of pain in her eyes. I look back on pictures this time last year and she was so small and frail. This year, her body is stronger and she is eating well. There have been quite a few emails about what does Katia want for Christmas and I really haven't posted anything here because we have been really trying to do stuff for other families. We want to help a few families out with gift cards including the family that just lost their house to fire. That way they can go get the things they reach for and aren't there. I think that is what Christmas is really about.

Katia's wish? A Unicorn:) I am not sure what she really means because she almost sounds like she is after the real thing but I am thinking it is something that has been in a Disney Movie or something. I don't know. I just know she wants Christmas to get here... it is not coming quick enough. I just hope she wakes up Christmas morning feeling GREAT! She has been exercising her fingers actually to open presents. I haven't really done ANY Christmas shopping. I used to have that done by November and I was eager to just get the tree up and wrap gifts but now things are much much different.

I hope you each have a nice weekend. I know most people don't come by here on the weekends but I wanted to get an update on here. I will work on Estephany's site because the pictures are really GREAT!!! She looks so healthy, happy and she is just so full of life.

Katia says to say hello and to please pray her eye feels better.

She has also been very happy with the Christmas cards and packages. She still is very much into mail!! She loves to open things. Thank you:)

Love, Tracy


***********

December 13, 2006 8:12 PM

Hello:)

Wow, I am late. I have been meaning to get on here all day to add a few prayer requests.

One is a silent prayer request but your prayers are working and they would like them to continue.

Second is for a young gentleman fighting Hodgkins Disease for the second time. He is fighting for his life right now on the vent. His wife is about to give birth and while this should be a very happy occasion, they are at the same time waiting for her husband to have an open lung biopsy to find out if has pneumonia or if the cancer has spread to his lungs. Please pray for them. They also have a little 4 1/2 year old son.

Another little girl was brought my attention to night, Hailey Marie that is just out of transplant for leukemia. She is having some complications right now. I will find out more but for now maybe a few guestbook entries of encouragement from our "Ladybug Friends" would be uplifting. She is 3 years old.

Katia is doing well today. She has felt a little puny and warm but she is doing okay. I have some Christmas pictures she drew so I will scan them in to share:)

We have been pretty busy with a few projects but they are answers to prayers. One is the family that lost their house to fire, the mom with the four kids? We have had a good response with some furniture and household items. THANK YOU! I told the Mom a lot of people are praying and she is so grateful.

The other is preparing for Estephany's Event. I have just recently seen her twice and she just looks so good!!! What a blessing!!! This time last year, she was in a coma. What a miracle!

Thank you for being a part of so many prayers and miracles.

Love, Tracy

PS Happy 19th Anniversary Myron:)









December 12, 2006 4:00 PM

Hello:)

We are back from clinic and everything went well with Katia's IVIG transfusion. Hopefully that holds her through the holidays.

I have 2 families I need to ask prayer requests for. I really can't give details due to privacy issues. One just had an unexpected loss of their child and are facing some extreme hardships. If you would like to find out how you can help, you can email me.

Contact Tracy



The other is still the family with the Housefire. One thing they really need now is some Gift Cards to get some necessary things for around their house. Again, you can email me and I will give you the address to mail this to them directly.

Both of these families are outside of what The Katia Solomon Foundation really does but we want to be able to provide some relief through networking and asking others.

Lots of love, Tracy








December 11, 2006 3:00 PM

Hello there:)

Well, we had our coffee at home this morning. My dad arrived yesterday. Our clinic is set for tomorrow from about 10:30 AM to about 5PM so that is much better than today.

Katia needs the IVIG so I didn't want to hold off too long. It seems with the holidays comes more germs so she needs all the protection she can get. I do not want her to end up sick for Christmas or New Years. I want her feeling really really good!

I was looking back at pictures from last year and she was nearly off of steroids and was so so small. We always worried about her being too cold or losing too much weight. Right now she is down to 9mg of steroids per day so until she gets to around 5mg a day, she should maintain her appetite and weight decently. It is hard with her being so skinny when it is cold outside. The plan right now is to go down 1mg every 2 weeks. So, if we stay on track, she should be off steroids in 18 weeks! We will see:)

Katia got a McDonalds gift card in the mail and was totally tickled pink and ready to use it so that is what she had for lunch today. Having McDonalds back is a big thing to her, anyone that age I guess. It was one of those privileges she could wait to get back. She can't go inside but she can go through the drive thru and she does that with a SMILE on her face each time.

Sharayah and Tatiana start vacation next Monday which will be nice. The way the weather is (PERFECT!), Katia wants to get them in her Playhouse for Tea Parties.

I haven't really updated much on the prayer requests because things are staying pretty much the same right now, which in most cases is a good thing. Please do continue to pray that the doctor's can get Donovan's cancer back into remission.

14 Days till Christmas!!

Love, Tracy



****************

December 8, 2006 9:00 PM
WBC 6.55
HGB 13.1
PLT 411
FK506 ??
IGG 487 low...



First, if you haven't already, you HAVE to go read the update on Angel Jake's Site because it is completely unbelievable! Something great has happened, that is all I am going to say...


As far as today's clinic visit, all went well. We do have to go back for IVIG as she went from 701 down to 487 so she needs an IVIG transfusion BUT, not Monday... maybe Tuesday or Wednesday. It will be a long day so I am glad it isn't Monday.

I really can't go beyond that because I am still kind of in shock (well more than kind of) from reading Jake's site! WOW! Okay, go click to his site:)

Love, Tracy










December 8, 2006 8:00 AM

Hello and good morning. We are about to head off to clinic.

I wanted to ask your prayers for someone.

His name is Marc . This is the nephew of someone who has followed Katia's journey for quite some time and Marc could really use some encouragment and prayers. He is 18 and was recently diagnosed with Schizophrenia. Other than his aunt, he really doesn't have a strong family background anymore so I am sure he could use prayers as he faces treatment and a long term change of life, hopefully for the better.

I will update when we come back from clinic. I am praying Katia's IGG level is above 500 so we don't have to return Monday for IVIG (long day). My dad arrives on Sunday for the holidays and one thing he really really looks forward to is coffee in the mornings with his daughter (ME!). We usually end up spending his first morning here on the way to clinic:) He is okay with it but I really hope we can have coffee here at home. I personally think Katia's IGG level is going to be good so I have a very positive feeling about this!! I also think her immune system is beginning to rebuild on its own so I think her IGG level will hold for longer each time in between IVIG transfusions and hopefully they will become a thing of the past. So pray for the number to be above 500:)

Lots of love, Tracy









December 7, 2006 4:00 PM
2nd Update today...

We are trying to help out a family in St. Petersburg Florida that just lost their home due to fire. It is something we are doing outside of the Foundation so we are just personally trying to help.

If you live in the local area and would like to help, they are in need of household items, furniture.

You can email (tracysolomon@tmail.com) me if you are interested in helping. There is a mom and 4 small children so hopefully they can get resettled before Christmas as best as possible.

Thank you so much!

Tracy








December 7, 2006 3:00 PM

Hello:)

Two updates on the 5th and none on the 6th? I updated Prayer Requests yesterday and today but never updated the journal yesterday.

Katia is doing well. That is always a good thing. As we get closer and closer to Christmas, I stay very thankful for no admits!! YIPEE!

We have been staying quite busy with some upcoming events for the Katia Solomon Foundation. One is we are moving into an office! That will be great! We are sharing office space but it is a big step forward in the right direction. We are also working on a get together for Estephany as she nears heading back home. She is doing so well!!!!! We are so happy for her and her family. Words can't express how thankful we each feel as we think back to what she was going through this time last year.

I would like to ask a favor of some of you. I know a lot of you keep up with Katia and also the Katia Solomon Foundation. We are trying to make something using short phrases on WHAT THE KATIA SOLOMON FOUNDATION MEANS? Just a short statement. We are going to make something with this and put the person's Name-City-State. So, if you would like to be a part of this, you can either email me or just leave it in the guestbook. Something short... I know I am long-winded but we just want one or two sentences. Katia has inspired a lot of people to do a lot of good things but one thing she completely inspired is The Katia Solomon Foundation and what it does.
Thanks:)

Katia has clinic tomorrow. She is looking really good though. Slight sniffles and sneezing but she SAYS it isn't a cold:) I don't think it is either.

I have spent a lot of today CLEANING! Katia helped by staying low-key and entertaining herself. That is a BIG help to me:) I love to clean. I would have continued but my body doesn't love cleaning as much as my mind.

Well, I will update after clinic tomorrow.

Lots of love, Tracy

PS Please visit the Prayer Requests section for updates.



******

December 5, 2006 4:15 PM
2nd Update Today

Hello:)

Again, Katia spent a lot of her day just like the top picture, by the tree with Jolly:)

She is VERY VERY VERY EAGER for Christmas!! It is nice having younger kids around because they just bubble so much and get so happy this time of year.

Katia is feeling well today other than her eyes. We did do homework though for about 30 minutes. Her face has been much clearer (not so pink and rashy) these last few days so that is GREAT! I am eager to see what her counts look like on Friday.

Wow, there are so many right now in need of prayers, for so many reasons. I have gotten quite a few emails over these past few days, some silent prayers, some newly diagnosed people, a family who lost their house to fire, and just a lot of things. So, please just pray for everyone. I know prayers can help out at nearly anytime.

Pray for safety. I know there have been a few local accidents here with people hanging lights up and I can't imagine how many accidents happen up north in the snow or people using chainsaws to clear away fallen limbs and such.

So, please pray for everyone, eachother and yourselves:)

Lots of love, Tracy










December 5, 2006 9:50 AM

I have 2 prayer request to post and then I will be back later to update. Please pray for a little 4 year old girl, Fiona that has Trisomy 17. She is about to undergoing more detailed testing to find out what part of the extra chromosome she has. They will know better as to what to expect in her condition so please pray her and her family at this time.

Also, there have been some really bad storms going on in MO and IL so please keep those in your prayers that are still without power. There is still the fear of even more losing power as ice is still having a lot of effect on trees and power lines.

I haven't checked on other sites yet this morning so I will update the prayer requests when I check on others.

Thank you so much for your prayers.

Love, Tracy








December 4, 2006 7:30 PM
2nd Update Today

Sweet Angel Ellis has passed away surrounded by his parents. Please pray for their family.

Love, Tracy







December 4, 2006 4:48 PM

Donovan and Ellis are desperately in need of prayers at this time. The links are above. Also, if you can, go over to Kelly M.'s site. She had a fabulous experience!!

Katia is doing well today. We had school this morning and she did very well with Ms. Michelle. She is very very eager for Christmas. The picture at the top (with Jolly) is basically where Katia has spent most of her day.

The pictures from the decorating the park really didn't come out too well so I had slim pickings... sorry.

The main thing Katia is having issues with is still her eyes. No changes there and they really get bad at times, so bad, she just closes them and goes to sleep or tries to walk around with them closed. I was doing some work on the computer (which is right by Jolly) and I heard her telling Jolly about her eyes and how they get her upset...I felt so bad for her but I let her carry on and talk to Jolly. If you push a button on him, he sings so she plays with him quite a bit:)

Love, Tracy







December 3, 2006 3:30 PM

Hello:)

We just got back from going to the park! What a great day outside! I can't believe it is December. I know a lot of the country is having severe storms and snow but it is really nice here. Katia enjoys going to the park and being able to swing and go down the slides.

We also were able to get our Christmas Tree up today. I love the way it looks once it is up but it is a lot of work getting it unpacked and everything together. BUT, once it is up, I feel like leaving up all year! Beautiful!

I have new pictures which I will try to put on tonight or tomorrow of the park and Christmas tree. I just wanted to jump on here as I have actually not been on the computer yet today... can you believe that!

Lots of love, Tracy








December 1, 2006 9:26 PM

Hello:)

First, I want to wish MYRON a Happy Happy Birthday for tomorrow!! We have celebrated a LOT of birthdays together now (since 1986) and the one thing that I just LOVE about Myron is he calls his Mom on his birthday:)

Tonight here is a girls' night. Sharayah has 2 friends over to practice for a competition tomorrow and spend the night. Then there is Tatiana, Katia and me:) Myron is at 2 meetings.

The last few days have been good with Katia. I actually have not checked her heartrate because she looks good and seems to be feeling well. I don't like to bother her or treat her like she is sick if she seems fine. It is nice let her get her mind off things (other than taking all her meds). I think her medicines have just become such a part of her daily life, she doesn't really think of it as, "Oh, I have to take my medicines." She just does while she continues what she was doing.

I was talking to someone (can't think of who) the other day about how much the internet has changed things. Some things aren't so good but for the most part, the Internet can be a great source of information and reaching out to others. I never even knew Caringbridge existed until I started Katia's page. I can't imagine not checking on so many families each day now via Caringbridge, CarePages and other Blog sites. It makes the world not seem so big.

Then came along the Xanga and MySpace sites. I have heard plenty of negative things about both and I have talked myself silly with Sharayah and Tatiana about them. I think no matter what you do online, you just have to be safe and don't be naive. Anyway, I started My own MySpace Site some time back more so I could be familiar with it and allow Sharayah to do one as long as I knew what was going on with the site and such. I really hadn't done anything with mine other than create a password, add a logo and that was about it. Then, as I followed hers more, I thought, "There is a whole group of people that I could pass on some information about Bone Marrow/Cord and Blood Product Donation. Well, come to find out, there is already quite a big community of different Cancer Families, Transplant Families and just so many other sites of information already over there. So now, I have added another "To Do" thing on my daily lists:)

That's okay. It goes along with what I used to say, "One person tells 5 people and they tell 5 people and they tell 5 people..." Imagine the difference these numbers could make on the registry or by donating their newborn's umbilical cord. WOW! Imagine the difference that could be made for Oprah or Dr. Phil to do a show about this need?

But, just think, until April 2002, I didn't know ANYTHING about this need either...

Have a good weekend:)

Lots of love, Tracy


PS





Remember if you would like to add a banner (with included link) to your site, just click HERE. No need to upload the banner, the code comes directly from its own site. You just copy and paste the code where you want it to show up on your site. Then someone can just click the banner and go directly to the Katia Solomon Foundation site. There are a few different choices of banners.

Thanks:)


***************

November 30, 2006 5:30 PM

Hello:)

I have kind of stalled in updating today, but I should hop on here real quick while I have the chance.

Please keep Ellis and Donovan in your prayers. I can't believe Donovan has relapsed... again. Please pray for a miracle.

On a good side, Katia did have school today! Ms. Michelle and Katia have bounced back and forth with being sick so it was nearly a month without Ms. Michelle coming over. She was here for a little bit today and things went well. We talked about Katia and how she is doing with school and have some new ideas to work with on her.

Katia is eager but weary when it comes to school but she is mainly eager to read so we are plugging ahead with that. We have made her a word list that she can use to write her sentences from. She is better at reading than retaining the words to write from her head. I think reading is a fantastic way for her to really get moving quicker with school:)

Math is quite hard for Katia but it is for a lot of children. I don't want to pressure her and get her "turned off" from learning.

We are working on quite a bit of things with the Foundation right now and have a few upcoming events. I will post more as the information gets settled. Some local things would be a great way to meet some of you that keep up with Katia locally, or not so local.

How is Katia feeling? Much better today!! It seems the cold is gone and she is just left with a lingering cough. It seems better too though so hopefully it will be gone soon.

Also, I am always looking for ways to reach as many people as possible to spread the news about how to save lives via the bone marrow registry and donating blood products. One thing that is a big help is for anyone willing to post the Katia Solomon Foundation Banners to lead people over to the website. The code can be found by going to the link. There is no need to upload the image as the code feeds it directly from its own site.

Also, I am blogging some in MySpace to try to reach another set of individuals. The idea is to have as many people available on the Bone Marrow Registry and in the Umbilical Cord Donation Banks to give those seeking match the best possible chance.

Katia has another chance at life because of someone's donated umbilical cord:)


Lots of love, Tracy









November 29, 2006 9:30 PM

Please pray for Donovan and his family as they have found out he has relapsed, again following his second transplant. He is showing 25 percent leukemia in his blood. He is feeling okay but there is no real chance of a cure right now. Please keep them in your prayers, always pray for miracles and drop by their site to offer your prayers and encouragment.

Love, Tracy








November 29, 2006 8:20 AM

Good morning:)

I am on here pretty early today. I have some Internet Issues so they are coming out to work on things today (hopefully they fix it this time and not make matters worse...) so I wanted to get online, check on the Prayer Requests and do my morning routine with my coffee:)

First, Mark D. has been released and is HOME! That was great to read this morning:) Fantastic!!

Secondly, Katia hasn't gotten out of bed yet but from the sound of her right now, she is going to have a day of coughing and sneezing. Poor thing. The good thing is she isn't getting a fever and her eating and drinking seems to be holding up. She also hasn't had any nausea these last few days which had gone on everyday for a while. That is GREAT that she is feeling better in that way.

We have been working on school work, mainly sentences. She is getting pretty bummed out because she really isn't remembering any of her words. She can find them on a word list and write them correctly but without the word list, she can't. She gets really frustrated!!! She knows the word doesn't look right but she doesn't know how to make it look right. As far as reading, she is doing about the same in reading. She is able to sound things out but not recognize the words. Her thought is, "Why isn't this sticking in my head?" I don't know.

Her least favorite subject is math. She is still stuck on counting. She gets up to about 13 now. Recognizing numbers 1-9, she does very well on though:)

Her medical opinion on things? "Well, maybe I just have to be taller for things to stick..." Makes sense I guess but we are working on things. I at least want her to be able to read because reading brings so much joy to Sharayah, Tatiana and Myself (Myron too) and I want her to have that. I want her to be able to pick up a book and read it for herself. She WANTS to so bad!

We knew a lot of things could get a little "out of whack" due to her having brain radiation at the age of 3 so I have kind of prepared myself to work around things. I have a lot of different angles to use as far as teaching and Ms. Michelle is always good at doing the same thing, finding a new angle.

As far as Katia's verbal vocabulary? Well I wouldn't suggest getting into an argument with her or trying to change her opinion. She pretty well can come up with an answer and explination for everything. She has a "teenage" side to her which she has picked up from Sharayah and Tatiana and she stands her ground or she walks away mumbling under her breath how she knows she is right. We always thought Katia would end up the tallest out of all of our girls. We used to tell Sharayah and Tatiana (when Katia was a baby), "Don't pick on her, one day she is going to outgrow you and get you back." Well, in watching "Survivor", she has learned the way to keep on top of things is not just size but to OUTWIT, OUTLAST, and OUTPLAY! She can do that even at just 3 feet tall.

Katia is a true survivor:)

Love, Tracy










November 28, 2006 12:22 PM

I was so relieved to see an update on Ellis. I came in and checked his site around 3:30 this morning. There are more details on his page as well as in the Prayer Request area above.

Also, Emily L. is home and recovering from the hospital. The details are on her page as well.

My day was greatly improved by reading these two updates.

It seems Katia also is fighting a pretty bad cold so I can say it has done its rounds through our house. I really think getting outdoors is the best treatment for a cold. Breathing in the fresh air. Hopefully she will be up to going to the park this week but for now, she and her box of kleenex are resting on the sofa. She even has a BELL. Can you believe it? I don't have a bell... Her throat is MUCH better and even her face looks clearer, not so rashy. Her eyes? Still very very sore and an ongoing concern.

Last night Myron asked her what she wants for Christmas. I don't think she gave too much of an answer (she needed to think). Well, her idea is to go shopping without us saying, "No" to what she wants.

What do I want for Christmas? I want for the months of December and January to go smoothly, no hospital stays, no more colds and for Katia the girls to be able to have a good Christmas together. It is hard when I think about the fact that the girls will someday be on their own. I am all for independence. I just like the fact all three girls are so bonded and get along so well. I like to see them all happy together and am amazed that 2 teenagers (Sharayah and Tatiana) can still really have good fun with Katia and she can have so much fun with them.

Okay, now I am getting all sentimental:)

Love, Tracy








November 27, 2006 6:30 PM
2nd Update today...


Okay, now it seems I have a cold!! I never get colds... I guess I really can't say that anymore but I know I can get over this quickly:)

Also, a little bit of news about Christina G. from Florida. She had transplant a few months before Katia. Anyway, you can drop by their site with a big CONGRATULATIONS!! Christina and family have a new addition to the family so Christina and Ashley are now big sisters to a little brother:)

Katia said today that people made her cold go away because they prayed. Katia and I go over different prayer requests (of course I keep the details on an age appropriate level for her) and she prays for different people I mention to her. She is really cute about it because she goes off to pray by herself a lot of times. If she forgets a name, she comes back and ask and then goes off again. Katia has learned first hand about prayer and even if the answer to prayer isn't always what we think, God hears us.

Still no update on Ellis... and I am hoping to hear an update on Emily as well (fl/emilylester).

Love, Tracy

PS Also, for Denise in Winnipeg, thank you for posting about your Christmas weather. I love to hear about Christmas in other areas. I have mainly been around warm weather all my life so I can't imagine being surrounded by snow and such. It looks very pretty on TV but I am not so sure how I would handle it.






November 27, 2006 2:30 PM

Hello and good day:)

It's beginning to look a lot like Christmas... well kind of. At least the page is getting there with the background and song:)

We haven't put up the tree yet and the weather is warm and toasty here so, we have to stretch our imagination. We will get to the tree this weekend.

Katia is buzzing about Christmas though. There are plenty of advertisements on TV about this toy and that toy. I LOVE HER AGE REALLY!!! I like to see her get so happy. Every year we have a December stay at the hospital but this year, we are going to make sure there are no admits!! Our plan is to stay home and have hot tea and hot chocolate each night.

What does Katia want? Well that changes pretty often. I think it depends what channel is on TV. Right now, it is Christmas Music and she is wondering around the house playing with a Barbie Car and her stethescope? Katia has made one thing clear, Christmas surprises are TOYS, not clothes!!


I was looking back at pictures just since 2002 and it is amazing how much Sharayah and Tatiana have grown up since starting this CB site. We do take TONS of pictures around the house and everywhere we go and I have grouped them into slideshows and screen savers. Just watching them is like literally watching the girls grow up before our eyes!

Katia has only grown 3 inches since 2002 but when I look at her pictures, her face has changed so much, especially her little expressions. Her eyes say a lot about who she is and what she is thinking. One thing that hasn't changed is their smiles. They all keep those same smiles. I love taking pictures of the three of them together and I am so happy they are so closely bonded and I pray that will always be the case. I pray they will all grow old together and continue taking lots of pictures and making many many memories!!

Speaking of pictures, Myron's parents brought this picture when they recently visited. We think Myron is about 3 years old here... cute?



Katia just loves pictures of Myron and I younger. I don't think kids ever really see their parents has having been a child at one time.

I keep checking up on the Prayer Requests but I haven't seen any updates on Ellis so if someone hears anything, please email me (address at bottom of page) and let me know.

Love, Tracy










November 26, 2006 10:30 PM
2nd Update today...

I have to admit, this is my favorite time of day, everyone in bed:) How many are there with me on this being the favorite time of day?

Katia had a good day, mainly just laziness and watching some football and cooking shows (if that doesn't show the gender difference in our house).

I had to come check on our friends in the Prayer Requests before bedtime. I cna't start or end my day without doing so.

I also must say the weather here has been PERFECT!!! If there is a perfect, it is here, right now!

It makes living here during Hurricane Seasons all worth it! We have perfect weather, not too cold, not too hot, no wind, nice amount of sunshine, not too breezy but breezy enough:)

I promise to add pics of the zoo trip trip from yesterday tomorrow. From the sound of it, Ms. Michelle is not feeling well so we won't be having school tomorrow. Katia isn't all that heartbroken as she has been feeling a little "under the weather" too and some others in our household sound like THERAFLU commercials!! Seriously!

Tatiana is probably feeling the worse. Poor thing, she is always the first to get sick and the last to get well. Always has been. We had to leave the zoo early yesterday because she felt so bad. Katia feels so bad for her because Tatiana is the world's greatest playmate:)

Katia's throat is feeling better although she is still somewhat stuffy but not bad. She seems to have gotten over this without the visit to clinic:) That is always a good thing!

So, have a good night and please keep our little friends above in your prayers.

Love, Tracy








November 26, 2006 11:30 AM

Hello:)

Wow, no update yesterday! Actually we have been having some network issues through the house so I was working on that. It is my laptop that seems to be causing the majority of problems. It is pretty ancient but I really like it. It is a Toshiba and I can definitely say it has been through a LOT and I have never had to have any major repairs on it. It even has stickers on it that Katia stuck on throughout her long stay in the hospital. I had said I was going to give it to Sharayah when she heads off to college but she sees the trouble I have with it and she certainly doesn't want my laptop (Problems). She is smart:)

Anyway, so I am back today.

Yesterday, we took Katia back out to the zoo hoping to see some exhibits that were shut down the week before. Sharayah just wants to see the Tigers (which were shut down) and Tatiana has a really bad cold so we left after about an hour or so. Tatiana felt like fainting and she looked pretty close to doing so. She is much better today but still fighting a yucky cough and cold.

Katia is doing pretty well. She is back to having more energy although her heartrate is still staying up there in the 120's, 130's and sometimes 140's. We really think it is medicine related though. I agree with that. Her blood pressures are good so I think we will keep her on the BP medicines twice a day until we get rid of some of her meds.

She did get off a medicine the other day. I forgot to tell you. It is a blue pill she takes twice a day. I always figured it would be her FINAL pill but they stopped it due to kidney problems. It was her ACYCLOVIR. She is on too many meds which are toxic for her kidneys and this one seemed like one she could get rid of. So, she is off of that.

Please continue to pray for those above and I will try to update more on those later.

Also, please keep Emily L. in your prayers as she was admitted on Thanksgiving with high fevers and a rash.

Love, Tracy


*****

November 24, 2006 11:00 AM

Please keep Ellis in your prayers as he is again desperately clinging to life. This little one has been through so much. Please pray for his parents' strength and endurance.

I pray each of you had a nice Thanksgiving yesterday. I know many were away from their families or have faced the lost of family members this past year. I don't imagine things get easier as the years go on for those who have lost family over the past years. I can't imagine how it could really but I am thankful I have each of my family here with me. Sharayah, Tatiana and Katia helped with a small Thanksgiving meal:) I couldn't pass up cooking my own small turkey so we did:) It was nice to have the girls helping in the kitchen. As I type this, Sharayah is at her Princeton Interview so wish her luck. She was very nervous. I told her she has nothing to be nervous about, just to be herself.

Katia is sick today, feeling quite puny actually with a very sore throat. Last night, she thought she should go to clinic today to have her throat swabbed but today she has changed her mind... she doesn't know that clinic is closed anyway.

She is on 500 mg of Penicillin daily so she really has a small small risk of even getting strep throat. I am treating the symptoms as she doesn't want to eat or drink anything. Hopefully she will get better without needing a visit to clinic.

Thank you for your prayers. As you can see above, Richie passed away early yesterday morning. I felt so bad...

Also, Kelly M. and her family could use prayers. They aren't sure how long Kelly has with them but she isn't done fighting and they are trying a new Protocol to fight her very very aggressive cancer. This young lady is so inspirational to so many but I think she gives her family hope and strength each day.

There is a link above on Mark D's Prayer Request of a News Clip yesterday with him. It is a very nice interview about All Children's Hospital and some of their patients on Thanksgiving. He is part of that interview. He is having issues with GVHD right now but they are hopeful he can go home soon. Today has been 30 days in the hospital for him. His transplant was on November 1st.

I am sure many are out shopping today so be safe and have fun:)

Over the holidays we all want to give our family a good Christmas (which gets harder as kids get older!) but I always like to stress to my kids how important it is to never forget the reason we celebrate Christmas. It is easy to get swept up in the "Christmas Spirit" of shopping but Christmas is about celebrating the birth of Jesus and the reason behind His birth. The Spirit of Christmas should be in giving and not getting, of sharing and caring and showing the love that God showed to us, to others.

We live with a little miracle in our house everyday, Katia. But, each of us have many miracles in our life if we look around. We are also surrounded by many people in need. No matter how bad things have gotten in our lives, I always know there is someone going through much more. We have so much to be grateful for. "The most important things in life are not THINGS." I like that quote.

I have talked to Sharayah many times about the fact of being together on Christmas. I hope we will always be able to do that no matter where our children end up going to college or moving away to. I do have a feeling we will spend a LOT of time on the phone as it seems each decision she makes comes through my ear first, which is good. I am okay with that:)

Katia says she will never ever leave home. She is going to stay with us forever. She also says she is happy with her size and doesn't want to get bigger. We were going through some of her medical papers the other day and found out she has grown 3 1/2 inches since she was diagnosed at the age of 2 1/2 (4 1/2 years ago!). She is going to turn 7 in January. That doesn't bother her though. Hopefully when the steroids come to an end someday she will have a little growth spurt. She says that "big people have to work so much more than little people..." so she has this all planned out I guess.

I also am changing the song on the page for the Christmas holidays to "Miracle of Christmas" from Myron. Enjoy, I love this song:)

Lots of love, Tracy









November 22, 2006 1:40 PM





Hello and Happy Thanksgiving!! The girls are home from school today and for the next few days so that is nice. I keep thinking how different things will be next year as Sharayah ventures off to college. WOW!

Like I said in a previous update, each of our 3 girls is very different. Sharayah and Tatiana are definitely the added comedy to our house. They are very funny together and really don't argue much (at least I don't hear them). Sharayah is more the risk taker and Tatiana is more the one to observe and then try things. They have had those personality traits since DAY ONE. Katia is quite different however. I look at her and she still looks so much like a baby. She is 3'1" but she is so much like a teenager it is scary. People are shocked when they hear the way she speaks. I think most people who don't know her think she is 3 years old so when she starts talking, it turns heads. She doesn't get around people much other than the park but she draws people to her. She is like a little people magnet:) She also states her mind which isn't always good. I think to myself, "Who taught her to talk!" She has an explaination and reason for everything and can definitely argue her point. She has been around adults way too much!

As Thanksgiving approaches I am very thankful that we are home together!! I still am grateful for the little things I missed so much when we were in the hospital those 9 months straight. Do you remember me missing my dear coffee pot? Well, every morning I am grateful when I smell the coffee pot start up!! Do you remember when I talked about Katia's handprints on the sliding glass doors? Well I am very grateful they are there. I even leave them there sometimes. For those that know me, I am a cleaning freak so it isn't easy to leave things undone but I look at those handprints as a blessing, not smudges on the glass. Do you remember me talking about eating dinner as a family? I am still very grateful when we can all sit down together. That is another thing I know that will change when Sharayah goes to college. We all have our "seats" we sit in at the table and it is a nice time to sit and talk or just enjoy being together. We aren't like the Norman Rockwell family or anything but it is nice to be together:)

I love the picture at the top of the page. It is one of my favorite pictures over the last few months. I look at it and think, "Those are my three girls!" I am very proud of them. They are great daughters and they love Mommy very much! Yes, I am still Mommy to them:) I probably always will be. When they introduce me, they say, "This is my Mommy." They are very loving daughters. I am very lucky.

Of course, there is Myron! I am very thankful for Myron. Each day. He is very loving, always makes me feel good about myself and very respectful of my feelings and thoughts. I should have known that because he treats his Mom the same way. He is a very loving son and a very loving husband:) He is also the best Daddy for our girls. He is very thoughtful and always looks out for their best interest.

There are times when I say "No" to something the girls want to do and in this house, "No" means no! But, Myron will think it over and reason with me (I am not easy to reason with) and sometimes, my "No" can turn into a yes. My girls will stress that word, SOMETIMES!

All in all, I am very thankful for my family:)

I am also thankful for God and my faith in God. I don't know how I would face each day without my faith. I pray so much, for so many things and I KNOW He listens. Sometimes God answers silently or in a different way than we would want but I still know He is listening.

In following so many people through their journeys with cancer and other diseases, I see a lot of people that don't make it. I think, "Why?" Why some and not others? But, God knows why. I have to look forward to the day when I can meet some wonderful people in Heaven that I have never had the opportunity to personally meet. My heart has been touched by so many people and their lives. When someone passes, they are never forgotten. Their name is never forgotten and all the lives they touched will be forever touched.

Thank you! I am very thankful for you! Your prayers are so much a part of Katia's journey as well as our family's journey. Thank you:)

Have a Happy Thanksgiving!!!

Love, Tracy









November 21, 2006 7:15 PM
3rd Update... and last today I think

I just read the guestbook and saw the prayer request for the Gould Family. The husband died in a tragic accident. He and his wife were both EMTs so they saved lives daily. Please keep this family in your prayers.

Like I have said before, please feel free to post prayer requests in the guestbook. I know many people read through the entries as they check in and prayers are so important in so many different circumstances.

I wish I could reach out personally to each family and help them some how, either financially or with some great medical cure but, for the most part, I can offer my prayers and encouragement. Through the holidays we hope to be able to reach out to a few families and help in someway so if you would like to be a part of that, please email me (email is at the bottom of this site) and let me know.

Lots of love,

Tracy







November 21, 2006 3:15 PM
2nd Update today...

Please add a Silent Prayer Request to your prayers. Thank you, Tracy






November 21, 2006 9:40 AM
WBC 7.71
HGB 12.9
PLT 430
FK506 8.7
IGG 701

Hello and good morning:)

Katia had a good clinic appointment yesterday. She doesn't have to be seen again until December 3rd:) So we are going to TRY to catch up on some homework... she hasn't been doing too well with her homework and her DRIVE to get her school work done. She has been in lazy mode lately. That definitely goes along with her age group though. I used to teach 1st and 3rd grade before and FOCUS is not high on their list of priorities:)

My big thing with Katia that I really want her to learn right now is reading. She doesn't so much see how important or how exciting that can be yet but I love it when all of the sudden they realize they can read books they have only been looking at the pictures in. Sharayah learned to read around 3 years old and I remember her nose was forever in a book thereafter. I literally had to say, "Put down the book and watch some TV." Can you believe that? Tatiana learned to read around the age of 5. She wasn't as into it as Sharayah but I think she most enjoyed being able to do her computer games without having someone read her what the computer was said. She liked independence in that way but she also LOVED being the BABY right up until the day Katia was born! The she became "the middle child".

Katia is not willing to give up being the baby of the family and has made it quite clear, "NO MORE BABIES."

I look at the picture at the top of the page, the three of them next to eachother looking at the Manatees. They are each so different but yet so much alike. They are great sisters and they each play a very important role in our family. Sharayah was always more "the leader" when she was younger. Some people would say bossy but I will say she was the leader. She was meant to be the oldest sister. Tatiana always displayed quite a bit of patience and loyalty. Therefore, she was the perfect younger sister to Sharayah and was ready to be the bigger sister (and playmate) to Katia.

Katia, although she can be bossy definitely does not like to be alone, does not like to be in charge really and requires a lot of help was meant to be the youngest sister. It is amazing how God plans things out.

Many people have asked how I can follow so many Caringbridge kids (and by that I mean kids with/without CB Sites) and find the time to keep up with prayer requests and such. Well, I just was "meant to" do that I guess. I really don't have time on my hands but I do find the time to check on these other kids most of the time and my heart is so attached to each and every one I check on as well as their families. I feel like God prepared me for this journey in so many ways for so very long. I would have never planned to have a child facing cancer or did I ever know how many people struggle through this BUT I do know that God has prepared me for this and the best way I can face this with my own child is to reach out to others, provide encouragement, prayers and just as much information as possible. I believe knowledge is our best defense in anything. With knowledge, we can better face our fears and make decisions. I also believe everyone has the right to be known and that everyone we do know is meant to touch our lives in a very special way. Just like Katia has touched so many other lives, others have touched our lives in many many ways.

I am working on a little project and one of the things is famous quotes and quotes that offer hope, encouragement, power and strength. So, if you have a quote you would like to share with me, please leave it in the guestbook. I would love to read them. We all have things that get us through life or moments.

I like a few posted up on the website and I definitely have found them useful many times. One I read a very long time ago (when the Internet first came to life) was:

"The most important things in life are not THINGS."

That says so much and is so true.

We have faced many strains, many times of financial crisis and have had to make many decisions based on our finances. I know many many families that face this same problem daily. Although each month is a struggle for our family, I find the best way to deal with our problems is to help others through theirs. However we can help personally or via The Katia Solomon Foundation, really gives us the motivation to continue moving forward. I wake up everyday to a miracle, Katia. I thank God everyday for allowing her to be here and to be a part of our daily lives.

I know I have kind of jumped around in the update but that is the way my mind works sometimes, most of the time. I have a very active brain, strained sometimes but active:)

Lots of love, Tracy






November 19, 2006 8:30 PM
New pics on page and in photo album...

Hello.

Katia had a very nice yesterday. We went to the zoo. We live pretty close to Lowry Park Zoo. The last time we went was not long before she was diagnosed back in April 2002.

She really enjoyed seeing the animals yesterday and had fun riding on the carousel (spelling)...

She was kindly given a family annual pass so hopefully we can come and go quite a bit. Last time we bought annual passes was the visit prior to her being diagnosed. I remember her eye was quite swollen already so it must have been just before diagnosis and we never went back. She is much more into it now and they even have rides there she can go on. I am going to try to get annual ride passes because it is too much to buy tokens all the time, doesn't make sense really.

We were due to have school tomorrow but Katia needs to be seen at clinic and Ms. Michelle let me know that The Cold was going around her house so it is best not to expose Katia. I guess it all worked out for the best.

Katia's heart rate continues to remain in the 120's-130's today. She seems fine and happy though:) Her appetite is going down. Her WANTING food hasn't but what she actually eats is quite a bit less. Her eyes are hungrier than her belly.

I will update following clinic tomorrow with her counts. Please pray for our friends above as well as a few not listed above.

Like you, I check on those listed above many times each day and pray for them.

Lots of love, Tracy







November 18, 2006 12:13 PM

Hello:)

We had a very nice day yesterday. Myron's parents left early this morning to head back home. Although it was a short trip, we had a nice time with them.

It was a nice idea to have Thanksgiving with them even though we were early. We had the Board Members from The Katia Solomon Foundation here and enjoyed a nice lunch. We are very thankful to have the opportunity to help others and have shared some real blessings in doing so.

I have some new pictures to add to Estephany's Page so I will get that done as soon as I am finished here. I also have her update on how she is doing healthwise:) She is one of the many reasons the Foundation does what it does. If you haven't read Estephany's story, please take the time to read over her page. She has an amazing story.

Katia is doing well. Her heartrate is still increased but it doesn't seem to cause her discomfort. I sometimes wonder if it is increased due to pain she isn't telling me about. I know pain speeds up her heart and I know she doesn't always like to say when something is bothering her because she doesn't want to be taken in to clinic/hospital or she doesn't want to take the medicine? Just a thought.

Well, let me go update Estephany's site:)

Lots of love, Tracy








November 17, 2006 9:35 AM
HAPPY THANKSIGIVING!!!

Yes, you read right. It will Thanksgiving Day here today. We are going to have our meal while Myron's parents are here with a few close friends around. We don't get to have Thanksgiving with them, any of the grandparents really so TODAY we are going to have THANKSGIVING so we can have them with us. They leave first thing in the morning. It has been a quick trip for them.

I do have a prayer request concerning Katia. Her heart rate is staying in the 140's now instead of the 130's so this is increasing.

Please keep this in your prayers. She has also been having pain around her heart so there may be some water build up.

Thank you:)

Love, Tracy








November 16, 2006 6:18 PM

Hello:)

Just wanted to jump on here real quick to mention an add on above in the Prayer Requests. Not much to update on some of the others but definite prayers are needed for good changes, tests results and just encouragment.

Katia is doing decently well today. That is her description actually, "decently well". She says she is tired and just "pooped out" so she isn't to active. She does get around and play here and there. I know that because I pick up after her. I NEVER mind picking up or cleaning the sliding glass doors of her handprints. I am so thankful she is able to make those little marks around the house:) I remember when she couldn't.

It seems there is something I am forgetting. I haven't felt too well since yesterday so I am not totally myself. Maybe it is just age:)

Lots of love, Tracy


*********

November 15, 2006 2:00 PM

Hello and Good Day:)

Today has been a good day. Busy but good. Katia was supposed to do some school work today but she just isn't feeling that well. She is having a lot of nausea but not throwing up. She mainly wakes up with it and in the evening she is back to herself. But, she is doing okay. She has been up and about a little and is laying back down now.

Last night, Sharayah and I had a "fender bender" but it didn't even bend the fender! I had gone to pick up Sharayah from school. She is having to stay late for Musical Theatre right now. As we stopped to make a turn out onto another street, we got hit from behind. HARD! I thought, "Oh no..." But, I got out and the young girl driving got out of her car and I think we were both shocked to see no real damage right away. We decided to pull of the street, into a parking lot. She was 16 so she called her Mom to come out. I felt so bad for her because she just felt so bad and it was her first accident. I haven't been in any car accidents for years! It scared me but I guess any car accident would. Sharayah was fine, I was fine and the other driver was fine.

I told the girl this was a "good" first accident as it will show her what could happen but nobody was hurt and the cars were okay. She had a new Toyota and I have an older Nissan Maxima. I have to say, both cars held up very well to such a hard hit. I don't think it would have been the same if she had hit me on the side. That seems to just make cars crunch.

I was grateful Katia wasn't with me. I would have been quite worried about her back, neck and hips with that sudden hit. She was home with Myron.

Myron came out and met me. My car wouldn't start. It seem the hit caused the battery cable to losen or something so he messed around with it, jumped the car and it was fine. I am still going to get it looked over good though. I really depend on that car to go back and forth to clinic and each way is about 35 miles or so.

But, I have to thank God for taking care of everyone involved:)

Lots of love, Tracy









November 14, 2006 9:40 AM

Hello:)

Sorry no update yesterday. Sharayah is OFFICIALLY an 18 year old!! I can't believe it but yes, she is:)

Katia drew her a birthday card and spent quite a bit of time adding little details on the 12th but all yesterday, Katia spent sleeping basically until around 4:00 PM. She just felt lousy. BUT, once she was up, she was up and doing okay. I have no clue what was really going on with her. She woke up very itchy and feeling bad and just wanted to stay in bed. I still get her up and dressed and pills along with breakfast but she really just wanted to go back to bed. Around 1PM, I decided to transfer her, her blankie, brown shirt out to the living room. But, she just fell back asleep.

She seems fine today:)

Right now, she is standing next to me at my desk drawing and talking to herself.

Thank you for all your birthday messages to Sharayah. She did read them all in the evening:) That was fantastic!

Please keep Baby Ellis in your prayers as he is in very critical condition right now. It was thought he wouldn't make it through the night but HE DID:) "As long as there is life, there is hope." So, please keep him and all of his family in your prayers. Drop by and offer some encouragment on the wings of a ladybug:)

Lots of love, Tracy









November 12, 2006 6:14 PM

First, I want to wish my lovely daughter Sharayah a VERY HAPPY 18TH BIRTHDAY for tomorrow!! I know I won't get back on here until later in the day tomorrow so HAPPY BIRTHDAY SWEETIE!!!!

What is really neat is Myron's mom was with me when Sharayah was delivered. Myron, his Mom, a Midwife and myself. Well, guess who is about to arrive at the house!!! Myron's parents! They are going to be here until the end of the week so they will be here to celebrate Sharayah's birthday with us. She was the first Grand DAUGHTER, second Grand Child for them and she was the first grandchild for my parents.

It will be nice to have them here which should be in less than 5 minutes:)

Katia is doing pretty well. Heart rate is still high and she is nauseated for some reason but Zofran helps the Nausea. The heart rate is a bit of a concern. Her blood pressure is staying down as long as we do the Norvasc twice a day instead of once.

She did ride her little bike for a bit today and she did a very good job. She is getting faster. She has a little tricycle and she was about to run me over by going so fast while I was trying to take her picture.

Yesterday she got to go out on a boat for a bit with some of our friends. We took some great pictures but I LOST them by an accidental delete. I am still so upset over that. It was her first boat ride and he let her drive!! She was all smiles and so happy... I wanted to share the pictures but I can't.

Well, it is time for them to arrive:)

Love, Tracy


*****

November 11, 2006 10:44 PM
HAPPY VETERANS DAY

What a start to the morning! I click on the site (as I do each morning) to check on Prayer Request) and more than half of Katia's Site was GONE!!!

So, I have tried to piece things back together which is why the prayer requests are so short and some are missing. I am so sorry. I will try to get things back to the way they were over the next few days.

Although I had the page "backed up", I haven't backed it up for a while so everything was pretty well outdated...

I have learned a VERY VALUABLE LESSON.

The first link I wanted to check this morning was Baby Jackson and my heart broke as I found out he became an Angel at 2:30 this morning. Plese pray for his family. I had really hoped they could get him stable and do another liver transplant on him.

Thank you so much for taking the time to check in and hopefully the page will be back very soon.

Love, Tracy







November 9, 2006 2:15 PM


Hello:)

We just came back from the park! I know some of you are having very cold or rainy weather (or both) but today is beautiful here and we just had to make the most of it. We took lunch out to the park, ate, spent some time on the swings, in the sandbox, and Katia went up and down the slides. She even saw a little girl out there she had seen another time we visited the park:)

Now she is squeaky clean and drinking some ice water. She is going to make a handpuppet out of an envelope and surprise me with it.

I do have to share a joke she came up with while swinging at the park.

"What did the Ketchup say to the Mustard?"

Give up?

"I am going to catch up with you!"

It made me laugh:)

Then she just started coming up with joke after joke but this was the best:)

She had school today with Ms. Michelle and did very well. Although she is having a hard time when some things, she always enjoys her time with Ms. Michelle.

Lots of love, Tracy

PS I wanted to add something about today. We had been listening to something or I read something about "Life" and how we each need to make ourselves RELAX and enjoy the little things. One of the examples was driving with the windows down in your car and let the wind blow through. In Florida, it is always hot so we just don't do that, I don't at least. Anyway, today we DID!! Katia loved it. You would think she was on a rollercoaster. I told her to put her hand in the wind and watch it go up and down by the force of the wind. She was just full of happy giggles.

In the last 4 1/2 years we have seen many people beat cancer and many not. One thing I have learned throughout all of this is to enjoy the simple things. Make memories by watching your kids do things when they don't know you are watching. This was something I hadn't though of though. So, next time your driving, let the windows down and enjoy the breeze (maybe up North isn't such a good time). If you have something like that to share, please let me know and others can read it as well so we can all enjoy the "simple things in life."











November 8, 2006 11:30 AM

Good morning. First, I want to thank you for your prayers for Katia's BP which are now back in normal range since increasing her BP medicine to twice a day instead of once a day, however her heart rate is still staying in the 120's. She is having a few other issues that concern me but I will update on that later after I speak to her doctors. But, thank you for your prayers. VERY MUCH!

Also, there was a prayer request for Zoe in the guestbook. Please never hesitate to leave prayer requests in there. I hope as you check the site, you also go read those guestbook entries (and say Hello) so you will have a chance to see any prayer requests listed there. I think prayers are VERY important and work in so many different ways, not always in the way we hope for but in some way.

For now, Katia is in bed, watching a dinosaur movie. She isn't feeling well but I am thankful for her Blood Pressure to be down.

Lots of love, Tracy









November 7, 2006 8:35 AM
VOTING DAY



NEW PRAYER REQUESTS ADDED ABOVE
Good morning:)

I wanted to jump on here before Katia wakes up. She has started taking over my computer for larger amounts of time. She has a little MAC but it can't go online. So... she takes over mine.

Her two favorite places?

Her own Playpage that was created for her and Playhouse Disney. I am amazed how kids really can catch on to computer usage.

Katia and Sharayah got a little iMAC when Tatiana was just 3 years old. They use JumpStart Programs which is what Katia uses on hers, same exact disc. The idea behind it is just let the child learn, don't instruct them. Well, I found that difficult but when a 3 year old Tatiana was able to use all the programs, work the mouse and even the keyboard some, I decided to let the Jump Start Program do its job and leave them alone. It was great!! Katia has a much shorter attention span than Tatiana did at 3 years old but she still does VERY WELL on those programs!! There is a report card parents can view to see what parts of the program the child is using and how well they do in each section:) I have to have SOME control!!

Okay, the reason I got on here mainly is to update on Katia. She is still feeling quite puny (although she isn't awake today yet) but a concern has been her blood pressure. It should be around 120/80. She takes Norvasc each day to control her blood pressure. For the last two days, it is remaining around 138/87 and even up to 161/93 (that was the highest yet) so we have doubled her blood pressure medicine as of last night. Her heart rate is staying around 126 which makes me keep thinking she is about to spike a fever but she doesn't. Mind you, she is running around, she is pretty well parked these last few days on the sofa or in a chair. So this is a "resting rate". Her normal heart rate is in the 60's so that is more than doubled.

We did increase the Prograf (FK506) "Wonder Woman" is what we call it. We just went up a pinch but that can cause hypertension. She has been at this dose, even higher, before so not really sure. Her kidney levels have been good lately.

So, we will see.

Last night at bedtime, she gets tucked in. She has her brown shirt, all her "must have" stuffed animals and her blanket. I HAVE to remember to kiss her or that causes a panic. Well, she recently took this little stuffed star (like the one on Care Bears) back under her wing and it goes around with her all day. So she walks around here with blanket, brown shirt and now this star. She ended up in bed without the star and I had already closed the door. I was checking on some prayer request and I hear this SCREAM that sounds like something from a Horror Movie. I run in there (mind you we are having blood pressure issues so I don't need her hysterical) and the whole thing was she didn't have the star. I used to always think when Sharayah and Tatiana were little, "When does that screaming or burst of tears stop?" Katia continues to have these melt downs (I blame them on steroids) and she is about to be 7. She got her star and she is sound to sleep right now with that and the brown shirt. The arms of the brown shirt are wrapped around her like a big hug!

So, that is all this morning:) Enough, right? This is BEFORE I have had my coffee:)

Love, Tracy







November 6, 2006 2:30 PM

Good day:)

I have a prayer request, actually for Katia. She seems to be coming down with a pretty yucky cold along with feeling nausea (no throwing up though) and has a bad headache. I think the headache is sinus related as she seems puffy looking in her sinuses. Her blood pressure has been up most of the day and last evening. I thought she was going to end up with a fever last night because her heart rate was pretty high but she didn't:)

So, today there was no school and she is pretty well parked on the sofa watching Christmas DVDs.

I am hoping she doesn't have a virus, just cold symptoms. That is kind of what it seems like to me, but if she gets worse, I will have to call in and maybe take her in for a nose swab...

She is pretty puffy all the way around now from head to toe which is already kind of hard on her body, especially her bones so she just may be stressed and not feeling too well. Anyway, no school work today, I promised.

Thanks so much,

Love, Tracy



************

November 5, 2006 5:00 PM

Hello:)

As you can see above, Katia got out to a football game yesterday and Tampa Stadium. She has never been so it was a really exciting thing for her! She loved the music and dancing, not too big on people yelling and cheering. She had a really great time, all of us did. Living in Tampa, I haven't been to the new stadium ever and the last time I went to any of the football games was back when I was 16, LONG LONG AGO.

One of our friends had a suite there so it was a perfect opportunity.

We are having a pretty quiet day around here today. I can't believe how exhausted I was last night. It was around 7:30 PM and I couldn't keep my eyes open. Normally I can't sleep! We all decided to just go to bed early and I think we were all better for it today. Sharayah started the day at 7:15 for SAT testing so it was a long day for all of us. But, FUN!

Katia has school in the morning. She is doing VERY well with her reading. I am very surprised by how she is really improving. She is really retaining the idea of sounding out words. She doesn't remember the words too much by site but she is really good at sounding them out. She received some new books in the mail and she is really liking them:)

That is all for now. Please keep those in the Prayer Request section in your prayers. I also have a few silent prayer request for you.

Katia says heeelll000000

(She typed that)

Lots of love, Tracy









November 3, 2006 4:00 PM
WBC 5.23
HGB 15.1
PLT 361
FK506 8.5


Hello, we are home. Long day but well worth it. IVIG is a good boost to Katia's immune system. So, thank you to all those that donated their antibodies to make this IVIG transfusion possible!

Although she took stuff with her, she was BORED SILLY! She took a small nap but woke up on the "grumpy side". So, it took her a bit to get back on the "happy side" but she got there.

She decided to try to fill out those order forms in magazines for a subscription. She actually did pretty well with the part of her name and even birthday. The rest she just filled out with jibber jabber:)

Hopefully we will have a good quiet weekend. We stayed a little after clinic just to make sure there were no reactions to the transfusions and she usually does quite well with these. I can't count how many she has had but I am thankful she can get them.

Now, I should jump in and kind of catch up on things and finish up dinner. I am STARVING!!

Love, Tracy

PS Have a good weekend. I will update prayer requests as things change.









November 2, 2006 12:55 PM

Katia had class this morning with Ms. Michelle and did very well. Tomorrow we will go to clinic for a day of IVIG. Everytime we get this I have to put a message on here to ask for people to remember the importance of donating blood and blood products. I know so many of you do on a regular basis and I thank you:) IVIG is in short supply as it requires so many donors to make each dose of antibodies but these transfusions are needed by Katia every 4 to 6 weeks and so many others. It helps them to have some immunity until their system is able to make their own. So, please pass this information on to others. THANK YOU:)

Katia said Halloween should be more often. She waited and waited for it to get here and then it was done!! I was glad she was able to Trick or Treat a bit. She really had a good time. Her next big holiday she is looking forward to is THANKSGIVING:) She loves Turkey and Stuffing!!!

Always something to look forward to.

Sharayah will be turning 18 years old (yes, I am old enough...) on the 13th of this month. I can't believe it!!! They grow up so fast!! She is doing all the college applications and such right now. She has done very good with her grades in school, her volunteer hours and just a lot of AP classes so she is hoping for full scholarships. She is very on top of her college choices and applications. We eagerly await the answers. Please keep this in your prayers. Sharayah has planned on college since about the 5th grade. Her first hope is Princeton. She has a very good chance. She has about 3 other applications out there just in case. Her goal is Psychology.

Katia's belly is beginning to bother her quite a bit. She is currently positive for C-Diff but we are really stumped on what treatment to use as she has gone through so many and it always comes back. Infectious Disease is working on what to put her on next. We are running out of options but thankfully she is not in as much pain as she has been in with past flare ups.

I have updated a few of the prayer requests above. I have a few more to add up there also.

Love, Tracy









November 1, 2006 10:30 AM

I will be back later today with a further update but I want to ask you to keep Zoe G., Blake H. and Kelly M. in your prayers. They are listed in the Prayer Request Section. Both are in desperate need of prayers Also, Mark D. will be having his bone marrow transplant today at ACH so please keep him in your prayers that all goes well and his new cells will GROW GROW GROW.


Love, Tracy



*****************

October 31, 2006 4:15 PM
2nd Update today... See pics below

I first want to update on Ms. Michelle's (Katia's teacher) sister, Sharon. She had open heart surgery earlier today to repair a valve. She was doing well and should remain in ICU 24-48 hours. Please continue to pray for her and her entire family. They are thankful for your prayers.

I also have two silent prayer requests to ask of you. Thank you.

Katia is getting in costume for tonight. She decided on Ariel (not that it has to be her final choice, she is a girl...we can always change our minds!) She is eager to hand out candy and of course eat candy.

Well, I should get dinner started. This time of day, time flies by and I lose track of time.

Lots of love and have a SAFE and HAPPY Halloween!!

Love, Tracy







October 31, 2006 10:30 AM
More pics added below 12:30 AM

Happy Halloween:)

You get to go along Halloween Day with us through costume changes. I will keep adding to this as she goes through costumes. The good thing about not growing? You never outgrow anything...

Enter, the model of the day...


Little Witch


Ariel, Little Mermaid


Princess Belle


Tinker Bell (in purple)


The Brown Shirt in Costume

The Ladybug (of course)


Minnie Mouse!

Ballerina


DADDY at work!




Be back with more in a bit....

Love, Tracy






October 30, 2006 11:45 AM

Prayer Request:


Katia's teacher was here this morning for class. Her sister, Sharon will be having open heart surgery in the morning to either fix or replace a valve. So, please keep Sharon in your prayers tomorrow.



Katia is doing well today. She enjoyed school and is VERY MUCH looking forward to tomorrow. Her main thing is dressing up. I told her she can dress up today but she wants to wait until tomorrow. She likes candy but she knows we have candy here to hand out so I am sure she will be taking first dibs on the candy in the bowl. Last year she helped hand out some candy at the door but someone scared her so she doesn't want to do it this year. So, I guess that will be up to Sharayah and Tatiana. Katia can handle the little kids in the cute costumes, no scary ones. I think the one that scared her last year was dressed up like someone in the movie, "Scream" if I am correct.

We went up on Katia's FK506 medicine (immune supressing drug) and we are keeping the steroids the same right now. Katia has clinic on Friday for an IVIG transfusion. I think we will take along some school work and a game:)

Love, Tracy

PS It seems Ms. Katia wants to head back out to the Park today so we may try to get out there for a little bit. She is a little on the PINK Side today so we will see.












October 29, 2006 8:00 PM

Hello and good evening:)

I wanted to drop on here and share something good with you. Although a boring day, Katia had a good day:) We enjoy those boring and good days!! I certainly appreciate them.

She does seem to be coming down with or getting over a cold. Hopefully it is going away. I really do think a sinus scan is in her very near future though but we will see.

Her little "mystery spot" on her belly is getting bigger but they usually do that and then scale over and go away. At least she just has the one right now. She calls them mystery spots too.

I remember when Tatiana got Chicken Pox. I called Myron at work. Tatiana was about 5 and I told Myron she had "these two spots..." (what I didn't know then). Anyway, before I got off the phone, they were just multiplying. It took a few phone calls and counting those dots and then we both said, "Chicken Pox!"

Sharayah and I had Chicken Pox when Sharayah was just one year old. Sharayah had one dot, no fever and I had two dots, no fever. I was worried one of Tatiana's little spots would get us sick but it never did. Katia hasn't had the Chicken Pox. Oh, the fun of parenting:)

So, I hope each of you had a nice weekend. I know not everyone had the perfect weather we had but hopefully it wasn't too "nippy" for you. We were talking tonight about how this seems to have been a good hurricane season for us. We are nearing the end of the season and have had no serious storms!! Just good and crispy weather right now.

Love, Tracy







October 28, 2006 1:00 PM


WBC 4.16
HGB 14.5
PLT 362
Creatinine 0.4
IGG 547
FK506 7.6



Hello:)

Well, I didn't get the lab numbers back till later in the night so I decided to wait to add the pics and numbers today. The pictures at the top were from yesterday. She wore the Witch costume to clinic:) She just loves that costume!!!

Ariel was her first choice though as she really wanted that long red wig.

I am sure we will have multiple costume changes on Halloween though like last year.

Katia is testing postitive again for C-Diff and it has just been close to a month since she finished the last round of the vanco so we are going to figure out another treatment for her. The vanco and flagyl are no longer working with her.

Another thing we did discuss is the fact her FK506 level is continuing to drop. We wanted it to stay above 10, closer to 13 maybe. So we are going to go up on the dose. Her skin is a little flared up right now and her eyes and mouth are worsening. We don't want to go back up on the steroids and the FK506 (we call it "Wonder Woman") seems to do more for her than the Steroids anyway. My hope is to get her off steroids over the next year totally. We will probably try to go down 1mg each month. She is on 12mg a day right now. Somehow, her body doesn't respond well to changes but she has been on steroids long enough and it is damaging her bones more and more. The hair cut is out for a while as she wants to wait until she isn't so puffy looking. We had thought of that also but she brought up the fact yesterday when she had on the Ariel wig.

The headaches? Still there and if it continues, we will do another sinus scan as it is probably sinus blockage again. It is in the front of her head and she does have a slightly runny nose. She is known for getting her sinuses totally plugged up but when they are really packed, her hearing gets worse and that seems fine right now.

Let's see, anything else? We just got back from another trip to the park. I have some videos and pictures I will work on. No promises on getting them up today but maybe. I just lack energy right now so I move a bit slower than normal.

Katia says hello and she says she is confused as to what costume is better? The Ariel costume is more comfortable but the hair is itchy. The hat for the Witch costume is comfy but the outfit is itchy, even with a long t-shirt under it. Oh, the confusion:)

Well, that is about it for now. I will work on the pictures.

Please keep those "Silent Prayer Request" in your prayers.

Love, Tracy


*******

October 26, 2006 4:30 PM

Hello:)

Just wanted to drop in here and update on a few things. I have a silent prayer request to ask for someone and also a prayer request for Katia. She has had a headache over the last few days that won't go away. It doesn't stop her from moving around but she is bothered by it as well as her eyes. Today she had school and her eyes were doing quite well actually. She even pointed it out that today was better. It is nice that she is able to appreciate when things improve.

We have clinic tomorrow so I will update in the afternoon.

Let me add a couple pictures on here from the park yesterday:)

Lots of love, Tracy








October 25, 2006 8:45 PM

Well, I have some new pictures to add but I will do so tomorrow. We had a nice day to day, Katia and I. We went out to a park. It was perfect weather!!!!

Katia learned to swing all by herself, played on the slides, met a couple sweet kids, and enjoyed the wind in her hair, literally!

I was pretty hesitant to go out there because she wasn't feeling too well this morning, had a headache. But, she finished her school work and I told her, "Let's go." She was very happy. She had a very good time.

I must say it is a small world. I met someone who followed Jacob Duckworth's site and knows his father. We talked for a while and I was really glad we had made it out there.

Katia ended up wanting to leave due to a headache and feeling like she wanted to "puke" (that is the way she announced it!) So, we left. We had been there for much longer than I thought we would be but I was having a very nice time seeing her have a good time. I told her we would go back and she is happy. Again, the weather was perfect!!!

I have felt decent most of the day. I am waiting to hear back on some referrals of doctors and trust me, I will go:) I am very willing to take anyone to the doctor but I personally don't like going to one... But I will:)

Katia has one of those "Mystery Spots" again, this one is on her belly. I took a picture today as I try to keep up with them and maybe what else is going on around the same time. Usually one brings more friends and she goes through it for a while. They have been biopsied but no definite answers so it is just something we watch and make note of.

Eyes? Well, they hurt to put it plainly. I am eager to see what her counts are on Friday. Her lips are always red when her counts go high (hemoglobin, etc.) and they are bright red today. I remember when paleness was a problem. Not now. She has rosy cheeks, red eyes and bright red lips.

I have promised that she can wear her witch outfit to clinic on Friday so I will get a picture of her and post it in the afternoon after clinic. She is going to be adorable if she can still squeeze into it. We will make it work:)

She is VERY EAGER for Halloween. It is all about dressing up for her so I am sure she will change over and over.

Thanks for checking in.

I will update the Prayer Requests in the morning. I am pretty wiped out right now and I am backspacing too much because of so many typos.

Lots of love, Tracy









October 24, 2006 9:50 PM

I am sorry....

I say that a lot these days. First, I must ask you keep the family of Stephanie Jordan in your prayers. She passed away after a VERY long battle with cancer. I feel so bad for her family at this time. She was an awesome young lady!

I also want to ask your continued prayers for Katia's eyes. Really, we are kind of at a dead end so we are seeking another eye doctor's opinion. The problem is her case is so rare when you put everything together. They are REALLY bothering her right now. I am not sure about school this coming Thursday unless there is a big improvement. We have clinic on Friday so we can discuss more then.

On top of that, I continue to not feel well. I have asked for some referrals to doctors as I really don't like "spinning my wheels" trying out new doctors and have recently lost my old doctor as he has changed his practice to more natural medicines and weight loss. So...

Just keep that in your prayers. I have been having issues with high blood pressure, low blood pressure, low blood sugar, cold sweats, clamminess, fatigue, bruising, dizziness, etc. I can't afford to fall apart so I am taking it seriously, don't worry:)

Katia had a pretty low key day. Actually our home network was down all day due to some network malfunction so I am up still trying to pull it all back together. It is amazing how we have grown to rely on technology! WOW!

We had a Katia Solomon Foundation Board Meeting today which is always a boost in the right direction. As long as we can be moving forward with education, awareness and funds to help others, I know we are moving in the right direction.

Thank you for your prayers:)

I haven't even checked the guestbook or other sites today (I feel lost on that) so I will catch up tomorrow. Thank you for your email updates on some of the children on the prayer requests. I really do appreciate when you keep me informed so I know what is going on. I pray all day for different people.

Love, Tracy









October 22, 2006 6:00 PM

Katia is feeling better today:) She did some homework and has just been kind of doing things around the house. Her eyes are her biggest problem right now. Hopefully we can get her some relief. I do appreciate the emails of ideas. I read them, each one. We have tried many things but some ideas are totally new to me so I appreciate the input.

I will try to get some new pics on the site, maybe of Katia trying on costumes:) She is quite puffy looking right now. I got her a witch costume which fit good but now it is pretty tight. It is adorable though. She is a cute witch. Her other thing is an Ariel Costume with the long red hair! That is ADORABLE!!!!

I will see if she will pose for some pictures so I can get them on the site. The last few pictures of her, she has her eyes squeezed shut since they hurt so I have left her alone for a while.

Hope you have each had a good weekend.

I have a few prayer requests to add here, just to mention. One is for Paul. He is the brother of one of the faithful people that keep up with and pray for Katia. He had a Disc in his neck repaired and has been recovering from that. He started having issue with his leg again and went to the doctors he had a bulging dis in his back but they
were convinced that it wasn't what was causing all his problems. Anyway they did all the nerve tests again and others and found out it was not an isue, They feel it might be ALS and he has to see a specialist on Oct. 25th. We need the heavens flooded with prayers right now. He just turned 52.

Another I had mentioned earlier was Marc. He has been having some mental issues and is hopefully beginning some medicine that will help him. It has been a real struggle as he also is developmentally challenged. He is 18, 5'10" and about 230 pounds but developmentally around a 7 year old. So, please keep Marc in your prayers. This is very scary for him.

Katia has school in the morning with Ms. Michelle. She really looks forward to school but not math, at all. Basically I cover reading, spelling and writing and I leave most of the math up to Michelle. I do work with Katia on her number words, recognizing numbers and counting though. She is up to 17 which is great progress! She is eager to please but she gets frusterated pretty easily. We can blame the steroids for that I guess. She is really getting good at sounding out simple words so she enjoys being able to read new things.

Thanks for checking in:)

Love, Tracy




********

October 21, 2006 10:13 PM

Hello, twice in one day again:)

Yeh, I am feeling better, can't you tell?

Anyway, I want to ask your prayers for Katia actually. She is just really having issues with her eyes and just wants to sleep it away or she just gets upset. Her other issue is she has put on about 5 pounds in the last 10 days which is quite hard on her hips and back. I am not sure why she is gaining weight as we are going down on the steroids every few weeks. She was on 30mg per day when we went all the way back up and we are dropping 1 mg every couple to few weeks. She is now down to 12mg each day. She should be starting to thin out and not be so puffy but she isn't. Her appetite has dropped off quite a bit though. I am thinking maybe she is retaining water but the fact is her hips are pretty sensitive to the extra weight due to the osteoporosis. She is trying to stay active but they bother her as well as her back.

So, I just wanted to ask for prayers on that issue. Other than that, Katia seems to be doing well. She goes back to clinic on Friday but we may try to move that up or work in an eye appointment first (which she is mad about) so we can figure out some relief for her eyes. The fact is there is GVHD affecting her corneas so they are just always getting scratched and irritated. She uses eye ointments, drops and eye mask but they aren't working. Her skin looks a bit clearer these days but her eyes are worse?

Thank you for your prayers. We plan to have a quiet day tomorrow:)

Lots of love, Tracy








October 21, 2006 4:00 PM

Hello:)

I was emailed about a 17 year old girl, Chassity who has been sent home on Hospice. I wanted to add the prayer request above.

Katia is having a good day. She is currently playing right behind me and singing to herself. She has the cutest little voice. She has gained about 2 pounds in the last 2 days. That is about 5 pounds since her last appointment. She is pretty puffy and it is bothering her walking around right now. She doesn't complain much though but it is bothering her hips. Hopefully the osteoporosis there is improving with the Fosomax some but that is a lot of weight for her bones.

She is very much looking forward to Halloween. She is going to be a Witch part of the day and Ariel, the Little Mermaid for the other part of the day. She wants us to get her the "Little Mermaid" Movie, the new Edition that was just released, "Over the Hedge", and the movie, "Monster House." She is already making Christmas and Birthday Lists. You got to love the advertisements on the different children's TV Channels.

I like that she gets excited about the Holidays. Sharayah and Tatiana look forward to Holidays but there is nothing like a 6, nearly 7 year old. She gets bubbling happy:) Her other favorite holiday is Thanksgiving!

You can see she looks forward to November, December and January. I can't believe she will soon be 7:) She is our little miracle!!

Lots of love, Tracy









October 20, 2006 8:45 PM


Twice in one day (I am back!)

I just wanted to drop in and update and add some prayer requests. I still have some more to work on but I wanted to get these on here. Thank you so very much for following these links and keeping each of these other children in your prayers.

Katia is laying on my shoulder right now and says to type HELLO. She was looking at the pictures on the website earlier and we all agree she was a very cute little baby. I told her she will always be Mommy's Baby:)

We are working on plans of her first haircut. She is pretty excited but we haven't quite decided on the style yet. I am sure she will look cute though (sorry, PRETTY).

Well, we are going to go now. Somebody is nearing her bedtime and still has her meds to take. Out of all these years, she has only complained about taking all of these medicines a few times. When I pour up her pills in her little cup and hand them to her, I remember wondering after transplant if she would be able to take pills. I must say, she does a very good job and can take pills quicker than anyone I know. She knows they keep her healthy and home so she doesn't complain.

Love, Tracy









October 20, 2006 4:00 PM

Good day:)

Another weekend has arrived. I look forward to weekends.

Katia's eyes are still bothering her quite a bit. It almost looks like someone with pinkeye and a really bad eye lid rash. Poor thing. She did do some homework today as we have agreed to take the weekends off from homework. She did a few worksheets and the whole time she had her hand over her eyes like she is blocking out sunlight but there are no lights really on. I think she just figures that is the way it is. She really doesn't complain. She just deals with it. To us, we know it isn't supposed to be that way and it bothers us.

Her face is pretty clear looking around her cheeks. She hasn't been to "pink" lately. She has put on about 2.2 more pounds since our last clinic visit even though we went down 1mg per day on the steroids. One very good thing is she has been much more active though. She is playing with her toys more. For the longest time, she just didn't want to do anything unless it was to sit down and play with something but now she is more going around the house playing with things. Now she needs to learn to put her things away:)

I have been having some pretty rough days just feeling bad. I do have problems with my sugar dropping low, never really goes high. Sometimes it seems to drop low more often than others. I also have pretty low blood pressure that gets too low sometimes. I am not really good at "taking it easy" but I have been trying. I am a "routine" kind of person so when my routine is changed, it gets me uneasy. As long as I can get certain things done daily, I can relax more. When I don't feel good, it bothers me that I can't do those things. Myron, Sharayah and Tatiana are all good at doing those things but I like to do them myself. Like one is to vacume:) I like to do that myself. It is Sharayah's responsibility on the weekends though. I also like to be able to keep the kitchen and bathrooms cleaned and things tidied up. It is like a stress reliever to me.

My kids call it O.C.D but I found a nicer word, diligence!! I am diligent about keeping certain things done.

So, thank you for your prayers. Hopefully I can get back to feeling myself again soon. Katia doesn't have to go to clinic until next week. She has a cold right now and she is praying it will pass before she goes to clinic so they don't stick a swab up her nose.

Please keep those above in your prayers. I have a few more to add but I need some more details on some of them.

Lots of love,

Tracy

PS Katia is able to count up to 17!!!!!








October 18, 2006 9:00 PM

Later and later it seems....

I need to ask you to pray for 2 silent prayer request and a boy named Evan. I will let you know more on those when I can. They just really need your prayers.

I am sorry if I have seemed kind of out of touch. I have been actually. For a few different reasons. I don't know. Since the passing of sweet Bailee, Christi and Jake, I just kind of felt a little beside myself. Then I feel bad for feeling that way because I look at Katia and I know how lucky we are right now! I am trying to pull myself back into a routine again. I hadn't felt too good but I think it is all kind of connected. Today, we stayed pretty low key although Katia did catch up on some homework and of course, I am a busy body even on a slow day.

Katia's eyes are REALLY bothering her a lot. It pains us to see just how irritated they have become. They have their good moments also but she is really bothered by them, again, throughout most of the days. I think she should go back to the eye doctor and she actually agrees. Then you know it really bothers her.

She really looks forward to naps and bedtime just because she wants to rest her eyes.

School? She is doing well with her reading, has avoided her math, is counting to 13 regularly and her writing and coloring is a bit "off" right now. She is just a bit more shaky than normal but that is most likely due to the steroids.

I look at Katia and she just makes me smile. No matter what, she makes me smile. It is like when God sent her to us, he sent us this daily reminder to SMILE:)

We are talking about a haircut. She has never really had her hair cut except her bangs. She thinks she wants a PIXIE kind of cut, short but wavy. I agree. She hates having her hair washed and brushed. If it is down, it bothers her eyes. She wears hair bands and hair clips but she lays down so often through the day that I am doing her hair constantly and she doesn't like me brushing it or anything. So, we are talking about a "big girl" haicut. Not sure when but we have her "go ahead." She is nearly 7 and this will be her first real hair cut other than when we cut it shorter when she would lose it during treatments.

So, I just wanted to catch up on here. I promise, I will be back, coffee in hand, earlier for now on. I still start my day checking up on other sites while Katia is eating breakfast. I just haven't been jumping on and updating.

Lots of love,

Tracy:)

PS I have some "I Still Dream About You" CDs to seal up and get in the mail. I haven't forgotten so they will get out of here very very soon.

Thank you for keeping me posted on some of the prayer requests and request to add.






October 17, 2006 8:00 PM

Hello:)

All is okay here:)

I have been feeling just fine during the days. It is nights that seems to be my problem. I am just getting cold sweats at night. I don't sleep too soundly anyway so this wakes me up. I don't really feel bad, just cold sweats. I have yet to wake up enough and tell myself to check my sugar levels. I have had problem with that in the past.

Katia is doing good. She is counting to 13 now!!! We worked very hard today to get to that with building blocks and such. She is very proud of herself. I think it is really in her brain and not just on the surface. We will see tomorrow.

I have been checking up on some websites and I am so glad to see some of you signing onto them and leaving messages:) A lot of people out there need prayers.

I will try to update on the prayer requests and add some more tomorrow. I have a few that have come to me via email that I haven't had a chance to add. The computer/disonnect issue is resolved so now I need to catch up.

We missed school on Monday, primarily because I wasn't feeling well. Katia has been coming down with what seems to be a cold or allergies and her poopies are getting bad again. We need to take more in for a lab at our next appointment. Please keep Mark D. in your prayers as he prepares for transplant. There are many in need of prayers.

Katia says to please pray that her brain can hold onto the school work.

I guess that is a good way of looking at it:)

She just came in while I was updating and said to say that. She can tell when I am on Caringbridge.

Lots of love, Tracy




***********

October 15, 2006 4:00 PM

Please keep Hannah S. in your prayers. She has been on treatments for round cell sarcoma but over the last four weeks, her tumor has doubled in size. The doctors say they are out of options. Hannah needs a miracle and encouragement. I know how good each of you are at encouragment and praying.

Love, Tracy











October 14, 2006 8:45 PM
Song Playing:
"Katia Solomon" by Songs of Love

Hello:)

First, I have checked a few sites and I just want to say that it seems, Taylor, Matty D. and Blake are very much in need of prayers. I will try to update the prayer request tomorrow. Also, please keep Angel Bailee's Mom in your prayers as well as the families of Angel Jake, and Angel Christi T. Bailee would have been turning 11 this month and she loved Halloween.

Also, please keep me in your prayers. I know this doesn't sound like much seeing all that is faced on Caringbridge and other sites but I haven't felt too good the last few nights mainly. I don't sleep much really. I have a very active mind with no on/off switch. But I am used to that. Last night, around 3AM, I woke up feeling really bad. I am not one to really get sick much but I just felt horrible with a cold sweat, clammy feeling and just really really weak. I felt fine before I went to bed. I just pray I am over whatever it was. I still don't feel back to "normal" but I feel much better than I did through the night last night. I am hoping it is just a bug that is short lived.

Katia is doing well. Her shoulder is back to normal and feeling well. Her knee doesn't hurt but does have a few bruises as well as the back of that same leg. Maybe she did something to it and she doesn't remember.

She has gone out on errands with Myron the last 2 days and enjoys just getting out of the house and driving around here and there.

She is very eager to go to the stores but we have held off on doing too much with her. It is a hard decision to make some times because we worry about her getting sick but we also worry about her quality of life. She is nearly 7 years old and other than her vocabulary, she is not at all like her age. She is physically more like a 3 year old, socially like a 3 year old but if you talk to her, her vocabulary is just so far beyond that. She still has her baby ways and toddler attitude though. I just know things can always change with her so we want her to get out and do some things she has been missing. We are looking to getting tickets to Lowry Park. Family Year Passes are very reasonable, it is outside and the weather will be perfect now until around May of next year to go anytime. She loves to see animals!

She enjoys going out with Myron though. He can take her to check the mail, go to the bank or small errands like that. She is always so happy:)

I am eager to see how long she holds onto this last IVIG dose she received September 26th. The dose usually last her for about 6 weeks before her immune system bottoms out again and she needs another dose. It will be a good sign when she can go further in between those IVIG transfusions and her body makes its own immune cells.

School? We caught up today!! She wasn't happy but now she is happy AND caught up:) I am behind on her sentences but we are working in a different way with her now. Instead of her having to come up with the sentences and write them on her own, we give her a "word list" and she tries to make sentences using the words she has been learning via reading books or through her worksheets. She seems to be able to do that without giving up so it is good practice for her reading and writing skills. We will work on the memory and spelling a little later.

Well, this is dragging on. Thank you for checking in.

Lots of love,

Tracy








October 13, 2006 11:41 PM

Yes, it is late:)

Today has been a good day for the most part. Last night Katia suddenly started crying about her right knee hurting. She was in the bathroom to brush her teeth and she said her knee suddenly started hurting and she broke into tears. Then about 10 minutes later, same thing with her left shoulder (she had her flu shot in her right arm) so I emailed her doctors. Today she is better and they said it was probably just due to the flu shot. She was pretty much herself today. She went out with Myron for a bit. Him, Tatiana and Katia. Sharayah was at a Volunteer Program on a field trip so it was just me!!! That doesn't happen much.

I felt fine and then suddenly, I realized I had a fever. Took my temperature, 102.5. I felt pretty crappy but there are a lot of things going around. I took some tylenol and laid down but I am not really one to be able to sleep much at night much less take a nap. I can get by on a few hours sleep a day. I just think I am kind of run down. I feel better tonight but I am still staying right at 101.00 tonight? We will see. Hopefully it is just something viral and goes away.

I updated some of the prayer request but I haven't gotten around to a lot of sites lately. Someone that has kept up with Katia for QUITE SOME time and is a Ladybug Club member is asking for prayers for her nephew. His name is Marc. Please keep Marc in your prayers. He is going through quite a bit of testing right now for mental illness and I will try to update on him but I know he and his family could use your prayers.

Thank you for always taking the time to check in, sign the guestbook to just say HI and follow the Prayer Requests. That means a LOT!

Lots of love, Tracy











October 12, 2006 6:00 PM

WBC 5.53
HGB 14.9
PLT 297
ANC 3800


Katia is doing well today. Her arm hurts because she got the FLU shot yesterday. That was not in her plans but she is glad to get it out of the way. When we said that would be it until next year, she is already worrying about NEXT YEAR'S FLU shot?

She has been better about playing on her own and has even been going in and out to her playhouse in the backyard. Yesterday she swept it all out and wiped everything down and was just "housekeeping". Right now, she is on the back porch singing to herself and playing. She normally doesn't do anything alone so this is a big step for her:)

She has had 2 days with no schoolwork (bad me) so I guess she is enjoying that:)

I keep getting disconnected here so I don't want to lose my update plus I have updated/added to the prayer requests section.

Lots of love, Tracy






October 10, 2006 9:00 PM

I am so sorry to seem so out of touch. I feel bad...

I have been having "computer issues" which are driving me insane so I am backing up a lot of stuff when it is up and going. I am sure you know how much I (we) learn to depend on our computers:)

Katia is doing well. We have clinic tomorrow so I will update after that. She has a few "issues" to bring up. She is also coming close to getting her next School Report Card. Sharayah and Tatiana seem to be very well in school too right now. Sharayah is going through the College Applications and all of that process (I can't believe I am old enough for a daughter to be heading to college next fall).

So, that is what is going on here. If you have a update on one of the above prayer request, please email me. Or, if you know of someone needing to be added, let me know via email. I can get my email just fine on my phone.

tracysolomon@tmail.com

Lots of love, Tracy


***************

October 9, 2006

PRAYER REQUEST ADDED AND UPDATED

Love, Tracy





October 8, 2006 8:00 PM

We have had a very good weekend:)

I will share more tomorrow but all is well with Katia. We set the rest of her ladybugs lose and I THINK I spotted one today but it flew away.

I will upload some new pictures tomorrow and fill you in more on our weekend.

I can't help but to have Angel Jakes's family on my mind this weekend as they are having to say good bye to their little 4 year old awesome and cuddly little Jake. I think I will always think of his gorgeous smile when I see any M&Ms, a dirt bike or just boys being boys.

I was going to update yesterday but my mind was really centered on his service so I don't think I would have been able to really update. I am just grateful that Katia is doing well and had a good weekend here at home:)

She has clinic on Wednesday which I am grateful for actually because she has some issues with a little bit of bruising going on and her veins are just much more noticable than usual so I am eager for labs to be done. Her energy has been VERY good, her eyes are still painful BUT her hips haven't bothered her all weekend!

Lots of love,

Tracy

PS Katia has not done any homework since Friday so we have some catching up to do before Ms. Michelle gets here tomorrow. Katia told me, "My sentences aren't done!!!" So, that is how we will start the morning.









October 6, 2006 5:00 PM

As you can see, it was time to release our ladybugs! Although it seems they didn't WANT to leave!!

We let go of 3. There are still about 8 or so more to go but we are going to wait until Daddy and Sharayah are home so we can all be a part of this (small things I know).

Katia was laughing so HARD and it was such a cute chuckle, I wanted to share it. The ladybug on her hand was tickling her. A LOT!

We finally had to "close up shop" because we have a lot of lizards and they started gathering around like it was dinner time but we saw 1 of the 3 fly away, 1 crawled into the bushes and the other was literally walking down the sidewalk as we came back in the house:)

Here are some short videos (make sure your sound is on so you can hear her laugh!)





SETTING LADYBUGS FREE!! OCTOBER 6, 2006














Love, Tracy






October 5, 2006 5:23 PM

Please keep the family of Angel Jake in your prayers as he passed away today around 3:10 PM.

We love you Jake and you will ALWAYS be remembered for your brave brave battle and your amazing smile!!!

Love, Tracy


********

October 4, 2006 11:00 AM

I am working on updating prayer requests right now but I wanted to drop by and update first on Katia.

Katia is again having a lot of issues with her eyes. She is keeping the brown shirt wrapped around her head mostly to keep the light from the house out of her eyes. I don't really turn on lights during the day and I have been keeping the blinds and curtains closed but it still bothers her. So, please pray for her eyes. She is still doing the drops and eye ointment but I think the GVHD is worsening in her eyes.

Katia's skin looks about the same. Sometimes, it looks less irritated than other times. I am just thankful she has been off the Pentostatin for quite some time now and continues to be the same and not worse. We are trying to come back down on the steroids by 1mg every two weeks. We take things very slow with Katia and give her body a chance to adjust.

This morning, her hips are bothering her a lot more than usual. She has been walking lately with one foot flat and the other she is on her toes. I keep telling her that it will make her hips sore to do that but it is a constant thing I keep having to tell her. She says her bottom hurts and walking like that makes her bottom feel better? Anyway, I think she is irritating her hips by walking that way. She says her whole right leg hurts and her right hip hurts right now so today is turning out to be a day spent on the sofa.

School? We are reading a new book and she is doing very well. She is reading, "Dick and Jane" which is one of the very first book series we used to read in school (way back in the days!!) She struggles through each chapter (which is about 2-3 pages) but yesterday we went back to the beginning chapters and she was amazed how much easier it was to read them than just a week or so ago. She has learned new words like; look, down, up, funny, go, baby, and, Puff, Spot, etc. She is really liking the idea of the story "unfolding" as we go along. I always stop letting her read right before she wants to so she is eager to go on the following day. Reverse psychology is working:)

So, that pretty well sums up what is going on here today.

Oh yeah, Math? Our goal right now is counting to 100 and recognizing the numbers. I haven't been doing actual math work with her. She has 1-10 down very well!! She is stuck on 11-19 right now. BUT, when she gets through that, I think she will breeze through to 100 because she caught on to the idea about the repitition of numbers once we get to the 20's, 30's, 40's etc. She is working really hard this week on 11-19. She gets a gold star each time she completes a group of 10 numbers and a BIG surprise when she gets to 100!!! I have no idea what the surprise will be yet?

Okay, now I am done.

I will work on the Prayer Request section. I am going to try to condence some things on the site.

Sorry for any typos but I am kind of rushing through this update.

Love, Tracy







October 3, 2006 10:20 AM

No update yesterday?

WOW!

The girls were out of school yesterday so we just kind of hung around. Katia got the day off too. She asked me to pass on homework so I said, "Okay." That was easy...

I am working on a little project which I will share later when it is complete. I don't spend much time at the computer (believe it or not) so I start something and have to keep coming back and forth to work on it.

Please keep little Jake in your prayers. He is not having a very good day.

Also, please keep in your prayers those families who have recently lost loved ones. www.ladybugkatia.com has drop down menus to both other children who are still fighting different diseases as well as an "Angel" drop-down menu of those who have passed away.

Also, the "Angel Drop-Down Menu" can be found on the "I Still Dream About You" Slide Show page.

Katia is REALLY trying to get her counting better. She is just kind of stuck in the teen's. But, she has caught on to how easy it is past there as the numbers repeat in the 20's, 30's, etc. So, I think once we get through the teen's she is going to get to 100 with no problem. We kind of made a deal that she would get a "surprise" when she gets through each group of 10 and a BIG surprise when she gets to 100!!! I remember the other girls doing this in Kindergarten and they worked really hard at coming up with what 100 items to take in for the big "100 Party". Sharayah took paperclips I think and Tatiana took Skittles (inside joke on that).

So, that is what we are up to:)

Also, a note on the CDs that were recently ordered. Most of them were shipped out and should be recieved by now or in the next day or so. The "I Still Dream About You" CD atually has 12 songs on it. I decided to go ahead and put the rest of the songs from the site onto those CDs since a lot of people didn't have previous CDs. Also, the little CD's look like a "Record", remember those? Yeah, I thought they were really cute!

So, there are some more to go out in the mail this week.

Lots of love, Tracy










October 1, 2006 2:50 PM


Here is a short video clip from yesterday's event. This is Katia and the Chick-Fil-A Cow doing the "Chicken Dance"!

Just click play to start the video.




Also, here is a link to the pictures from yesterday:)

KSF Event Pics. You can click that to see the photo album from yesterday's events.

Love, Tracy



*****************

September 30, 2006 4:25

Katia had a LOT of fun today (Amy, I am sorry we missed you-we got there later than you).

There were a lot of very cool cars and a big BIG Monster Truck.

Katia got to get up with the Chick-Fil-A Cow and do the Chicken Dance!! That you will have to picture but we do have pictures to upload that I will post tomorrow.

A number of people donated blood and registered for with the National Marrow Donor Registry so that was a success!

The weather was perfect but after 2 hours, Katia basically wore out and needed to come home.

The Katia Solomon Foundation along with the National Marrow Donor Program, Florida Blood Services, Jerry Ulm Dodge, Chick-Fil-A and all those who registered to show their cars and trucks had a good day. I was so glad the weather stayed nice:)

Thank you for everyone's participation!

Thank you:)

I promise new pictures up tonight or tomorrow as soon as we go through them. Katia had so much fun and it was great to see her out there and "mingling" for a couple of hours.

Love, Tracy











September 29, 2006 2:15 PM

THE SENTENCES ARE AWESOME!!! KATIA IS REALLY ENJOYING BEING ABLE TO READ THE MESSAGES TO ME:) THANK YOU FOR BEING A PART OF TEACHING HER TO READ!

Ms. Michelle just left and Katia very much enjoyed her class. She really loves working with Ms. Michelle and I hear a lot of giggles but also a lot of hard work going on. Very good blend:)

Please keep Ms. Michelle and her family in your prayers as her Mom is quite sick right now. Thanks:)

If you are local, please join us at the event tomorrow (details are above and on the Katia Solomon Foundation site under Current Events. There will be opportunity to donate blood, meet the Chick-fil-A cow and see a lot of neat trucks and cars. Plus much more!! Katia is very much looking forward to the outing.

I will be on here over the weekend updating some ongoing prayer requests. Please keep little Jake in your prayers that he can gain more strength. I think M&Ms are helping him along.

Also, I want to add on here (I know I bug a lot but it is really important) that no matter where you live right now, blood supplies are low. Many patients, accident victims, babies, etc. really rely on blood donations and blood products to save their lives. Katia is a first hand example of that. Even with a GREAT transplant, without blood products, these patients would not be able to survive as they constantly need transfusions. So, please donate and consider becoming a regular donor. A person can donate up to every 8 weeks usually. Many people are unable to donate due to medications, health issues etc. but each of us can pass on the word of the importance of donations.

Well, Katia wants to do some stuff on the computer. She was actually on here for about 3 hours yesterday working with her programs and I am happy to see her enjoying herself and learning at the same time. There are also many awesome websites she likes to visit that have helpful and fun lessons.

I will take pictures tomorrow, trust me so I will post some pictures on here from the event. Katia wants her picture taken with the Chick-fil-A Cow!

Lots of love,

Tracy













September 28, 2006 3:02 PM

Okay, I have just a couple of minutes while Katia finishes up some school work. Since her computer broke a few months back, she is promised to get on mine and do her JumpStart School programs (excellent programs by the way which I have used since Tatiana was just 3 or so).

Anyway, I want to share her sentences but I also want to ask for your prayers. Katia REALLY wants to do good at school, mainly reading. She is getting pretty frustrated in math so I am holding off and spending more time with writing, reading and reading her books so she can enjoy "unfolding the story." But, she doesn't want my help. She wants to do it by herself. She is struggling with remembering letters and numbers, their sounds and names. But, she is EAGER.

I have a small idea:)

How about some little sentences for Katia to read in the guestbook? I always read her the entries. I will tell you her spelling words so you know what she is working on? Sound good?

"I", "A", "am", "an", "did", "dad", "is", "if", and "me". That is this past week's words. Next week, she starts a new list and I add the words she didn't grasp onto that also.

Sentences:

September 27

Sentence: "I am me. I like yellow and purple."
(She was able to use her worksheets for this.)

September 28

Katia: "I ma a zbri to a soo xlto hfa sj."

Sentence: "I am a zebra at the zoo with stripes."

I tell you, she likes a challenge! She is harder on herself than anyone else could ever be.

Please keep Little Jake in your prayers. He is home and they are happy to have him there. He is so so weak though and I know they are trying to enjoy every little minute with him. Drop by their site and "Share Hope on the Wings of Ladybug." Katia just thinks Jake is ADORABLE!! Those are her words. Sharayah and Tatiana too. They love to hear how he is doing. I told Sharayah and Tatiana that he was sent home on Hospice (which still leaves room for a MIRACLE!) and that was just heartbreaking to them. I know it is to all of us that have followed Jake's journey and read the updates from Staci, Don and MO!

Okay, I am being bugged to get off the computer by this little person with her hands on her hips!

Lots of love, Tracy




********

September 27, 2006 10:06 AM

I wanted to share this as it has been sent to me a few times and each time, I just really appreciate the message of HOPE. That is so important in daily life!!
4 Candles

Love, Tracy

PS I wanted to add a quick update here on Estephany Portillo. I will update her site soon as well. Estephany is doing VERY VERY WELL!!! Her next visit to Cincinnati is November 13th and hopefully she will get a full health clearance. She had her broviac taken out a few weeks back and has just been doing wonderful! Myron went to visit them yesterday but didn't have his camera. I want to update her site with new pictures as soon as possible but I wanted to share those news with you:)









September 26, 2006 4:40 PM

Hello:)

We are back from clinic. Long day but well worth it. I feel better when Katia has her IVIG as I know how many donors it takes to make that possible so I am grateful and it makes me feel better knowing she has some antibodies in her little body:)

DONATING BLOOD PRODUCTS SAVES LIVES!!!!

So, today's sentence (we got quite a bit of homework done at clinic and then she spent the rest napping) was,

September 26th

Katia's Sentence:"A dog is brown."

She did very good. No need to correct that sentence:)

She also practiced her spelling words so we can have a spelling test this week. She read some of her sentences to one of her doctors (he was very proud of her) and she was in a very good and joking mood for the most part:)

Now, she is watching Stuart Little.

I updated/added some prayer requests. I do want to point out something on here also. Your prayers are appreciated by many, even more than those who are on the prayer requests list. There are many people involved with each of those families including health care providers, extended family, friends, etc. I know I appreciate prayers for Katia, her doctors, our families, etc. When they say, "It takes a village to raise a child," in this case, that is true. It is amazing how many lives one person's life actually effects.

Lots of love, Tracy













September 25, 2006 6:44 PM

Katia is here holding her journal so I am going to catch up on her sentences while I have her help:)




September 19th

Katia: "I see a Fat Cat."
Sentence: "I see a fat cat."

September 20th

Katia: "Dan IS a tot."
Sentence: "Dan is a tot."

September 21st

Katia: "A van sat at the lt."
Sentence: "A van sat at the light."

September 22nd

Katia: "I am hape goig plass."
Sentence: "I am happy going places."

September 23rd

Katia: "The rat can sit."
Sentence: "The rat can sit."

September 24th

Katia: "Daddy can fan me."
Sentence: "Daddy can fan me."

September 25th

Katia: "I had a skire grem."
Sentence: "I had a scary dream."

I feel like I just did my homework:)

Katia had a good day with Ms. Michelle. She enjoys her reading and spelling much more than math. Katia has a hard time remembering her numbers and the way they are written. She also has a difficult time with the concept of math.

However, she is practicing her words all over the house, literally. Any tablet of paper or her little writing boards have words on them or sentences. I remember 2 months ago, her "sentences" were made of scribbles and lines. Now she is working with putting letters together. She writes a lot of them backwards and gets sounds mixed up but I can usually figure out what she is writing.

The best one was on the kitchen wall (yes, on the wall) under the calendar. It said, "Katia is six." Luckily it was written in pencil and I am saying luckily because one time she decided to "decorate" the dishwasher, refrigerator, dining room wall and her highchair with a permanent marker (which ended up not being too permanent with a little scrubbing.)

She has also written her name behind her bathroom door, next to her bed, next to the dining room table, in the hallway, etc. You get the point, she likes to write her name. I think she practiced writing her name a little too much with signing her "Ladybug and the Dragon" books:) She can definitely write her name!!

Her favorite letter? Lower case "e".

Her favorite number right now? "4"

Today she came up to me a little after school was done and said her belly really really hurt. She has been doing this on and off lately. I thought she was hinting for lunch but she said no. She was hungry but her stomach was really hurting. She can't describe the pain too much and the other day at clinic she said it was "bubbly". This wasn't "bubbly" but it really hurt. I asked if it burned, she said no. I asked if she felt really full and she said, no she didn't need to use the bathroom!! I guess she knew where I was headed with that. Then she just sighed and told me, "I will just tell them at clinic..."

She does take a LOT of medicines still.

FK506 (Prograf)
Voriconazole
Acyclovir
Prevacid
Fosamax
Penicillin
Norvasc
Septra
Cellcept
Zyrtec
Prednisone (Steroids)
Vancocin
Potassium
Magnesium
Metamucil
2 Gummy Bear Vitamins
2 Calcium Gummy Bears
Codeine (when needed)

It is kind of hard sometimes for her body to handle on the medicines as well her her HUGE appetite right now. Her mind is much more hungry than her belly, that is for sure.

Tomorrow we go in for the IVIG transfusion (transfusion of donated antibodies) so we should be there for about 5 hours or so. We are taking homework and her Leapster. She is looking forward to clinic? She actually never complains about having to go to clinic or even have her port accessed. It hurts when they actually access it but she doesn't over worry about it. Right now, she is not looking forward to the idea of the flu shot but she says she just wants to get it done. Not sure when that will be but soon.

Please continue to pray for each of those on the prayer requests list as well as so many others. Also, please keep in your prayers a Silent Prayer Request that was passed on to me. Although I can't always share what these prayer requests are for, I do often hear back of how much they have helped in different ways. God knows what our prayers are. Thank you:)

Thank you so much for checking in on the Ladybug!!

Love, Tracy






September 23, 2006 7:37 PM

Okay, I promised two days ago I was going to add some pictures and I AM:) Right after I am done with this update. Please keep Jake in your prayers. His link is above in the prayer request. Also, please keep Blake H in your prayers. He is going through quite a bit right now and his whole family could use your prayers. Someone I never had listed in the prayer requests (because they are new to me) is Angel Randon He was called to Heaven today to join his Angel Brother Reid who passed away at 5 months old. Randon was just 2 months old. Both had the same condition. Their family has just gone through so very much.
Also please keep Angel Bailee's family in your prayers as they are still grieving the recent passing of their sweet Bailee.
Above you can find many others in need of prayers as well as the Drop Down Menus on Katia's LadybugKatia.com site. I thank so many of you for not only visiting the pages but also leaving such kind messages in guestbooks. I too drop by many pages and read the update and do not take the time to post a message in the guestbook, not because I don't want to but either time is lacking or I just sometimes don't know what to say (I know that is hard to believe I lack for words) but I do know families appreciate the encouragment as well as those families who have lost their loved ones, the fact that people still remember those who have gone before us.

I also want to thank so many of you who have emailed me about the McDonald Family and your wanting to help. There are so many ways to help that are listed for them but please always know that prayers are so appreciated.

I told you the other day about someone you may constantly see in Katia's guestbook, Sheila from NY. Her brother was diagnosed with a colon tumor. Yesterday he was diagnosed with Colon Cancer and will begin immediate radiation. I will try to keep you posted on his progress. His name is Stan. Please pray for him and his family at this time.

I don't ever like really being the bearer of bad news. I like to share positive entries as well.

Okay, some good news:)

Emily L's recent visit to St. Jude brought some good news. Her T Cells are recovering and her labs looked good:) They are an awesome family whom we personally know. She was very good friends with two Angels that recently went to Heaven, Cameron D. and Bailee. I know this has to be very hard emotionally for their family and especially for Emily as she continues to fight her own battles.

Now, let me go post some pictures.

Oh, first let me update on Ms. Katia!!! Katia is doing well. She got a really cute Ladybug Halloween Costume in the mail (thanks, Susan) and she is just so cute!!! It is very huggable and just adorable. I will get some pictures of her wearing it closer to Halloween but she LOVED the costume and wore it around the house a bit!!!

The IVIG dose has been changed from Monday to Tuesday which is good because that means Katia can have classes with Ms. Michelle on Monday. I don't like her missing her classes so it worked out really well:)



Lots of love, Tracy




***********

September 22, 2006 2:46 PM

I promise pictures are coming but I wanted to update first, get Katia her lunch and then do the pictures:)

Many of you sign the guestbook so you may notice, Sheila from NY signing all the time. She needs prayers for her brother, Stan. He just recently was admitted to the hospital and they found a rather large tumor from his colon. They are waiting to find out more about the tumor but you can imagine how prayers would help bring comfort right now.

Also, another regular in the guestbook is Amy from St. Pete. Katia and I have actually met them a few times as they go to a clinic at ACH also. She just found out her 83 year old grandmother has stage 2 breast cancer. So please keep them in your prayers as well. She is very close to her grandmother.

The world of cancer seems to be growing to me but maybe that is because I am more involved than I used to be. So many people's lives are touched by cancer.

Please feel free to leave prayer request in the guestbook as I am sure people scroll down and read other messages. Like I say many times, everyone is in need of prayer for something. We may not always get the "answer" we are looking for but many prayers are answered in many different ways.

Katia had school with Ms. Michelle today and did very well. I know I am behind on sentences as well (so disorganized these days) and I will catch those up. She likes to know I get them on here and I just like it because it goes in her journal history which is like a diary/journal in many ways. When I forget something and I can usually go find it in journal history as far as counts or when Katia had a certain tests done or started certain medicines, etc.

Katia has started to do more daily exercise since her doctor requested her to "move more" and she is enjoying getting herself all out of breath. She really does show a lot of effort nearly anytime she is asked to do something. "I can't" isn't said too much by Katia.

Well, she had a late breakfast but now she says her belly is ready for lunch.

She is due to go in Monday for IVIG since her counts dropped to 402. They need to stay above 500 so the IVIG is a boost of antibodies donated by blood donors. Blood product donation is SO IMPORTANT ALL THE TIME AND THERE IS ALWAYS A NEED. RIGHT NOW, IN MOST STATES, THE NEED IS CRITICAL!

Okay, I am out of time. Someone's belly is calling me:)

Love, Tracy

PS Please continue to check on and pray for Jake. Things rapidly change with him both from better to worse and to better. That is a roller coaster for his family and prayers are very needed for everyone involved.

Also, for Taylor (listed above in prayer request) as they found out her disease is still progressing and her current treatments are not working.












September 21, 2006 3:23 PM
GUESS WHAT KATIA GOT TO DO!!!


Hello:)

First, Katia wants me to say that "first grade is harder than last year..."

I tell her she is doing very well. I have to also say she is very much a perfectionist (not sure where that comes from). She tries very very hard and she doesn't stop till she gets something. That makes it hard on both of us as I get to the point I don't want her frusterated and she is frusterated because she doesn't want to stop till she gets it. So, we have a system that we came up with. Since her problem seems to be things aren't sticking in her head but she can recognize words, numbers and letters, we have a "cheat sheet". How many parents make those for their kids? Well, it works. She can use her "cheat sheet" to look for the correct way to write numbers and letters (she tends to write things backward) and she can look for the correct way to spell words she can read when she is trying to write her sentences or do work.

We took a test (she took a test), two actually. Each were the same. They were numbers, letters and small words. She had to listen to me say the number, letter or word and write it. One time was WITH the cheat sheet and the second time was without. Out of 25 questions, she got only 6 wrong with the "cheat sheet" and about 12 wrong without the "cheat sheet" so for now, she can use it. We go over ending sounds before we start to refresh her memory like "an", "am", "ot", "at", etc. Then she is ready to go.

I just want her to see how much she really knows and not get hung up on thinking she needs to know everything. It also gives her a chance to work with "sight words" and recognize them with objects.

BIG NEWS!! Guess what Katia got the okay to do? (This was okay'd by ONE of her doctors, not the other one so if the other doctor is reading this and doesn't agree, feel free to give me a call- I will put Katia on the phone).
Anyway, she got to go to the Grocery Store, wearing her mask of course.

She was so so happy!!!! She was also very noisy and pointing out everything!! Of course the bakery area was her favorite. We just needed to pick up a few things but we spent about 15 minutes in there and she even got a balloon from one of the people that work there. She was so so happy!!

This only goes for smaller or not so busy stores and of course we have to keep her counts in mind but it is a big plus. She hasn't been to the Grocery Store with me since JULY 2003!!!

We were both happy:)


Love, Tracy





September 20, 2006 2:26 PM
WBC 5.20
HGB 14.5
HCT 43.6
PLT 311
Potassium 3.2
Magnesium 1.5
Weight 17.7kg (39 pounds)
IGG 402
FK506 9.6

We are back from clinic and all went well. Katia has been on the "PINK" side but we are going to continue trying to wean the Prednisone (steroid) 1 mg at a time. Hopefully we can continue to go down and her body will adapt. I have kind of mixed feelings about it at this time...


Katia has been feeling kind of puny lately, tired and yawning a lot and not really able to focus. She yawns a LOT!! Anyway, I always ask, "Am I boring you?" She will say, "NEVER!"

Well, her magnesium and potassium levels are down and that could have her "off" a bit so we are adding those pills back in. Hopefully it will perk her up. Her hemoglobin has been on the high side in the past few months and then it came closer down to normal last time but still high. This time it went up again. I would think she would be running around like the Energizer Bunny.

Please pray for Jake as he is having a very tough time right now. They tried to remove him off the vent but he stopped breathing soon thereafter. They put him on full life support. He is going to get a CT and probably an MRI as it seems it may be a brain problem where his brain isn't telling him to breathe. His EEG showed no seizure activity. Please pray for him. Jake has seriously pulled through some very difficult times in the past, seriously!! That is due to the prayers. So, please pray.

I will check back later and update. I appreciate the emails letting me know of Jake's current condition. We were at clinic and I get my emails to my phone so we started praying and just got home. Katia doesn't keep up with the real "roller coaster" of a lot of CB kids but she does know a lot of them by their picture and I will tell her, "We need to pray for..." and she always does. I think she really feels bad when she knows someone else feels bad. She stays concerned. For the most part, we try to keep her focused on getting better and not let her know everytime someone passes away. At least not right away. We will bring it up that so and so recently went to Heaven. I think she knows much more than we think but I never want to put a fear into her that will hurt her recovery process. I always tell her though, "When you pray, God hears every word you say or even think. So, if you are scared or you know someone else that is hurt or scared, you can pray anytime and He listens to you."

Well, seeing that we just got home, I am kind of behind on my morning routine around here of cleaning and laundry and the good stuff like that:)

Thank you for stopping in.

Love, Tracy


******

September 19, 2006 9:00 PM
2nd Update Today

Please keep the family of Angel Christi Thomas in your prayers. She is now one of Heaven's Angels as she peacefully passed away this morning. Her parents were there with her. Please see the Prayer Request Section for more information and her website for information about Memorials and Services. "Fly free sweet Christi."


Love, Tracy







September 19, 2006 6:39 PM

Just wanted to jump on here for a quick update. I am keeping up with the different prayer requests today but I haven't been able to update. Katia is at a "road block" with school right now so we are working on a few different ideas to see what works. I certainly know her limits and when "enough is enough". She WANTS to know certain things so we are trying to find out HOW to get that to get inside her brain (these are her words) and stick, like oatmeal?

Tatiana had a nice day yesterday. We will do cake on the weekend, seeing as there is still some of my birthday cake still left right now...

The end of the year from August-January are all of our birthdays, Thanksgiving, Anniversaries, Christmas, Near Years, everything!!! So, we have to watch our "Waistlines", at least some of us:)

Please keep those listed above in your prayers. I know you do:)

Question:
Sharayah is working on something for school. There is a certain commercial on NBC that shows a Michaelangelo painting, "Madonna and Child" in the background. We can't find that commercial!!! It is driving us up a wall. (The simple things in life). So, we are asking for help. Do you know the commercial? Who aires it? Who is the advertiser? I am turning it over to you guys:)

Love, Tracy








September 18, 2006 2:00 PM

I have come here a few times to update but I wanted to catch up on the Prayer Requests area first.

Katia had school today with Ms. Michelle and that went very well.

Sentence Time:)

September 14th
Katia: "ABEE SH NE HS.
Sentence: "A bee has honey."

September 15th
Katia: "I gotalotubars."
Sentence: "I got a lot of bears."

September 16th
Katia: "D Man can sit."
Sentence: "A man can sit." (She just wrote her "a" backwards)

September 17th (two sentences this day)

Katia: "I like Yellow."
Sentence: "I like yellow."

Katia: "A rad dag kis Katia."
Sentence: "A red dog kissed Katia."

September 18th
Katia: "A rat is not neat."
Sentence: "A rat is not neat."


The word she learned the other day that I was speaking of was KISS!! She likes to write on her little erase board sentences, like, "I LUV U" and such and I just knew she would be writing "KISS" a lot now. She has been. She likes to bring me her little board with hearts drawn on it and "I LUV U" and sweet little messages for me to find. It is one of those erasable boards.

She is working very hard on her words. I am trying to work with her as "Sight Words" as well as Phonics. Once she gets her mind in gear, she does very well but first she starts off frusterated and "thinking". Patience pays off though because she gets very happy when she can go through her spelling words and recognize them. That is all we want right now. She doesn't really have "Spelling Test" as she really can't write what she hears very well but she will:)

Katia wants to cook lunch with me so I need to sum this up seeing it is now 2:06PM.

Late lunch:)

Love, Tracy









September 17, 2006 6:24 PM
HAPPY 14TH BIRTHDAY TATIANA!!!

I know I am a few hours early posting a Happy Birthday to Tatiana but I don't want to be late tomorrow as I know she will check the page from school!!

Tatiana is a GREAT big sister to Katia!!! She has always been a great daughter. She has had her own health issues in the past and continues to face back pain which can't seem to be resolved but she has a great attitude and always takes time to really PLAY with Katia at Katia's level. That takes a LOT!

Things here have been moving along... There have been a lot of ups and downs on Caringbridge lately. I need to update some of the prayer request as I have some good news (that is always nice!).

I will put it here for now. Jacob is off the vent!! And the Herrin sisters SHOULD be going home today if all went well. Little Jake is desperately in need of prayers as well as Christi T. as they continue to have to go up on her pain meds, so she is basically sedated. She is surrounded by her Mom and Dad, friends and some very special doctors, nurses and healthcare team.

I have a few silent prayer requests to add on here.

I also have a prayer request to add here from one of Ladybug Club Members, Christie. Christie has followed Katia for quite some time now but right now she and her family could use your prayers. Her page has more in the past journal entries about her situation medically but also with some very big losses recently in her family. She just suddenly lost her father due to a ruptured aneurism. Sadly, that is not all that is going on so please stop by her site and maybe read the last few journal entries. Thanks:)

Thank you so much for checking in. Someone, actually two people, that I guess have really been following this journal for so long, emailed me and said my writing seems to have some "in between the lines" concerns showing. We do have our added concerns right now and constantly need day to day prayers. However, Katia is doing about the same. There is nothing that I know that I don't share. I probably share too many things on here like her runny poopies when she has them. I SO MUCH appreciate those who actually take the time to read through the whole journal, sometimes more than once since I am so long winded. I have a short attention span so I can understand how midway, someone may get lost in my long updates. Our family has only gotten through all of this because of prayers. Prayers help in so many ways. Prayers for her feeling well, doing well in school, her doctors to know what to do with her, treatment ideas, finances is always a big thing, for her happiness and just so much!!

The other night I was putting Katia to bed and she said something about Monsters under her bed. She is six so nothing I say is really going to make that just go away but she quickly added that if she has a bad dream or that she is scared, she gets off her bed, prays to not be scared and then she is okay. I was so happy to hear that from her. I think it is a huge lesson. I know I get VERY OVERWHELMED a lot of times!! I have to figure out a problem or make a decision and although I reach my panic moments at times, for the most part, Katia's journey has taught me faith. It has taught me to pray, not just say something but sincerely pray and just TALK to God as though he is sitting there holding my hand. He is. Sometimes, after I have panicked and flipped out and the problem resolves or the decision works out, I want to kick myself because I feel like I lost the ability to just have faith but we are human and we don't always think clearly.

I get a lot of emails for prayer requests, which are a lot of those Silent Prayer Request I post. Someone just wants prayers but not to really share their problems or concerns with too many people. I love to get emails back saying that things worked out well or that at least they felt better because they felt they made a decision based more on prayer than not. I know not everything ends up working out. We pray and then we feel like our prayer isn't answered.

Thank you for your prayers.

I will update more tomorrow as well as add Katia's last few sentences. Today's was cute:) She learned a new word and I am sure she is going to be writing it a LOT!!!

Ms. Michelle will have school with Katia tomorrow so I will try to update during that time:) We have clinic on Wednesday to check her counts and IGG level. It wasn't drawn this last time?

Love, Tracy





******

September 15, 2006 4:45 PM
PRAYER REQUESTS UPDATED 7:00 PM

Hello:)

I have been checking for updates on Jake all day but nothing since 9:15 when he was about to have an MRI. Please keep him and his family in your prayers.

Katia is doing well. She had class with Ms. Michelle today which went well.

Monday is Tatiana's birthday. She will be 14!! She was "The Baby" until Katia came along. Tatiana was 7 when Katia was born so she had the "baby" role quite some time. She is growing up though. Sharayah will be 18 in November, Tatiana 14 this coming week nd soon Katia will be 7!! Katia still likes to be "The Baby" though and as long as I can scoop her up and squeeze her, she can have the title!

Tatiana has been a great big sister, friend and playmate to Katia as well as a listening source, friend, and cheerleader for Sharayah. She is a great sister and daughter:)

I asked her what she wanted and she said Giftcards... if that doesn't let you know she is 14, I don't know what does. I think she is a little "over" me picking out clothes for her:)

Well, Ms. Katia is after me for some "Cheese Chips" so I better bring this to a close.

Thanks for checking in. I will update prayer requests as they come in.

Love, Tracy








September 14, 2006 6:00 PM


UPDATE ON JAKE O. SEPTEMBER 14 Please pray hard for Jake as he is having some complications during/following an already complicated situation and surgery today. Please pray for decisions, procedures, just everything and everyone around and concerning Jake.

Also, please pray for Christi T. as I am sure most of you are following her closely. Her breathing slowed way down yesterday and they thought her journey was coming to an end but she woke up this morning and her condition changes often. Her blog site is being kept up to date with updates and pictures. Please pray for everyone involved in her medical care and for her sweet family.

Katia is doing well today, had a hard time with school work so we made a very short day of it, like 30 minutes. She has class tomorrow with Ms. Michelle so I am going to let her work with Ms. Michelle on a few things. I don't like Katia to get flustered and say, "I can't do ANYTHING!" So, I let it go before it comes to that.

Right now she is sleeping and hopefully dreaming some dreams as sweet as what she looks like while she is sleeping:)

I have some more prayer requests add but I need to get organized to get them on here. I will be back later.

Love, Tracy

PS Thank you so much for your comments on your 9/11 memories. I appreciate reading those.






September 13, 2006 8:30 AM
PLEASE SEE THE LATEST PRAYER REQUESTS UPDATES.

Sorry for the lack in updates...

First I will catch you up on some sentences:)


September 2nd

Katia: "I See A LADBG."
Sentence: "I see a ladybug."

September 3rd

Katia: "Katia can feed daddy."
Sentence: "Katia can feed daddy." (Totally correct!)

September 4th

Katia: "Katia can cook."
Sentence: "Katia can cook." (Totally correct!)

September 5th

Katia: "I am six."
Sentence: "I am six." (Totally correct!)

September 6th

Katia: "I can see dad feed Sam."
Sentence: "I can see dad feed Sam." (Totally correct!)

September 7th

Katia: "Katia did see me."
Sentence: "Katia did see me." (Totally correct!)

September 8th (with Ms. Michelle)

Katia: "This ear can hear."
Sentence: "This ear can hear." (Totally correct!)

September 9th

Katia: "This is a van."
Sentence: "This is a van." (Totally correct!)

September 10th

Katia: "mimTmeLlem"
Sentence: "My Mommy loves me."

September 11th (With Ms. Michelle)

Katia: "the deer ran fm a man."
Sentence "The deer ran from a man."

September 12th

Katia: "I see dad van."
Sentence: "I see dad in a van."


WOW! So that catches up. I have been bad about updating those and she keeps asking me... She likes Sharayah and Tatiana to read her sentences too and some days are much easier than others.

For the most part, she is using words from her spelling list. I allow her to look at the list and put different words into sentences. She really can't spell a word out of her head but she can recognize them in a list or multiple choice. Which I gave her test of 20 questions. Each line had 3 words and she was supposed to circle the word I said. She got all but two!!!

She can definitely sound things out and recognize them. But, cold turkey, nothing in front of her, she sorta panics and gives up. She is doing really well though and she puts a LOT of effort into her school work, especially her writing. She was writing a lot of things backwords like the letter "E" or the number "3" and more. So, I gave her a list with all the letters and numbers that she can use as a reference list to look at before she writes. She still uses the list but is using it less and less so she is remembering how to write the numbers and letters better. Then I give her multiple choice questions where she has to circle which number or letter is written correctly and which Capital letter goes with which lower case letter etc. She likes multiple choice:)

So, today we are starting our day a bit earlier with a little bit of school work, a little bit of cooking, a little bit more school work, eat some of what we cook and then relax!!! We haven't "relaxed" much and just had "Mommy and Me" time so I promised her that today. No matter what, I belong to her!!

So, of course, I should end the update because I am getting this stare from a little 3 foot person with her arms folded in front of her, hips cocked to one side, and wearing a chef hat!

Lots of love, Tracy
NEW PICS IN PHOTO AREA






September 10, 2006 5:14 PM
PLEASE TURN UP YOUR VOLUME TO HEAR A TRIBUTE FOR THE 9/11 VICTIMS AND SURVIVORS AS WELL AS THEIR FAMILY MEMBERS AND THE MANY TOUCHED BY THE TRAGEDIES OF THAT DAY.

What were you doing on 9/11?



This song was written by Myron on September 11, 2001 when he was sent home from work. I had been following on the news since the first tower had been struck. My neighbor had come and alerted me that something was going on. I think I am like most people, I turned on the news to tragedy and then just saw more and more. I remember Katia was still in her crib asleep and I was glad because my mind was so engulfed in what was going on. I remember keeping up with the news, the Internet. I remember first trying to call Myron and find out if he was okay and the cell phone wouldn't ring. He was trying to do the same thing to me. I tried over and over going back and forth between the news, checking on Katia and calling Myron. Sharayah and Tatiana were at school but I just wanted my whole family together, under one roof again! I think many people thought the very same thing.

As we watch the news coverage today, looking back on that day, I just remember my feeling that we really didn't know when the attacks would end and where they would happen. I remember such sorrow for the many many families and residents of these areas affected. I couldn't ever imagine this could have happened in our country but when I did see it happen, I was in disbelief. Katia was just a baby, a little over 1 1/2 years old. Then, as the country came together and so many united in prayer, I felt comfort.

Now, 5 years later, it seems a lot of that unity has again been lost. Sad.

When I think of Caringbridge, I think of UNITY. It gives so much comfort to so many in need of and willing to give prayers. So many check on these Caringbridge sites that aren't directly affected by cancer. I am in awe of that!!

I will leave the song playing on Katia's page for a bit before I change it back to "Katia's Song" by Myron. I believe in unity and hope. This song was written at a point of uncertainty for me but Myron was inspired and sat down to write the song on that day. When I hear it, I get a sense of pride and appreciation.

Please keep Christi and her family in your prayers as her health continues to worsen. Her pain is more controlled by more pain medicine but this also leaves her much more sedated.

Also for Angel Bailee's Family as they plan her services that will take place over the next few days.

Little Nicholas is also facing much more disease spread and pain and is also needing highly increased doses of pain medication. He and his family could use your prayers.

Thank you for your continued prayers for Katia. She is our little miracle and that is due to prayers, your prayers. I am also grateful to Caringbridge to be able to share her life and story with each of you.

Love, Tracy











September 9, 2006 5:44 PM

I just wanted to jump on here quickly. I know I haven't shared any sentences lately but Katia is doing very well with her sentences and is doing well at recognizing her spelling words. She isn't able to write them from memory other than the word "I" and "A" basically and words like "can", "pan" and words ending in "an". For the most part, I let her look at her spelling list in order to put sentences together. That works for her so we are going to do it "her way" for now.

I have been "mentally worn down" but I know God has a plan with each day. I look at Katia as a miracle but I also know how quickly things can change in our world. I have seen how things can not just suddenly change in Katia but anyone in our family. I have learned a lot of appreciation over the last years.

On August 1, 2006 a little girl, Hannah lost her daddy due to a massive heart attack. No warnings. Hannah had been battling MDS since since 2003.

Another little girl, Molly lost her daddy on March 29, 2005. He was on his way to work when a sudden tragedy happened. She has been fighting leukemia ALL since 2003.

I am certainly not the kind of person to live each day in fear but I have learned more patience (although my kids may not always agree with me on that) and I have learned how each person in our family really makes our "circle" complete.

A long time ago (long long time ago), when Sharayah was maybe 2 years old, a friend of mine gave me a book called "Making Memories". It was about projects you do with your children to share moments and form memories. I am not really an "arts and crafts" type of person but in reading through the book, I learned a lot of ways to creatively teach my children how to not only make memories but appreciate the idea of making those memories at the moment. I always tell them, "It is the dumb little moments like goofing around or being bored and silly around the house that you will remember someday when you are on your own." I think it is the simple things.

Obviously a trip to Disney World is memorable!!! Katia is very much looking forward to getting to go again like we did in 2002. But there are many times when we "bond" or "make memories" as a family or between siblings or spouses, that we aren't even realizing how monumental these times may be later down the road.

Pictures a big way for me to not only MAKE MEMORIES but also SHARE MEMORIES and be able to look back on. I take hundreds of pictures a month, or more. But my mind holds many many memories that I will always treasure and carry with me.

So, make memories. Simple memories. Have a family dinner and share your thoughts together. Play a board game. Simple things:)

Our new thing (Sharayah, Tatiana and myself mainly) is playing Mancala, a marble game. Katia is trying to learn the game so she can play her own strategy. It is fun and we can chit chat while we play. Kids always crave attention from their parents even if they say they don't...

Lots of love,

Tracy










September 7, 2006 10:20 AM
WBC 4.97
HGB 13.9
PLT 330
Weight 17.8kg (39 pounds)
Height 95.7cm (3'1")
IGG (not in yet...)

Those counts are from yesterday. They are all good, even the platelets are back down into the normal range. They have had us concerned.

Wow, I come here this morning still in shock over Bailee's Passing. Bailee had been fighting this cancer battle a bit longer than Katia and she had been through so much but always seemed to pull through, as I imagined she would this time also. I just feel so bad for her family and, at the same time, I pray we are never ever in that position.

The very sad thing about another child passing is it brings back our own fears for Katia and I hate that!! I mean we know (in the back of our minds) that things can always suddenly change. They have a few times, with Katia. It is just one of those things that we try to not think about and more just count daily blessings. Fevers are one thing that always scares me with Katia because a few times, those fevers have just shot up so high and put her life in sudden danger. For the most part with Katia, I look at things as "part of the battle" but some things do really scare me and catch me off guard. I always try to remain positive and also objective when it comes to her and this website. I want her to be an encouragement to others and a beacon of hope.

Not too long ago, Katia somehow discovered that "leukemia" is "cancer" so we were on our way to clinic (a great time for open conversation between the two of us) and she said, "Leukemia is cancer and cancer makes people die?" I was pretty shocked but I shouldn't have been because she has been surrounded by this for over 4 years now. I have always been grateful for her age as she is easily distracted and her fear doesn't last long for the most part. I told her that she had new blood and that killed her leukemia. But, she also knows Bailee had new blood and many others. For the most part, I don't share with Katia when other kids pass away. I don't want her to have that fear. But, I learned about Bailee last night during dinner and was just shocked. I said, "Oh my gosh, Bailee passed?" I immediately went to her site and then came on Katia's site to update as well as the other sites. Katia later came to me and asked me, "Are you okay?" I told her yes and I was making light conversation with her about different things, all the while my heart was just breaking. She asked me again, "Are you okay?" She can tell when I am just not "me". I assured her and sent her off to go find out what the kids were doing.

I finished updating and I went to go take a shower. I just felt so sad and yet so angry!!! I hate feeling anger. I try to tell myself, "Things happen for a reason." This is one of those things I just really can't find the reasoning behind. When I take a shower, it gives me a chance to cry, question, and just pray for answers or strength. I hate for Katia to see me upset or angered.

I am typically a "Control Freak" but through this, I have learned I don't control a lot of things. Only God can. God can control everything. Katia's health as well as the health of myself and the rest of my family is not so much in my control. We can always watch what we eat, not put bad things into our bodies and just do the smart things we know to do to stay healthy but ultimately, we aren't in total control. That scares me when it comes to Katia. I know I can do everything possible to protect her, give her the correct medicines, take her to clinic, keep up with her counts, her temperatures and observe her for changes. But, I don't control her health overall. I hate that! I also hate cancer!! I hate the way it rips families apart, the way it makes people suffer in pain, the way it makes people worry, the way it seems to dodge medicine and treatments.

I wasn't going to even update today but this is just what I am feeling. I know many people ask "Why does this have to happen to people?" I don't know. I don't think I will ever really understand.

Please pray for Nicholas as he is going through a lot of pain and will soon be nearing the end of his cancer journey.

Please pray for Christi T. as she is facing such unbearable pain along with fear. Her family is just beside themselves with worry but also with love and compassion for their dear daughter who has fought Neuroblastoma so hard!

Please pray for Matty as he is having a lot of pain in his wrist and has not gotten any sleep even though he is getting extra pain medicines. Pray they can find a way to help his wrist and save his arm.


Please pray for Katia that she can beat her leukemia and live a long, happy life. Please pray that someday, she can look back and understand all she overcame but for now, pray that she doesn't face fear. I just want her to have her innocent look at life and enjoy each day.

Also I ask you pray for a silent prayer request. This is for a family. Their site has not been updated with the latest information but I will post more with their site information when it is. Please just pray for the family.

Love, Tracy


*******

September 6, 2006 7:28PM

Please keep Bailee's Family in your prayers at this time. She passed away this afternoon surrounded by her family and friends. I am totally shocked by this actually but I wanted to update on here as I can't imagine how shocked her family is at this time.

I will update more tomorrow on Katia. Please just keep Bailee's family in your prayers as there is now another Angel in Heaven.

Love, Tracy








September 5, 2006 9:06 PM
2nd Update Today

I just wanted to jump on here and add this picture. With Florida Summer Storms come some very beautiful sunsets!! This is over "Katia's Playhouse" 3 days ago.


Sunset!!


Love, Tracy


********

September 5, 2006 9:15 AM

Hello:)

I will update a bit more later in the day but I wanted to note some prayer requests. I will fill them in above in the section later also.

Please pray for Christi T. as she is enduring so much pain. She is such a beautiful spirit so of course she is still smiling when she can and just the beautiful loving little girl that she has always been.

Also for the family of Angel Cameron D. as they are planning services for their sweet boy. No parent should have to ever do this. Each person is in need of different prayers but just please keep this entire family and group of friends in your prayers.

I was shocked yesterday as I was working on the computer when I clicked over to AOL's homepage and saw that The Crocodile Hunter's Steve Irwin had passed away. I mean so many of us have watched him on a near daily basis and he brought so much to many lives. I can't imagine how his family is feeling. Before I told Sharayah and Tatiana, I had to actually go read some of the articles and click on "Animal Planet Channel" to even check. I wasn't sure I was reading correctly. So, this is another family, and a huge audience to keep in your prayers.

I will update more later on Ms. Katia. She is glad to have her DADDY back home!! She is doing well with her school work although we are behind by one day on our sentences. She is really trying so very hard and she uses her eraser a LOT to make sure her letters are just right. We go over her spelling words each day via flash cards and other than a few hesitations, she is getting them all right without any help. As long as we go over her work daily, she is retaining it well and isn't getting over stressed by it. She enjoys "school time". When she feels "done", we put everything away and we are done:)

Lots of love, Tracy



*********

September 3, 2006 10:30 AM

Angel Cameron passed away last night. Please keep his family in your prayers.

Please keep Christi T. in your prayers as the latest update is just heartbreaking. More news is in the prayer request section above but her parents keep her page very updated throughout the day.

So many need your prayers.



Love, Tracy








September 2, 2006 5:30 PM

First, please keep Cameron D. in your prayers as he is running a very high temperature and is not really responsive. Please go by his site and leave a message of encouragement as I am sure his family will be very appreciative.

Today has not brought too much rain. We did have some earlier in the day but right now the sun is shining. Katia is having a good day. She did homework today (I know it is the weekend) and has been accomplishing much more than she used to. Today she got to show Sharayah and Tatiana more of her abilities as she usually only does school work when they are at school. She beams with pride when she knows they are watching:)

Thank you so much for checking in:)

Love, Tracy

PS No sentence yet today. Katia says she has to THINK about it.










September 1, 2006 5:30 PM

It has rained so much here...

As soon as the sun comes out and we say, "Oh the sun is out, it goes away and more rain comes down, hard rain and lots and lots of it!!

I know we Floridians have our drought seasons and then our hurricane seasons but these are just bonus storms thrown in between.

I am very thankful Ernesto passed us by though. I feel bad for all the rain it is dumping wherever it may not be needed. Sometimes, the amount of rain is worse than the winds.

Okay, on to Katia.

Sentences for the last 2 days...

August 31st

Katia: "HAPE BRTHDA BRN ST."
Sentence: "Happy Birthday Brown Shirt!"

September 1st
Katia: "I MS DADY"
Sentence: "I miss Daddy."

Today, Katia has done quite a bit of school work. As you know we have been having Insurance Issues. What you may not know, is we were basically getting to a state of panic. Things weren't looking good for Katia's coverage/cost of coverage.

Prayers worked! Things seem to be working out better than we thought they would. It will still mean more "out of pocket" but she has coverage and we will see how smoothly the transition will happen over the next few weeks or so.

I really believe, "Everything happens for a reason." Although there are a LOT of things I don't understand the reasoning.

So, to get the day to pass, we did school work.

Katia was able to do more on her spelling list and she is so happy with herself when she recognizes a word. We have flash cards. It is so cute to see her just so happy over her accomplishements! It always lightens my heart:)

I know I am long-winded a lot and I appreciate you taking the time to bare with me and read through my entries. I appreciate your prayers and for your continued interest in following Katia's journey.

I will have to teach Katia to type someday:)

Lots of love, Tracy









August 31, 2006 5:20 PM

Today has been a VERY RAINY DAY here. I mean seriously rainy! I am not sure if it had anything to do with TS Ernesto or not but it was a lot of rain with a lot of lightning and thunder. Our streets looked like rivers. It has stopped and the streets are draining, thank goodness.

Katia has had an okay day. She is not having a very good "butt day" but overall she seems to be happy and trying to play on and off between "taking small resting periods". She isn't sleeping really, just resting.

Somehow she said today was "Brown Shirt's Birthday." So, I had to make a card and Sharayah sang "Happy Birthday!" Although, it was given to her the day she was born (which I guess would make its birthday on her birthday, this is what she woke up today saying... so we went along with it.

School work? Today hasn't been a school work kind of day but she did go through her Spelling Word Flash Cards and she does pretty good at phonically sounding everything out. She doesn't really recognize the word, she more sounds it out and thinks about it and then she says the word. As far as her number flash cards, she is doing very well with the numbers 1-5,7 and 8. Other than that, they have slipped her mind. She says, "Oh, I must be getting old..."

On those lines, she has been also having quite a few "hot flashes" lately. It is possible that her hormones will be messed up by treatments although we haven't tested nor confirmed this but it is 2 new words in her vocabulary, "Hot flashes". If the girls turn off a fan or sit too close her, she says, "I am having Hot Flashes you know." It is another thing, we go along with. She does get pink and flushed looking so I will bring it up to her doctors. Somethings like this we have known could happen all along due to treatments and there really isn't much you can do but treat the symptoms. It is just one of those things.

We haven't done our "Sentence of the Day" yet. She is thinking about what she wants to say. My guess is it will have something to do with the famous brown shirt and its "birthday".

It also seems the insurance issue is not working out in Katia's favor so we are looking into other options at this time. I would go into more but it really wouldn't make a difference. All I can ask is that you pray for the situation. This is one of those times when I have to keep telling myself, "Everything happens for a reason..." I really have to believe that.

Okay, I do have something very positive to close out with! Three years ago at this time, we had just found out Katia had relapsed (August 26, 2003) and would need a Bone Marrow Transplant. We also knew that none of us matched and the possibility of finding her a match was a very very slim chance!! We were in a panic/do-whatever-we-have-to-do mode.

Here it is now, 3 years later!!! She has been through a lot over these last three years, chemo rounds, radiation, fungal infections, lung surgery, skin biopsies, numerous bone marrow aspirations and lumbar punctures, more blood and platelet transfusions than I can count, BONE MARROW TRANSPLANT, 9 month straight hospital stay, 11 months away from home, acute and chronic GVHD and more trips to the doctor than I could have imagined my whole family having in a few lifetimes. We have met many many wonderful friends and families during this time. The Katia Solomon Foundation was established and has become a 501 (c)(3). We have been able to help numerous family in many different ways via the foundation. Katia has been shown so much love and support and has been surrounded by a love I could never have imagined! Her curly hair is back IN FULL FORCE and she is in the 1st grade!!

So, thank you for your prayers and for being "here" for Katia and our family:)

We love you!

Love, Tracy










August 30, 2006 5:30 PM
NEW PICTURES ADDED

Hello:)

As you can see, we did some cooking today. Katia had school this morning and I had promised we would cook something when she was done.

We made baleadas which is one of her favorite things to make and then eat. She said, "This is like the Good Ole Days!" It is something she likes to do when it is just her and I at home alone.

We had fun and basically, they are all gone now!

Katia has become a bit more "pink" on her arms, eyes and body so it may or may not be GVHD. Her last FK506 level looked good and we aren't due to go in until next week to recheck her counts. Please continue to pray for the Insurance issues going on as they continue. Things are "pending" and they need to be finalized.

Katia's belly is doing much better and her "bottom pain" is improving as she continues on the Vancomycin. She calls them her "butt pills" so she definitely knows why she is on them.

She has been sleeping with me lately and a few times during the night she will get up and just sit there. She kind of looks around, looks at me (she doesn't know I am watching her) and then she will lean over, kiss me and snuggle back up with brown shirt to go back to sleep. I am a VERY light sleeper so anytime she moves or makes a noise, I hear her. She woke up this morning giggling and I guess she woke herself up doing this. She sat up and asked, "Why am I laughing?" I asked her if she remembered what she was dreaming but she didn't.

Sentence Time:)

August 29th

Katia: "I LV U"
Sentence: "I love you."

She tried to get away with not writing the word "love" but just drawing a heart:)

August 30th

Katia: "If I W S afe I wd swem."
Sentence: "If I was a fish, I would swim."


This afternoon, she was working on writing her spelling words and she said, "When will I know ALL the words?"

Katia is really missing Myron but he will be home soon. He has been doing well.

I have been checking on the Prayer Requests today and so many prayers are needed! I have tried to update a few of them.

Please continue your prayers for Katia and the many others in need of prayers.

Love, Tracy









August 29, 2006 1:16 PM

First, I ask that you see the updated prayer request and I will keep trying to update them throughout the day. Cameron D., Christi T., Jake R., Bailee, and many are in need of prayers right now.

Katia has two new sentences:)

August 27th

Katia: "I W TRN OFF DE LIT"
Sentence: "I will turn off the light."

(That came about because her eyes have been bothering her quite a bit so the house is staying pretty dark...)

August 28th

Katia: "I KN SEE SAM."
Sentence: "I can see Sam."

("See" and "Sam" are two of her spelling words, so she was working from her spelling list.)

She is doing well with these sentences.

She does seem to forget things from one day to the next including being able to read and spell her spelling words or write certain letters so we start by reviewing over letters, words and numbers and then we try to move forward a little bit. Katia gets very easily frusterated and has a VERY short attention span so the idea is to do a little bit each day as long as she is willing and able. She REALLY wants to do good so she tries to hold out as long as she can before she finally says she is ready to "take a rest". Also, she can come to me at any time and say she WANTS to do some school work and that works for her as well. She does get the urge to do school work on and off throughout the day so I try to take advantage of that.

Ms. Michelle has a LOT of patience and works very well with Katia. I can't tell you how much we appreciate Ms. Michelle as there aren't words to describe:) Thank you, Ms. Michelle!!

I also ask that you continue to pray about this insurance issue. I will go into more detail later but you can imagine how important Katia's health insurance is and how much difference it makes to how she is insured as to coverage, costs, copays, deductibles, etc. So, I just ask that you keep this in your prayers.

The threat of Tropical Storm Ernesto seems to be less of an issue for us right now if it stays on the path it seems to be going. The next 12 hours will tell us a lot. Of course, the storm is going to have some effect somewhere so I am sure many are watching the news to keep updated. In all fairness, nobody needs the bad weather these things can bring so it would be really nice if it would just head out to sea and get lost!

Again, thank you for your prayers and please continue to check back as I will update the prayer requests throughout the day as best I can.

Love, Tracy


***************

August 27, 2006 11:30 AM

First, I will give you Katia's sentence from yesterday.

August 26th "Sentence of the Day"

Katia: "I am mame bae."
Sentence: "I am Mommy's baby."

How true:)

Also, she had her very first spelling test last night. Her words were:

Me
Am
Sam
Ram

Results: 100 PERCENT CORRECT!!

She was pleased as could be!!

We are working on her school work a little each day. She has a VERY SMALL attention span but while she is focused, she is very focused:)

She thinks it is so neat that she is learning WORDS!!

She writes a lot of things with the letter or number facing the wrong direction or the letters in the wrong order but that is what erasers are for.

From watching a bit of the news today, it appears we may be having a hurricane headed our way. It still has time to change directions or lose/gain strength though so my prayer is that it just goes away. I don't want to say for it to head somewhere other than Florida (unless it just heads out into the water and skips land totally) but I know we have had more rain than we need already and we certainly don't need a hurricane right now. A lot depends on what it does over the next 48 hours I guess, how much it is given the chance to strengthen and/or change direction.

Well, Katia is telling me that she wants to do "something" so I should tend to her:) Maybe I can sneak in a few pictures today. She seems to be in a much more spunky mood:)

Love, Tracy







August 25, 2006 6:15 PM

Hello:)

Okay, first to catch you up on the "Sentence of the Day" in Katia's daily journals.

I will recap. The first part is Katia's writing, the second is what she says she is writing. If you are lost, you can read back in the journal history:)

August 21
Katia: "MI Me S M MI Dt!"
Sentence: "My monkey is from my daddy!"

August 22
Katia: "i lik ic km"
Sentence: "I like icecream."

August 23
Katia: "A BR HD HnE"
Sentence: "A bear had honey."

August 24
Katia: "i am katia"
Sentence: "I am Katia." (this is her FIRST REAL SENTENCE!!)

August 25
Katia: "i ma q owrt mised"
Sentence: "I am going to water my seed."

I think she will be a writer someday!! She does come up with good sentences:)

The word, "am" was one of her spelling words and she realized with using that word, she could make the sentence, "I am Katia." She was so happy!! She knew that was a good and complete sentence.

I enjoy seeing her sound things out and I am pretty good at translating what she is saying before she tells me. It also helps that I know what she is doing and thinking throughout the days so I kind of know what is on her mind.

She is also working very hard at writing her numbers from memory. She can see them and name them but it isn't too easy for me to say a number (or letter) and have her write it without looking at anything. She works very hard though and I can see her little mind thinking which is just very cute:) I am bias though.

Anyway, I wanted to share her progress with you. She seems to be improving with her "poopies" too. They still hurt a lot but she isn't having as many bowel movements during the day so it gives her more of a break and allows her to feel better more.

We are having some serious issues with Katia's health insurance so please pray we can get this straightened out. As you can imagine, it is a very important and stressful issue.

Thank you for your prayers.

I will update tomorrow with the newest sentence:)

Love, Tracy





**************

August 24, 2006 5:54 PM

First, I have added/updated a few of the prayer requests above. I appreciate you following these prayer requests. Prayers are always helpful in many ways.

Secondly, that brings me to another Prayer Request. This is a silent prayer request.

Also, I will answer let you know the answer regarding what Katia's sentence says.

"A BR HD HNE."
"A bear had honey."

She is enjoying this:)

Love, Tracy







August 24, 2006 12:17 PM

Answer time!

"Mi Me S M Mi Dt!"
"My monkey is from my daddy!"

That is talking about that monkey in the picture at the top. He gave it to her before he left on his trip:)


"I lik ic km."
"I like icecream."

That was because we had icecream for my birthday the previous day.

I get the same chances at figuring out what her sentence says and she thinks it is hilarious when I guess the wrong thing. Now, I am learning to think, "What did she do yesterday?"

Okay, so here is her sentence from yesterday that she wrote last night.

"A BR HD HNE"

Mind you, Sharayah and Tatiana are having to play this guessing game too. They think it is a great idea though. Anything that helps Katia communicate better is a big plus for us. I had volumes of journals when I was growing up.

Actually, here is the story behind my journals (since you asked).

In our house, it was my dad, my sister (who is 1 year older than me) and myself. Although my kids like to believe I was PERFECT, I did get into trouble. So, what our punishment was if we got into trouble was WRITING. No joke. We would get a specific amount of pages to write in our journal (BIG SPIRAL LEAF NOTEBOOKS). We would have to basically write about what we were in trouble for. That is what we were SUPPOSED to write. I turned it into basically a diary since I seemed to be writing in it daily or even a few times a day which is why I had VOLUMES!! The good thing about this idea of "punishment" is if anyone was mad, it gave everytime to cool down. Sometimes, LOTS of time:)

Needless to say, it helped me be able to write and express my thoughts easier and it definitely helped me in school. One of my senior papers was to pick an object and write 1000 word essay about it. My object? A "Hershey's Kiss". I had no problem finding 1000 words to say about that!

My VOLUMES of journals were illustrated and I wish I still had them today. First, it would prove that I didn't get into BIG trouble, just a lot of trouble for little things. But, also, I would love to have them to look back on. Sadly, our family home was struck by lightening and burnt to the ground on August 12, 1985 when I was about to turn 16. I stopped writing journals after that for a long time. I lost all my journals and most of our family pictures which I was big into photography. I have our family albums from the time my sister was a baby through me being maybe 11 but after that, the photo albums were in my bedroom which was burnt to ashes with nothing, absolutely nothing left.

Now I back all my pictures up in a few different ways and what journaling I do is basically on here so it is backed up also in a few ways in case this page ever just disappears.

Well, I have rambled but now you can see why I can be so long winded. I also type faster than I talk, maybe 120 wpm or so now.

Any guesses on the newest sentence?

"A BR HD HNE"

I will give the answer later in the day:)

Love, Tracy















August 23, 2006 6:30 PM

Well, I think I can safely say that Katia is feeling somewhat better. She says her bottom still hurts but not as bad:) That is a good thing. That alone can make my day!

Plus, she did some school work today and playing on the sofa. She has been extra tired lately but I think she was just run down from feeling bad. Hopefully the medicine is in effect and she will just keep on improving.

One of Katia's assignments this year is going to be a daily journal. The way it works is she writes a sentence by basically sounding out the words and writing the letters she hears. Her first sentence was

"Mi Me S M Mi Dt!"

Have any idea what that means?

The one from yesterday (she hasn't done today's yet) was

"I lik ic km."

Then she tells me what they say and I write the sentence out completely. She also draws a picture to go with her sentence.

I will let you know what they mean tomorrow:)

I think it is a great way for her to learn the sounds of the letters and put them together but also it will be nice to have it all in one journal so we can look back on her progress.

Lots of love,

Tracy








August 22, 2006 6:00 PM

WBC 4.43
HGB 13.2
PLT 506
Creatinine 0.4
Weight 16.8 kg (37 pounds)
Height 96cm (3'1")
FK506 13.6

Hello:)

We had a slightly busy day today but all is done now and we are getting ready to eat dinner.

Katia had a clinic appointment this morning for labs which went well. We discussed the fact she doesn't seem to be getting better with the C-Diff and is still having a lot of pain! So, they wanted to get another stool sample. Since Katia isn't a "poop-on-demand" kind of kid, we decided to go home, give it a try and take it back.

We got home, I did some house cleaning, she ate lunch and WE HAD OUR SAMPLE:) So, we went back to clinic to head it in. Two trips in one day. Katia slept both times, each way. I use the drives over there to kind of clear my mind and think about things I need to get done. Needless to say, my mind seems pretty sorted.

So, we have a plan for the Vanco to hopefully clear this up. It is a few days on a few days off kind of plan that will end near the end of September. If that doesn't seem to be working, there is another new medicine we can try.

A good question was asked about why Katia doesn't seem to grow. When she first started treatment back in 2002, she was just 2 1/2 years old with a VERY limited vocabulary. She now talks far beyond her years. It kind of depends who she is talking to. On one hand, she can be very shy and hard to understand. On the other hand, she can go on and on like a little adult and shows a great understanding for things far beyond her years.

As far as her height, she is 3 feet 1 inch tall. That is 4 inches taller than she was when she was diagnosed at age 2. For the most part, her growth has been slowed way down due to chemo, radiation and those lovely steroids. On the other hand, her weight goes up and down depending on the amount of steroids she is on. She is currently at 37 pounds. She kind of goes back and forth between 29 and 38 pounds depending on her dose of steroids and her appetite due to steroids or the lack of steroids. She wears 3T pants most of the time but her shirt size can go between 4T and size 6X depending on that little/big belly of hers. Katia has different sizes of clothes depending on what her body size is. She really hasn't outgrown anything since she was diagnosed which is good in some ways because she likes her little "Doctor Scrubs" and "Nurse Scrubs" and most of those are 2T and 3T.

She has however gotten quite a bit stronger over the past 2 years since transplant. I remember she used to have a hard time just stepping down onto the backporch which isn't a big step at all. Now she is pretty much able to get up and down from the sofa and the beds easy enough.

I know a lot of parents just starting out with having a child diagnosed seek out information and try to know what lies ahead for their child. I certainly did. I remember before Katia ever lost her hair the first time, I thought, "Maybe she won't lose her hair. It seems to be hanging on." Other parents and her doctors would say, "She is going to lose it." And she did. I remember before transplant, I would follow other kids and watch different kids going through transplant. They would get so weak afterwards that they could barely stand up. They looked so frail. I would look at Katia and she just looked like she would get through transplant and keep her strength. She didn't.

Treatments really take a toll on the body.

BUT, I also would have never guessed how positive and "tough" Katia would be through all she has been through. She is VERY DETERMINED and no matter how bad she feels, she can usually find something to smile about and be happy about. She doesn't see herself as any different really. I think she realizes other kids her age can ride bikes and run and she sees them go to school but she doesn't really envy them. She just goes on day to day. When I see that, I just know how much God has held her hand throughout everything. He has held her hand and ours.

When I visit other sites and meet other families at the hospital, I can't really say I know what they are going through because everyone is different. I wish nobody ever had to go through a sickness with their child, family member or friend. I do however appreciate the strength and encouragment I have received and learned from others.

Hopefully by sharing Katia's story, her ongoing journey, it will help someone else. I know by sharing her story, it has helped me.

Thank you:)

Love, Tracy







Katia in her Essrig Elementary Shirt
This is the school she would attend if not Homebound.




August 21, 2006 10:15 AM

Please keep Ellis and his family in your prayers as the last 24 hours have been very difficult for him. Prayers are needed.

Also, please keep Philip in your prayers as he faces surgery today along with a very critical update about his prognosis.

I will update more later.

Katia is planning on school today but her bottom isn't feeling well at all. We still have another hour or so before Ms. Michelle arrives so Katia is resting and watching TV. She is dressed in her school shirt so I can try to get a picture today as well.

Love, Tracy



***********

August 20, 2006 6:15 PM

Hello:)

I just wanted to jump on here quickly. I was going to try to update the picture today but Katia still isn't feeling well so maybe tomorrow. She got some school shirts from the elementary school she would be attending if she wasn't homebound. I want to put a picture on here with her new school shirts.

Myron left today... he should be there by now so we should be hearing from him. I do know he landed safely though thanks to the Internet and Flight Tracking:)

Our plan is to have school tomorrow with Ms. Michelle. Katia says she will feel up to it and she is eager to show Ms. Michelle her homework. She has done some of her writing and math work. Her favorite is still the math because she says the letters are harder to write. She pays such close attention when she is doing her school work.

We go to clinic on Tuesday, mainly to check Katia's FK506 level and labs just to see that we have her medicines for GVHD where we want them. If she still isn't feeling any better as far as the C-Diff, we will discuss that then also. I feel so bad for her. Right now however, she is dressed up in a little costume and sitting on the rocking chair looking out the front window.

Tomorrow is my birthday so the girls are planning something? Sharayah and Tatiana are becoming really great Chefs so I am sure it has something to do with dinner. Katia is sworn to secrecy. She just nods her head at me if I ask her what they are planning:) SHE WON'T GIVE IN even with a bribe:)

Please keep little Jake R. in your prayers as the recent scans weren't what they were hoping.

Thank you for checking in.

Love, Tracy







August 19, 2006 9:30 PM

Hello.

Just wanted to give a quick update. Katia did start the vancomycin yesterday but today hasn't really shown too much improvement. She felt good for a little while but for the afternoon and evening, she is still fighting with a lot of pain. I told her to pray that tomorrow is better. I hope it will be. I think the medicine will be more effective by tomorrow.

Thank you for your prayers.

So many are in need of prayers right now. I will try to update more of the prayer requests tomorrow.

Love, Tracy








August 18, 2006 9:00 PM
2nd Update today...

Katia started back on the Vancomycin for her C-Diff. This time, we will do it 3 times a day for a month and see if we can clear this up completely.

She has felt awful for the day and I told her that she will be feeling a lot better in the next 24-48 hours hopefully. I feel so bad to see her in so much pain. HOWEVER, today I was picking up something off the bed and I hurt my back. I must have said, "Ouch" or something and she (in the midst of her pain) asked if I was okay. About an hour later I was sitting next to her and letting her lay on me and she started rubbing my hand and asked if I felt better. She is so sweet and has such sympathy for others going through not feeling well. She is a blessing each and everyday and never ceases to amaze me.

Thank you for your prayers. I told Katia people were praying for her "booty" to feel better. She is okay with that:)

Love, Tracy







August 18, 2006 11:27 AM

Well Katia should be doing school right now with Ms. Michelle but we have postponed till Monday. Katia's bottom isn't feeling at all well and there are a few other issues going on. So, we will try again on Monday.

Her stool did come back C-Diff positive. That was pretty quick for it to grow. So, her doctors are talking to Infectious Disease to see if there is something else we can do since she has a problem with it continuing to come right back. The last course of medicine was longer than normal so that didn't work. They are also running more tests on the stools to see if anything else grows positive.

Last night, Katia had one of the most painful bowel movements I have ever seen her have. Now, we have been through this quite a bit since she was diagnosed. I would imagine she has had C-Diff a lot more than one could imagine even with all the treatments she has been through. I can pretty well diagnose it just by seeing it and smelling it. THIS however was far worse! I won't get into details as someday she WILL BE READING this but it left her shaking in pain for about 10 minutes before she could calm back down. We all feel so bad for her and there is very little we can do. I just wrapped her up in her blanky and cuddled her with the brown shirt.

Katia has been through so much in her 6 1/2 years of life but one thing that is a blessing about her being so young is being able to distract her. As soon as she feels better, she wants to do something. As an adult, I think we would think about the fact the pain is going to come back and dwell on how we don't want it to come back. I know I would. She, however tries to be happy and play when she is feeling well, as soon as she starts feeling better.

Some good news is that her IGG level (antibody level) seems to be holding on longer than it was. The level from the other day was 821. We don't have to do an IVIG transfusion until it is below 500. I am sure the ending of the Pentostatin treatments has something to do with that but it is very nice to see that level holding its own a bit.

Thank you for your prayers. I guess to do the prayer is for Katia's bottom to feel better.

Love, Tracy








August 17, 2006 2:40 PM

Wow, no update yesterday?

The new picture at the top and the one in the photo album was just taken about 5 minutes ago (hot off the press). Let me explain the picture. I sat down to do an update. You know how things get "too quiet". Well, I thought, "I don't hear Katia." So, I turned around and that was her right behind me. She was just staring at me with that little smirk. So, I had to take her picture:) She likes to just sit and watch me do things or watch me watching TV. I love those eyes. They are always so full of love and admiration and it just makes me want to pick her up and give her a big HUG:)

We made a quick trip to clinic today to hand in a lovely stool specimen since Katia has been having so much pain again. My thought, the C-Diff is back.

It seems we will have to be without Myron around the house for a bit. He needs to make a quick trip home to the island (Roatan-off the coast of Honduras) to help his parents with some family matters. Please pray for his safety in travel and a safe trip home. He hasn't been to the island in over 3 years so it will give him a chance to see family as well. We are going to certainly miss him. Hopefully all will go well with Katia and we won't have any admits while he is gone. That is our prayer. She has been keeping us on our toes lately with little fevers, pains and this recent GVHD flare up. Hopefully we have her medicines at the right levels now and she will start improving. Her face already appears to be a bit better. Her eyes have been VERY sensitive but seem to also be a bit better today. She does keep turning off lights that I turn on. She says they hurt her eyes. I keep the blinds closed in the house for the most part when her eyes bother her. Right now, she is laying down with the brown shirt wrapped around her whole head. Only her nose and mouth are sticking out. I think she is going to fall asleep but she says she isn't tired, just resting.

Tomorrow is a planned school day if all goes well.

Please keep Bailee's (link above) brother Michael in your prayers as he is in the hospital right now due to a cyst that seems to be infected and causing him trouble.

Also, please keep our friend Mark D. in your prayers. His recent test show blast cells (cancer cells) in his marrow and he will now need a bone marrow transplant. They are putting his name into the registry as well as testing his family memebers. He has been fighting cancer since 2001.

Thank you so much for your prayers and for checking in.

I better finish as we are about to get another (these are daily) storm. Lots of thunder and lightning and a ton of rain!!

Also, CDs and Bracelets go out next week so keep an eye on your mail for those of you that have ordered:)

Love, Tracy


********

August 15, 2006 1:20 PM
WBC 3.99
HGB 11.7
PLT 426
ANC 2400
IGG 821
FK506 8.6

Hello:)

We are back from clinic and Katia remains fever free!

She is having some bowel pains and stomach pains again so we are going to send some poopies to see if the C-Diff has returned. She is VERY happy (as are we) that she is fever free:)

Right now she is watching Barney and eating and then her plan is to do some math work.

We still have some adjusting to do to some of her medicines but the GVHD seems to be staying as is. Her cheeks and lips are quite pink looking (that isn't lipstick in the top picture) but her mouth is staying about the same inside and her hips and knees have remained the same. Her eyes are another story. They are bothering her but she usually deals with the pain by "resting them" for about an hour (nap) or by covering them up with the brown shirt.

I have to share a little story with you. Katia is 6 1/2 years old. She may be the size of a 3 year old in a lot of ways but she is a little teenager in a lot of other ways (seeing she has teen sisters). Today, I got her clothes out to get her dressed for clinic. I pulled out a very cute skort with a blue shirt. She picked it up and decided to try to find herself something to wear so she was digging through the drawers that Sharayah just so nicely organized yesterday. Anyway, after some huffing and puffing, she informs me, "These are baby clothes!" I had to laugh because of the way she said it. Anyway, I told her they aren't baby clothes. They are "cute". That was not the word she wanted to hear. Then she starts looking at the tags inside one after the other, saying... "Baby", "Baby", "Baby"... until she finally just shut the drawer, sighed and asked me to help her get dressed so we could go. I guess she just had her little moment and then dropped it.

On the way to clinic she asked, "Why do you say I am CUTE?" This required some fast thinking on my part as she had just been chattering about something totally different. I told her she is CUTE because she is still small enough to pick up, squeeze, cuddle, hug and that she is "Mommy's Baby"!! She was happy with that explination (which is all true).

I am sure this is an unfinished topic though which will probably come up at dinner or the next time someone says she looks cute but for now she is watching BARNEY, eating ANIMAL CRACKERS, and curled up with her brown shirt. That is CUTE to me:)

Anyway I had to share that. A lot of you have followed Katia since she was just TWO years old and soon, she will be SEVEN years old!!! Hard to believe, right?

Lots of love, Tracy








August 14, 2006 6:00 PM
3rd Update Today


First, please pray for our friend Mitch's family. He was a childhood friend of Myron's and passed away today after battling leukemia AML for a few years. He and Myron grew up together and Mitch will be very very missed. He lived in Honduras but had hopes of coming to the states, to Duke University, for transplant but his health suddenly took a turn for the worse and he passed away this morning.

As far as Katia, your prayers are working. She is a cool 36.9 right now. She did get up to 38.0 a few times today but it would come right back down. The reason we worry and have to stay on top of her fevers so much is because of all the immunosuppressing drugs she is on. Really, she shouldn't be able to run a fever so when she does, it says something is going on and her body doesn't know what to do about it. Like I explained the other day, although she has White Blood Cells, they aren't very good at reacting. Quick lesson on White Blood Cells can be found HERE. I really liked the way they are explained in this. So, although her fever is gone, something is going on and the fever will probably continue to come and go until we find out what is causing it and treat it. We go to clinic tomorrow.

We had a chance to go through Katia's school books and her favorite ones are MATH! She even did a few pages in one of the workbooks. She loves workbooks! Katia is able to recognize nearly all 26 letters now, both in upper case and lower case and pretty well knows how to count to 13 and recognize the numbers up to 11. I have a feeling, she is going to really learn a LOT this year if she can just stay healthy. She is VERY EAGER to learn and she gets really happy when she "knows things".

Well, again thank you for your prayers. I wanted to get on here and let you know they are working:)

Lots of love, Tracy







August 14, 2006 2:25 PM
2nd Update Today

Still here:)

Her temperature is just going up and down. It did get up to 38.0 but it soon went right back down. We can't do Tylenol and Motrin but it is going up and down on its own right now. Just like Katia, her temperature has its own mind.

We did have Ms. Michelle here for a bit today. Katia got her new school books and she really thinks they are nice. They are very colorful workbooks. There is a new reading program we are going to try also.

Katia started her morning feeling bad on the couch but she has eaten, taken her medicines and is drinking good so please just pray the fever stays away or whatever is causing it will go away even better.

Lots of love, Tracy

and Katia...








August 14, 2006 9:40 AM

Today is planned to be the day Katia starts her 1st Grade with Ms. Michelle. However, it seems Katia isn't feeling well at all. She is running a low temperature of 37.7 and it is going up and down to 37.8.

She is flopped out on the sofa, half dressed for school with a very bad belly ache. So, please pray she starts improving. I put a call in to her doctor and we are going to just keep an eye on her to see if she needs to come in (38.0) or not. My plan is that Ms. Michelle is due to come here around 11:30 and unless we are headed for an admit, I would like to see her come over and at least organize our thoughts on this school year and give Katia a chance to perk up if she will. I know if she starts feeling well later in the day and had already called off school, she will be upset with herself.

Please pray no admits are necessary. There are a few things going on here right now that we really need to be home. I will share that with you later.

Also, please keep Kody in your prayers as they are trying to find out what is going on with his head changing around. I know they could use your prayers as well.

I will update if I see we are headed in or if there are any GOOD changes as well:)

Love, Tracy








August 11, 2006 12:04 PM

Hello:)

I took Katia out for a little spin in the car first thing this morning. I think she thought she was going somewhere, a surprise of some sort BUT we just took a spin. I took her past the schools where Sharayah and Tatiana go so she could see the buildings. She thinks one looks like a mall and the other looks like a prison:)

Anyway, she is feeling pretty good today. Eyes are the biggest discomfort for her right now. I hope going up on her steroids and FK506 will snap her GVHD back under control so she can start school on Monday feeling better. She is very very eager to start. She is always eager to please Ms. Michelle.

I have a few silent prayer request for others and also a prayer request for our family. I am not going to into any details but I do ask your prayers.

Also, Estephany should be having a bone marrow aspirate coming up at the end of this month and if all looks good, she will probably get the flag to return home to Honduras. She has been looking very well and staying healthy. A lot went into getting her here and getting her a chance at having a bone marrow transplant. Between The Katia Solomon Foundation, All Children's Hospital-St. Pete, Cincinnati Children's Hospital and just so many local businesses, friends and prayers, she literally is a walking miracle. Just around this time last year was when our family started helping with Estephany and so much has happened since!!

Another young lady we are working with that I mentioned, Yadira, is currently still trying to find out if she has a sibbling match for transplant but she is also looking to move with her sister out of state. It will be good for her to be around her family so that she and her little boy can have help and Yadira can also be taken care of on the days she is feeling so sickly. Currently we are putting together some help for her travel as well as testing another sibling for a possible match.

I got an email, I have gotten a few, as to not so much WHY but HOW we are able to focus on others while we are still going through so much with Katia. I would have to say we are driven by God and also the fact that we know what it feels like to need help. We know what it feels like when you just don't know what to do next or who to turn to for answers. The reason KSF was started was because we were so touched by how others helped us when we were desperately trying to find Katia a match for transplant. We knew we couldn't do that alone and nobody should have to.

Katia is 2 1/2 years out of transplant and as anyone who has faced a family member with cancer or their own fight with cancer, you know the worry is always there that it could return. We also deal with a lot of the side effects Katia has had from her prior treatments, transplant and ongoing treatments. We struggle both financially and emotionally on a daily basis. BUT, we know that we could not have gone through this alone. We know Katia is a miracle and through her fight, she has helped others and reached others that may not have known about her disease and many others like her. God gave us Katia for a reason. I can think of a TON of reasons but I am sure there are more than I can even think of. So, we want to make sure we allow Katia's life and experience to continue making a difference.

I appreciate your kind guestbook entries sharing how your life has been touched. They really warm our hearts. I appreciate your emails. I appreciate your sending Prayer Requests to me. I appreciate your love and concern for Katia and others. I appreciate your passing along Katia's page and story in hopes that more will get involved in registering as marrow donors, donating blood products, word of mouth, etc.

Basically, WE appreciate YOU:)

Katia is sitting here thinking those feet have been on her page long enough. For someone who asked, those are KIDS' Size 9. Everytime I see them on the screen, I feel like my monitor should be cleaned:) So, we will work on some new pictures over the weekend. I guess her face will get puffy again from going up on the steroids but hopefully it will clear up quickly. Katia is still small enough to just scoop up and smother her with little kisses so I think I am going to go do that when I finish. We both love it!

Lots of love, Tracy








August 10, 2006 6:00 PM

WBC 6.32
HGB 10.9
PLT 486
ANC 5100

Hello:)

We had a trip over to clinic today and the decision right now is to go back up on the steroids. Katia still just has the GVHD showing mainly on her cheeks and arms. Her eyes are irritated but they don't look as bad as they have in the past. Her fingers don't look as bad as they have in the past and her mouth doesn't look as bad as it has in the past.

We are waiting for the results back from the FK506 so we know what we need to change that to. We have been trying to keep her level around 10 but we may try to keep it a bit higher to suppress her immune system even more to hold back the GVHD. Hopefully these measures will work without having to add anything new.

Her labs look a bit better in the fact that the HGB and PLT aren't over the top high and the WBC is more in a normal range. Her WBC are mainly made up of neutrophils so those are basically a type of White Blood Cell that reacts to infection. The reason she is unable to go places is because her T-Cell and B-Cells just have no antibodies or memory so they aren't there to protect her from things she may be exposed to. She still has not redone any of her immunizations so she has none of that protection either. Basically the ANC is kind of a "fake" number in Katia's sake because although it looks pretty good, the cells making it up "aren't so smart" (that is how I explain it to Katia). Therefore her immune system goes into a frenzy if she is exposed to anything and just throws whatever cells it wants to try to attack sickness (in her case being neutrophils). Now that I have bored you beyond belief, I will say that Katia has been in a very happy mood today:)

She is eagerly awaiting school on Monday. Her teacher should be here around 11:30 on school days which are set for Mondays and Fridays right now. We haven't decided if we are going to have uniforms this year. That is still being decided. Of course her uniforms from last year still fit but Katia says they are uncomfortable. My idea is that a uniform puts her mind (and body) in "school mode". If she had her way, she would be in jammies all day, everyday but who wouldn't:)

Well, it is dinner time and tonight is spaghetti so Katia is buzzing around here waiting for dinner. The increase in steroids again means an increase in appetite but we hadn't gotten too far down in steroids yet so it may not show too much of a difference. I have a feeling we will not try to wean them for quite some time until we feel more positive that her GVHD won't flare up.

I have a family I want you to pray for. The family of Hannah. Hannah has been battling leukemia since 2003. Her family has been by her side along the journey. On August 1, 2006, her daddy suddenly passed away due to a massive heart attack. They had no idea he had any problems. Please keep this family in your prayers at this time. He left behind a wife and his 2 beautiful children.

Lots of love, Tracy








August 9, 2006 1:00 PM
PLEASE SEE UPDATED PRAYER REQUESTS


Well, it does appear Katia's GVHD is again flaring back up. It hasn't gotten out of control yet so that is good.

We go in tomorrow for labs and the idea is to possibly raise the dose of FK506 to keep that level higher. That is one of her immunosuppressing meds. The other thing is to bring up her steroid dose again. If we can manage it between bringing those two medicines up, we can still stay away from the Pentostatin or the new treatments.

Mainly it is effecting her cheeks, eyes and arms right now. Her eyes are REALLY bothering her again for the last two days so I imagine her corneas are being bothered more.

She also finished her antibiotics for her C-Diff so we need to take in some stool for a very lucky lab guy and see if her C-Diff is totally cleared up. It definitely made her feel better with her bowel movements and belly cramps now that it appears to be cleared up but C-Diff is very tricky and can just come right back after hiding out for a while.

Not much else is up other than that. I guess that is enough for now though.

Lots of love,

Tracy




****

August 8, 2006 2:00 PM

I have been following the story of the Herrin Twins and how their surgeries went yesterday and today. Up in the prayer request section, there is a link to some video coverage of their story. Please continue to pray for their recovery.

How is Katia today? Well, a little pink. I am not sure what to really make of this but I am really praying it is not the GVHD flaring up. I would like to see it stay away. I know all of us would. Her cheeks, eye lids, and arms mainly are showing pinkness again. I will update with any changes.

Also, the "I Still Dream About You" Audio CD is available over on the site now. The CD does not include the slideshow. It is a single CD with the song. Also, on the page, more pictures are getting added to the slide show little by little.

Katia likes your comments on her feet:) You are really making her day. Of course, I add a little drama when reading the comments to her.

Her teacher came by today to get her school papers signed and if all goes well, Katia starts her FIRST GRADE on Monday. The goal? Reading! Over the summer we have worked on the alphabet and Katia being able to recognize all the letters both lower case and upper case. She does quite well other than the u, v and w mainly. Also, she is able to recognize the numbers 1-14 and we are working on 15-20 right now. She can count up to about 16 give or take.

Her attention span is pretty short but she is very eager and she likes rewards. We play a game that I lay all the flash cards out and when she gets it right, she gets to pick it up for "her pile". She REALLY likes this idea and she wants to get them all. As soon as she gets them all, she gives them back to me and we start over. She can write about 1/2 the alphabet by me saying the letter and her being able to picture it and write it. Her handwriting has GREATLY improved! I think that is due to her fingers being in much better shape than they were just a few months back.

Right now what Katia wants to do most though is to be allowed to GO PLACES! She ask all the time and she is staying behind her doctors on this. Her big desire is to get back to Disney World but her smaller goal is to be able to go shopping at stores. She likes picking things out online also and knowing they will come in the mail. That is what I let her do with her birthday and some gift cards she had. I guess that is kind of the new millenium way of shopping anyway.

Well, I am very full of typos today so I better draw this to a close:)

Also, please keep Jake R. in your prayers as he is back in the hospital with shingles.

Love, Tracy








August 7, 2006 7:00 PM

First, I want to update about the Herrin Twins. I know their site has been up and down today but surgery has been going on for quite some time now and they are slowly getting them seperated! Please continue to pray for them and their nervous/anxious parents.

Katia is doing well today. Her eyes are bothering her more than they have been the last couple of weeks. BUT, her skin is looking quite well. There is almost no redness in her cheeks and on her arms. I really pray (and I am hopeful) this is a sign of her marrow being accepted finally. She hasn't had Pentostatin for nearly a month. The one time she missed one dose, she had a REAL flare up. No flare up right now! Every day is one day closer to being able to say she no longer needs the Pentostatin or the other alternatives we were looking into. She still remains on her other 3 immunosuppressing drugs though but hopefully, if all continues to go well, we can wean one of those slowly. The key word is "BABY STEPS", well I guess that is key words not word.

Also, we want to thank you for your wonderful comments from those who have heard/seen the
"I Still Dream About You" song/slideshow.
The song will be available on CD in the next few days. You can check on the www.ladybugkatia.com Site. Katia loves the song. She says it sounds like a lullaby. Someday, she will more understand the significance of what she has gone through and what so many others have gone through. She certainly understands a lot more than she did even last year. I never want her to really have the fear of what she goes through and God has blessed us with giving her a positive attitude.

Also, you see those FEET at the top of the page? Well those are the little things that give Katia away in the night when she tries to sneak around. I hear those pitter pattering on the tile. They are also the sweetest little feet as they are forever crawling up in my lap. I remember after transplant counting her toes again like I did when she was born and how tickled she used to get with the "This little piggy" routine. She has always gotten a kick out of me smelling her feel and acting like they just knock me over with bad smell!! However, they usually smell quite sweet:)

On another note, I ask please that you pray for a Silent Prayer Request and I thank you for doing so.

Thanks for checking in.

Lots of love, Tracy








August 6, 2006 5:11 PM


Like the top photo? Katia picked that one! Definitely shows 6 year old humor:) That is her SIZE 9 feet!


That was taken at clinic on Friday. I have added the lab counts below.

Her counts are improving which is good and her skin is looking quite good. We are very hopeful that her skin will continue to look good. With each passing day, it is definitely a good sign that her skin is remaining clear:)

I added a prayer request above for some conjoined twins that are having surgery tomorrow to seperate. They have an amazing story!

Thank you so much for checking in and for keeping up with our friends. I just mainly wanted to jump on here to update that picture and make some minor adjustments and updates.

Lots of love, Tracy









August 5, 2006 11:00 AM
WBC 6.84 (better)
HGB 11.4
HCT 35.7
PLT 566 (still high?)
ANC 5951
Creatinine 0.2
FK506 8.5


First I wanted to wish Grammie a VERY HAPPY BIRTHDAY. That is Myron's Mom. Please keep her in your prayers that she will have a Happy and Healthy year! She is just an awesome person to everyone she meets:)

Secondly, I wanted to update yesterday after clinic but I was waiting to get some lab results back so I could add them to the update. I haven't received them yet so I figure I can add them later and not put off updating.

Katia had a good appointment yesterday. I have a picture to add from her clinic visit that just cracks me up so I will add it over the weekend some time. I need to resize it so it doesn't overtake the page:)

The girls very much like their teachers and enjoy being back in school again. This is Sharayah's senior year so I am sure she is very happy to be nearing the end of high school. This is Tatiana's last year in Junior High School so she is enjoying being one of the older kids at school (far from being one of the bigger kids) and the fact there are finally some kids smaller than her, although they are the 6th graders.

Katia will probably start classes this coming week. We are aiming to have classes Mondays and Fridays around noon and hopefully she can catch up and get closer to her grade level. It seems her memory and attention span are her tough spots so we are working on improving these areas by finding new ways to work with her. She seems to be very "visual".

Also, thank you for your wonderful comments on the new song. I am leaving the link above the journal entry for a while and then you can always find it linked with the songs at the top of the page. I will be adding some more pictures, in time, to the slide show. The availability of the song has yet to be figured out. I think we are going to work on that as a single but we are also working on a CD that compiles a larger group of songs so it is easier to get them all in one place. I will probably make both available soon. I know some of you already have the previous CDs. I want to combine a lot of the songs from "Rain" as well as add "Questions", "Wonderful Tonight" and "I still Dream About You" all on one CD. We are working on label design and printing right now.

I would also like to ask you to pray for a "Silent Prayer Request" as well as a prayer request for a gentleman, Tom.

I also ask for your prayers for our family at this time. As we face different struggles, we can always know that God will somehow see us through. Prayer is an amazing tool as well as a way to keep hopeful through difficult times.

So, I will update later with labs. I will probably just add them to this update. I am eager to see what Katia's counts look like.

Lots of love, Tracy







August 2, 2006 8:00 PM

I added a link above (that will stay there for a while) to Myron's new song. I hope you will enjoy it. You can learn more about the song on the page it is presented on.

"I Still Dream About You"

Katia is doing well today:) I always love to say she is doing well!!

Should I let you know what the treatment plan is as of today? Things have changed back and forth so much but, in this life, that is the way it goes. I have learned to keep an open mind and an open schedule:)

For now, we are going to keep things just as they were, no changes. Katia is looking better so something is working and we don't want to change anything right now. There has been a lot of thought and discussions on this with Katia's doctors, their outside resources, us and just a lot of consideration. So, the plan is to continue with the FK506, the steroids, the Cellcept (all of these are immunosupressing drugs which keep her immune system more in check) and to try to wean her from the Pentosatin. She was getting it every 2 weeks and it has been 3 weeks since the last dose. She remains stable. So, we are going to hold off on the dose until it shows its necessity. We have 3 options now which is nice to have. If she indeed shows the GVHD is coming back as it had in the past, we have the option of continuing
Pentostatin or trying
ECP (extra corporeal photopheresis),
or using the drug we had just planned to start,
Sirolimus (Rapamycin).

Confusing?

Well, we are just praying this will work and we can start weaning her FROM things instead of adding things to her. We will see:)

Let us know what you think about, "I still Dream About You.

Love, Tracy





August 1, 2006 12:30 PM

I have updated a few of the prayer request above and also, I would like to ask you to pray for a young lady, Yadira. Yadira is 18 years old and is being treated for High Risk Leukemia ALL. She has a 2 year old little boy also. She is basically alone and she feels bad a lot of times due to chemo treatments. She lives on her own and cannot work due to her given situation. The Katia Solomon Foundation, as well as our family and friends and others have been trying to help her with some of her needs. I ask that you pray for her health and her situation. She is currently trying to find out if anyone in her family is a match for a bone marrow transplant.

Thank you for your prayers.

As far as Katia, well things may be changing again as far as what treatment plan she will be on. There is a chance that we may stick with what she has been on and give it some more time to work before changing things around. At her appointment yesterday, her skin looked quite good as well as she is showing some improvement in her mouth SO, it may be a good idea to keep things as they are and try to wean her from steroids. No sure plan yet but we should know more by this evening.

I talked to her teacher today and the plan is to try 2 days of homebound school each week for a couple hours each time. Katia can't wait to get back her schooling with Ms. Michelle:)

Also, we had an opportunity yesterday to be part of a news story on Channel 8 with Florida Blood Services. It was a story about the CRITICAL need of blood donors at this time. I can't find a clip online of the story but if I do, I will link it here. Tampa is in desperate need of blood donors at this time!! Please donate if you are able.

No matter where you live, I know there is a National Blood Supply shortage. Blood saves lives. For those of you who follow a lot of these different Caringbridge kids and others on treatments, you know how often blood is needed for transfusions.

Also, for car accident victims, surgery patients, and so much more. Katia has needed blood transfusions MANY times and it was always available for her. There are plenty of times where a patient can't get the amount of units they need due to shortage or the hospital has to send to another county or even state for units of blood. This wait can cost lives.

The IVIG treatment that Katia gets every month to 6 weeks is antibodies pooled from 3,000-10,000 donors. This is what keeps Katia progressing until her Immune System is able to function on its own. So, please donate blood, platelets, blood products. There is definitely a need and it saves lives.

If you do, we love to hear from you about your experience and what lead you to become a blood donor. Of course, while you are donating blood, you can talk to them about registering to be on the National Marrow Donor Registry.

Thanks for checking in and I will update when I know more about Katia's treatment plan.

Lots of love, Tracy

PS Yesterday's update was so short, I guess I just made up for it:)






July 31, 2006 4:30 PM
WBC 13.92
HGB 11.3
HCT 34.6
PLT 604
ANC 11,971
Creatinine 0.3

Labs added 8:00 PM
(Some of her labs are pretty out of "whack")


We are back home from clinic. Nothing really went on today. We drew labs and we go back on Wednesday. Before we can start the Rapamycin, we need to adjust some of her meds and blood levels. So, the good news is we don't have to go back tomorrow:)

Other than that, Katia is feeling quite well today. She is pretty happy and chipper, eating well and drinking well.

Wow, this is a short update!!

Love, Tracy


***********

July 29, 2006 3:43 PM

Hello, from home:)

Katia is feeling quite a bit better today. Hopefully that means the antibiotic is kicking in full force. I don't know what was causing her to feel so bad last night. She is still having really bad pain with her bowel movements and they are very runny still. I imagine she is cramping but she doesn't know how to describe that really.

This week consist of clinic on Monday to start the new treatment and daily visits thereafter to check levels in regard to the new treatment. We will be spending a lot of time going back and forth. I told Katia to pack a little clinic backpack and it gives her things to do in the car as well as at clinic. She puts everything in there but the kitchen sink.

I remember when she relapsed back in August 2003 and I was packing to return to the hospital. I think she gathered the idea better than us that it would be a long stay (11 months away exactly) and she kept putting things in the suitcases and bags. I had in my mind that we would be gone a month or two like we were when she was first diagnosed but in the long run, it turned out much longer due to complications that kept coming up.

I think of that when we drive to and FROM clinic that it could always be worse. It could be a one-way trip so I am grateful to always be able to return home at the end of the day.

Trips to clinic definitely add up with gas. Yesterday Oprah was about families living on single incomes or minimum wage incomes. It is amazing how many families really do live "on the edge". We are one of those. Every little thing does add up.

I think in the long run of things, it proves that God has always been there for us, either through other help from outsiders or just by giving us the patience to sit down and figure things out. I always know things could be worse.

"The secret to happiness is not in doing what one likes to do, but in liking what one has to do".

I think that is a good quote to live by.

I would like to ask you to pray for our friend, Billy G.. He received transplant a month after Katia. He was first diagnosed with Ewings Sarcoma and then MDS. He had follow up scans done and it showed 2 spots on his liver. It appears this may be Metastatic Disease which hopefully is not. He had a liver biopsy yesterday and they will find out the results Monday. Please pray these results are not bad news.


Thank you so much for your prayers.

Love, Tracy









July 28, 2006 7:00 PM

Katia isn't feeling well and is again playing around with a fever. Please pray this does not go up, requiring an admit. She is MAD because she feels "warm" so she is sleeping. Her answer to anything is, she needs rest. Pray this is true.

Thanks,

Tracy:)






July 28, 2006 4:15 PM
WBC 8.42
HGB 11.5
HCT 34.7
PLT 497
ANC 5641
Creatinine 0.5

Clinic went well. It was a quick visit just for labs. We go back on Monday to start the new treatments.

Katia is doing okay. She is happy, still sore, but happier. She is enjoying playing little games with Tatiana which is always a good thing to see, and hear!

Next week will be quite busy with clinic visits and school starting (Thursday) for Sharayah and Tatiana. They are SO looking forward to school!!!

Katia is kind of playing around with a low grade fever this afternoon though which I hope doesn't develop into anything. I really pray for a quiet weekend at home. We ADORE those kinds of weekends!

Well, I better sum this up. We are having a bit of a storm here right now.


Love, Tracy





July 27, 2006 9:33 PM

Please pray for Skyler J's family and sweet Skyler. Skyler was diagnosed with leukemia AML at the age of 2 months. She just recently turned 3 and has had 3 remissions from cancer, 2 bone marrow transplants and has fought a very tough and courageous battle. At this time, she is on the final part of her journey on this earth and the whole family needs your prayers. She had to go into the hospital for blood, platelets, plasma and pottassium as he had been passing straight blood from her bowels and urine. She wanted to go back home and is back home now. Thank you for your prayers for this little girl and her family.

Love, Tracy









July 26, 2006 5:42 PM

Hello:)

Today has been a "lay low" kind of day (which is great!) and Katia seems to be improving since starting the Vancomycin. She doesn't seem to be having as much stomach cramping (still has a lack of appetite) and sudden bottom pains. I asked her if she is feeling better and she said the "magic pills" (vancomycin capsules) seem to be helping:)

We are still working out the new schedule for treatments but it seems we will start by doing labs on Friday and then starting treatment with the Sirolimus (Rapamycin) on Monday. There are some things needing to be rearranged on Katia's medicines and other things worked out with scheduling her labs. She needs to get off the Voriconazole (VFend) that she has been on since treatment and start a new drug (via IV) called, Micafungin. From what I understand, this is done IV every other day and the Rapamycin would be weekly or biweekly with daily lab tests for a while to check her levels and keep the levels under control.

This is hard on her kidneys which is why we are changing from VFend pills to the Micafungin IV form. Although it means going back and forth a LOT more often, it is the best treatment option for her at this time.

Hopefully it works and we can put the GVHD at bay. If we can get that taken care of, her eye problems and other issues should clear up for the most part. That is our hope.

Back in April 2002, I told Myron since we were in St. Pete so much, we should buy a house over there. I didn't realize we would still be going back and forth at this time but I do have to say, with each trip back and forth across the bridge, I reflect on the quality care that Katia is able to receive and the fact, we are still in this fight! That is never taken lightly by any means. You do what you have to do. Financially, trips back and forth are difficult BUT, I remember the months of staying over there and just praying for the day we could come home and do outpatient treatment. I can say, God answers prayers:)

If you haven't seen the prayer request or the journal entries from yesterday, I urge you to see them in Journal History. There are some people really in need of desperate prayers.

Myron is working on a new song which is just about done. I can't wait to be able to share it. We have learned through all of this that we hear songs differently than we used to. This song was written quite a while before Katia's diagnosis but he just decided to finish it. Our minds have certainly changed as well as our hearts in many ways. I think, depending on your life's journies will let you hear the song in the way that will touch you. I will share it when we are able to get it done. Hopefully very soon!

I get emails from people about how to get the songs listed or playing on the site. Well, we are working on that also. We need to be able to press some more CDs and print more labels. We are planning to do that soon. I am wanting to do a compilation of a few songs, some that were originally on other CDs but, combine them in a way and get them on one CD plus the two newest songs including "Wonderful Tonight" but we have finalized our plans on how to do that. Once they are ready, I will post about them.

Katia has a low "whimper" going on right now so I better sum this up. She is very very clingy right now so I can't get too far away from her. We were watching Sponge Bob before I came here to update and I have to say, I think I have seen EVERY episode. I have seen EVERY episode of a lot of things. I am sure a lot of you understand what I am saying and have done the same thing.

Thank you for dropping by:)

Love, Tracy




**********

July 25, 2006 9:45 PM
Prayer Request

I have added/updated some requests above but I wanted to post this here also.

Gabby needs your prayers for a miracle. She has been fighting an inoperable brain tumor since July 2005 when she was just 5 years old. Recently, they have learned the tumor is growing and has spread throughout the brain and down along the brain stem; it's still growing at a rapid rate. She just turned 6 years old in July and right now has been suffering with numerous seizures, vision loss, nausea, and just so much more. Please pray for a miracle. Please pray for Gabby's strength and hope and for her parents as they must witness their daughter in a fight for her life.

Love, Tracy




July 25, 2006 6:20 PM

Please continue to keep Ellis in your prayers as he is having bleeding issues and is headed back in for more surgery. The surgeons will go and wash out his chest cavity again, check for clots and see what can surgically be done to prevent further bleeding.

Thanks so much for checking up:)

Love, Tracy




July 25, 2006 11:45 AM

Good morning:)

I just wanted to jump on here and ask your prayers for a little baby, Ellis who is going through a heart transplant today. The new heart is in but prayers are very needed as there are some complications at this time.

Also, please pray for Katia as her belly is really giving her a lot of problems this morning. She ate a bit of a bagel and did take her pills so at least she is okay with her medicines. We are really hoping to get her started on the Vancomycin today for the C-Diff. Hopefully, if we get the C-Diff taken care of, she will be feeling better.

Right now she is playing her PS2 and she keeps pausing the game. She doesn't say anything but I can see, she hurts. I know things could be worse and I tell myself that all the time. I am grateful for how far Katia has come and the hope she can continue to get better. The last two nights she has come into our room just needing medicine for pain. She comes in and just lays on me crying. Once I give her some Tylenol with Codeine, it takes about 45 minutes for her to say she is feeling "some better". She went back to sleep around 3AM this morning and slept until around 10AM or so. I feel good to see her getting her rest.

So, thank you for your prayers.

I am going to check on a few other sites that I haven't been by yet. I will try to update prayer requests also.

Love, Tracy







July 24, 2006 6:20 PM
2nd Update Today

Yep, I am back again:)

Katia is napping right now. She has the brown shirt in front of her cheeks (laying on it) and everytime she breathes, it blows the shirt. That shirt has been through a lot and has always brought her such comfort:) Anyway, she said she wanted to rest a bit and then that she wants to wake up and eat soup. She kind of writes her own ticket around here a lot of times. For the most part, she stays within "guidelines" anyway. She actually knows her limits but I think she just likes to feel "in charge" of her decisions sometimes. So, soup it is:)

I was just reading through the guestbook. There are a lot of times when that brings ME comfort more than I think you can ever imagine. It is like family on there. I see names that I have been seeing since 2003. I like hearing about you and from you. I read the messages to Katia when she is hanging out at the computer with me. She spends a lot of time with Sharayah and Tatiana when they are home from school but during the school year, she is attached to my shirt each day. Although I do miss that, I am also glad that she enjoys spending time with Sharayah and Tatiana are home.

Well, the last few days she has come in while I was at the computer and asked, "What are people saying?" I think she misses that time we have during the school year. It is 10 days till school starts. Sharayah and Tatiana have a count down going on.

Katia was supposed to start her Vancomycin today but the pharmacy didn't receive it in their shipment. They said it will come in tomorrow by 2:00PM. I am eager to get her on it in hopes that her bottom and belly will improve. She is having bloody stools more often now and I am hoping it is due to the C-Diff. At least she just had a clear colonoscopy so we aren't worried in that area.

So, that sums up the rest of our day. Thanks for signing in and letting us know you dropped by. I know it takes time and I appreciate it.

Love, Tracy








July 24, 2006 12:22 PM

If you haven't read yesterday's updates, you may want to start there.

First, I have to say, thank you for your prayers. Today is going somewhat better than yesterday. Katia is up!

She is actually back and forth between the bathroom and the sofa or the bathroom and my bed. But, she is getting to each place on her own as of a couple of hours ago. Until then we needed to carry her back and forth. She is now smiling again also.

Someone emailed me about Katia's GVHD. So, I figured I could answer it on here as it may be best described for others to read also. Katia's GVHD on her knees (which are improving) and her hips are not rashy but more hardening of the skin. The skin in those areas is hardened and rough. It is almost as though they are thickening and becoming unmoveable. At first I thought there was no way it could improve until we saw improvement in her knees. That is why it is hard for Katia to explain if it is the bones in her hips hurting or the skin. I can imagine sometimes the skin must feel like it is ripping when she tries to move or roll over but I can also imagine that her bones are aching. Katia is getting a little better at pinpointing the hurt and being able to describe it. Yesterday we just decided to treat her skin and bone pain and neither seemed to be fixing the problem at all. Today however, the skin on her hip doesn't feel as hardened or thickened (it is hard to describe).

Katia gets "rashy GVHD" on her arms, back and face more than anywhere else. Her hands get rashy looking in the palms also. Her finger tips get more of the hardening and thickening GVHD. It all depends which layer of the skin is being most affected by the GVHD as to how it shows up. Her nails are very brittle and breaking off on the nailbed on her forefingers. Her finger tips don't look as bad as they did near the end of the school year but they look pretty bad right now.

Our hope (all of ours) is that the new treatment will get the GVHD to a perfect level. If some GVHD is needing for residual leukemia, then let there be just enough to fight that but not cause further harm in other areas or organs.

We are waiting for confirmation on when she will start the new treatment. She had Pentostatin on the 13th and it may be she needs to wait the 2 weeks out to start on this new treatment. That is what we are waiting for confirmation on along with what the lab levels need to be following the doses. Two weeks would be the 27th of July, this coming Thursday. I will update when I know.

So, thank you for your prayers. Katia is feeling a bit better today than she was yesterday.

Lots of love,

Tracy








July 23, 2006 8:30 PM
2nd Update Today

Katia still is feeling quite lousy. She says her hips hurt in the bones and the skin?

Her bottom is worse but hopefully that will start improving with the antibiotics for the C-Diff.

She did eat some dinner tonight so that is good and she is drinking decently.

Right now, she is laid up next to me. Her hands and nails are showing more signs of GVHD right now also so she is rubbing them.

We did take her out for a drive, which will usually perk her up and although she didn't want to just head back home, it was clear she wasn't enjoying herself. She was just sort of sitting in her seat slouching over. As soon as we got home, she went right back to the sofa and is needing to be carried around right now due to pain.

Of course, this makes our stomachs hurt as none of us like to see Katia in pain and throughout everything, we certainly have not gotten "used" to her being in pain. She is the "baby of the family" and we like to see her happy and hear her laughing.

Thanks for your prayers.

I will update with any changes or tomorrow.

Love, Tracy







July 23, 2006 11:20 AM

Sorry for no update yesterday. Things are okay. Katia isn't feeling too well though. She is down for the count right now in my bed with the brown shirt and Barney. She thought she had a fever and needed to go to the hospital but she is at 36.8 so she is good. She just feels bad right now.

I did get a call for today from her doctor that her C-Diff tests came back positive so she will start on Vancomycin tomorrow. Hopefully that will make her feel better in a few days and will get her back on the right track. I am really really hoping that this will take care of her a lot of her bottom pains. C-Diff would explain a lot. Today her belly is REALLY hurting her which is probably due to cramping with C-Diff and nothing makes that go away as far as pain meds.

So, just pray she can get some rest today.

I have a few silent prayer requests. I also have a thank you for all of your checking in on the above prayer requests. So many are in need of prayers and encouragement. Prayers can be for someone to feel better, good scans or results on tests, financial problems, new diagnosis and the stress and uncertainty that goes along with dealing with different diseases, and just so much. I get a lot of emails for prayer requests. I appreciate your concern for others. It means a lot.

Going through cancer is something I wish, I think a lot of cancer parents/patients wish, that nobody else ever had to go through. It is something I wish wasn't a specialty when it came to doctors and such. At the same time I am thankful that research is done and there are specialized facilities, medications and doctors. I am grateful when I hear of new research or medications that make treatments more tolerable or give a better prognosis.

Katia is extremely happy when she can take a capsule or pill instead of liquid. I think to myself, "Someone had to discover a way to put that into pill or capsule form." I am grateful for those researchers.

I read a lot about new treatment ideas or new medicines that are being discovered and I am amazed at the things that potentially will come about in the next year, two years or years to come. Our prayers are always with patients as well as the doctors and researchers treating the patients. There are so many diseases out there that either don't have a lot of research or aren't even able to be diagnosed yet.

I am getting a little long-winded I guess but it hurts when Katia feels bad and there really isn't much I can do for her but I pray in a few days she will be feeling much much better and I am grateful I can hope that.

Thank you for your prayers for Katia and your encouraging words. She likes to look at the guestbook with me and I read her a lot of your entries. We both appreciate you:)

Love, Tracy











July 21, 2006 5:00 PM
NEW PRAYER REQUEST ADDED ABOVE

Katia is resting as I type. She needs the rest. She is doing okay though. She did take the Fosamax this morning and did very well with it. There are risks to taking this medication as well as possible side effects so over the next weeks and months, we will just keep a close eye on Katia. The risks of not taking the medication is continued bone density loss and breaking bones so it is something we definitely have to try. Katia likes the medicine because it has a little "dog bone" etched in the pill. I told her it was a "bone" not a "dog bone" but whatever makes her happy:)

She is still feeling pretty puny. We went out for a little drive to just let her get out of the house and she likes getting out and seeing things. The main place we "escape" to is clinic, not so fun. She had a nice time out on the drive and then came back and went to sleep.

Sharayah and Tatiana are eagerly counting down the days to school!! Sharayah will be a senior and Tatiana will be in the 8th grade. They grow up so fast. Katia will start school again near the same time. She is "sorta" looking forward to it. She just isn't feeling to peppy right now. I am sure she will be happy to see Ms. Michelle again though:)

Well, I mainly wanted to get on here and add the prayer request for Hannah. She is in desperate need of prayers.

Lots of love,

Tracy


*********

July 20, 2006 7:30 PM
WBC 3.83 (low)
HGB 13.7
PLT 355
ANC 2700
Potassium 4.0 (great)
Sodium 131 (low side)


First, we are home!!!

Just got here.

It was a long day and I would have updated sooner BUT I packed my stuff, including my laptop, around 11AM thinking we would be right on our way home and update with the "WE ARE HOME" but that didn't happen. There were a few delays that set that back some.

Then when it came time to fill out discharge papers, it was realized Katia hadn't been drinking near enough. She should have about 50 ounces a day and around 5PM, she had only around 14 ounces SO, she had to drink down some chocolate milk and gatorade (both full). She did it and we got our walking papers:)

As I type, she is playing in her tent with Tatiana and sounds quite happy.

Where do we stand? Well, no fevers which is great! But, no answers. Nothing has grown of any cultures yet. Stool is still pending and I think, I have said this before, that is where her problem seems to be. She is still having major bottom pain and very sore bowel movements. Her stools (not for the faint hearted) are very runny, loose and have mucus in them. Plus they just plain smell like something is wrong. My guess is c-diff but there are other things it could be. If it isn't c-diff, which is the only lab still pending, then we will take in another stool sample. I am about 70 percent sure it is c-diff. If so, then they call in a prescription and we get started on it. Probably vancomycin. Sounds dumb, but I am hoping for c-diff since we can deal with that and have many times in the past.

Other than that, we are planning to go in on Monday for the new treatment and each day next week for labs. That MAY change though depending on some phone calls being made back and forth.

Katia starts her Fosomax tomorrow and she will take it each Friday morning. It takes months for it to show benefits but tomorrow will day one day closer with helping her bones.

Let's see...

I think that is about it for now.

Please pray for Katia to feel better, drink enough and eat well and to NOT GET ANY FEVERS. That is what we hope for. A nice, quiet weekend:)

Love, Tracy









July 19, 2006 6:15 PM
3rd update today...

Good news? No fevers:)

The plan is to do a glucose tolerance test in the morning, get another dose of IV antibiotics and maybe go home.

So far nothing is growing in her blood work and we are waiting to get another stool sent for a lab on c-diff. The other one we sent didn't have the c-diff written on the orders.

Other than that, she is eating better, drinking good and just not very active. Her activity level will probably pick up at home.

I got a printout of her DEXA SCAN results today and they are worse than I had understood. However, Katia is still so small that it is a blessing in the fact that her body weight isn't too heavy for her bones.

Results:
DEXA SCAN Z-Scores

Whole body = Severe Osteopenia (-2.3)
Lumbar Spine=Borderline Osteoporosis (-2.5)
Left Hip=Osteoporotic (-3.7)

You can click on the DEXA SCAN link to learn more but the ideal score is above -1.0 so Katia is quite a bit worse than the normal levels, especially in her hip.

She will start the medicine for this on the weekend and take a pill each week. Not sure what the pill will be yet. Some type of Bisphosphonate type of treatment.

So, the hope now is to go home tomorrow and Katia get back to being more like herself. Being home is one of the best medicines for her to get back to "being herself" and coming to the hospital is one of the best medicines for when she needs more than just TLC:)

So, I will update more with any changes.

Thanks for checking in. Katia says to say hello:)

Lots of love, Tracy









July 19, 2006 2:25 PM
2nd update today...

Katia is resting and receiving her IVIG transfusion.

She is still feeling pretty puny so I am glad to see she is getting some sleep.

I had updated but it seemed to not go through (hospital connection) so I am going to summarize this time:)

I will update later with more info.

We are going to be tracking her sugar a bit more closely also. Her urine shows it is spilling over into her urine so we are going to check it when she wakes up, before meals and before bedtime over the next month.

Thanks for checking in. Love, Tracy and Katia









July 19, 2006 10:50 AM

WBC 5.60 (better)
HGB 13.3
HCT 39.0
PLT 374
Sodium 3.3 (better)
Potassium 3.9 (better)
Creatinine 0.2 (better)

As you can see, we have some lab improvements:)

That is due mainly to getting a lot of fluids in Katia.

She is still pretty crabby today and complaining about her belly. She is still having runny stools. She did eat a piece bacon and a bit of bagel today along with some chocolate milk.

Right now she is mainly just tired but also isn't very happy about having to be here. Hopefully things can get worked out over the next day or so and she can be on her way home. Right now she is getting some IV antibiotics and then we will go ahead and get the IVIG transfusion she would have gotten at clinic.

Someone came in and talked to me about her sugar levels just to kind of see if something needs to be done or whether it is due to steroids. She will probably go ahead and do the glucose tolerance test. Hopefully it is due to just being on steroids for so long and we can stay with our goal to wean them once we start this upcoming treatment on Monday.

I added a few prayer requests above. Thanks so much for checking in.

I will be back:)

Love, Tracy and Katia







July 18, 2006 9:30 PM
4th Update today...

WBC 11.40
HGB 14.3
HCT 42.0
PLT 368
ANC 10,600
POT 3.3
Sodium 129
Creatinine 0.6

A1C=5.6

Lots of labs listed but it shows something is going on. Very rarely does Katia's WBC count get that high as well as her ANC so there must be some type of infection. Everything has been sent now. Urine, stool, blood, nasal, etc. We wait and see what grows or how her labs change.

Her sodium level is low and hasn't been like that for quite some time and her creatinine has gone up some. Nothing alarming but we like to keep it lower for her treatments and kidney function.

Katia felt better a few hours ago but with this last bowel movement, she is back to feeling quite bad. It was very painful for her and a LOT of stool, lose and definitely smells like it has infection. Poor lab guy that has to run those tests...

Anyway, she has eaten a bit and has drank quite a bit (which is good) and right now seems to be calling it a night.

We are going to also start treatment to help with her bone density and possibly do another DEX SCAN while we are here. The last one showed z-scores of -2.3 for her whole body (severe osteopenia), -2.5 for her lumber spine (osteoporosis) and -3.7 for her left hip (osteoporotic). We can't really delay treating that as her bones were that weak in January 2006 and she has remained on steroids.

Good news? Her SINUS CT SCAN looked GREAT! That is awesome because they were really packed last time we scanned a month or so ago.

So, I just wanted to get back on here and update with the labs and let you know what was going on.

Katia has had a rough evening so hopefully she will have a good night.

Love, Tracy






July 18, 2006 5:45 PM
3rd update today...

We are up here in our room. Katia just came up from having a sinus CT SCAN done to see how her sinuses looked. Last time we checked they were packed so we did antibiotics but hadn't rechecked. That could cause fevers if they are packed.

Other than that, we are just hooking up to IV antibiotics and sending off blood cultures, stool cultures, urine cultures and another nasal wash (Katia doesn't know about that yet...)

Her hemoglobin A1C came back at 5.6 which is good so her blood sugars haven't been rising up much longer than we probably know about. They still do but the A1C tests looks over the last 3 months.

What else?

We did have a little difficulty getting her port accessed. At first it wasn't IN the port so the fluid was going around the port which was puffing up her chest. But, the second try got it in the right location. She wasn't at all happy about that. She was really crying and crying and getting upset.

I will post if I here anything else but right now, we are just pulling together a game plan. Love, Tracy









July 18, 2006 3:00 PM
2nd update today

We are off to the hospital. Her fever has just been going up and down now between 37.6 - 38.4 but it was decided she needs to go in. One of her results from the colonoscopy is showing some infection so maybe that is what is causing this?

I will update later.

Love, Tracy





July 18, 2006 12:50 PM

Please pray for Katia this morning as she isn't feeling well again. She hasn't felt too good the last few days. Her belly is bothering her and she is running a low temperature between 37.6-38.0 (38.0 is usually an admit).

She is due to go in tomorrow for the IVIG transfusion as her IGG (immune count) is quite low. I notified her doctors so we will see what they say as far as admit/waiting/bringing her to clinic.

We did just do blood cultures last week as well as nasal cultures and urine so I am not sure if something would show up now or not. She just hasn't been herself since the last admit really.

Right now she is laying in bed. I did give her a bath and got her totally dressed (sometimes that just helps you feel better) but she just went back to bed and hasn't taken any of her medicines yet this morning except the FK506. She says she can't swallow her pills cause her belly hurts. She has about 11 pills to take so I am going to try to do few at a time. If I try to force her, she will just throw them up anyway so I have to trust her to let me know when she can take some. She knows the importance of each of her medicines and what they are for.

I will update with any changes.

Thank you for your prayers.

Love, Tracy



***********

July 16, 2006 9:00 PM

Boy am I late with these updates...

I just wanted to jump on here and let you know our weekend has gone relatively well.

We are always happy to just be home. That in itself makes things better.

Katia took a fall today in the kitchen. She busted her lip and bruised her knee but after a lot of attention and a good looking over, she was playing a bit later. Her lip still looks yucky but it stopped bleeding quickly which was good and she didn't bust any teeth which was great!!! I worried about that when I heard her fall. She was just walking (she is still pretty close to the ground) and just fell over.

That was this morning. For the rest of the day, she is tip toeing around so she doesn't fall. She looks like she is sneaking through the kitchen.

She has needed codeine 2 times today and is going to need another dose before bedtime. Mainly because of her bottom but her eyes are also giving her problems. She is mad because she thought the drops would help more and she said she doesn't even like doing the drops. She just does them hoping they will make her eyes get better. I told her we have to get rid of the GVHD to get rid of the problems and the sad thing is, she knows exactly what I am talking about. She has quite a knowledge of the medical field.

Also, another prayer request is for the countries in war. I know there are a lot of mixed feelings over all but there are many innocent people in the way of serious harm. Some of those families have websites to share their stories of their children facing cancer or other illnesses. I think of what it is like to go through this illness with Katia in this country and I can't imagine going through this with less medical care or a war going on around me. My prayer is for their safety.

Love, Tracy








July 15, 2006 9:00 PM

Hello:)

I wanted to drop in and just update on a couple of things.

We had a nice visit with Angel Carlos' family tonight. He passed away one month ago today. They are being very strong but they also have broken hearts and deeply miss Carlos.

Katia wasn't feeling too good while they were here so she went to lay down. Her eyes are bothering her a bit more than they were. We just did more eye drops before I sat down to update. Her other problem is her continuing "butt pain". I feel so bad for her with this struggle. I actually got worried yesterday because as she went to the bathroom, she was just in so much pain and her heart was pounding. I took her blood pressure which was fine but her heart was up to 169bpm. I have gotten a lot of emails about ideas and I appreciate them. Katia's stools are not hard though and she has 3 to 5 bowel movements a day. She isn't constipated. This is just a problem with a very irritated digestive track and bottom. Not to get too carried away here but everything is internal, the outside area looks fine. From the look of the pictures from the colonoscopy, there is just a lot of irritation. I imagined it would look worse than it did though so things could be worse. The complete biopsy and study results aren't back yet.

Her Hemoglobin A1C results aren't back yet either. I haven't asked for them yet either.

On a great note, Emily L. should be home by now. They had gone away to St. Jude for transplant and were able to return home to Florida today! I am sure they have a lot of reorganizing and unpacking to do.

Ms. Katia says to tell you hello. She is sitting here next to me. She promises she is going to try to sleep tonight and it is bedtime now. She says she just misses me in the night and can't sleep BUT if I ask her to sleep with me, she misses her room...so it is an ongoing circle (unless I move into her room.)

I have a few silent prayer request to bring to you. I appreciate your prayers for these. I will try to update on a few of them if I can but for now, they are just silent prayer request.

Lots of love,

Tracy







July 14, 2006 7:00 PM

IGG=475

Katia had a fabulous first visit to the dentist!! She was a bit nervous but she did great, no ouchies and she liked the dentist's office.

The dentist is a long time friend of ours and they have followed Katia throughout her journey.

We found out she has a new molar coming in the back, her teeth look very nice and his opinion is to get the area in Katia's mouth biopsied. That sore has been there since around January of this year so I agree to find out definitely what it is.

The picture at the top of the page is from today right before we left to the dentist. She took the poodle, "YoYo" with her:)

I have updated some of the prayer requests and added a new one. Thank you for taking the time to follow those prayer requests.

Please pray for Angel Emma's Mom and family. Emma passed away in May and they are just really struggling and missing her at this time. Emma fought leukemia AML and GVHD for quite some time. She was surrounded by the love of her family throughout. I was emailed this request from another Mom whose daughter, Carly is fighting against Neuroblastoma. She had transplant over 2 years ago and doing well. I love to hear that:) Her and her twin sister, Kaylee just turned 6 back in May.

We go to clinic next Wednesday for the IVIG transfusion but until then, we hope to have a quiet weekend and a few days off:)

I have looked up some info on Katia's new treatments. The Rapamycin will be the new treatment for the GVHD and there is also a new mouth solution we are looking into to help her mouth that I spoke of yesterday. I can't really find information on it as a mouthwash because it is normally an inhaled or tablet type of medication. The name of it is Beclomethasone. Moffitt has been working on it and ACH is going to mix it up for us so we should pick that up next Wednesday. Katia is good with rinsing and spitting:) I told her about it and she is okay with it as long as it isn't really minty tasting (it isn't). I feel good about the changes we are going to be making and am reading up on each one as much as I can.

When I told Katia she was getting her last dose of Pentostatin yesterday, she said, "I liked the Pentostatin." It is just funny hearing her say that. She didn't like it when she used to get so sick with it but once we got the nausea and fevers taken care of, it wasn't hard on her or caused her to be admitted.

BIG NEWS!! Emily L. is coming home tomorrow!!! She has been at St. Jude for transplant. It will be great to know she is back in Florida:)


Well, that is all for now:)

Lots of love,

Tracy










July 13, 2006 9:20 PM

Sorry for getting on here so late tonight. We actually didn't get home till around 6:45 tonight and ate dinner and were just worn out.

Katia hasn't been sleeping for days now. She is up most of the night which keeps me up and it just wears both of us out. She is into this "wondering" at night and gets into things or just keeps coming in and out of my room checking on me. If she sleeps with me, she is still up talking to me, asking for things or wanting to go get things out of her room. SO, she needs to get some sleep and get back into a nightly routine. She just went to bed so pray she falls asleep:)

She had the last dose of Pentostatin today and all went well. As much as we wanted that treatment to work for her, it didn't. I do think it helped her GVHD on her hips and some on her knees though. Her lips also seemed to have been helped by the Pentostatin.

She also had a Nasal Wash at clinic as it appears she may be coming down with a cold (she hates those nasal washes) but we just need to make sure there isn't a virus or anything going on in there.

The next drug we are going to try is Rapamycin. There are a few concerns about it, mainly due to the fact of reactions with another one of her medicines, VFEND. She has to stay on teh VFEND so it just means keeping a very close eye on the Rapamycin levels. I will put some links up about the drug tomorrow.

She will get the first dose on the 24th and then have her levels checked in clinic on the 25th, 26th and 27th. Those levels are sent off and take a few days to get back. When the level results get back, we work the dosing and try to get the levels where we need them to be to accomplish what we need without hurting anything else. We are ready to give something else a try so whatever it takes to get things on the right level, that is what we will do:)

Tomorrow, Katia goes to the dentist to have her mouth looked at. We need another opinion on that sore in her mouth. It has been there since January and is getting larger. Sometimes, it seems to flare up with the GVHD but other times, it seems to be something totally seperate. I am interested to see what the Dentist's opinion is.

Some time next week, we are also going to start on a new mouthwash. They need to get the ingredients together and mix it up at ACH so we can go pick it up. It is to help with the GVHD in her mouth. It is a twice daily rinse for 3 minutes each time (or as close as we can get to 3 minutes).

She also is needing to get another IVIG transfusion as her IGG level is down to 475. I want to get that out of the way next week so that we have all of this behind us (dentist, mouthwash and IVIG) before we start this new Rapamycin treatment. Sounds like a lot? Well, hopefully these are the steps toward getting Katia feeling better ALL THE TIME:)

Her bottom has been bothering her quite a bit tonight as well as her eyes. Both are GVHD related and it is our prayer that GVHD becomes a PAST problem soon. It seems like the one thing that causes her a few different areas of pain.

So, I think that is enough medical talk. It gets confusing to hear and type it, much less read it I guess... sorry.

Well, I am off to call it a night. It takes me quite a while to fall asleep as my "clock" seems to be connected to Katia's "clock" so I end up staying awake until around 1:30 in the morning, knowing she will be back and forth or call me. But it is still nice to "call it a night" and just be ready for bed at least. I think that is one of my favorite times of day:)

Lots of love, Tracy

PS I will update on Prayer Requests tomorrow. I really have a few I need to add. Please do keep Jake R. in your prayers. They have a treatment plan set up for him that will take place this coming Friday.

I will update the Prayer Requests section tomorrow.



**************

July 12, 2006 3:42 PM

I just wanted to get on here and update real quick as it appears we have a pretty big storm about to get here. We get some scary storms with a lot of lightning and thunder. I am no fan of lightning. When I was 15, we lost our home due to a direct lightning hit. We weren't home at the time but the house burnt to the ground. I have a HUGE respect for weather.

Katia is doing well. She is feeling quite well actually. She is eating less than she was but closer to normal so she is improving. We go to clinic tomorrow for her last dose of Pentostatin. No word back on the colonoscopy results. They sent of biopsies so that takes a week or so. Nothing has shown up positive on her blood cultures that were taken on Monday also so that is good. Still no reason for the fever but it is gone and she feels better so we are happy:)

Please keep Estephany in your prayers. She has been doing very well but came down with a fever last night so she was admitted today.

Katia is asleep right now (all tucked in with the brown shirt). Not trying to be bias but she is so cute to watch sleep. She makes little facial expressions and she snores.

Since Katia is still quite small, she likes to get up on my lap and cuddle and I like the fact she is still so squeezable!! She loves hugs and kisses from me and I love to give them to her:)

I also would like to ask you to stop by Angel Hanna's Site. The link is above in the prayer requests section. Her mom is really missing her, all of the family is. She touched many lives. I know her family could use some encouragement. You can read her mom's update to understand more.

Thanks for checking in on Katia and for keeping up with others.

Lots of love, Tracy








July 11, 2006 4:30 PM
WBC 5.30
HGB 13.5
HCT 40.0
PLT 304
ANC 4100
Potassium 3.8!!


We are home:)

Happy to be here!

Katia is feeling much much better now. I think the two days of hunger just really tore her body down and allowed her to get sick. She also had not been sleeping so her body was just not able to fight for itself and needed a break.

The potassium dose seemed to work along with the IV fluids with potassium. Thank goodness because 2.2 isn't good at all. We have had that problem before where it didn't bounce back with the potassium dose and she had to stay in the hospital and then come home on quite a bit of potassium capsules (which she took with no problem) so it was nice to see it clear up:) God is good.

We are still having some sugar issues but I figured things would really be out of whack over the last few days. I hadn't even been checking while she was on all clears.

Last night in the hospital, it got up to 317. This morning it was 91 which is closer to normal. Right now it is normal also. She isn't back to eating normal yet so we will see. She goes back to clinic on Thursday for her last dose of Pentostatin. At that time, we will do the A1C test to check her blood sugar levels. That kind of gives you a look at the last 3 months so it isn't just what is going on at the time.

She woke up saying she wanted to come home. She said she felt REALLY SICK yesterday but this morning she felt better. She had her "Begging Speech" all planned out for her doctor but since she hadn't had a fever for 24 hours, I thought the chances were good to come home. We had already discussed this. I kept getting up in the night and making sure she wasn't getting a fever.

Thank you for your prayers:)

Katia told one of her nurses, "We came here just to get butt pictures, not STAY in the hospital." Poor thing... She was upset that she hadn't brought any toys to play with. ChildLife took care of that and brought her some toys to play with:)

I need to go check on some websites...

Lots of love, Tracy







July 10, 2006 5:50 PM
WBC 7.61
HGB 14.4
HCT 42.4
PLT 368
ANC 5631
Potassium 2.2

Here we are:)

Katia is feeling better right now. She has felt pretty crappy most of the day with fevers BUT she has no fever right now and even had a few bites of spaghetti. I would think she would be going food crazy right now but she really just feels puny and it is probably better to take things slowly.

The good news is they did the colonoscopy! I was so glad since she had gone two days preparing and I knew she wouldn't want to repeat that. It does show irritation which seems to be GVHD related. So, take care of the GVHD and we take care of skin, eyes, butt and all. That is the plan with the new treatments. That is the hope.

Someone emailed me what does 38.9 celcius equal? It is 102 degrees. Since Katia is on so many immunospressing drugs, her body really shouldn't be able to run a fever so when she does, we have to take it seriously until labs show what the cause is. Labs can't always show the cause because obviously there are a lot of bacterias and viruses that there are no tests for yet.

The plan is to get her to go 24 hours without a fever and clean labs, then we go home.

One problems that came up was her potassium was seriously low. It should be at least 3.5 and it was 2.2 so that has to be back within normal ranges also. She took some potassium supplement (nasty stuff!) and hopefully that will help plus she is on fluids with potassium.

What caused the fever? Not sure. Her little body went through a lot the last two days with hunger while on steroids and a few very runny bowel movements throughout the night. Plus she has had no sleep for the last few days to speak of. All of this wore her down, made her body weak and probably is to blame for the fevers.

We will see how the night goes and tomorrow morning and hopefully she can stay fever free.

I haven't had a chance to check on the prayer requests today so I can't really update right now on those. Plus, the connection here at the hospital is pretty bad so I run the risk of getting cut off.

I need to go check on some other kids. That is a part of my day just like updating Katia's page. I can't miss checking on others or I just feel, bad. I wish nobody had to go through any of this but I do know, from experience, that prayers do help in more ways than we will ever know.

Thank you for your prayers!

Love, Tracy








July 10, 2006 7:29 AM



It seems Katia has become quite sick overnight and had a fever when I woke her up.

Normal is 37.0 cecius. This morning she was 38.4. Now she is 38.9 and climbing.

It seems instead of the colonoscopy, she is here for admit. She doesn't know that yet.

Please pray for her as she feels really puny and quite bad.

I will update when I know more. I am having to update from my phone so I will have to keep starting new journals.

Love, Tracy

I need to call Myron at work.


*********

July 8, 2006 3:00 PM

Katia is basically in full hunger mode now. She is on a clear diet which doesn't agree with the other part of her that is on steroids. Basically there is just a constant crying/whining coming from her.

This goes on through today and tomorrow and then she goes in first thing on Monday (thank goodness) for her colonoscopy. The good thing will be if through all of this, they find out the problem causing her so much pain.

I remember back in 2003 when she stopped eating, completely in September and didn't eat again till like March or April 2004. These days of clear diets didn't effect her mood at all because all of her nutrition was coming through her IV. She had NO APPETITE whatsoever, at any time. I was amazed that her body was doing okay on just TPN and Lipids via IV.



So, just pray for Katia's happiness and for these 2 days to go swiftly by. She has stopped whining now and is actually staring out the front window humming in the rocking chair. She amazes me:)




Love, Tracy









July 7, 2006 4:15 PM

I am having some serious issues with typing for some reason so please ignore any typos....


I just updated Bella's prayer request with some GREAT news!

Katia had her appointment today with the GASTRO DOCTOR (we call him the "Butt Doctor") and that went well. She is scheduled for her colonoscopy on Monday. That means clear liquids for Saturday and Sunday. Nobody looks forward to those days because they really stretch out and include a LOT of whining and begging and pleading to get things. I feel so bad for her BUT hopefully we can get some answers from this colonoscopy and she will be thankful in the long run. We always tell her, "Someday you will look back on this and laugh..." but she doesn't buy that and neither do we most of the time. Hunger is just plain hunger, no matter how you look at it. She is 6 and on steroids to add to it all. As an adult, I have a hard time preparing for those types of procedures that require no eating for 2 days.

Katia's skin has actually shown some improvement over these last few days. Sometimes, I look at her and her face appears less red than other times. I don't know?

This coming Wednesday and Thursday, we also have our regular clinic visits with Thursday being the last dose of Pentostatin. We pretty well have a good idea of what we will do for her next treatments but I will share that later as we are still gathering some information.

I must say, there are a lot of good things being researched in the world of cancer. Hopefully some big changes will come about and save even more lives. When I look at the changes over the last 20 years, I am amazed and can only imagine where another decade or two will lead us.

Someone asked me the other day if I am a "Glass half empty or glass half full kind of a person." Well, personally I am a "Finish the drink and put the glass in the dishwasher kind of person!" BUT, in the world of medicine, I am a "glass half full" kind of person. I really think there are a lot of good things on the verge of discovery or approval. Just due to the use of Internet, doctors can better exchange ideas, cases, and findings in such a quicker method. They can view scans from anywhere and share opinions. They can read literature that is up to date and fresh. So much.

The kids and I like to watch "Little House on the Prairie and on some of those episodes where someone is sick with a fever or infection, my kids are GRATEFUL for the times they live in. That wasn't all that long ago when you think about it.

I am about to turn 37 (I know women aren't supposed to tell their age but...) and I tell you, 37 isn't as old as it seemed to me when I was 10 years old! Well I have until the end of August to continue being 36:)

I have gone on enough:)

Hope you have a good weekend. We just always plan on a good, quiet weekend.

Lots of love, Tracy



**********

July 6, 2006 5:14 PM

Well, I wanted to jump on here before the day got by me:)

Katia has been quite a ham today which is nice to see. The girls and her worked on a routine of dancing that was just adorable. Katia had a lot of fun but I think Sharayah and Tatiana had just as much fun. They all looked like they were about to fall down from all the bouncing around and activity. THOSE ARE GREAT TIMES!!!

I have updated some of the prayer requests but I didn't get around to adding some new ones. I will try to do that after tomorrow's appointment.

We have an appointment bright and early in St. Pete and neither Katia or myself are morning people. It is with the Gastro doctor concerning ongoing "bottom end pains" so I will see what he thinks we should do next.

Katia's sugar today seems to not be going much over 200 which is good but her eating is WAY DOWN from normal probably due to the drop in steroids. We are planning to drop even more next week. That is always a good thing but it also takes that beautiful appetite away and makes us have to force her to eat. She loses weight pretty quickly if she isn't eating. Today she has been eating soup mainly because she is just thirsty mainly, more so than hungry.

Her dance routine today was to "Grease" and she was dressed up in her Minnie Mouse dress with bobbie socks and tennis shoes. CUTE! I wish I could put the video online but I really don't know how to transfer from my video camera to the computer and then get the file small enough to upload. Not that savy.

Well, have a good day and I will update after tomorrow.

Lots of love, Tracy








July 5, 2006 3:15 PM

Hello:)

Just wanted to jump on here real quick. I am about to go check on some websites. I have been having some internet problems.

Katia is doing okay this morning. We are still having sugar issues. Her morning levels are great but as soon as she eats, everything goes out of whack. Right now she is at 289 and that is pretty much where she has been the last few days other than first thing in the morning.

We did step outside yesterday for fireworks. It seems we had 4 different shows going on, all in different locations of Tampa but we could see them from the house. No traffic to deal with, no crowds, perfect:)

Katia likes the ones that look like stars dropping down. She hated the really noisy ones. There were some people in the neighborhood doing fireworks so the noise went on for quite sometime into the night.

We did have a fun time down at the park. Katia only ate a couple of bites of her cupcake since she knows she is having sugar issues. She was very happy that they were Red, White and Blue and she was happy to pick out what she was going to wear yesterday that it looked festive!

Thanks for stopping by and checking in:)

Katia sends a BIGGGGGGGGGG hello:)

Love, Tracy







July 4, 2006 6:05 PM
New Photos Added to CB Album
New Photos Added to Yahoo Album

Hello:)

We had fun today! I just wanted to get on here and add some new pictures and put a different background up on the page.

We hope you each have fun today:)

Love, Tracy








July 3, 2006 5:45 PM
New pics in Photos

I just typed out this long update (not that I am usually long-winded) and it was lost when I hit enter. So, now you get the shortened version. I hear you, "Oh thank goodness..."

Anyway, Ms. Katia is doing well. She is playing with Tatiana as I type. She has had the Ogre Ears (pictured at top of page) on all day and has been quite happy and cheerful. She helps me when I need to check her sugar and it hasn't gone over 300 again so that is good. We are just keeping an eye on it twice a day right now. She will have her urine checked for sugar when we return to clinic.

Her eyes are about the same. Sometimes they REALLY bother her and other times, only a little bit.

I am not sure what tomorrow holds for us as far as the July 4th celebrations. I am not a big fan of noise (VERY JUMPY) but we may try to get out to a park during the day. Whether we venture out for fireworks in the evening has a lot to do with weather and how Katia is feeling.

Please continue to keep Jake R. in your prayers. I have also added a few new prayer requests above.

So, I guess that is the shortened version:)

Katia says to say hello. She is quite peppy today:)

Lots of love, Tracy





July 2, 2006 7:35 PM
2nd update today...

I want to follow up on the prayer request for Tonya and baby from earlier today. Tonya and the baby are doing well. The baby was born a little after noon and is in NICU. She was a little over 3 pounds and is being closely watched. Mom is doing well and they are waiting to see if her pressure will come down on its own. Thank you so very much for your prayers:)

Love, Tracy






July 2, 2006 10:20 AM

I have 2 prayer request this morning. Neither have webpages.

One is for one of Katia's Ladybug Club Members, Prayer Warrior and just a good friend. Tonya is 31 weeks pregnant and has been having Preeclampsia and they have decided to deliver the baby today via C-Section. Please pray for both Mom and Baby. Pray that everything goes well and the baby is doing well at birth.

The other is for a daughter of one of Katia's other Ladybug Club Members. She also just recently gave birth 5 weeks ago. The mom, Robyn is 26 years old and started having high fevers. She has been breast feeding all along and they are concerned whether the baby could have any problems from this. It ends up she has pneumonia and Mastitis so they have Robyn on some strong antibiotics and are trying to get the baby to learn to like the bottle.

More information can be found on Robyn and Baby via the website for Dale R.(CarePage Name: dalescancerpage) This is their daughter. There are even pictures over there.

Thank you so much for your prayers for these two Moms.

I will update on Tonya as soon as I hear more information.

Love, Tracy


********

July 1, 2006 6:42

Just wanted to get on here and let you know we are well. Katia is still having sugar issues but it seems to be caused by her meds. It was 318 this afternoon. We are watching what she eats but it isn't like she really eats all that much now anyway.

The feeling it is is being caused by the Prednisone and FK506, both of which she needs. We may put her on a more strict diet, depending on what the nutritionist says.

She goes in Friday, the 7th to see the Gastro doctors (at 8:30AM) so we will schedule what he thinks need to be done at that appointment.

Right now she is up and about playing with a rolling monkey she has. She has been having a LOT of eye discomfort today, more so than usual and her bottom remains about the same. Her eyelids are so thin and painful looking so I am going to call the Dr. in Miami to discuss what they think we can do about it. I am not sure if the eyedrops are helping or hurting her really. I know it is a fuss to do them each time.

Thanks for dropping in and please keep Jake R. in your prayers also.

Love, Tracy








June 29, 2006 6:54 PM
PLEASE SEE THE UPDATE PRAYER REQUEST

We are home:)

All went smoothly at clinic today. We did get to see Bailee quickly as she was at clinic also. It was nice to see them:)

I wanted to share a link about you. It is Rootbeer and Twinkies.

It is just something that made me smile:)

I am going to sum this up so we can get dinner and baths, etc. These days seem long but tomorrow is Friday and there is NOTHING planned! I love those days:)

Lots of love, Tracy







June 28, 2006 4:30 PM
WBC 5.28
HGB 15.2
HCT 45.5
PLT 344
ANC 3740

Hello:)

Clinic went well today. We get to go down a bit on steroids from 15mg a day to 12mg a day. That is good:)

Tomorrow we go back for Pentostatin.

Katia's sugar was good this morning, at clinic and when we came home. This afternoon it is a bit high again. I think it is probably due to the steroids and her meds mainly. A drop in the steroids should be good for her sugar levels.

Other than that, not much is going on here. That is always nice.

I have updated some of the prayer request.

Love, Tracy





June 27, 2006 7:44 PM
2nd update today

Hello:)

I just wanted to jump back on here and update today.

Katia is sitting next to me eating popcorn and watching Frasier:) We are kind of a "Frasier Family" (well at least the girls of us).

I heard on CNN today that "Eddie", the dog from Frasier, passed away today. We have watched this show for many many seasons and it is kind of a "bonding" thing with me and the girls. Much of our time in the hospital and at the Ronald McDonald House, we shared episodes of "Frasier". I am sure whenever the girls watch this later in life, they will think back to those times.

We have clinic tomorrow and Thursday. Tomorrow is lab day and Thursday is either the last or second to last dose of Pentostatin. I am unsure of the ending date of this Pentostatin Trial.

I was kind of surprised today. I checked Katia's sugar level, just out of random chance and it was quite high at 247. She had just taken a 3 hour nap so I expected it to be around 100 or so. Anyway, I rechecked it a bit later and it was a little higher at 258?

Pray this is not causing problems again. Her sugar level shouldn't be much of a concern right now as her steroids have gone from 30mg a day to 15mg a day. Her diet has been great, nothing high sugar or high carb counts. We will see. Maybe it is just something that will pass.

Other than that, it has been a pretty quiet day. I appreciate those more than you may know. I always think back to when I used to wish for these days:)

Lots of love, Tracy







June 27, 2006 1:30 PM

Angel Benny P. passed away this morning around 5:50. Please pray for his family at this time. He had fought Stage 4 Neuroblastoma since January 2004.

Love, Tracy







June 26, 2006 8:10 PM

Better late than never:)

As I type, Katia is having a kind of "breakdown". Things just aren't going her way these days. She can't seem to make up her mind, especially when it comes to eating. I am really surprised that Sharayah and Tatiana can deal with her the way they do. Don't get me wrong, they have their "sisterly disputes" but I have to hand it to them, their patience is definitely being measured.

I feel bad for Katia, we all do. We know this is pretty well out of her control. What she wants she either can't do or her body doesn't want.

BUT, she has had some good times and some very good moments. Yesterday, we took her down to the park for a bit and she is able to do three things she hasn't been able to do. She could hop, with both feet at the same time. She could walk a straight line, one foot in front of the next and she could criss-cross walk without losing her balance. These are all big advances for her as it is showing her balance and strength are improving. So, we were happy and she was quite pleased with herself:)

I look very forward to the day I have to tell her, "Stop running in the house." She can SCOOT quite well now which is an improvement in itself. She likes to be "chased" or try to "chase" us. She is happy scooting along so we play her game, at her speed:)

I do have a prayer request to add here. I will add it up to the top if I can but my computer has been acting up quite a bit and keeps cutting me off. I fear losing the HTML coding that makes this website so I am staying away from the top of the page right now.

Heidi was diagnosed a few years ago with End Stage Lung Disease, BOOP, Primary Pulminary Hypertension, and Pulminary Fibrosis. She is a mother and just a beautiful person. Her body has just been through so much and she was recently, again, rushed to the hospital. She is having quite a few new problems and has some upcoming procedures to go through. I encourage you to pray for her, her family and for her doctors. Thank you:)

If you haven't checked on Jake's site lately, he is improving slowly and needs prayers for strength. His little body has gone through so much. His ANC is slowly rising which is a really good sign.

Also please continue your prayers for Babies Jacob and Asher as they continue to have their ups and downs. Jacob is now finally peeing more normal amounts and showing improvements. That is due to prayers:)

Thank you so much for stopping by to check on Katia and the many many others in need of prayers.

Lots of love,
Tracy


***************

June 25, 2006 7:30 PM

Hello:)

Thank you so much for the comments in the guestbook. I like signing on and reading your thoughts on what I have said or what is going on in your life:)

Some of you, if we don't see post for a few days in the guestbook, we wonder if everything is okay with you. (You know who you are).

Katia is doing okay. Just "butt pains" but that seems to be controlled with the codeine. It seems she may either have GVHD irritation there or maybe some type of internal sore but we should find out soon. I told her "we will look into it" and she didn't take those news very well. She knows I mean a colonoscopy. The next thing she asked is that would she be asleep for it, ("Happy Juice") and I said, "Of course." Then she was okay with it. I think she wants the problem to be found too.

Her eyes? Well, they look the same but the eye drops do seem to give her some comfort. Whether or not they are fixing the problem at all? Not sure. I am sure we will not retest her for a few months to see what is going on with the GVHD deposits.

However, we are planning to start a new treatment for her GVHD in the next few weeks and hopefully that will clear the problems all the way around. Skin, eyes, butt, etc. That is our hope. If we can get the GVHD fixed, it will solve a few problems.

The thing I am most thankful for is, she has remained leukemia free! That is a HUGE thing to us! With the treatments she received to be cancer free, there are side effects. We knew that. Our minds at the time were set on getting her into remission and killing the cancer. We knew good and bad cells would be killed.

Someday Katia will hopefully be cancer free and GVHD free as well as on her road to growing and just being her happy self:) I think so.

Thanks for checking on Ms. Katia and please keep her in your prayers as well as the many many others in need of prayers.

Lots of love, Tracy








June 23, 2006 12:24 PM

As many of you know, the last two nights there was a PBS special, "Lion in the House" about families with children diagnosed with cancer.

I have gotten quite a few emails from people who watched one night or both nights and their thoughts on the show. I figured I would share my thoughts on the show as well.

First, I think it was a good idea on how they followed the families for a few years at least. It gives a much "bigger picture" than what would normally be seen on a news segment. The sad thing about following them for years is the outcome wasn't good for all of the families. There were 5 cases brought into the documentary. Two were diagnosed later in the show and 3 had been diagnosed previous to the starting of the documentary.

It showed kids going through treatment, spending a LOT of time at clinic and in the hospital. It also showed the rolls of the doctors and nurses taking care of these children.

First, I have to say one thing I am extremely grateful for in Katia's years of treatment, is the fact, we deal with the same doctors. She does have a different group of doctors dealing with her from pre-transplant workup through now but we still go to the same clinic and are able to see the doctors that dealt with her from the day she was diagnosed. I think that is just a real blessing. For one, they really know Katia, her history of treatments, her ups and downs, her "moods", her likes and dislikes and she is always eager to see them (although that may not be the picture she portrays sometimes). The other thing, is they know me. They trust and respect me. They know how I think, they know how I feel about a lot of things and the know what kind of person I am. That helps us all be able to work together toward one goal, getting Katia better:)

It is difficult to have to give Katia's "history" of treatments because for one, there are a lot of details and two, I don't have the best memory. I also think having to quote the history makes a person miss out on a lot of details.

This website has been a great tool for me tracking her history as it goes all the way back to January 2002, months before she was even diagnosed with leukemia.

In the documentary, each child was different, from different backgrounds, different family surroundings, different diagnosis and different treatments. "Kids will be kids" was definitely shown in the making of this documentary because it was easy to see things weren't rehearsed or planned on all the time. The families' reactions to different news was heartbreaking as we can definitely put ourselves in their shoes. I think even people who don't have a child facing cancer, can feel for these parents. There are many many tough decisions by the parents, doctors and staff.

Sometimes it seemed as though the doctors and parents were going in different directions but they were seeing things from different points of views. The world of cancer doesn't give much room for planning in my eyes and although it is nice to have plans "A", "B" and "C" a lot, that isn't always possible.

When I first heard the show was going to cover 5 cases in just 4 hours, I thought that wouldn't really be enough time to truly share their journey and give a feeling of who these kids and their families really were. I think I was wrong on that. I think it really gave insight into each family and each case. Of course, it couldn't give a total insight.

I know some of you have taped the show and haven't seen both parts yet so I don't want to give to much details of the ending but I will say, I did go up and down with the hopes and reality for each family. There are times when it seems everything is good, or bad. It seems you can see what is going to happen in the long run but then, that isn't the way it always happens.

We can see that a lot with Caringbridge Children and families. It is true that none of us are promised tomorrow, whether we are facing illness or not.

My personal feelings is there is no way to prepare for how we will feel when we lose a loved one or how we will handle things. I can't even imagine losing one of my children or my spouse. I think one would assume that if you live in the world of cancer and face the ups and downs that it would more prepare one for loss but I don't feel that way at all. I do know that since I haven't gone through a loss of one of my own children, I certainly can't say I know what it feels like. I can say, I don't ever want to know what it feels like. I don't want anyone to know what it feels like. I told one of Katia's doctors the other day that I wish the world didn't even need oncologists! I wasn't trying to be mean but that is the truth.

The sad thing about this documentary is the fact there was so much to go on. It wasn't about diseases that are unheard of or that most of us will never face in our lifetime. It is something there is way to much of, cancer. The fact that there is so much research and facts and figures means that so many people have, are and will face these diseases.

I hate the thought that someone's future holds a cancer diagnosis in it. I pray for the day that the word cancer isn't something that takes your breath away. I pray someday for a treatment to cure cancer or even to prevent cancer.

The documentary made me look at Katia and just be more grateful than ever that she is here with us, that she has a great team of doctors and that we are able to be hopeful for Katia's healing.

I know I never want to have "the discussion" with Katia's doctors about, "there are no further treatment options" and "what our wishes are". I just don't want to ever get to that point. I don't want to have to make those types of decisions. Nobody does.

Although I have never faced losing one of my children, I am pretty sure if I ever did that it would not be something I could really, "Get over" or "Get passed".

When we decided to share Katia's story the first time on the news or when I decided to start this website for her, I did so knowing that things may not always be in a positive light. I did so knowing that I would be honest in sharing her story and my feelings. Katia is just one of the MANY "faces of childhood cancer".

My hopes is that someday, Katia can take over her own sight, share her own story and tell the world how she not only beat cancer but about how she was around for the day CANCER WAS BEAT!

Lots of love,

Tracy







June 22, 2006 4:55 PM
2nd Update Today

Just wanted to let you know Jake is off the vent!!! What an answer to prayers:)

Love, Tracy




June 22, 2006 12:26 PM

Just a quick note to let you know there are new pictures. The 3rd one in the CB Photo Album is a picture similar to what Katia's eyes look like showing the deposits from GVHD on her cornea. This type of picture is taken by using a type of eye drop stains to show the deposits. It kind of lets us know more of why her eyes are so irritated feeling.

The "Pet Rock" she is holding is actually a rock that looks JUST LIKE a potato! I mean exactly. Myron found it in the desert when he was in the military. We have had it around the house since then (like around 1993). We were talking about something the other day and Katia went and found the rock and has been "taking care of it" ever since.

It reminds me of Home Economics Class when they used to make you carry around an egg or a bag of flour for a week to see what it is like to have a baby to take care of. Obviously Katia's "Baby" couldn't get hurt too bad. If she drops it, the only thing damaged will be whatever she drops it on...

Anyway, I thought it was cute how she was so "into" taking care of this rock:)

Love, Tracy









June 21, 2006 8:04 PM

Hello:)

I decided to start a new journal entry.

All is okay here. Katia remains about the same with her "butt pain" but we have a few thoughts on it and are trying to figure something out. For now, she is hyper one minute, lays down the next and once the pain goes away she is back up and hyper again. I just appreciate the fact that she can put it behind her (I guess literally) as soon as the pain passes.

Her eyes are about the same. They are still quite red and irritated, about the same as they were but she doesn't complain about them as much. I am not sure if she doesn't want the eye drops so she doesn't complain or if it really is better.

I will upload some pictures tomorrow that I took as well as a graphic that shows what the problem is on her eyeballs causing her the discomfort and pain.

Right now, I am trying to type this with a few different conversations going on around me... so excuse any typos.

I also added a prayer request above for Bella, a little girl who had transplant for leukemia AML but is now in need of a kidney transplant due to kidney damage from treatments. Please pray for her and her family. Her daddy will be her kidney donor.

I will gather my thoughts together better tomorrow:)

Love, Tracy



*********

June 20, 2006 9:00 AM
Please see prayer request above for Babies Jacob and Asher.

Also, I wanted to share with you an article on Estephany that came out in the paper this morning.

6/20/06 Tampa Tribune Article-Estephany

Please keep the Murillo Family in your prayers today as Angel Carlos is being laid to rest.


Love, Tracy





June 19, 2006 6:30 PM

WBC 3.5 (low?)
HGB 15.3 (high)
HCT 45.0 (high)
PLT 279 (good range)
ANC 2300

Katia had her IVIG and all went well with her today as far as that is concerned.

Her heart rate is staying pretty high and has since I decided to check it last night. It still is now that we are home. Right now it is around 148 bpm. This is due to pain right now. Her butt is REALLY bothering her right now. I am not really sure why other than she probably has some inner tear somewhere. Usually codeine helps her but it isn't really doing the trick for her right now.

I know this sounds pretty minimal due to all that has been going on with Caringbridge and CarePage kids but when it is Katia, my heart is right with her and I just hate to see her in pain. So, pray for her "butt pain" to ease up.

Since IVIG is a blood product gathered from a LOT of donors, there is always the chance of a reaction but Katia has always done well with these transfusions. We run it into at a slower rate and she gets Benedryl, Tylenol and Zofran before the dose.

Please keep Carlos' family in your prayers as they have his funeral first thing in the morning.

I was speaking to someone today about just how bad this last few weeks has seemed and all we can pray for is to someday find a cure to these horrible diseases. The newest findings to help prevent Cervical Cancer are a big step in the right direction and research is being done everyday. There have been some great medicines to come out of research that has advanced things so much just in the past 20 years. There are so many new ways to diagnose things earlier and more treatment options. As you pray, please always remember these doctors, nurses, researchers and just everyone involved in the hope to bring better treatments and some day find a cure.

As far as the families who have just recently lost loved ones and those that have lost loved ones over the past years, please always know the importance of continuing to mention their loved one's name. Please continue to check on their sites and leave messages of encouragement. I, not knowing first hand cannot imagine their pain but I can imagine that it never goes away. I think a person just has to learn to live with the pain.

What brought me to the point of even starting Katia's Caringbridge page was the fact I think everyone deserves to be known and everyone can make a difference. Even if they are only on this earth a short time, the more lives they touch will forever be changed by their time here on earth. So many of these that have passed would never have imagined how many lives their life would touch or continue to touch even after their passing.

Thank you for your care and compassion and taking the time to stop in and share in our day as well as countless others.

Love, Tracy










June 19, 2006 8:15 AM

I hope many of you had a Happy Father's Day. The girls made Myron a nice cake and cards and Sharayah made a Father's Day Plaque from each of the girls. He worked in the morning but came home to some very anxious kids:)

We are off to clinic today for IVIG so this is the day we pack up some food and games and make a day of it.

Always, as a side note, I want to mention that IVIG is a blood product that comes from thousands of blood donors. Each time Katia receives this, I think of all the donors that made it possible. Regular blood and blood product donation is so necessary to become a part of if your health allows.

I get messages in the guestbook about some of you that donate blood and blood products and what the experience was like. I love to hear those stories and I thank you for sharing them with us:)

There are some great entries in the guestbook about "Locks of Love" hair donation, people registering as bone marrow donors or that have been called as a match. I really appreciate those entries, not just for us to read but many others:)

In Florida, ALL blood times are needed nearly ALL the time. Thanks:)

Well, I better get myself together so I can leave here. I try to let Katia wake up on her own (she isn't quite the "morning person") but I don't think that is going to happen today. She had a late night last night that she just couldn't fall asleep.

Thanks for checking in:)

I will update later in the day, after clinic.

Love, Tracy







June 17, 2006 2:14 PM
2nd update today

Service information for Angel Carlos Murillo is above in the Prayer Request Section.

Love, Tracy




June 17, 2006 10:23 AM

First, please keep the Family of Angel Hanna in your prayers as she passed away last night a little after 8:00 PM.

I have been getting a LOT of emails this week about just how hard this week has been on Caringbridge Families and other families. It certainly has. It is heartbreaking to say the least. I can usually type a lot about almost anything but not this. All I can say is it really is just heartbreaking and each of those families is in our prayers at this time and will be for months and years to come. The grief never leaves. I think a person can only become used to living with the pain of the absence of their loved one. I don't think it could ever get easier and I am GRATEFUL to say we have not personally faced this. Katia is our living miracle and I am just so very very grateful for her life and her ongoing healing.

Carlos' services are planned to be this upcoming Tuesday. I will put more information when the plans are finalized. It was very hard for them to return home without Carlos. They had read about Katia's homecoming and were so eager to do the same with Carlos when he was ready to leave the hospital. Carlos was such a big part of their life, such an energy in their home and he will be forever missed. Please keep their family in your prayers.

On a better note, last night we were able to attend something that was just inspirational.

The Climb for Cancer Foundation donated $25,000 in memory of Angel Jerry Gomez to
Moffitt Cancer and Research Center.
The funds are to help expand their "Talking With Your Child About Cancer" program to help the children whose parents are facing or have passed from cancer. Of course, Jerry's passing left behind his wife Carol and their triplet 8 year olds, Julia, Max and Robert. Jerry's Mom, Uncle and some of his sibblings were there for the presentation and it is just a beautiful way for Jerry's life to live on in helping others. He so much wanted to be a part of helping others and to speak on behalf of the Katia Solomon Foundation after beating his own cancer. Jerry, like Katia, had a hard time finding a marrow match and never found a perfect match. He wanted there to be a match for anyone needing a marrow transplant.

Let me close out with a small update on Katia's current condition.

Katia is doing about the same. The eye drops seem to bring her comfort some times and at other times aren't really making a difference. She has become very good at taking the eye drops though and we are all proud of her and she is proud of herself. She handles it like a CHAMP! We are going to finish out the Pentostatin treatments in about 4 weeks and then change to another drug. I will put more info on that when we reach a starting date and final decision. The whole point of her eye problems is the GVHD and until we can get that under control on her skin, in her mouth and in her eyes, the eye problem and other problems will continue. Her mouth looks REALLY bad right now. Her fingers are looking bad again around her finger tips and nails but she isn't complaining about the pain. She does take Codeine 3 times a day and we are going to try to get it down to 2 times per day. Katia continues to be bothered by "butt pain" many times throughout the day but laying down seems to help her get through that.

Right now however, she is playing with Tatiana in her castle and laughing!!! I am so happy when she is happy. I am hurt when she is in pain. We all are. We all love to see Katia around the house, playing and just posting those pretty little hand prints on any glass surface possible!!!

A really good thing is the other day, when we went to clinic, my dad was with us. He walks pretty fast so Katia wanted to beat him to the clinic door (I always let her win). Anyway, she actually went quite quick. Not a run, but not really fast walking either. She has not been able to go that fast for quite sometime. It made me happy:) Hopefully she will be back to being able to run soon. She has so much energy and spunk in her. Her balance is much better, her appetite is GREAT!

So, thank you for your prayers.

Thank you for following the Prayer Request section above and for leaving such kind and encouraging messages.

Lots of love, Tracy







June 15, 2006 6:25 PM

Please pray for Angel Carlos Murillo's Family as he passed away today in ICU around 4:00 PM.

Katia and I were at clinic so I was able to walk over and be with the family for a bit until Myron arrived. He is there with them now. Although Carlos had been very sick, this came unexpectedly and the family is in shock. Maria Jose (who normally update Carlos' CB Site) asked me to let people know that she will update when she is able. It is taking all her strength to just face the fact she no longer has her brother with her.

This family was so strong, have so much faith and just surrounded Carlos with love each and every hour of every day. Maria felt bad as she said this has been such a hard week with Caringbridge Families as she keeps up with Katia's site also. She has seen the other children that have recently become Angels. Her heart goes out to each of them.


The Murillo Family


Carlos did not have life insurance and are very shaken up about the decisions they will have to make in these next few days. If you would like to help the Murillo Family, donations can be made via
The Katia Solomon Foundation.

Please keep his mom in your prayers at this time for her blood pressure. She is having blood pressure issues right now.

I will update more on Katia tomorrow. She is doing okay but we have some ideas on a change of treatment for her GVHD. She did have the Pentostatin today.

Love, Tracy










June 15, 2006 10:55 AM

Please keep the family of Angel Nolan in your prayers at this time. He passed away last night around 7:10 PM. He was surrounded by the love of his parents at the Childrens Hospital of Illinois.

Love, Tracy

PS I will update more after clinic today.







June 14, 2006 8:00 PM

WBC 6.72
HGB 15.2 (closer to normal, still high)
HCT 45.9 (high but coming down)
PLT 300 (great!)
FK506 9.0 (good)
IGG 456 (low-needs IVIG transfusion)

I wanted to start a new journal page here.

We had a nice day today. We went to clinic which went well. Katia just got her port accessed and had her labs done.

Then we walked over to the Ronald McDonald House to see Estephany and her family. Myron was over there for an interview with the family and the Tampa Tribune. I hadn't been able to see Estephany since her return. She looks really good! Myron NOR I had our cameras! Can you believe that?

Anyway, we also got to see Carlos' sister and Mom. He is remaining the same right now. He needs your prayers and his family also. They are going through a lot right now as ICU is not a good place to be. You are surrounded by so much going on all the time.

Katia goes back to clinic tomorrow for her Pentostatin dose. She is eager to go back so she can have this week behind her. She is like me, just get it done and over with!

Her eyes aren't so good today. They seemed to improve a bit for a few days but then today they are quite irritated. She also has been having headaches on and off which really isn't like her. Normally she has eye pain or "butt" pain not headaches. She doesn't like headaches (who does) because she says it makes her head hurt...

Anyway, she has another joke to share with you but she said today wasn't a good day to tell a joke. Hopefully she will be feeling better and happier tomorrow.

She did enjoy seeing Estephany. They got to play a bit at the Ronald McDonald House and Katia loves that playroom! Her and Estephany have matching face mask.

Since Katia's IGG level is low, she will probably get her IVIG transfusion (the long one) early next week. Not sure yet.

I need to sum this up (I know I can babble). The girls want me to come watch a show with them and I said I would at 8:00 PM. I am 9 minutes late:)

Thanks for checking in.

Have you seen Jake R.'s updates:)

Love, Tracy


Katia on VIDEO with a Joke for You (6-12-06)...



**********

June 13, 2006 12:40 PM



I am pretty much at a loss of words today after the day yesterday with the passing of Jacob the night before and Will in the afternoon.

There are so many in need of prayers right now. There always are. That is the sad thing about all of this. There isn't a "Holiday" for these diseases to give people time off.

I wanted to put a little video clip on here of Katia today. She has a joke to share! It was really nice to hear her telling us some jokes last night around the dinner table. She makes us laugh and we are so blessed to have her. I just wanted to squeeze her to pieces last night because she makes me so happy and I know what a true miracle and blessing she is.

Today is not a very good "eye day" for her though BUT they do seem to be improving slightly. Hopefully over the next few weeks of doing these drops all throughout the days, she will feel great relief. I think so. I am believing this will work.

The storms passed us by yesterday only leaving us with some very very needed rain. It sounded great to hear the rain coming down. We have had a very dry few months.

Tomorrow and Thursday Katia will go to clinic for her regular appointments and Pentostatin Dose.

I did hear from the doctor's assistant that we were supposed to have seen in Miami. She was very nice and apologized for the inconvenience. It was not their fault but the fault of the overall appointment line I feel BUT I do think we got some positive answers on Katia's eyes so we are pleased.

I got a DIRECT number to the doctor in case we feel the need to make another appointment with them in the future so we will see.

Thank you so much for your prayers and for following the links to the other prayer requests. Prayers are so appreciated. I know I say that all the time but it is the truth.

I will try to get a clip of Katia telling her joke (or jokes) on here as soon as she is able to. I think you will get a good laugh out of her bubbly sense of humor.

Lots of love,

Tracy

Added: 1:40 PM
Katia on VIDEO with a Joke for You...

Hopefully the clip plays for everyone:)









June 12, 2006 6:10 PM


Angel Will B. passed away today around 4:10 PM Central Time, at St. Jude Hospital. He had fought a courageous battle against leukemia AML since June 2004. Please keep his family and friends in your prayers at this time.






June 12, 2006 11:53 AM

Angel Jacob D. became Heaven's AMAZING ANGEL last night. Please pray for his family at this time.

Love, Tracy










June 10, 2006 6:41 PM
2nd Update today.

I just have to ask you to visit those in the PRAYER REQUEST SECTION

After I updated, I visited sites and my heart is just breaking. I know how important prayers and words of encouragement are.

There are a lot of families in need of your prayers and encouragement at this time.

Summer is supposed to be a fun time for kids, out of school, playing outside and just being kids.

Throughout Katia's journey I have learned that making the most of even the smallest of moments makes many lasting memories. I see so much more than I used to see before. I notice the smallest little looks and gestures.

I feel so guilty when I get upset or I feel that I lose patience at things. I try not to grumble but I also am determined to be Katia's advocate for her care as best as I can be.

I will need to add some more prayer links over the next few days. Sometimes I feel like the bearer of bad news but at the same time, prayers surrounded Katia during her roughest days because of "word of mouth" and others sharing her story.

I remember how touched we were that people were praying for Katia, a little girl they had never even met.

I am amazed at the love and compassion in this world. I wish sometimes they would share more of that on the news. There is a lot of caring individuals that have come together for the benefit of others.

I know as I lay down to go to bed tonight, my prayers will be for many many plus those that I don't even know need prayers. God knows who is in need of prayers. God knows our hearts and what we are going to say before we even speak the words.

Lots of love, Tracy








June 10, 2006 5:20 PM

The Miami Pictures are up FINALLY. Sorry it took so long.

Katia is being a champ with these eye drops. She just needs some pleading and extra loving:)

Please keep Jacob D. and his family in your prayers. The latest update is just not good news at all. It has been on my mind all day the pain they must be feeling.

Love, Tracy

Estephany's Page has been updated with pictures of her return to Tampa. She arrived safely yesterday along with her Mom, Dad and baby sister:)


**********

June 9, 2006 12:58 PM


We are home!!!

What a perfect flight back... couldn't have been a bit better. The sky was perfect and the pilot and plane were just fantastic!!

Thanks Mr. Bruce:)


Well, I am going to put together some pictures from the trip and get them posted in a just a bit. There are a lot to go through (you know us).

Lots of love,

Tracy

PS I am working on the pictures right now:)


*********************

June 8, 2006 6:15 PM

Well, today was a long and basically irritating day (to put it honestly)

Due to a mixup, the doctor we were supposed to see was out of town as well as his partner.

I was beyond upset to say the least.

Let me back up to yesterday though. I made hotel reservations online, prepaid. I won't mention the name of the hotel. Anyway, it was the Roach Motel!! It was downright scary and smelled like mold. Not anything what it looked like online. Those were touched up Photoshop photos by a pro. Myron immediately called the front desk. They knew Katia's situation ahead of time by the way.

Katia ended up with a nice red rash immediately, we put our stuff back in the rental car and Myron went to discuss a refund. They did give a refund and apologized.

Anyway, we hit the road going from hotel to hotel pricing. WOW, things are expensive at the last minute and basically in the whole area by the airport.

This gets better though. After 4 stops, we found Fairfield Marriot. They are normally $99 a night BUT they have a discount for those going to the medical center!!! THAT MADE IT $20 LESS PER NIGHT THAN THE ROACH MOTEL!!! God is good:)

They even gave us free breakfast vouchers!

So today we started out on a good note. Katia was nervous but she knew she had to see the eye specialist to help her.

After finding out the doctor she was suppose to see wasn't there, I got very very frustrated.

After checking things out, a lady said another doctor could come down to see her. He was very nice to us and apologized for the mix up. He put some "dye drops" in her eyes to check her corneas and found them to have many "deposits" an them, like filaments. He says this can definitely be painful and cause light to really hurt her eyes. He also said it is probably being caused by the GVHD. Then he dilated her eyes and found retinas and optic nerves to be in perfect shape.

He will share this information with the doctor she was supposed to see when he returns. Right now they say she needs eye drops hourly for added moisture and eye ointment at night. She isn't at all happy about eye drops every 6 months, much less hourly so this is going to be quite a big thing with her. Her eyelids so easily flip back when you try to open her eyes. It hurts and scares her. Hopefully she can become comfortable with this routine and find relief in it. I pray so. They feel she should see a Cornea Specialist if this doesn't give her relief and repair her corneas.

So she had a LONG day. Now she is bathed and drawing and happy.

We get back on the Angel Flight in the morning at 9:30. We should be back in time to see Estephany and her family return.

God has definitely been holding our hands through this trip and we are grateful for being able to even make the trip. Please pray for a safe flight tomorrow. Our pilot is great and we look forward to our return trip on his plane.

It is eye drop time...

Lots of love,
Tracy

PS
Sorry for any typos. I can't really see as I type on my phone.


Wednesday, June 7, 2006 5:51 PM CDT

I am updating with new journals each time, so you can catch up via the Journal History on the past few entries today.


We are here in Miami and in a hotel (long long story about the hotel-I will share later).

But, we are here, Katia is happy and I know God is with us each step right now. We kind of got in a jam with the hotels but it worked out better than we had planned.

I forgot my cellphone charger so if you need to email me, email me at tracy@ladybugkatia.com and I should be able to check that one easier.

The appointment is tomorow at 1PM.

Lots of love, Katia says HELLO:)

Love, Tracy


Wednesday, June 7, 2006 2:38 PM CDT

We have landed!!!

Bumpy trip... Katia did better than me.

We are here though:)

Thank you for your prayers:)

Love, Tracy


Wednesday, June 7, 2006 1:00 PM CDT

We are getting on the plane!!!!

Love, Tracy


********

June 7, 2006 11:59 PM

Well, we are about to head to our flight to take off at 2PM. It is an Angel Flight (6 seater plane) and Katia is VERY VERY anxious to get out of here and fly. This will be her first flight and my first time flying since 1998.

It has been quite a hectic morning getting last minute things done and Katia buzzing around her excited. She wants to pack a lot of stuff to take but we are limited to taking 2 bags at 25 pounds each. So, I keep taking stuff out and putting it away:)

I will update while I am gone via my phone so my spelling may be off. I will have to do it by starting a new journal entry each time so you may have to check back with journal history if you miss something. I will give you up to date info like taking off, arriving, Katia's MOOD FLYING, etc. so stay in touch:)

I will be able to check on other kids' websites but unable to update Katia's page with the prayer request so please keep everyone in your prayers. We can also check the guestbook and such. Don't you love technology!! I would be lost with it.

If you would like to email me, you can at tracysolomon@tmail.com. That comes to my phone.

Please pray for safe flying, Katia feeling well and happy on the flight and for the trip.

We come back on Friday earlier in the day.

Right now, Estephany is due to come back from Cincinnati on Friday also so we are trying to line up some plans for them as well.

Thanks so much for your prayers.

Lots of love, Tracy










June 5, 2006 1:30 PM
New Photos added...

Hello:)

Well, we had to make an unexpected to trip to clinic because Katia's cough was just getting worse.

We did a chest x-ray, a nasal wash to check for infection and a CT of her sinuses. We did find out her sinuses are totally clogged up again which explains quite a bit of her coughing and overall cold symptoms. So, she is on another antibiotic for 21 days and hopefully that will clear her up.

She did very good with everything, including the nasal wash!! She hates those but I think she is learning the better she acts, the quicker it is. I am getting a little too weak to really pin her down. She sat up and handled it like a BIG GIRL:)

For the CT, her head gets put in a little head rest so her head is upside down. Although she hates that, she did it like a PRO. The chest x-ray, she just walked right up to the machine, lined herself up and was ready:)

All in all, it took about 30 minutes to get everything done and we were on our way home.

She is eager to fly on Wednesday. We were talking about it on the way to clinic. Although we know this will probably just be an "evaluation" type of appointment and she will have to return for more visits, we are very hopeful to get on the right path for her eyes and getting them feeling better.

I am going to try to take some pictures today so I can replace the pictures on the site. It is a nice day outside and Katia is feeling "pretty" today:)

Please keep Carlos in your prayers. We seem to be getting hold of their voice mail and the same thing when they try to call us. I am sure things are hectic for them right now and I pray Carlos will overcome these problems and be back on the road to recovery.

Also, keep Jake, Jacob, Joshua and so many of the ones listed above in your prayers. I know they help and the families are encouraged by your prayers. We enjoy reading your guestbook entries and thank you:)

Katia is sitting here listening to me with her stethoscope because I coughed:)

She is going to make a great doctor!!

Love, Tracy










June 4, 2006 2:30 PM (PRAYER REQUESTS UPDATED ABOVE)

Please keep Carlos in your prayers. He has been rushed to ICU. He has fluid around and in his lungs. I will update as I find anything out.

Love, Tracy


***********

June 3, 2006 10:22 AM

Hello:)

I have added some more prayer request above.

I wanted to update yesterday but each time I came to the computer, I kind of got a sense of being overwhelmed. Let me explain. Since the beginning of Katia's journey, we have had so many ups and downs and it just wears a person out. Of course, we always hope there will be a CURE for cancer but the thing I hate the most is knowing that others are going through what we have gone through and continue to go through. It breaks my heart to hear of a newly diagnosed person, to know their family's life has just been thrown in the wind and they have no idea what the next day brings or any day thereafter. It is like living in the "Land of the Unknown". I for one, am pretty much a control freak! I hate not knowing what is going on or being able to plan things. When it comes to Katia's health and ongoing issues, I have learned to face each day with a bit more patience, knowing that we and her doctors have as much control over her situation as possible. I am thankful each day for Katia's health, healthcare team (which consist of a lot of people) and most of all for Katia being here with us and just being the little jewel she is:)

I AM SO THANKFUL!!!

This weekend is the All Children's Hospital Telethon which I used to actually watch before Katia was diagnosed (along with the St. Jude Telethons). So many kids are helped by these hospitals, even if they aren't a patient of these hospitals. Each hospital does research that helps everyone, everywhere to find new treatment options, medicines to help side-effects of treatments, better cure rates, etc. If you would like to make a donation, you can do so by visiting the link above. It can be done In Honor of Katia. (1-800-270-8642)

They have said on these telethons in the past that it is the phone calls of $5, $10, $20 donations that add up most of the overall funds raised in the Telethon. Last year they raised, $4,146,983!!

How is Katia? Well, Katia is still sleeping right now:) She didn't actually go to sleep until around 3AM. She has been sleeping less and less lately it seems. Actually, I hear her waking up right now as I type. She comes in and out of our room at night and she is totally awake, not sleepy at all. She came in around 2:30 and had to use the bathroom and said her eyes were really bothering her. I got her taken care of and walked her back to her bed. She said, "I wish I could just sleep so my eyes don't hurt!" I felt so so so bad for her. In the afternoon yesterday, she took a nap to help her eyes feel better.


Nap Time


We woke her up to eat dinner. I feel bad waking her up because I know she feels better when she was asleep but I want her to eat also.

We are scheduled to fly to Miami (via an Angel Flight) on June 7th and return on the 9th. I am really hoping they can do something and that this isn't just an appointment to evaluate. It could be that she have to return for treatments. I am not sure. (That is where we practice patience)

Her cold and cough is about the same. Her cough is harder sounding and not as "productive" sounding right now. Her lungs sound fine though. She just needs to haul off and kick this cold really hard in the butt!!

Well, I better go. Morning routine for Katia is about an hour of whining mixed with giggling, taking medicines, and eating breakfast after about 10 minutes of going through her options:)

That cough sounds horrible!

Love, Tracy










June 1, 2006 5:45 PM (SEE PRAYER REQUESTS FOR NEW ENTRIES)
2nd Update Today

I have another prayer request to add here and I will add it above.

Before I add it, I know a lot of people email me that they don't know what to write in the guestbook of others, especially when things are very stressful or not looking good for the person in need of prayer.

The whole thing that started The Katia Solomon Foundation was the saying, "Sharing Hope on the Wings of a Ladybug". We felt that is what we felt and that Katia portrayed in her day to day life. She has always been so concerned of others more than herself and just by doing something nice by smiling, waving, drawing a picture, we told her she was helping someone feel better.

Since Katia's story was touching so many lives via fight for cancer covered on the news here in 2002, her desperate need for a marrow match on the news and radio in 2003, her website and just so much more, we thought that by sharing Katia's story, it would indeed help others. So, "Sharing Hope on the Wings of a Ladybug" is just that.

The "Ladybug Club" and its bracelets, bags and such were on the same lines. If someone approached someone with a bracelet, bag or something else and asked about it, it gave someone the opportunity to share Katia's story and how lives could be shared by donating a newborn's umbilical cord or registering as a marrow donor. We want people to tell others how important regular blood and platelet donations are. I can't count the number of transfusions Katia has had of blood and platelets, sometimes, two times in a day. It has saved her life to have her blood type readily available. There were times, it was in very short supply.

So, with that said, let me pass on this new prayer request.

Thank you so much for following these links and sharing your encouragment and praying.

Lizzie was diagnosed with a rare liver tumor called hepatblastoma on April 1, 2002. She is now 13 years old. It has since then spread to her bones. During the past 4 years she has had 6 surgeries, radiation to her hip, spine and left arm, dozens of chemotherapy protocols. All I can say is her cancer is rapidly progressing, she needs prayers, strength and a LOT of encouragment. I know Katia's friends are great at encouraging and praying so I urge you to stop by. "Sharing Hope on the Wings of a Ladybug".


Love, Tracy






June 1, 2006 11:30 AM

Jacob D. is in desperate need of a MIRACLE. My prayer is for a miracle so BIG that it can only be called a MIRACLE!! They are many prayers for him. His parents have many tough decisions to make right now. Please pray for their guidance and Jacob's medical care team. Pray that AMAZING JACOB is home soon, healed!

Katia is doing well today. She is playing right now with Tatiana.

Her cough sounds BAD but overall I think her cold is improving.

She has a very good attitude right now and an abundance of energy right now. I think she has enough hemoglobin to share with others!

Well, I will be back later today. I wanted to update on Jacob.

Love, Tracy







May 31, 2006 6:25 PM

WBC 6.47
HGB 16.0 (still rising?)
HCT 48.0
PLT 355
ANC 4660
FK506 7.4
IGG 565

We are back:)

Long day but good day. Katia's cold is improving so that is good. She is learning the skill of BLOWING her nose, not too hard but enough to not keep (no other way to put it) sucking it all in... YUCK!

Anyway, she was very hyper today so time dragged by for her. Finally when the end was in site, she was all happy and finding things to do so she wasn't quite so bored.

I met with her Behavior Specialist Dr. and the only real concern of course is socializing. Katia is obviously behind on those skills. That will improve with time and when she is able to blend in more in some type of school, church or play group setting. Other than that, she is DELIGHTFUL!!

I feel lost when I am without Internet and being able to check on other kids so that is what I want to jump in and do quickly. I checked this morning before we left but then it has been ALL DAY without checking. When I came home, my Internet Connection was LOST! That is bad! Finally, we got it up and going with the help of Tech Support. That guy must get a lot of THANK YOUs in his job because I am very grateful when my connection is fixed:) So, now I must do some rounds.

Thanks so much for checking in:)

Lots of love, Tracy











May 30, 2006 5:15 PM

Here I am:)

I have been getting emails, "Is everything okay?" because I hadn't updated but things are okay:)

We have had 2 quiet days at home. Katia still has a bad cold and now a bad and yucky sounding cough. She goes in to clinic tomorrow and to tell you the truth, I am relieved. I am eager to see her counts and let them see her. I have tried to hold off because Katia gets nervous about being admitted but tomorrow is a long day. So, she will be thoroughly checked out.

She has labs early on, Behavior Specialist and then her Pentostatin. I want to make sure they think she is clear enough to get the Pentostatin. I am not really sure in my head as to what they will say.

Okay, there are some new pics finally:)

They aren't brand new because she hasn't really been up to picture taking but the one on top of the page with the towel on her head is just a couple of weeks old. Cute:)

The ones on the album page are BABY PICTURES!!! I love those!! I was going back through albums. I don't really keep albums going now since I went digital but it is always nice looking back over albums. I was going through trying to get some pictures of Katia's eyes early on. When her Eye Tumor first started showing a lot. It is amazing how much it changed from March 2002 to April 2002. Poor Baby...

I have been doing quite a bit of reading and actually, what was wrong with her eye was consider a Chloroma which as I have been reading more on, is a type of tumor associated with Myelogenous Leukemia. I wish I researched more back then. But, we are looking forward to getting to Miami and hopefully finding some answers and solutions. That is our prayers.

Well, I wanted to update some pictures and let you know we are home and Katia is okay:) Thank you for continuing your prayers.

Lots of love, Tracy








May 28, 2006 2:19 PM

Hello:)

Prayers are working! Katia is feeling better. I think it is safe for me to unpack my hospital bag and put things away:)

Actually she just got finished putting the last minute touches on the ToteBags so they will be going out in the mail in the next few days.

The girls are up to some new art projects right now. I will share those later sometime.

Please continue to pray for Jacob (who turned 6 yesterday) in the ICU as well as little Jake R.

The weather here has been warm so Katia hasn't been in her Playhouse for a bit. We need to get a little portable AC unit for out there or she gets PINK and HOT. I am SO GLAD to see her up and about though. She is still pretty junky sounding and definitely has a cold but her throat is getting better. She had some Chicken Noodle Soup today and has been drinking well. She has also had a popsicle and jello so I would say her fluid intake is safe:)

Thank you so much for your prayers and for taking the time to check in.

Lots of love, Tracy







May 27, 2006 11:00 AM

Good morning:)

Katia had a decent night. She seems to have the worst cold which is what appears to be causing her so much irritation.

I went to give her a bath last night and as I was undressing her to get her in the tub, she started throwing up. Mainly just gunk from her cold which is good to clear out. She just sounds pretty "junky" right now and is on the sofa, blanket, brown shirt and a big box of tissues.

Her throat is really what is bothering her most but she did eat and drink a bit this morning. As long as she can take her medicines and drink decently, I feel okay for her being home. If she stops drinking or starts throwing up liquids and meds, I would have to take her in.

No fever:)

I told her, "A lot of people are praying for you to feel better." This was around 2AM. She couldn't sleep and just wanted to watch TV in my room during the night. Soon after that, she fell asleep for a bit until around 5:30AM.

When she got up to get dressed this morning, she said she thinks she needs to go to the hospital but that she was going to "try to stay home" for a bit because she likes being home better than the hospital. I AGREE:) But, just in case, we are packed. I hate having to get things together if she starts spiking a fever because time is precious and the hospital is 45 minutes away.

In my heart, I think she will be just fine in a few days. I definitely go with my insticts on a lot of things. I feel that is God's way of leading me.

I will update later in the day or if anything changes and Katia says thank you for praying for her. She has seen how prayers work miracles.

Love, Tracy



*********

May 26, 2006 6:25 PM

Hello:)

I have been wanting to get on this computer for quite some time today but Katia was on some Barbie program and I didn't want to rush her off. Tatiana and Katia can spend quite a bit of time between the Barbie game and Noggin.com.

Right now, Katia feels miserable. She seems to be coming down with a cold and her throat is so sore she doesn't want to talk or anything. She says it hurts to swallow. Her mouth is all white again inside which is probably a GVHD flare up? We have clinic on Wednesday but I have a feeling she may be going in over the weekend unless she shows GREAT improvement. If she can't eat or drink, she needs to have fluids due to the Pentostatin being so hard on her kidneys.

She is nervous they will want to swab her throat and nose (which is exactly what they will do) so she is trying to sleep because "rest makes things better". Well, so do prayers:)

Anyway, I would hate to see her get any sicker so we are keeping a close eye on her. No fevers though. When these kids are on so many immunosupressing drugs, it is hard for their body to even respond with a fever which is why when they DO get a fever, the doctors react so quickly and run all the necessary labs. I just pray this doesn't turn into a fever. On weekends, we have to go through the ER a lot before getting up to the floor.

Please keep Jake and Jacob in your prayers. Both of them are going through so much right now in the ICUs. Their parents are just facing such roller coasters each day. Also, please keep Jacob and Asher (the preemie twins) in your prayers. Jacob is not doing well at all right now. Also please keep so many that aren't yet listed in your prayers.

Thank you for stopping by and leaving messages in the guestbook. I just saved a part of the guestbook to disc that I hadn't saved yet. I went through the WHOLE guestbook and Journal History yesterday and I am just amazed at how many have loved, prayed for and followed Katia through her journey. WOW!! So touching. Thank you:)

Love, Tracy










May 25, 2006 1:15 PM

NEW PRAYER REQUEST ADDED AROUND 5PM


Oliver was diagnosed with leukemia AML May 24, 2005. He had a bone marrow transplant in September 2005. Then in January 2006, he relapsed. He underwent a second bone marrow transplant on March 14, 2006. Both times, his older brother, Jacob has been his donor. He is just 5 years old. Now(May 25, 2006), Oliver's counts are not looking good so they had a bone marrow aspirate done. Please pray little Oliver has not relapsed. He is only 1 1/2 years old.
**********

We are back from Katia's appointment and she is happily enjoying a big bowl of Macaroni and Cheese:)

I ask you continue to pray for Jacob D. and Jake R. as they are both in desperate need of prayers at this time.

On the way home from Katia's appointment today she was chatting away feeling fine and talking about what she wanted to eat when we reached home. That is our usual conversation on the way home from St. Pete. She suddenly grabbed off her sunglasses and started crying that her eyes were hurting her like they were being poked with pins. Normally it is one eye or the other but this time it was both at the same time. That lasted about 10 minutes, a very long 10 minutes for her I am sure. Then as quickly as it came on, it basically ended. Her eyes were pretty irritated looking and puffy but she said they felt better. It happened again shortly after we reached home so she had some codeine and about 15 minutes later, she felt better. They are still sore looking but she is acting like her normal self again. I know they hurt her all the time, she has said that but her pain tolerance is pretty high. I feel so bad for her. The plan she had was to eat and do some homework but I think teh homework is out right now. I think she will end up napping to "rest her eyes".

Katia's eyes are one of our biggest concerns right now because they do cause her so much pain and they just always look sore. She is always keeping them mostly closed and squinting one or the other. She walks around here with them closed and her hands out in front her. At best we can tell, her vision is not affected though. We are praying so hard for this Miami trip to bring not only answers but some relief to her eyes.

I always tell myself, "Things could be worse." But, when she is in pain, it is just a horrible feeling in us. We hate to see her suffer even if she doesn't complain. I feel bad that she is growing used to the pain.

So, please keep her eyes in your prayers also. We aren't scheduled to go back to clinic now until next Wednesday which will be one of those 3-appointments-in-1 days.

Lots of love,



Tracy











May 24, 2006 4:36 PM

Please keep Jake R. in your prayers at this time as he is not doing well at all. I will keep posted on here.

Katia is having a good day. One more day till school is out for the summer. I know her report card is ready so we are looking forward to getting that in our hands for our little FIRST GRADER:)

I am VERY THANKFUL for Katia's health today. We appreciate each day which is why I ask prayers so much for others. I know prayers are so needed in so many ways.

I have to share this with you. The other day Katia prayed for something, I can't think what right now. She came out this morning and said, "Jesus answered my prayer you know?" I told her, "Jesus loves you." A while ago, she was watching me check on some sites and she said, "You know we should pray for her." We were on Emily L's site. So, we did. I am glad she is learning to have faith in prayers. She does understand prayers don't always get answered in the way we may want though. She used to get mad in the hospital when she would pray to be able to go home and she said she never was getting to go home. BUT, the day we were leaving the Ronald McDonald House, I remembered her prayers and told her, "See, God answered your prayers when it was just the right time. We are going home!!"

So, please keep these families in your prayers.

Love, Tracy









May 23, 2006 5:53 PM

Hello:)

At this time, Katia is having quite a few day. It seems she has the giggles!! They have been ongoing for about the last 2 hours... It is nice to hear though:)

I have a few prayer requests to add above but I probably won't get to it until tomorrow. I have been in the midst of organizing around here, mainly my filing cabinet and some of Katia's labs and such.

We are looking forward to her Miami appointment and hope to get some answers there, helpful answers.

Some very good news to share with you is Estephany is scheduled to return to Tampa on Wednesday to do her followup care here. I will find out more about her current status at that time. I do know she is far from being "out of the woods" as far as her counts go. She hasn't had the best engraftment so far it seems but things to steadily be moving along right now. I will update her page when I find out more information. It has been difficult to keep up closely while they have been away from here. Hopefully we can get some good pictures and update her page quite a bit.

Katia is out of school for the summer but we are planning to have a few classes during the summer to try to catch her up. She is officially a FIRST GRADER but she is behind in some areas. Mainly this is due to her missing so many of her classes due to appointments and hospitalizations. She does seem to have the ability. We were working on some of her words today and she catches on quickly. She also gets VERY FLUSTERED when she can't figure or sound something out. Once she gets to a certain point of frusteration, I have to let her do something else. She basically just shuts down to any more studies. I am proud of her though, VERY proud!!

That is about all for now. I will update tomorrow and try to add on the new prayer requests. Thursday we have an appointment with the Behavior Team.

Thanks so much for all the great guestbook entries, for checking on our friends in the Prayer Request section and for leaving messages for them in their guestbooks. I am sure they are so appreciated:)

Love, Tracy







May 21, 2006 2:00 PM
NEW PICTURES ADDED IN PHOTOS

Hello:)

I just wanted to add some pictures of a recent little "outing" we did with Katia. She is eager to see new things. Very eager. There isn't much she is allowed to do right now as far as going places that are indoors, being out in the sun much, but we did escape out to this little park for a picnic lunch with the girls. It was very nice.

She was feeling well so we took advantage of the time. Katia LOVES family time!!! She so much enjoys when her sister are home and when Mommy and Daddy are both home! She is pretty easy to please in that sense.

Of course, we took the camera along. I think so many of you follow Katia and pray for Katia and have definitely shared her bad days, not so good days and her good days. I like to share her really good days with you too:)

I have added a new prayer request above for a little boy named, Philip. Please read the prayer request. His story is not only amazing and in desperate need of your prayers, but it is also very touching. I am sure you will want to mark his page down as one of your "Favorites" and continue to check on him and pray for his miracle.

In the world of cancer, there are so many days when a miracle is the only hope you have. We have witnessed many many miracles. Those are the days when we can say it has been a blessing know and follow others and to share our own story with you. Katia has had a list of miracles and her life continues to be full of miracles.

My heart has truly been drained and broken 2 times during our journey. Once on the day of her diagnosis and the second time when she relapsed. My heart has NEVER been empty of hope though. No matter how bad things have gotten or what we have been told, we have always known that ultimately God is in control. We also know the reality that this does not always mean Katia will be with us through the years. I think that is where faith comes in. We just always have to have faith for tomorrow and the next day and so on. We have faith that God leads the hands and minds of Katia's doctors and their decisions. We have a peace knowing that God is ultimately in control.

Recently, we have lost a few kids through Caringbridge and locally. I am asked numerous times, how can I continue to have faith? I just do. I am also asked, "Why do children have to die?" I don't know. Why does anyone have to die? When Jerry recently passed away, he left behind a beautiful wife and 3 children that dearly loved him and just want Jerry here with them. There were so many prayers being said for Jerry and his family. I can tell you that prayers give families peace and endurance. Sometimes, many times, it doesn't keep their loved one here with them. I have accepted the fact I will never ever understand why.

I remember one time, up on the hospital floor. We had been there about 4 months straight at the time and were dealing with the fact Katia's lungs needed to be dealt with before she could have transplant. Her lungs were not a good situation and the risk were frightening when we talked to the doctors. Still, I kept a positive attitude, not just on the outside but on the inside. (I consider that an answer to prayers from others). I was in the conference room getting a cup of coffee and talking to another parent. They were new to the floor (newly diagnosed child) and knowing Katia's situation, they asked how I could remain positive. Didn't I know the reality of the situation there on 2 Southwest (the oncology floor). I told them, I do know the reality. I very much know the reality. But, my fear would not help anyone and especially not Katia. I felt that we were doing all we could for Katia. I felt encouraged actually because we had been through so many times that things looked really bad and yet, here we were again facing another life-threatening situation. She had already come this far. That was already a miracle. We had also just learned a match for Katia's bone marrow transplant had just been found, another miracle we weren't sure we would see. I had to have faith her lungs would become another miracle on her list of miracles.

The next time I saw that Mom was in the elevator about 3 weeks later. They were in between chemo treatments and had been home for a bit. We however had remained still in the hospital. I was again coming back from getting coffee (she probably thought I drank coffee 24 hours a day!)

When she found out we hadn't yet left the hospital, she was startled. By this time, we had been through Katia's lung surgery (which had turned out great!) and knew our transplant date. I told her we wouldn't be going home anytime soon but when we did go home, Katia would have her "new blood" by then. I told each day in the hospital was just one day closer to going home.

Maybe she thought the caffeine had finally gotten to my brain but she smiled and told me she thought of Katia often and kept her and I in her daily prayers.

I have never seen her again. I think of her often also.

Katia is coming up on the two year anniversary of returning home after being gone nearly a year that time. We were truly blessed during that year. We took a very sick Katia to the hospital on August 27, 2003. She had relapsed and I just pictured her body being full of leukemia. I knew the reality that I may not return home with her. I drove across that bridge from Tampa to St. Pete dreading the possibilities.

On July 27, 2004 we drove back across that bridge, Katia with a ladybug balloon in hand, a host of people waiting for us at home and the hope for a lifetime with our Katia. Each time I cross the bridge now (both to and from clinic), I smile. I always thank God for allowing us the chance to make those trips to and from clinic no matter how many times a week it has to be. I am willing to do that for the rest of my life. I am grateful for the opportunity.

Many times, a patient I have known that is no longer here with us, will cross my mind. I think of them, their fight for life, their families. I think of all the kids I have followed through Caringbridge. I am thankful for the chance to "get to know them" even if it is just through a website and pictures online. A lot of them are no longer living anymore but they certainly aren't forgotten.

Just like that Mom I met, getting coffee, I have been touched by many lives, many shared thoughts, many questions and I have had countless opportunities to share Katia's story, our hopes and dreams and our faith.

By you reading this, you are part of that. You are part of our strength, our faith, and our sharing. You are part of Katia's journey. I look VERY forward to the day of putting Katia's graduation picture on here or a picture of her at her wedding (I can't imagine ever letting her move away).

But, for now, Katia is doing well, she is happily playing on the backporch with Tatiana. I look at her and I see a MIRACLE.

Love, Tracy











May 19, 2006 1:20 PM

WBC 5.17
RBC 5.20
HGB 15.3
HCT 46.2
ANC 3257
IGG 667
FK506 13.2 (much better)

Hello:)

Sorry about not getting back yesterday. What a LONG DAY! I hadn't planned on doing that again but we will on the next appointments also. We need to combine them due to other appointments that get in the way of each other.

She had her labs done, then we met with the Behavioral Specialist doctor. It was a long wait but Katia drew a nice picture while she waited. She didn't talk much to that doctor and due to being just worn out, she ended up crying through the end of the appointment so we called it quits until next week's appointment.

A few of Katia's counts concerning her red blood cells are high? That has never happened in the past. I am not sure what could be causing this but we will just see if it comes back to normal for her next labs.

Katia received her Pentostatin dose and was happy when the final beep went off saying we could go home. She learns her numbers by watching the IV machines come to an end:)

Also for those of you that were unable to sign onto Jacob D's page due to the Active X problem, it has been fixed.

We had no classes today so Katia has been just relaxing. I promised her she could have a slow day today after a busy day yesterday. She is definitely RELAXING today.

I am very proud of Katia and how she just keeps moving forward and having a good attitude over everything. She does have little breakdowns here and there but that is to be expected. I think I would far surpass her "melt downs" if I were going through everything she is.

Lots of love,

Tracy


*****************

May 18, 2006 7:22 AM

We are off to clinic for the day. It is a combined day of appointments and Pentostatin Treatment.

I will update when we come back this evening but I wanted to update some of the prayer requests.

Lots of love, Tracy









May 17, 2006 2:00 PM

I thought we had clinic today but we didn't:)

That was nice. We will be there all day tomorrow. We have combined appointments. Katia first has clinic for her labs, then her appointment with the Behavioral Specialist. Once that is done, we will go back to clinic and they should have her Pentostatin dose ready and all her labs back. Hopefully things will run smoothly:) I am sure they will.

I have updated on Jacob D. above in the prayer requests as so many of you are emailing about problems getting to his site. I know so many want to keep up with him and pray for his current needs.

As for Katia today, she was up around 9:30, ready to eat. Her appetite is definitely dropping off though. She still eats a good breakfast but then not so much the rest of the day. Macaroni and Cheese is still her favorite but she eats about 1/3 as much as she was. At least she is still eating though:) That is the main thing!

She is down to about 1/2 the dose of steroids. She was at 30mg which is her top dose according to her weight and now she is on 15mg a day.

She has some homework to get done this afternoon so that is our plan for the next couple of hours. She likes her pack of papers done:)

School is coming to a close for Sharayah and Tatiana. Sharayah will be in 12th grade next year and Tatiana in 8th. Where does time go? Katia will be FIRST GRADER:)

I enjoy your messages and share them with Katia. Thank you:)

Love, Tracy










May 16, 2006 11:00 AM

I will be back a bit later today with an update on Katia but I wanted to check on and update a lot of the prayer request and add the link for the twin's website.

Thank you so much for checking in and keeping up with these prayer requests. I know a lot of you are having problem getting onto certain sites due to the ACTIVE X control popping up.

For those of you reading this that have MP3 files on your site, I found that if I changed the MP3 files to .WMA files, the ACTIVE X popup would stop.

Again, check back later on Ms. Katia. She is getting extra beauty sleep right now so I better go get her up. I don't like her waiting this long to take her medicines. She has been extra sleepy lately but it is probably due to weaning back on the steroids some. She is also having quite a bit of pain when she pees. We go to clinic tomorrow and Thursday so we are taking a urine sample with us and will see what her labs tell us.

Love, Tracy








May 15, 2006 2:47 PM

Hello:)

I just updated some pics and added pictures from May to the Yahoo Albums also if you would like to see any of the past pics or more Mother's Day pictures.

We had a nice and QUIET day yesterday. I love those kinds of days. I have been a bit less worried about admits lately as Katia seems to be holding on pretty well. She is red but it seems to be holding steady these last few days.

Today, she is sleeping the day away. She got up for breakfast (waffles) and went back to sleep. That was around 10:00 AM. I am ready for her to wake up for her Macaroni and Cheese anytime now. She is sleeping more lately. I think that is due to her eyes bothering her so much. She says "rest" makes them feel better.

I hope each of you had a nice Mother's Day. I had breakfast in bed. That is the good thing about having 2 older daughters and Katia was a big help from what I understand. She was MANAGEMENT and she was also the TASTE TESTER.

We finished out the night watching the Survivor Finale. The one we wanted to win was Terry so we were in shock to see him go... but he did win a car and that usually is a sure promise they won't win the MILLION DOLLARS. We have watched Survivor since Season 1. I was pregnant with Katia. She was telling us last night how she used to watch it through my belly button:)

I wish I could find a shorter version to explain to you Katia's theory on how she was "brought into this world" because it is both cute and funny how she thinks she was "made" and "born" and as to WHY she ended up with us.

The short version is that she was in Heaven, with other babies waiting to come to earth. God asked who wanted to be our baby and she immediately raised her hand, jumping around and made sure she was picked. God picked her because He knew we wanted a special baby and she wanted a family that would be nice to her. SO, he slid her down this TUBE into my belly. Once she got bigger and things got too small in my belly (hard to imagine I couldn't have been housing a football team seeing as to how big my belly became!), she decided to BURST out! When she got out (this is in her words) she was like, "Oh, finally - I couldn't move in there and I had to put my arms and legs out!" It is cute how she re-enacts this whole story.

She was VERY HAPPY to finally present her card to me which was really cute with lots of coloring and Sharayah helped stitch some puffy, fluffy little pom pom balls on the card. She thanked me for being her Mommy and making her Macaroni and Cheese.

Sharayah and Tatiana made very pretty (and quite creative) cards as well.

I am very lucky to have my family (Myron and the girls) as they never let a day go by without reminding me they love me. I was thinking about that a lot yesterday:)

Lots of love, Tracy

PS Enjoy the Yahoo Photos!


***************

May 13, 2006 2:15 PM
PLEASE SEE UPDATED PRAYER REQUESTS ABOVE.

I want to wish each of you a Happy Mother's Day!!! I know some Moms come in the form of Grandmas, Single Fathers, Foster Parents, Aunts and just so many others. I wish each and every one of you a Happy Mother's Day:)

This morning, the girls were "working on a surprise" so I am sure they have done something nice. One of my request each year is handmade cards. I love them so much more than a store bought card. I hope they will each keep that up throughout their life. I love seeing what they come up with.

Katia is ready to give me hers now! She finds it hard to keep a surprise. She came in and said, "My card is so pretty! You are my best Mommy and Friend!" How sweet is that?

Mother's Day in itself is a reward to me. When I was young, quite young, I had said I wanted to have kids and be home for them. As you know, I was raised by my dad. Since he was a single parent, if I got sick at school, someone had to be called to come get me or I had to spend the day at someone else's house. Although I was always very well taken care of if I was sick (I usually ended up with my Great Aunt and Uncle), I just wanted to "be there" for my kids. It hasn't been easy, especially financially but I am happy that I can be there. I am blessed that I married someone who backs me up on that dream. I don't know how we would have handled everything with Katia had I been a full time career person?

People ask if I get bored? I wish I knew what bored was sometimes. I am NEVER bored. I stay VERY busy and at the end of the day, I am grateful.

I hope to spend tomorrow quietly, at home with all my girls:)

Katia is doing well today. She is happy and looking forward to tomorrow. She likes making others happy so she is buzzing around here about to go out of skin for Mother's Day to get here:)

Love, Tracy

PS Please keep Carol in your prayers tomorrow as she celebrates this Mother's Day with her 3 beautiful children without Jerry. We saw them last night and I know it will be a hard day for her.

Also, pray for Mom's who have lost their children to disease, accidents, anything. I can't imagine the loss of a child and I pray I never have to. But, my prayers are with them more tomorrow than usual.









May 11, 2006 1:30 PM

First I ask you to see the prayer request above for Hanna. This is a new request. Also a new request for Nikki H. has been added above.

Katia is coloring right now.

I spoke to her doctor last night to let her know about Katia's added redness, rashes and now her mouth is again worsening. Her lips are breaking out again also. Her hands show signs of GVHD as well and her fingers are again messing up with scaliness and stiffness. All of this is not a good sign. Although Katia does respond well to the steroids, we have had to continue the wean as steroids cause so many other setbacks with Katia including serious bone weakness.

Katia woke up today saying her skin was burning all over so we gave her a quick bath and put lotion all over her. She has been itching all over again so we put some Caladryl Clear on her which she says has helped a "wee bit".

You know we always try to remain very optomistic and upbeat and keep Katia with the same outlook. She is a happy little baby in so many ways. She is our baby. Although she is 6, in so many ways she is still just a baby who relies on us and her doctors to make her better. In other ways, she is like a 25 year old that understands WAY TOO MUCH which causes her to worry and get flustered when things start progressing again.

She doesn't talk to much about her illness but she does get her point across by drawing pictures, her actions and just her overall mood sometimes. Her escape is to sleep or play Play Station 2. That is when I am so thankful for video games being able to take her mind off things for a bit. When her eyes bother her, she can't do anything but try to go to sleep or walk around her with her eyes closed or her hands over her eyes.

So many times I say I know things could be worse but when it is your little girl, you just want things to be better, to improve and for her to have a more quality life. We always worry of a setback landing her back in the hospital and her not having more opportunities to see things and do things that she wants to do. At the same time we have to protect her from getting sick due to exposure to other germs, diseases that most of us have immunizations to and environmental pollution that can be so hard on her body and lungs.

As parents, we feel like our hands are tied alot.

When we face normal day to day problems such as financial disasters basically, it upsets even more I think because it seems like the smaller of our problems and yet it takes so much time and energy out of us trying to make things be able to just function.

It is true that money seems to make the world go round but at the same time, it shouldn't be that way. I think the quality of peoples' lives go down more and more each year.

Every family seems to need two incomes and then some. More and more time is spent with people having to spend more job time and less family time. It is sad to think about. The family is the root of our existence but yet it seems to become something more put on the back burner in today's economic times.

I know these things affect 99 percent of families.

Through Katia's illness, I have learned a lot about faith in God. I have learned a lot about peoples' genuine love and care for others. As much as all of this would really be able to beat me down both emotionally and physically, it has also taught me there is a lot of good in the world and a lot of people facing similar situations.

I have definitely learned a lot about patience especially in public places like WALMART because although people seem to walk around in there acting like they left their manners at the front door, I tell myself, "They are probably having a bad day and are just flustered." When I see a screaming child that just wants to get his hands on a toy or candy that the parents are saying no to, I think of it that the parents are basically trying to look out for their child's best interest and the child really doesn't know how best to show their emotions. When I see a child running around and knocking things over or running smack into me, (okay that does kind of get to me) I try to think at least they are healthy enough to be in the store running around and basically acting their age. I have seen little kids with shirts that say, "I AM acting my age!" That always makes me laugh.

So, if you are obviously reading between the lines, you can see I am flustered but that I haven't given up, not close to it. I believe there is an answer out there for Katia's eye issues, ongoing GVHD issues, etc. and that some day, she will be one of those noisy little kids causing a seen in some store. That is my HOPE:)

Love, Tracy

PS I would like to add a silent prayer request for here also that was sent to me. Thank you:)





*******

May 10, 2006 12:37 PM

Angel Emma B. passed away yesterday afternoon. Please keep this family in your prayers at this time. Emma had fought Leukemia AML since February 2003. She had received a Bone Marrow Transplant in December 2003 with a perfect match. She had many ups and downs following transplant. In August she was diagnosed with Chronic Graft vs. Host Disease. Emma fought a brave battle surrounded by lots of love and ongoing prayers.

Love, Tracy







May 9, 2006 6:00 PM

Please see the prayer request above. There are some desperate prayers needed for both Tyler G., Emily L. and Emma B.

Katia is doing well. She is asleep right now. She has been VERY itchy today and her arms are getting more red. She isn't due an appointment this week (which is GREAT!) but if the rash gets worse, she will need to be seen. We did just go down on the steroids so hopefully this isn't allowing the GVHD to flare up again. Please keep this in your prayers.

Today, Katia and I were brainstorming some ideas of craft ideas and something we can do to help out with some expenses here.

She had a few ideas and I had a few ideas. We both agreed on the Totebag for now since it is summer and people tend to go places more. A totebag is a good "throw all" for people. But, she said she wants to do it differently.

You can learn more about "Katia's Totebags" over on the www.ladybugkatia.com site.

As Katia's steroids are being weaned, she is still head over heels about her Macaroni and Cheese. She starts each day with waffles and then the Macaroni and Cheese starts. She is keeping her weight about the same and her sugar levels have been really good. Steroids also cause an increase in blood pressure but hers in staying where it needs to be. She does take blood pressure medicine each morning but I am thankful a lot of the things that could have gotten out of the normal ranges haven't. This was a HUGE concern to us putting her back on steroids but it has proven to be an answer to prayers.

Lots of love,

Tracy











May 8, 2006 6:30 PM

Hello:)

Well, we have an eye appointment set in Miami for one month from today.

I am looking forward to some new ensight on Katia's eyes. I really pray for some answers and to have this ongoing eye pain behind her.

Of course, she is not eagerly awaiting this eye appointment. She has a HUGE fear and dislike for eyedrops of any kind.

I have to share something kind of cute with you but it is hard to put into words and really get the full humor out of it:)

After our last clinic appointment when we told Katia about going to Miami, this is what she told Myron when we reached home.


When we came home from clinic, Katia told Myron, "I have to go to Mommy's Ami". I told her, "Miami." Then Myron said, "We are both going with you to Miami". She said, "I want to go to Mommy's Ami." By then we caught on to where this was coming from so Myron asked her, "If you owned AMI, where would you be going (thinking she would say MIami)." She said, "I just want to go to YOURami but I don't want eye drops."

There was no hope in clarifying anything that night but then on Friday, Myron's parents were going to Miami. Myron's dad was saying goodbye to Katia and she gave him a picture she colored for Giselle (their little 5 year old daughter). He said, "We are going to Miami first and then we go home to the island on Sunday..." Katia left the room and came to the kitchen all flustered. She asked me, "Who is AMI for?" Of course, I laughed and she got mad. There is no clarifying this MIami place to her. She doesn't get it for now. Maybe she will catch on later but for now, it is just a city that Mommy owns:) I wish I knew that!


It was much cuter in person. I remember when Tatiana was small, she would always call "oatmeal", "opiemeal". The day she finally called it "oatmeal", I knew she was growing up...

Remember that show, "Kids say the Darndest Things?" That used to be so cute! The great thing about having babies, toddlers and little kids around the house is the constant humor. Katia definitely knows how to make me laugh even when she isn't trying.

Although she has been through so much and continues to go through so much, she has the best laugh in the world. It is one of those deep belly laughs and her whole face just lights up. She is pretty easily amused. She adores her family and loves to give us hugs and kisses. It reminds me everyday what a blessing she is and how lucky we are to still have her here with us.

God is good:)

Love, Tracy









May 6, 2006 12:18 PM

Hello:)

Sorry for the lack of updates. Things have been pretty hectic in the past few days.

Katia's clinic went well on Thursday and she received her dose of Pentostatin. Somehow, I don't think it is continuing to work though but we will see.

She continues to be red, getting rashes on her arms, some on her thighs and her eyes are very irrated.

We did change from Tylenol with Codeine for pain to just plain Codeine. Hopefully that will help her more without giving her the Tylenol that isn't necessary. She has taken the Codeine for her eyes and for her "bottom end" pain. Both times, it works well enough.

Katia is quite happy though. Even when she doesn't feel at all good, she finds something to be happy about. I am so thankful for her ability to focus on other things.

Her eye appointment in Miami is in the "process" of being set up. It should be in the next two weeks though. It will be a quick trip there and back so we can keep on schedule with her treatments here as well as her upcoming Behavior Specialist appointments starting on the 18th. I have a feeling summer is going to be busy.

Katia is doing well in school. She had Ms. Michelle here on Friday. Although Katia is not at a first grade level yet, she is going to be promoted. She will continue having sessions with Ms. Michelle through the summer and hopefully, with time, she will catch up. We are pleased with how well she is doing-all of us. Katia has missed a LOT of school days due to being sick and in the hospital so all in all, she is doing very well with the time she has had.

I have been asked a few times about the KSF hats and t-shirts. We are working on some new designs. As soon as we have something, I will post it. I used to be able to say I was a Stay-At-Home-Mom but now it seems like I am a Mom that would like to be home more:) School will be out on the 25th of May here and hopefully things will slow down a bit over the summer. Of course, we never really know what lies ahead with Katia's treatments and what her schedule will so much be. I am a bit nervous/anxious about the Miami eye exam. I REALLY hope they can find why her eyes hurt so much but at the same time, I hope it isn't bad news. I also hope it isn't that they can't find out why. We really do want answers because seeing Katia in so much pain with her eyes, continuously is very hard. We want her to feel better.

Throughout all of Katia's treatments, hospitalizations, transplant, etc., we have all tried to keep a very positive and optimistic outlook on things. God has given us so much strength and ongoing endurance to stay focused and positive. I look back on the 9 month long hospital stay and although it did seem like a very very long time then, it is just amazing how, during that time, it really didn't drag me down. It was hard but I just stayed focused on the next day. I think we finally stopped thinking we would be released around 3 months into it and just focused on getting Katia to transplant. Now we are over 2 years out of transplant. Katia is able to be home, she is playing more and learning and just a joy to be around. I think it is impossible not to smile when we are around her. I feel downright foolish sometimes when I get down about something and then I think all she has been through and how much she just wants the simple things in life. I mean she acts like she won a MILLION DOLLARS when she gets a bowl of Macaroni and Cheese (yes, it is still her staple food!)

So, my prayer, as summer approaches is that we find a lasting solution to Katia's GVHD issues, answers for her eye pain and a solution and that she will be able to go all summer without any admits. That would make me very happy, all of us.

I would also like you to pray for UNSPOKEN PRAYER REQUESTS. They do get answered.

Thanks for checking in:)

Love, Tracy

PS I wanted to add two things. Due to a shortage of blood supply nationwide, I would like to ask for anyone possible to go to your local blood bank to donate, possibly setting up a monthly slot on your calendar. So many people are in need daily due to car accidents, childbirth, cancer treatments, health treatments, surgeries and much much more. Every blood type is needed.


Also, I was going through some links and just watched this one of Katia and Jerry. They had such similar stories and they bonded so closely. Jerry will be so missed but I know he is watching over Katia and wants so much to see her grow and be strong and healthy. We will always love Jerry and remain tightly knit with his family.
February 2005-Jerry and Katia


*************

May 4, 2006 9:42 AM

Today is transplant day for Carlos Murillo. It should happen around noon time. Please keep Carlos in your prayers as he gets another chance at life. Also a prayer of thanks for the person who has donated their marrow to make this possible for Carlos.

We are off to clinic today for Pentostatin. Right now, Katia is "loading up" with Waffles:)

Love, Tracy









May 3, 2006 5:55 PM

WBC 5.02
HGB 13.5
PLT 369
ANC 3514
FK506 5.7


Katia is doing okay. She is very red though... Not sure why but tomorrow is her Pentostatin dose. Her FK506 level is low also so that may need to be adjusted. It should be up around 10 at least.

Other than that, she has a HUGE appetite! Grammie is cooking dinner tonight so it smells REALLY good right now. Macaroni and Cheese is not on the menu.

I just wanted to update quickly as the day is getting by me. Myron's parents leave this coming Friday morning.

Love, Tracy








May 2, 2006 1:00 PM

Good day:)

I will be working on the above prayer requests to have them updated so you can check back later.

For now, I have one to post that does not yet have a website. It is for a little boy named, Cole. He is from Texas and was just diagnosed with Stage 3 Wilms Tumor of the Kidney. This just happened this past Friday so as you can imagine, they are a lot of prayers needed for Baby Cole and his family. Thank you.

Also, please pray for Carlos as he prepares for his Bone Marrow Transplant tomorrow at ACH here in St. Pete.

Katia is doing okay right now. Her skin is much more red on her face (especially her cheeks) and she still has a few more rashy areas on her arms. I talked to her doctor yesterday and she feels it is due to the prednisone. Plus Katia keeps having "flash fevers". She feels fine one minute and the next she is fanning and her skin just feels really hot. She will have a fever just momentarily (maybe around 101.0) and then it goes away as quick as it came. This too could be due to the steroids. Most of the time, steroids will not allow your body to get a fever. Other times it can give you a fever. Anyway, we go to clinic tomorrow and we are quite happy we have been able to take the one week off in between. Katia has been a bit "spoiled" to be able to skip clinic this last week and now she is arguing about going tomorrow... Who blames her?

I had something funny sent to me and I had to share because there is a good moral to the story and it is funny:)
The Donkey.

I know I don't normally add these little links on here but it is kind of how life goes. When things seem to be working against you, you just have to try to figure another way around it.

Well, Katia is calling for Macaroni and Cheese. I have a picture I want to add on here of her Mac and Cheese love. Let me work on that and I will get it on here:)



Katia's Drawing May 1, 2006



Katia doing school work May 2, 2006



Love, Tracy










April 30, 2006 3:20 PM

Katia was having a good day today:)

It was GREAT to see her in a good mood, feeling good and happy SO of course, I took some pictures!!

She goes to clinic Wednesday and Thursday. She has gotten quite a bit more puffy (but she is beautiful!) and red. She has a few rashes on her arms again but I am not sure if it is GVHD flaring up since we lowered the steroid dose a bit or if it caused from the Prednisone. Her blood work should show what the cause is.

Thank you so much for your prayers. I can truly say that Katia's happiness today and her feeling well is due to prayers. She has only asked for pain medicine once compared to a typical day of 3 to 5 times.

Lots of love, Tracy

PS
A few people have asked about the KSF (Katia Solomon Foundation) hat that Katia is wearing in the picture on the page. We are trying to figure out a way to get some bulk made. To do them one at a time is expensive because they are embroided (sp). I will post if we figure away to sell them at a reasonable cost. I think that hat turned out great!


*************

May 4, 2006 9:42 AM

Today is transplant day for Carlos Murillo. It should happen around noon time. Please keep Carlos in your prayers as he gets another chance at life. Also a prayer of thanks for the person who has donated their marrow to make this possible for Carlos.

We are off to clinic today for Pentostatin. Right now, Katia is "loading up" with Waffles:)

Love, Tracy









May 3, 2006 5:55 PM

WBC 5.02
HGB 13.5
PLT 369
ANC 3514
FK506 5.7


Katia is doing okay. She is very red though... Not sure why but tomorrow is her Pentostatin dose. Her FK506 level is low also so that may need to be adjusted. It should be up around 10 at least.

Other than that, she has a HUGE appetite! Grammie is cooking dinner tonight so it smells REALLY good right now. Macaroni and Cheese is not on the menu.

I just wanted to update quickly as the day is getting by me. Myron's parents leave this coming Friday morning.

Love, Tracy








May 2, 2006 1:00 PM

Good day:)

I will be working on the above prayer requests to have them updated so you can check back later.

For now, I have one to post that does not yet have a website. It is for a little boy named, Cole. He is from Texas and was just diagnosed with Stage 3 Wilms Tumor of the Kidney. This just happened this past Friday so as you can imagine, they are a lot of prayers needed for Baby Cole and his family. Thank you.

Also, please pray for Carlos as he prepares for his Bone Marrow Transplant tomorrow at ACH here in St. Pete.

Katia is doing okay right now. Her skin is much more red on her face (especially her cheeks) and she still has a few more rashy areas on her arms. I talked to her doctor yesterday and she feels it is due to the prednisone. Plus Katia keeps having "flash fevers". She feels fine one minute and the next she is fanning and her skin just feels really hot. She will have a fever just momentarily (maybe around 101.0) and then it goes away as quick as it came. This too could be due to the steroids. Most of the time, steroids will not allow your body to get a fever. Other times it can give you a fever. Anyway, we go to clinic tomorrow and we are quite happy we have been able to take the one week off in between. Katia has been a bit "spoiled" to be able to skip clinic this last week and now she is arguing about going tomorrow... Who blames her?

I had something funny sent to me and I had to share because there is a good moral to the story and it is funny:)
The Donkey.

I know I don't normally add these little links on here but it is kind of how life goes. When things seem to be working against you, you just have to try to figure another way around it.

Well, Katia is calling for Macaroni and Cheese. I have a picture I want to add on here of her Mac and Cheese love. Let me work on that and I will get it on here:)



Katia's Drawing May 1, 2006



Katia doing school work May 2, 2006



Love, Tracy










April 30, 2006 3:20 PM

Katia was having a good day today:)

It was GREAT to see her in a good mood, feeling good and happy SO of course, I took some pictures!!

She goes to clinic Wednesday and Thursday. She has gotten quite a bit more puffy (but she is beautiful!) and red. She has a few rashes on her arms again but I am not sure if it is GVHD flaring up since we lowered the steroid dose a bit or if it caused from the Prednisone. Her blood work should show what the cause is.

Thank you so much for your prayers. I can truly say that Katia's happiness today and her feeling well is due to prayers. She has only asked for pain medicine once compared to a typical day of 3 to 5 times.

Lots of love, Tracy

PS
A few people have asked about the KSF (Katia Solomon Foundation) hat that Katia is wearing in the picture on the page. We are trying to figure out a way to get some bulk made. To do them one at a time is expensive because they are embroided (sp). I will post if we figure away to sell them at a reasonable cost. I think that hat turned out great!


***********

April 29, 2006 1:30 PM

Angel Taylor W. Taylor passed away this morning, around 7AM in her mother's arms. Please pray for this family during this time.

Love, Tracy









April 28, 2006 11:20 AM

I have to share something with you:)

Katia and I were reading the guestbook messages and she said, "They are so sweet!" I said, "Who?" She said, "Those people inside your computer..." I just had to share that with you. It is funny how she hasn't put it together that just like I sit down at the computer and check on her, she doesn't picture other people doing that. She thinks YOU are INSIDE this computer:)

She really does like to hear from each of you. I told her it is "computer mail". We all know how she likes mail.

Katia is about the same, no better and no worse. Her eyes hurt a bit more than usual but the pain itself hasn't seemed to increase. They are always red and squinty and just painful looking but she manages and doesn't really complain to much. She just ask me for her pain medicine.

Do you realize she made it all week with NO CLINIC VISIT! That is a first for her. Next week is the Wednesday for labs and Thursday for the Pentostatin. She never did get a fever after this last Pentostatin treatment. I am curious now as to what is causing the fevers if it isn't the Pentostatin. Her WBC was elevated during her last visit and I really figured something was going on so we will see what her next labs look like.

I have been sick with a sore throat. It looks like I have to go in because now it seems to be getting infected and I don't want anything that could mess up Katia.

Myron's parents have been doing well. Of course, the like visiting and have gotten quite a bit of time with Myron, myself and the girls. Katia has been happy to have them here. They adopted a little girl that is a bit younger than Katia so they are used to a lot of what she does (minus the steroid outburst and the 24 hour eating).

Well, I have some work to get out of the way while Katia is occupied with a bowl of YOU GUESSED, Macaroni and Cheese:)

Love, Tracy








April 26, 2006 6:00 PM

Hello:)

Today was "Catching Up Day" for Katia. She had quite a bit of homework to get done but it is ALL DONE:)

We are going down to having her classes once a week instead of 2 times per week. That way, she doesn't have such a busy schedule between clinic and school. She gets worn out and then she is cranky or she gets herself physically worn down.

Her eyes are still her biggest issue. All while she was doing her homework, one hand was holding her left eye closed. The right eye pain would make more sense due to the tumor she had and the radiation directly to that eye BUT the left eye is bad too with pain. My concern is this is side effects from chemos, radiations or other treatments. Hopefully it can be taken care of because it really pains her.

I have to share with you something Katia got in the mail today. She gets a lot of nice cards, presents, dress up costumes, video games and ladybug items. She LOVES mail!!! (She never gets bills). Today, UPS pulled up and delivered a CASE OF MACARONI AND CHEESE!!! She was just so tickled and happy about that:)

I do have to say Katia's share of the grocery bill has gone up 3 to 4 times lately. While I was typing she just came begging for Macaroni and Cheese, "Can I please please please have just a little bit more?" Mind you SHE isn't hungry. At least not her belly really. It is her mind and that little Prednisone Monster inside. If I say no, I tell her I am not telling her no, I am telling the Prednisone Monster no. She drew a really ugly picture of Prednisone Monsters. One was HUNGRY, one was ANGRY, one was SAD and the last was LAZY! It was cute. We gave it to her doctors:)

So, that is about it for now.

Love, (The never-bored-Solomon Household)

Tracy

PS I am not sure if I posted this in the journal entry but this is the latest of Myron's song projects. It is "Wonderful Tonight". Originally Eric Clapton did this song but Myron added a Reggae Twist to it:) Enjoy.







April 25, 2006 12:06 PM

NEW PICTURES UP FINALLY:)

Love, Tracy




April 24, 2006 9:20 AM

Hello:)

Sorry for the lack of updates. Things have been quite busy or hectic should I say. Busy means you are going going going. Hectic is like a treadmill that just won't stop. That is what it feels like a lot now. Please keep this in your prayers as there has just been a lot of added pressures lately in the areas of Katia's care, and regular family day to day issues. I have faith for things to improve and that prayers will be answered.

I will say, Katia's moods have improved somewhat with the lowering of the steroid dose a pinch. That pinch seems to have made a difference in a better way. There is still a LOT of screaming and outburst so please pray for her to feel happy more.

She is quite puffy and her belly is very hard and large. She is on a Macaroni and Cheese hunt all day long. I mean ALL DAY...

Myron's parents arrived last night so that should keep Katia happy and occupied.

We also got to meet some of our friends, Karen and Mark, this past Saturday. She and her husband have kept up with Katia for more than THREE years via the Website! It was great seeing them and Katia showed them around, showed them her house and just had a lot of fun.

Well, Katia is kind of off to a rough start this morning so my mind is in a few places at once.

Also, Katia's "Ladybug and the Dragon" books are back up for sale on the www.ladybugkatia.com site. She has them signed and ready to go:) She likes being able to stick them in the envelopes and send them out.

I will try my hardest to update some pictures:)




Love, Tracy









April 21, 2006 4:30 PM

Hello.

I figure I better jump on here and update while Katia is being entertained:)

Katia had a fairly good morning, AT HOME. I stress at home, because normally after treatment, she would be admitted by now.

No fevers though:)

She is feeling quite crappy to say the least. She is EATING VERY WELL, drinking well but feeling yucky. She did do school this morning with Ms. Michelle. At first, she didn't want to so Ms. Michelle and I agreed to keep it short BUT Katia did okay and basically finished some work and did a little testing.

About 2 hours later, she was getting "the chills" and I thought, "Here comes the fever." but no fever as of yet.

She is laying down and playing a video game with Sharayah right now, eating Macaroni and Cheese. Anybody here related to the Kraft Family?

The plan is for her to be seen in Miami for her eyes. There is a doctor they are dealing with there so the appointment is being lined up. Whatever is going on with her eyes is not getting better, but worse. I don't think it is treatment related and I am not sure it is totally GVHD related. So, maybe this new doctor can give some answers and get Katia bright eyed again.

Please pray for her to have a peaceful weekend. There has been so much going on with her and just other things lately so I pray for "answers" to some ongoing issues.

Thank you so very much for checking in.

Hopefully, the ACTIVE X issue will go away and I can get the songs back on the site. But, for now, the links are playable above and on the www.ladybugkatia.com site so you can listen as you like. It may be better to leave it that way, who knows?

I am working on some ideas for auction in the very near future. I will post when I know more. As far as the Ladybug Club bracelets, still working on some ideas for that also.

Love, Tracy










April 20, 2006 5:45 PM

WBC 9.07
HGB 11.5
PLT 477
ANC 7256

We are back from clinic. Today was Pentostatin Day. The counts above are from yesterday but I just got them today due to "technical errors".

As you can see, Katia's counts are elevated and today she got Pentostatin. Normally that would probably land her in the hospital for an admit tomorrow but we are going to see how she does. She is now on high dose steroids and was pre-medicated a bit different today so hopefully, no fevers.

We do have plans to follow if she does start getting a fever so we don't have to rush her right in. Each time she goes in, nothing grows in her cultures so it is a mystery but seems to have SOMETHING to with Pentostatin?

Katia has been up and down with her moods. We did drop the dose of steroids from 30mg to 20mg a day so that should help her moods some or at least the VOLUME of her moods should I say.

Our prayer this weekend is for a quieter and less stress weekend. There has been so much going on with Katia and with other things that I really really pray for a more relaxed weekend, it doesn't have to be bliss, just more relaxed than the last few weeks. I so much appreciate your prayers and kind emails. It really does help.

I have moved the Katia Song from playing when you open the page. There is a link that you can click on above (along with other songs that Myron has done) at the top of the page. An Active X message keeps popping up and I am not sure what is causing it but it is happening on a few pages and on Katia's as well as www.ladybugkatia.com so I just want to see what I can do about it.

Any suggestions? Email me to the link on the bottom of this site.

That is about it for now. I have a VERY hungry 6 year old on steroids so I better get dinner going. She just got home and has had two snacks and is asking about dinner:) She is going to easily eat us out of house and home.

Love, Tracy



****************

April 18, 2006 4:10 PM

I am really looking forward to being able to post a really positive update in the near future but for now, I can't do that.

Katia continues to have many issues and pain with her eyes. We are going to look into seeing some other doctors I guess and get more doctors involved. The more, the better in this case. She just came and asked to talk to me so we sat down on my bedroom floor and she asked me when would she feel better? She hates the thought of seeing a new eye doctor but I told her we may just have to do that. He/She can look at her past records and tests and results from eye exams and maybe she won't have to go through so much but we need her to get better. I get worried that there could be something going on in there that is damaging her eyes in the long run of things.

She is pretty puffy from the steroids already which means her belly is puffy. The heavier she gets, the more her bottom hurts when she walks around. I just gave her a warm bath (one of the benefits of no longer having a broviac) hoping that would make her feel better but she basically just cries through the whole bath wanting out.

She is currently eating so she is content and quiet. I wanted to take a chance to update. Her staple food is still macaroni and cheese but right now she is eating a rice and chicken toddler meal. She likes those and they are small bites and they do taste pretty good. She has had so much macaroni and cheese lately that her lips are turning orange. She did have spaghetti last night. I was concerned about all the pasta and her sugar level but her sugar levels seem to be agreeing with her diet right now. Lucky for her.

She has 3 upcoming appointments with the Behavior Specialist in mid-May. It sounds interesting so we will see what we can learn from them as far as dealing with her outburst (currently having one now) and mood swings. I know 6 year olds have moods and tantrums, we have been through those with Sharayah and Tatiana but Katia is far beyond those and when they affect her taking her meds, eating or her overall health, different measures have to be taken.

I know this page is 90 percent about Katia, or more. At the same time we face her health and ongoing situations, we have Sharayah and Tatiana and their going ons. Sharayah and Tatiana have always been a HUGE part of Katia's care and happiness. I don't know how we would manage without them. They both bring their own types of help to many situations that have come about over the past 4 years. As teenage girls, they also face their own situations with school, health, and just everything they go through. We are a very close family. We never want to put their problems, worries and needs on the back burner and I think that with everything, things have been managed very well. Presently though, I am asking for your prayers with some family matters. Thank you.

I will update more after clinic tomorrow. Tomorrow she just has labs to do and then they leave her port available for Thursday when she will get the next dose of Pentostatin.

Good news? There is some:) Her poops are cleared of C-Diff so she doesn't have to take the Flagyl anymore. That is very good news to her!!

Love, Tracy








April 17, 2006 4:30 PM

Hopefully each of you had a very nice Easter.

I wanted to take a chance to catch you up on the plans for Katia's treatments. The plan is to continue with the Pentostatin. She still qualifies because you are allowed one "failure" and an increase in steroids.

Since this is allowed, I tend to agree. I would like to make sure we give it the full chance because if we pass it up and the next thing doesn't work, I think we would regret not giving the Pentostatin a full chance. There aren't alot of options so we have to keep our "bridges" open.

Katia is already getting puffy from the steroids. Although her moods don't seem so out of control. She is still very easy to get upset, hates the word, "No" and totally clingy but she is really trying. Her eyes are feeling very bad these days so she keeps them closed a LOT of the time. We have started her back on Restasis Eye Drops and an eye ointment for moisture. Whatever the problem is causing her the eye pain is a puzzle to all of us.

Same thing with her bottom pain. Sometimes it is so bad, she can't get up and walk or really move around and other times, it is there but she is able to get around and do things.

She had fun finding Easter eggs and seeing what was inside of each of them. We didn't make them too difficult to find because we wanted her to really enjoy looking and finding and not get frustrated over the whole thing. She did have fun:)

I will work on pictures but unless it is a picture with her hand blocking her eyes, there isn't much hope of a picture these days. Please pray Katia's eyes improve.

She is due to go to clinic both Wednesday and Thursday.

I have a silent prayer request to bring to you so please keep this in your prayers.

Love, Tracy










April 15, 2006 9:30 AM

Well, today has many mixed emotions. Four years ago, Katia was diagnosed with leukemia. She had already been seen by so many doctors and had just recently had surgery to prepare to remove a tumor in her right eye. It appeared we had finally found answers for her eye problems and were headed in the right direction.

Sadly, things went from bad to worse and a couple of doctors walked in our room with very grim faces. I was there with Katia and one of my dear friends, Diana. They asked me if I wanted to sit down and I didn't need to sit, I just needed the news. I had no idea what word was going to be introduced into our world.

It had just been found out a few days earlier that Katia had meningitis and it was very serious. I couldn't see how things could get worse. Then I remember them telling me that in the spinal fluid that was drawn for the testing for meningitis, LEUKEMIA had been found. At the same time, Katia's labs had a huge WBC count which confirmed the diagnosed. An ambulance was outside ready to take her to All Children's Hospital in St. Pete.

Myron had been gone that morning with Sharayah to an appointment she had set prior to Katia being hospitalized. I thought, "How do I call and tell Myron this over the phone?" I don't remember the details but I remember, I held my composure and called Myron and in my mind I just thought, "Okay, this is curable these days. We can beat this." I didn't know much about leukemia but I knew there were bad kinds and worse kinds. They didn't know what kind she had but we would find out at All Children's Hospital after more testing.

Myron arrived right back at the hospital. Sharayah and Tatiana were sent to my sisters and Myron followed Katia and I in the ambulance.

I get so emotional just typing this right now. I remember telling Katia over and over, she would be okay and we could go back home soon.

The hardest part of the day was arriving on the oncology floor at All Children's Hospital. I looked around and saw all these kids, bald and hooked up to IV poles. Some laying in their beds very sick looking, others walking around with their poles looking like they had been plugged in to IVs for years. I saw parents with these looks on their faces like they felt real pity and sorrow for us.

Things moved very fast. Nurses and doctors were in our room immediately putting an IV line into Katia, taking labs, saying all these things that sounded foreign to me. All I wanted to know is what type she had, the bad or the worse. And, when would she be better?

I had been keeping notes of everything Katia had been going through since January 2002 when her eye started giving her problems. I wrote down symptoms, doctor visits, my thoughts, everything. I gave them my notebook so they could know Katia's last few months of history.

I didn't cry that day, not much. I was too focused on the next step.

Myron and I just hugged and told each other she could beat this.

The next day we were told she had the worse kind of leukemia and the prognosis was not good but that they had all these chemos they were going to give her. She had surgery the next morning to put in her broviac so they wouldn't have to keep poking her over and over for labs.

My sister called all our family and friends and told them more of what was going on and for those first few days, our room was filled with family and friends and just everyone coming to the hospital to offer us comfort. I remember thinking about the movie, "What a Wonderful Life" and thinking, "We have truly great friends and family."

We had a book for people to sign and leave nice messages for Katia in and that book filled up very quickly.

I never felt alone. I never felt I wasn't getting answers. I never felt totally hopeless. I do remember my amount of faith in God boundlessly added up. I felt God right there with me. I wrote a poem to Katia which was actually a prayer to God the day she was diagnosed.


Dear Lord,
Give me the strength to give
strength and enduring comfort as needed.
Allow me to find moments of peace
when life seems at its worse.
Show my Your will and allow me
the knowledge to follow.
Teach me to have faith when I
can't understand the reasoning.
Help me to except a hand but
also lend a hand as you would.
Fill my soul with love, compassion,
faith, endurance and all I need.
Lord, please take care of my baby and allow her to feel your healing mercies.
This is my prayer.





On the 19th I wrote:
Katia,
You're asleep right now listening to daddy's CD. I look at you and you're so peaceful. I disturb you to change your diaper but you look at me like you understand I need to this and know I don't want to upset you. You're such a loving little baby and you've brought more to me than I could ever give to you but I want to have a lot of time to give you lots of love. You deserve only the best! I want to hear you talk more, see you grow, ride a bike, learn to read, and so many other things. I pray God will heal you so you lead the happy healthy life you deserve but also so I can spend a lot more time with you.
Love, Mommy




On the 18th Myron wrote:
~Katia don't you know
Daddy loves you so
You're the sweetest baby in the whole wide world.
You bring such love and joy to me
Katia you're my baby!
Daddy's Girl!! I love you.
-Daddy-


Myron's words were from a little lullaby he would sing to her all the time. He thought of the words shortly after she was born. Later, it would become the ending to the "Katia's Song" which is playing on the page right now if your volume is turned up.

So much love for our little baby. She is the center of our world.

At present time, she continues her fight but she is leukemia free and here with us 4 years later. That is a miracle because she wasn't given too high of a chance to survive. But she has. She has been through so much chemo both the first time and after relapse. She has been through radiation rounds to her eye, brain, back and such. She has been through lung surgery, transplant had a nice long 9 month stay at the hospital without release. She has had so many blood and platelet transfusions that we can't even count.

BUT, she has touched many lives in her short time here on earth. She has taught us so much about patience and love and especially faith in God. God has shown us a miracle right before our eyes. She has a determination and fight that can't be described. She is still the center of our world. She is her sisters' pride and joy and their little baby. She has brought laughter, love, hope, and strength to each of us.

Someday, she can sit down (for a very long time) and read this journal and her guestbook and I am sure she will be in tears at time, laughing at times but she will be feeling so much love that has come her way through these past 4 years. A love that has no words to describe but that is always present.

Thank you for helping us in this fight, for being our friends, our angels, and just so much more.

God bless you:)

Love, Tracy


**********

April 13, 2006 2:50 PM

WBC 6.09
HGB 12.1
PLT 604
ANC 3897


Katia had clinic this morning which went very well. Nice and quick:)

The colonoscopy has been basically called off because of Katia having C-Diff (infection in the bowels) which would mess up the test results. I am sure she would be happy to know that if she had known she was going to have a colonoscopy. I was getting worried about her having to go without food for the day and half before the test. She is on steroids and therefore is hungry 24/7, literally!

We are still working on a treatment plan. Her doctors are still discussing things with the leader of the trial she was on. We are trying to get her FK506 level up around 10. That is one of her immuno suppressing drugs. It has been around the 5's but today is 4.6 so it needs to be bumped up.

With the steroids going up, Katia needs to remain active. She has been pretty much a couch potato due to either having bottom pain, eye pain or just being too tired. If she does that, her muscles will go away in her legs that she has worked so hard on. So, she has to be up and about more. Of course, that brings more crying from her but so would not being able to walk again.

Her mouth has definitely improved since going back up on the steroids. Her eyes a little, her skin a little and her finger tips a bit.

Someone asked me if this was like starting over. Well, not really. Starting over would be a relapse of leukemia. That is not the case. Katia's body is just as stubborn as her so it is basically trying to reject the new marrow and get it out of her system. You would think after two years, her old system and new system would be friends? Not the case.

Katia's mood lately has been down in the dumps but she does have good moments here and there where she seems very happy. I have had to go up on her pain meds to about 2 to 3 times daily. We were down to once, sometimes twice a day. Hopefully things will improve and she will require less and become more active.

We like to see our happy and bubbly Katia:)

She loves her mail so thank you!! I told her a lot of people are praying for her and I read guestbook entries to her. She is extremely clingy to me again but she enjoys Sharayah and Tatiana being home also. Luckily they are off Friday and next Monday from school so that should make her happy.

Easter around here will be pretty quiet, I hope:) We will just be happy to be home together. Myron works in the morning but the girls can do an Easter egg hunt with Katia and you know our Easter tradition. Nice notes from each family member to each family member:) That is always nice, full of laughs and even some tears. I think we have done it for a few years now but I know I look forward to it. We all save our letters in a nice safe place so we can always look back on them.

What are your Easter traditions? Plans?

Usually we would go to church but Katia cannot go yet so we do a devotion here.

Saturday we hope to spend some time with Carol and the kids.

Have a nice day:)

Love, Tracy

PS Please keep Jimmy in your prayers as he has been having a lot more spasms. I am sure they could use some encouragment. If you don't know his story, please read his journal history.

PSS
Also, a friend of ours, Frank Sanchez received the Daily Point of Life Award today, April 13, 2006. I am not sure when the link will expire but if you click on it today, you can see Frank visiting Katia at our house just shortly after she returned home from Transplant back in 2004. Frank has been a big help to the Katia Solomon Foundation and a very good friend to Katia and our family:)







April 12, 2006 1:41 PM

Hello:)

I think I can add "short-order cook" to my resume. There seems to be a lot of eating going on right now with Katia. Her moods? Still very up and down with a lot more downs than ups.

She didn't last too long out with Myron yesterday as she started getting tired, her eyes were bothering her and she was getting cranky. It was nice that she was able to go out for a bit though.

She is having some dramatic ups and downs with her sugars. Yesterday they jumped up to 316 and today they are hanging around 150. Today it is more normal but yesterday, I gave the doctor a call. Hopefully it will stay down like today or she may need insulin to control this. I would really hate to add something else to Katia's medicines.

She went out to her house today for a few minutes but got tuckered out and had to come right back in. She is quietly watching one of her movies and waiting for lunch. I thought I would update while her lunch heats up:)

I want to thank you so much for your prayers and kind words. I love reading the guestbook. I don't know if I have told you lately how uplifting those messages are especially on days like these. I hate to complain at all because I want to kick myself, knowing that things could be much worse.

I want to close this out with what was going on with Katia 4 years ago at this time. She has gone through so much and come so far and she still has that pretty smile!!


April 11, 2002 TGH at 6AM for the embolism procedure with Dr. Evans. Procedure went very well and Dr. Evans tell us he is very pleased. Keep eye out for swellinhg and bruising (which will occur since the blood source has been cut out). Katia to spend night at TGH and go home tomorrow. Night went well. Wet diapers, decent eating and temperature and blood pressure all good.

April 12, 2002 Met with Dr. Evan's partner who looked at Katia and examined her. Said she looked good. Released and told to use Tylenol for fever. Left around noon. Ran into accident traffic on interstate. Katia was very cranky. Got home and around 3PM Katia started feeling bad. I gave her tylenol and called Dr. Evans when the fever reached around 101.0 and some bumps appeared on her neck that evening. Said the anestesia could cause the fever and headaches. Call pediatrician if fever continues. Katia had a rough night with a fever around 102.0. She was crying and saying, "OUCH" a lot!

April 13, 2002 Took Katia to TGH ER due to a lot of pain, fever and bumps. Saw Dr. William Brown. Took a spinal tap and found menengitus. In urine found a UTI. WBC count was 48,000 (well above normal). Admitted to Pedi Ward #F512. Had fever throughout the night up to 102.0. Ate some fries but very low activity level. Had nurse Anna throughout the night.

April 14, 2002 TGH admit. More blood test run. WBC 77,000 (big increase). Fevers continue. Cultures from spinal not back yet. Dr. Lynn Ritenberg feels it may be viral menengitus. Confused how she could have gotten 2 infections so quickly. She called Dr. Preston and I talked to Dr. Preston to update her.
Around noon, Katia perked up and had some fries. Activity level very low and she is tired.
Around 4PM She had more fries. She is asking for bottles of milk but won't drink them.
Dr. Statler says an Infectious Disease Doctor will come by tomorrow. Says this is not a "by the book" case. They add 2 more antibiotics to her I.V. Zovirax and Vancomycin. Zovirax is for herpes and the Vacomycin is for infections. Fever finally breaks around midnight to 97.9.

April 15, 2002 Met with Dr. Irizarra. Still waiting for some culture results.

7:00 AM Met with Dr. Dubious (Infectious Disease Doctor). He examined Katia. Will see the results from the blood tests and get back with us.

9:45 AM Team of doctors come in to see her with Dr. Irizarra. Staying on antibiotics she is currently on.

Day turns very bad!!!

1:00 PM Dr. Rittenberg and Dr. Irizarra came in to inform me that Katia's spinal fluid and blood showed signs of LEUKEMIA!!!! An immediate transfer to All Children's Hospital is currently underway. We will go by ambulance.

3:00 PM Left to ACH via ambulance. Assigned to room #268. I felt numb and confused and I just wanted my baby to feel better. She was crying and crying in the ambulance on the way. I was just looking outside thinking our lives just changed! I felt so different all the sudden. Our nurses at ACH were Mary Anne and Jennifer. Dr. Kerr saw Katia. We got blood set up and had blood tests run. There was a lot of people in and out of the room. She had a new IV put in and was put on Allopurinol by mouth and Ceftazidone via IV.

9:30 PM Done with tests for the day. A lot of people have talked to us and given us a lot of info. Still I mainly just heard LEUKEMIA at this time. Tomorrow she will have a bone marrow test done to find out which type of Leukemia she has so they know how to treat her.

April 16, 2002
6:30 AM. Blood work drawn Bone Marrow Test to be done in the morning. Signed papers for research programs.
10:00 AM Bone Marrow, Spinal and blood test done. Waiting for results. Dr. Grana comes in and says there are 2 types of Leukemia. ALL or AML. ALL is more common and AML is worse and harder to treat.


1:00 PM Dr. Grana comes in and tells us Katia has AML, the worse one. I fell apart after I heard her out. I just fell apart. I went and looked at Katia who was asleep and just wondered what I was supposed to do. How did this happen? Was she going to die? Was there any hope for her future? I just felt like I died inside right then and there.




Love, Tracy





April 11, 2006 1:30 PM

As I type, Katia is out with Myron. We figured a change of scenery would do her some good. He is going to try to get her by a park for a bit. Her eyes are bothering her so this may be a very short outing. However she was tickled pink to have an outing with Daddy, just the two of them. Poor child is usually stuck with me:)

I have updated on Estephany via her site and also added a song to Jerry's site that he really liked. I am trying to make some changes on the www.ladybugkatia.com site so it loads easier and also is easier to find information. A lot of things were on there twice and such.

We so much appreciate your prayers. No word on Katia's upcoming colonoscopy/endoscopy visit. She is doing well taking her meds though. That wasn't the case yesterday. She started spitting up her pills. Today, she was back to her normal self, taking her pills with no problems. I really admire her abilities and attitude. She is my HERO:)

Lots of love, Tracy








April 10, 2006 7:30 PM (2nd Update Today)

Katia's day has improved some. After I updated, it got very bad. She literally was just screaming and kind of walking around like she wanted to hit somebody. This is due to the high doses of steroids that were suddenly pushed in her while at the hospital.

She is easy to get upset right now so it is like we are walking on eggshells BUT she is playing PlayStation with Tatiana and seems to be happy right now.

At the hospital, she got into the Chicken Little and Madagascar Games with their PlayStation but I don't have those here. That got her upset because she says everything is too hard for her to play BUT that is what big sisters are for, to help:)

See your prayers are working because she is improving and a bit happier.

I do turn to her doctors for advice and they are always very compassionate and always have good advice. After I heard from them, I tried getting Katia to do some of her homework. Who would have known that homework could be comforting? She did a few pages and it really seemed to calm her down. She isn't really one to sit and play with toys by herself or for that case, do anything by herself. I am surprised she got into PlayStation at the hospital and was able to amuse herself for quite some time. She does pretty well on GameBoy by herself too for a while but when she gets stuck, she just turns it off.

Well, I just wanted to get on here and let you know she is improving:) I like to give good news since I dump bad news on here to you.

Love, Tracy


PS The picture at the top of the page was at the hospital this last visit. The one with the mask was in the hospital two weeks ago. The one of her holding the bunny was shortly after she was told we could come home yesterday. Call me old, but right now, I can't remember what other picture I posted... Oh, the one at home!!! Yes, when they said she could come home, we came straight home in the jammies she had on at the hospital. She was happy to be home.









April 10, 2006 2:12 PM

Hello.

I would like to say things are going better today but really Katia is just having a very bad day. She is just really unhappy to say the least.

I know steroids have never been easy on her as they make her upset and mad and hungry but this time seems worse than other times. Although she says she is hungry, she takes one bite and is full and then she cries because she doesn't know what she wants to eat then. Not just little crying, BIG CRYING, non-stop crying. I feel so bad for her because she has told me in the past how out of control she feels. Having had to be on steroids in the past, I understand what she means.

She can't play because she says she is too upset to play. She can't watch TV because she can't find anything she wants to watch. She will talk to me for a bit and calm down and then she just gets upset again. As you can imagine, this brings my nerves to their bare edges too. But mostly, I just feel bad for her.

So, my prayer request today is just for Katia to feel happy.

I wanted to update for a bit while I had the chance but as you can imagine, she is keeping me extremely on the go today.

Thank you for your prayers.

Love, Tracy


**********

April 9, 2006 4:14 PM

We are home:)

Katia was released and will go back, out-patient, for the colonoscopy and endoscopy mid-week. Whatever the results of that are will help determine the next treatment. She will of course be on the high dose steroids to bring her GVHD back under control and that seems to be working. This is just a temporary fix though and not good for her body.

I am a bit concerned due to elevated liver counts also so we will keep an eye on those also.

Katia, although she is home and happy doesn't always mean she is healthy. However, since we always know things could be worse, we always tend to look at the bright side of things. This however is a setback and it is scary. GVHD can quickly get out of hand and also new treatments are always risky. We are quite low on options seeing that she has basically had 3 GVHD treatments fail. I do however know that her doctors are "on top" of her treatments and looking at every alternative. The good thing in the pediatric cancer ward is most facilities work very well together and a lot of the protocols for treatment are shared and help everyone.

Pediatric cancer treatment as well as treatments for many of the acute and chronic side effects change rapidly with new research and trials going on. The Pentostatin Katia was on was a trial and although it didn't work for her, it may be promising to others.

This time, her GVHD flared up mainly on her skin all over and inside her mouth. Her fingers became a lot worse and very sore. Her bottom and mouth are very sore as well which is why we want to take a look inside her digestive tract (colonoscopy and endoscopy). We need to know how it has affected those areas.

I ask your prayers of course for Katia but also her doctors as they will be working on her case. When she does start a new treatment, the prayer is that it will cure her GVHD.

Also, please continue to pray for those on the Prayer Requests lists and for many others in need of prayer.

One prayer request is for my Mom. She just lost her husband (not my father) to leukemia AML this past week. He had just been diagnosed days before. AML is a very very aggressive leukemia. I also just read about a little girl that was diagnosed March 7, 2005 and passed the following day. If you would like to read her story, you can visit Caylee's Website.

One never knows how their life will be affected.

Love, Tracy

PS I will update with some new pictures tomorrow:)









April 8, 2006 11:50 AM

WBC 3.91
HGB 11.0
PLT 399
ANC 3370

The steroids seem to be helping Katia clear up her skin and her mouth. She will be back up to her highest dose (30mg per day) again until a treatment plan is figured out. We need to get results from a colonoscopy/endoscopy before a plan is made though to see whether or the GVHD has spread to her insides as well.

Her sugar level is already showing a high increase due to the steroids as we figured it would. Steroids usually effect her in her blood pressure, sugar levels, bone density, moods, appetite and a lack of sleeping as it makes her so high strung.

Hopefully the colonoscopy will answer some questions as to why her bottom hurts so bad. She is always rocking back and forth if she is sitting and moving around if she is laying down due to bottom pain.

Although the steroids will seem to bring her GVHD back under control, it isn't an answer. There has to be another treatment plan. There is another drug and then photopheresis options that they are looking at right now.

Of course, nothing can promise that it will work but it is at least best to know exactly what we need to fight before starting another treatment. GVHD is something that can be chronic and ongoing for years but it can also be life threatening if it effects certain organs or gets out of control.

We appreciate your prayers and of course your ideas. I do share ideas. Every patient is different but all ideas are looked at.

Katia's doctors just attended a study on GVHD so there were a lot of discussions on different ideas and cases.

I will update later. The idea may be to go home and come back and do the colonoscopy/endoscopy on an outpatient basis this week. They are going to try to get this worked out. It always seems we end up here on the weekends when there isn't much that can be done.

Thanks for your prayers:)

Love, Tracy







April 7, 2006 9:00 PM

WBC 6.33
HGB 12.2
PLT 436
ANC 3640

Well part of the verdict is in and that says a flare up of GVHD. That would mean the Pentostatin is no longer working. That isn't what we wanted to hear but that is what the problem is. She has continuously been losing hair and running low grade fevers and I think that has been due to the Pentostatin but her arms, legs, belly and mouth are just a mess now. It is also on her feet and hands. We are going to do a COLONOSCOPY and an ENDOSCOPY to check her inside and see what is going on with her digestive tract and rectal area. She has been having a lot of stomach and bottom complaints which could also be caused by GVHD spreading there.

So, the plan right now is IV STEROIDS and going back up on her oral steroids which of course, we all know the side effects of the steroids. One definite concern is Katia's already very fragile bones. She is going to need some x-rays already because of some back and hip complaints to check on fractures in those areas.

Another thing we are going to be starting is a treatment of BISPHOSPHONATES. Bisphosphonates are a family of drugs used to prevent and treat osteoporosis. Hopefully this can help repair some of the damage that has already been done. There is a lot to still plan out and to work out with insurance. Some of these treatments can be very costly and hard to explain to insurance companies why this is a necessary treatment.

So, the next few days will be busy and full of changes. I have great faith in Katia's doctors to come up with a plan. There just aren't many plan options for her condition that won't harm her in another way.

She continues to fight fever so we will see if any of her cultures grow anything over the next few days. Last admit, nothing grew. There obviously aren't test for every virus out there. Hopefully the antibiotic she is on is fighting whatever is causing the fevers.

Katia doesn't like the sound of steroids as she knows they make her puffy and "mad". Hopefully something else can be figured out. At one time photopherisis had been mentioned but I am not sure that is still an option or not. A lot of things are looked at differently with each individual patient depending on the diagnosis, past and present treatments and treatment goals.

Thanks so much for your prayers. I will keep this updated as information comes to me.

Katia says hello:)

Myron and the girls are here so she is getting some of the best medicine she can have right now!

Love, Tracy





April 7, 2006 3:15 PM (2nd Update Today)

We are on our way in for admit. Katia's temp is up to 38.6 and rising. Her heartrate is just going very fast. The rash seems to be getting more aggressive so hopefully something can be started right away to bring the fever and rash some relief. She also isn't drinking much and her belly hurts too bad to eat.

Please pray.

Love, Tracy



April 7, 2006 12:14 PM

Katia woke up today with a low grade fever 37.6 (38.0 is admit) and a rash. So we are going to take her in.

I know her GVHD looked like it was flaring up but I don't really know if this is GVHD (I hope not) flaring up this badly or if it is a rash due to fever.

If it is the GVHD flaring up, there will need to be a change in treatment as she just had the Pentostatin yesterday. Her counts today will probably give us more information.

I am not sure about admit but we are packed just in case.

Katia is determined to not be admitted but when she saw me putting a bag together, she agrees they will probably admit her. She likes the people at her hospital so she usually adjust well. I know with Jerry's passing, she is just a bit skeptical.

Please pray for Katia. Pray this isn't GVHD getting out of control and pray for her emotionally.

I will update later.

Love, Tracy



**************

April 6, 2006 12:11 PM

As I type, Myron is at Jerry's service. We went to the Family Visitation last night and so many people were there. It was nice talking to some of Jerry's family that don't live here. They were telling me a lot of things about Jerry when he was younger and it was really nice to hear these memories.

Jerry was definitely into music as we all know but I wasn't aware of many of his performances in his younger days (not that he was old). He had quite the fan base. There was a video playing a lot of pictures that Carol and one of Jerry's brothers had picked out. Very nice pictures of them dating, on the honeymoon, welcoming the triplets into the world and just fun times with family and friends.

So many have followed Jerry's story via Katia's website. That is one of the main reasons that I even started Katia's website was to be able to share her story and touch lives of people we hadn't even met. Then when I had started putting links and prayer requests on here, I did that because I wanted to be able to link to even more families that could use prayers and encouragment. I know a lot of these stories aren't always easy to follow when people pass away but I do know that the families' lives have been touched by your prayers and your encouragement.

This last week has not been too good as I know Cam is also having his funeral today and a few others have just recently passed away as well. But, it is in those times that encouragment is so needed. So, I appreciate your sticking close by.

A lot of times, people back away when someone is diagnosed with terminal illness because of the fear of saying the wrong thing, not knowing how to act or just the fear of the person passing away. Those are all true fears.

It is a risk when you reach out and develop a type of relationship and extra care for someone that really isn't promised "tomorrow". I know that risk and appreciate each of you.

We are off to clinic in a bit for Pentostatin. We were going to take homework with us but we actually got the remaining homework done this morning:) Katia is so eager to see Ms. Michelle tomorrow!! She wanted to make sure everything was done and ready on the table. So she is done.

She isn't feeling well at all right now. She has mainly been flopped for most of the morning so I was surprised when she wanted to get the rest of her homework done. I think she wants to make sure classes aren't cancelled tomorrow due to her feeling sick. Hopefully Katia will get this dose of Pentostatin today and it won't get her more sick or cause her to get a high enough fever to go in. Right now her temp is remaining around 37.3 - 37.5. Just so she can stay under 38.0, she is okay. I really do want her to be able to have class tomorrow.

I will update later:)

Love, Tracy






April 5, 2006 5:15 PM (2nd Update today)

WBC 5.78
HGB 11.9
PLT 527
ANC 2420

Katia's labs show there are a few things going on. To me, it makes me feel like something is "brewing" right now but hopefully the two antibiotics will help keep it at bay.

The other thing is that her GVHD is flaring back up. She does get the Pentostatin tomorrow and then we will probably go back up on her FK506 (PROGRAF) depending on her levels. Katia runs a fine line with these things due to her kidney counts.

Her sugar levels have been doing well lately and I haven't shared that so I wanted to put that on here to let you know:)

We are headed out to Jerry's service tonight. His funeral is tomorrow. Katia and I will be at clinic but Myron will be at the funeral. They are planning to do a "singing service" as Jerry loved music so much. It is still hard to believe he is no longer here on earth with us.

Thank you so much for your prayers for his family.

Love, Tracy








April 5, 2006 12:45 PM

We had clinic this morning but I don't have any lab numbers yet. They will get them to me later in the day. Katia really wasn't eager to get to clinic this morning but I had discussed her feelings with her doctors and everything went fine.

She has been a little warmer than usual with a low grade temp on and off so I hope we aren't about to repeat the last time she had the Pentostatin and ended up with an admit. Tomorrow is the day for Pentostatin. So, please pray her counts look good and there isn't anything in her body trying to grow. She is still on two antibiotics so she SHOULD be covered to fight things off.

Your cards for Jerry's family that have come in will be given to Carol. I have gotten a few emails about the fact that some were written before Jerry passed but Carol will understand that and I am sure the encouraging messages will still be appreciated. I appreciate your thoughtfulness. I know getting a card, writing a message, putting a stamp on it and getting it into the mail isn't always as easy at it sounds. TRUST ME... my sister always used to pick on me about not sending out Thank You cards. Now I always tell her, "I am an email kind of person." She is the opposite as far as getting behind on emails.

I also get some very nice emails about how am I feeling and doing? Well, to sum how I feel up in one word, "SLUG". I just have gotten worn down lately BUT, I am not the type of person to really stop and just not do anything. There is always something that needs to be done and my eyes always seem to land right on the chore that needs to be done. I am very much into routines also so it is hard for me to really "change my ways". You know what they say about "OLD DOGS"...

There have been a "higher than average" amount of unplanned stresses lately also. Kind of like a stress magnet. Both emotional and financial. We know a lot of people going through similar situations as our family is. This is something that you really wish nobody else ever had to face. I hope there will be a time in the very near future that a lot of these diseases will have a cure. Until then, we just have to keep living each day as it comes and making the most of each day.

I told Katia on the way to clinic today that she always brightens my day. That is true because she has such a different way of looking at things. She makes me laugh and she has taught me a lot about appreciation. She actually came in my room last night (this morning actually at 4:15 AM) to let me know she was thinking about me. She doesn't require much sleep so she gets up and down a lot during the night. So, I walked her back to her bed and did the tuck in and kiss routine. She just smiled. Although I can't think of anyone who wants to be waken up in the middle of the night, that was nice:)

Anyway, I appreciate your concerns. THANK YOU:)

We did have a talk with Katia that I think calmed a lot of her recent fears after Jerry's passing. Katia is very easy to talk to. She is very smart in a lot of ways for a 6 year old but also she is very innocent in many ways to things she hasn't been exposed to. We try to keep "fear" away from her as much as possible. It is a fine line between her having to "deal" with things or her having to "fear" things. I think this past week caught her a bit off guard and left her with a lot of questions, fears and she needed some answers.

I will be back later to post her counts when I get them.

Please pray for Jerry's friends and family. His service is tonight and then his funeral is tomorrow. I am sure this will be a hard time for them. I am so grateful they have such a supporting family and a great group of friends. I know one thing, Jerry will never be forgotten. He left quite a mark in this world.

Love, Tracy

PS There are some newspaper articles from yesterday listed on his site.






April 3, 2006 6:30 PM

I want to thank so many of you for your kind messages both here and in Jerry's guestbook.

As you can imagine, a lot has been going on in trying to get details together for Jerry's services but the details are now listed on his site.

Since Jerry loved music so much, his service is going to have a lot of music, different people singing and will hopefully be a nice tribute to his life.

Katia has been having a difficult time. Usually she knows a lot about what is going on but one thing she has been sheltered from his death. She has been "different" since hearing of Jerry's passing. She really knew Jerry and loved Jerry and always thought his "new blood" would make him better. She knew Jerry was very sick in the hospital but I don't think she understood how sick and what could happen.

Yesterday, she told Myron if she gets sick, she doesn't want to go back to her clinic or the hospital because Jerry died at his. That was just heartbreaking to hear her say.

So, we are going to kind of feel around with what she is thinking and try to talk to her in a way of bringing her comfort in knowing that although her and Jerry had many things in common, Jerry was very sick with a virus that she doesn't have. Katia is very bright for a 6 year old in many ways but in so many other ways, she is just a baby.

I hate to see her going through these feelings and uncertainties. I can't imagine what Jerry and Carol's three kids are going through right now. I just know that all of us who knew Jerry and love his kids will do everything we can to always show that love to his children so that they will always know how special their daddy always will be to each of us.

Jerry and Carol asked the instead of flowers and gifts, that donations be made to the Katia Solomon Foundation. They both strongly believe in what the Foundation supports and were there from the beginning to help us not only find Katia her bone marrow match but also to form the Foundation to help many others.

Again, thank you for your many many prayers. Carol is so grateful to know that so many have been praying and are continuing to pray.

Love, Tracy









April 2, 2006 11:26 AM


Jerry with Katia in January 2005


Jerry and Katia shared a unique bond. I remember when Katia found out Jerry also needed "new blood", she would pray that he would find his match. She would always ask how Jerry was doing and draw him pictures. Jerry always had a strong concern for Katia and how she was doing. Katia was so happy to find out Jerry had a match and was going to finally get his new blood. She was happy to hear when he was returning home to be with his family.

These last few months, as Jerry was in the hospital fighting for his life, Katia always remembered him in prayers and would send a picture for him with Myron or us when we would go to visit. Jerry would always show concern of how Katia was doing although he was going through extremely hard times.

Last night, when we got the call that Jerry had passed away, Katia heard Myron on the phone say, "Oh no..." So, she asked Sharayah what was going on and Sharayah told her that Jerry had passed away. As soon as Myron got off the phone, she came in and asked, "Daddy, why did Jerry die?" It was heartbreaking. We don't let Katia know everything that goes on with others passing away. We try to keep things positive around her. She did however know that Jerry was in very serious condition. She knows his 3 children and they all are always concerned about Katia as well. We explained to her that Jerry went to be with Jesus in Heaven but that he would be able to look over his family and watch his children. We explained that he is happy and not in any pain now.

As we were leaving to go visit with Carol and the children, Katia asked us, "Tell them I miss Jerry." Although she is so innocent in so many ways, Katia does know a lot about life and she appreciates it as she knows life is not something promised to everyone for a long long time.

She likes this picture of her with Jerry because she said, "We were being friends." And that they were. Although they were far apart in age, they will always share a bond.

Gomez Family Video that aired when Jerry was seeking a match in early 2005. It is a beautiful video.


"Jerry, we will miss you so much but we will make sure you are always remembered for all that you stood for and the love you shared."


Love, Tracy


PS Arrangements will be posted on Jerry's site as soon as they are available.






APRIL 1, 2006 I come here with deepest sorrow to let you know Jerry Gomez passed away around 12:30 today in the hospital. I will update more on arrangements later. Please keep Carol, Olga, Julia, Max and Robert as well as their families and friends in your prayers. Love, Tracy



*************

March 31, 2006 12:44 PM

Good day:)

Yes, today is better. Katia is feeling a bit better and isn't glued to her bed, my bed or the sofa. She is kind of wondering around and being closer to her normal self.

Her stool did test positive for C-Diff so she will get back on the Flagyl to clear that up. She is also on Augmentin for the fever she recently had and she is always on Penicillin just to help her stay healthy due to her immune system being so low she is easy to get sick.

She doesn't argue about any of the medicines but she is never a fan of FLAGYL. It taste really bad to her. But, she also knows it will make her poopies better and make her feel better. Part of the pain she is in is probably due to cramping and pain from C-Diff so in the next 2 days, that should change. We are planning on a quiet, boring, uneventful weekend:)

Please visit the prayer requests above. I am going to just have the Prayer Requests here for now on and the links on ladybugkatia.com as it is too hard to keep the same prayer requests updated on both pages. I so much appreciate your visiting these sites and offering your encouragment.

There is a song by Ray Boltz I think called, "Thank you". It was written in 1988. It talks about how one person's life can touch so many and yet, we never know the lives we have touched. I think encouragment and prayer is so important for everyone. Here are the words to the song.

Thank You

Words and Music by Ray Boltz

I dreamed I went to heaven
And you were there with me
We walked upon the streets of gold
Beside the crystal sea
We heard the angels singing
Then someone called your name
You turned and saw this young man
And he was smiling as he came

And he said, Friend
You may not know me now
And then he said, But wait
You used to teach my Sunday School
When I was only eight
And every week you would say a prayer
Before the class would start
And one day when you said that prayer
I asked Jesus in my heart

CHORUS:
Thank you for giving to the Lord
I am a life that was changed
Thank you for giving to the Lord
I am so glad you gave

Then another man stood before you
And said remember the time
A missionary came to your church
And his pictures made you cry
You didn't have much money
But you gave it anyway
Jesus took the gift you gave
And that's why I am here today

CHORUS

One by one they came
Far as the eye could see
Each life somehow touched
By your generosity
Little things that you had done
Sacrifices made
Unnoticed on the earth
In heaven now proclaimed

And I know up in heaven
You're not supposed to cry
But I am almost sure
There were tears in your eyes
As Jesus took your hand
And you stood before the Lord
He said, My child look around you
Great is your reward

CHORUS (repeat)

I am so glad you gave


It is just a beautiful song!

Well that is about all for now. Thanks for dropping by and may we all have a good weekend:)


Love, Tracy










March 30, 2006 5:20 PM

WBC 5.27
HGB 11.8
PLT 523 (high)
ANC 1870

As you can see, counts are improving:)

Katia had clinic this morning and has been chilling in bed for the rest of the day. She is however eating better:) She is drinking better:)

She continues to have runny stools but no accidents today. Yesterday she had 4 accidents with bowel movements and one with urine. She gets embarassed by it and I feel bad for her. She is much better today with that though. She is however still having a lot of bottom end pain that just suddenly comes up. Hopefully that will show improvement through the weekend. Pain medicines seem to control the pain somewhat though which is good.

I want to thank you for each of your prayers. It is so easy to let things get ahead of me and start feeling bad. Life isn't easy. That is for sure. I remember adults saying that when I was in such a rush to "grow up" and now I tell my kids that. I am sure they will pass that information on to their own children. It just seems once the ball starts rolling sometimes that more and more things go wrong. I do however REALLY notice when things are going good. I appreciate good days, boring days are even better! I am sure anyone can understand that:)

I have a silent prayer request to ask you to keep in your prayers. Thank you.

Our next SCHEDULED clinic visits are for next Wednesday and Thursday. Wednesday for labs and Thursday for Pentostatin. Hopefully by then, Katia will be feeling much better. She has been VERY whiney lately at everything. I know she feels bad and I am sure she is just wanting to feel better so she can play and move around the house again. She hates feeling confined due to feeling bad.

That is about it for now. I want to check on some other CB sites before I get started on dinner. My day isn't complete without checking on others:)

Love, Tracy












March 29, 2006 6:25 PM

Katia is feeling a bit better right now. She is playing in her castle with Tatiana and drinking some Pedialyte. Tomorrow, when she goes to clinic, we are going to check her counts and plug her into some IV Fluids. If she can't get this Pedialyte down enough tonight, I will have to take her in so she doesn't get dehydrated. Hopefully it doesn't come to that. She is really trying to drink.

I added a song up in the playlist above. The song is "Wonderful Tonight". It is by Eric Clapton. Myron wrote the Reggae Arrangement and recorded it in the studio a while back. Enjoy:)

Also we are totally out of ladybug bracelets so all orders (through today) have gone out in the mail but that is it. We are going to come up with a new design. Katia wants to pick out some new types of beads and such and use a charm on the bracelets. So, she will be the designer and we will be her little worker bees:) She helps when she can though. She did help stamp the ladybugs on the envelopes that went out today.

Thanks for checking back. I will update with anything further if something comes up. Please pray her counts have improved tomorrow.


Love, Tracy








March 29, 2006 3:12 PM

For now, things aren't improving. Katia is still feeling really bad. She has had a few more accidents (uncontrolled bowel movements) so I know she really is not feeling too well. She will have burst of energy here and there and get up and walk around but basically she is just laying low.

It really bothers her when she has an accident so for now, she is back in PullUps. I think she is coming down with C-Difficile again. I am taking a stool specimen to clinic tomorrow.

Thank you for your prayers. I just wanted to get on here and update on how she was doing.

Love, Tracy










March 28, 2006 9:34 PM

I came on here to update the prayer request for Camryn above but I also want to ask you to pray for Katia to start feeling better. She is feeling lousy, warm and itchy. She doesn't want to eat because her belly hurts.

She had a really large bowel movement before getting to the bathroom which isn't normal for her so I know she feels really bad.

She came home to some very nice cards and postcards and even a box of goodies. She was so happy to have mail waiting for her. Mail is such a spirit lifter:) Thank YOU!

Love, Tracy






March 28, 2006 5:30 PM

WE ARE HOME!!

"There's no place like home."

Katia was happy to walk out of the hospital but she is not feeling well right now. She has basically been either on the sofa laying down and now she is in bed. Hopefully she will start feeling better soon.

Her counts have me a bit concerned because I don't want her to break out in another fever. She is always in good hands at home too. Daddy is cooking dinner right now and she is happy to have all of us around her at one time. She hates when daddy and the girls have to leave the hospital each night.

Please keep her in your prayers that she will feel better and be able to eat and be more active. We go back to clinic on Thursday for counts and to check up on her. She feels warm right now but her temperature is normal at least. Just her skin feels hot.

Lots of love, Tracy














March 28, 2006 10:10 AM

WBC 2.40 (low)
HGB 10.7 (low)
PLT 399 (good)
ANC 780 (low)

Hello there.

Thanks for stopping by. I really hope this evening I can update from home:)

Katia's counts have dropped out. Normal ranges are above so you can compare Katia's/Normal.

She is feeling better than she did when she came in but her problem right now is just different pains. Eye pain in her right eye. Her hands are both hurting her. Her bottom lip is really sore. Her back and neck are sore but better than a few days ago. The hands and lip are new. We haven't had that problem before. Finally after some codeine, she is using her hands to eat but before the codeine, it hurt to move her hands in anyway and she was just laying on her pillow with her arm over her face blocking her lip.

We were having some issues with low blood pressure when she came in but that seems better also.

I did walk out on the bridge this morning. After having spent so much time in this hospital back in 2003 through 2004, I know a lot of "escapes" and the bridge has always been my favorite. Especially early in the morning or late at night. During the day people are back and forth going from the hospital to the medical buildings. It is a good place for peace and quiet, reflecting and praying. I have also had a few "SCREAMS" out there which I got to some very high stress moments soon after Katia's relapse, lung surgery and transplant.

Through all of our hospital stays since 2002, there has only been one stay that things weren't satisfactory. The doctors, nurses and complete staff here have always been tremendously helpful to us. Just one stay, while we were in isolation and Katia was in so much pain due "extreme butt problems", I felt like I wasn't getting answers and that things were delayed. It was just a high stress stay since Katia was crying and screaming so much. It turned out to be a few issues causing her so much pain which is why it seemed like a delay.

Katia doesn't like being admitted but usually she agrees with being admitted and knows it is for her best interest and that it will make her feel better.

I will update later when I know about going home or not. I think there is a very good chance of release though:)

Love, Tracy

PS Please remember that we are collecting cards for Jerry's family. The info is above the journal entries. We appreciate your involvement and I am sure Carol and the children will LOVE getting the cards:)



*********

March 27, 2006 8:00 PM

The rest of our day has gone pretty has gone pretty well. We are changing her antibiotic planning to go home tomorrow. She gets that first dose tonight, which is oral.

Her right eye is giving her a lot of pain right now and most of the afternoon. Nothing seems to be helping it. Daddy is here so that helps distract her. He is like the best medicine:)

I mainly wanted to add the picture collage above. It took me nearly an hour and half to be able to do that... but I wanted to show her fan and how she is doing. She had fun making that mask today also.

Thank you for your prayers and encouragement:)

Love, Tracy






March 27, 2006 12:00 PM

Hello there:)

I tried to update last night but was having issues with my laptop. I am beginning to realize it is on its last legs. It has such a slow processor that it is hard to get things done without it bogging down and signing off a lot of times. I rely on this computer a lot so I would hate for it to just give out. That would be bad. Isn't it amazing how technology has become such an important part of so many peoples' lives? It is definitely important for me to stay in touch and stay organized.

How is Katia?

Things here are pretty much the same. We are going to probably change antibiotics over to an antibiotic we can do at home and see how she does over the next 24 hours. Her pain in her back and such has improved. Her morning has been going okay other than her eyes are bothering her quite a bit right now. She is trying to play Playstation though (that is the difference between kids and adults-we would just go to sleep to escape). She is playing one of the hospital's games of Chicken Little. Very cute game:)

Since her eyes are bothering her, I really can't get a picture of her with her fan so I will wait and post it when we get home and she is feeling better. She has some more crafts to paint today. She LOVES painting wooden crafts.

Today, she saw the perfect "pet" for her to have. Seeing she can't have a real dog, she wants a RoboDog or something. I didn't see the whole commercial but she likes that it can get up and down if it falls over and that you can tell it what to do:)

If all goes well today, we will hopefully be able to leave some time tomorrow. As nice as it is to get to see the different nurses and hospital staff, we have visited enough now:) I am amazed at how long we actually stayed before and neither one of us went out of our minds (well not too much). I forget how long but I just know it was over 9 months straight because I figured it was a bit longer than a full term pregnancy. Seeing that Katia got her "new blood" it was like giving birth again-just less painful for me.

Now she is over 2 years out of transplant. Although she still has problems (especially with the ongoing GVHD), we are grateful that she is doing well and especially appreciative of the care and love she receives here at All Children's Hospital.

Well, she is stuck in a bush on Chicken Little so I need to go help her escape:)

Love, Tracy








March 26, 2006 2:00 PM

Katia is doing MUCH better today. She is on Ibuprophen which seems to be keeping the fevers away. She hasn't had a fever since 9PM last night:) She was in quite a bit of pain during the night with her back, neck, legs and mouth but the Ibuprophen seems to be helping that too. Normally we can't use Ibuprophen and Tylenol so she responds well to it. None of the blood cultures have shown anything but they explained a lot of the viruses really can't be traced, just treated. I like answers so I prefer when there is something that explains things. The leg pain, back pain and neck pain are probably connected to whatever her body is fighting.

Her eyes were bothering her too and got very puffy last night and through this morning. Hopefully that puffiness will start to go away also.

For pain scales, they use a smily face type of chart so kids can point to a face that shows how they feel. There is a BIG SMILE, a smaller smile, etc and then all the way down to a big frown. Obviously the smile means you feel great and the big frown means you feel horrible. This morning Katia pointed to the big frown when I asked her. She normally doesn't even use that chart. I said, "Oh, you feel THAT bad." She said, "Yes, but I am still happy even though I feel bad." I think that is one of her biggest helps in getting through all she has been through. She is just determined to always feel better than she does and be happy with whatever she is having to do. Right now she is painting a little fan. Her back hurts but she is propping herself up and painting. I asked her if she wants to hold off and just lay down a bit and she wants to finish the fan first. She keeps sighing because she hurts but then she just keeps on painting.

Our hope is that if nothing grows in the blood cultures and the fevers stay away (she is eating and drinking well) that she can go home on whatever antibiotics. She always does so much better at home. I never try to rush her to be released though. I do leave that up to the doctors and nurses BUT I am always glad to get back home and all of us be home together.

We didn't do regular labs today but we did resend blood cultures.

Well, I better go. Katia has decided to "relax" for a bit so I need to move all her paints out of the way. I will take a picture of the fan when she is done painting it.

Love, Tracy




March 25, 2006 3:23 PM
WBC 8.04
HGB 11.6
PLT 395
ANC 6590


I feel like I am doing a play by play update here but I have been working on some prayer requests that had been sent to me plus I wanted to let you know Carlos Murillo has a new Caringbridge site up. Him and his sister will be working on it so you can drop in and welcome them to the CB Community.

Katia's fevers are continuing to go up and are now at 40.2 which is 104.4 so we are going to give her Tylenol and Motrin to try to get the fever down.

Her counts definitely show something is going on and they have been going up and up over the past few days (her WBC and ANC) which shows her body is trying to fight something.

I will be back later with an update hopefully saying the fever is going down. They are thinking she will continue with fevers over the next few days though so please pray we can find the source.

Love, Tracy







March 25, 2006 1:30 PM

Well, we are in and Katia is resting. We actually got right into her room and started her on IV antibiotics. She feels just lousy right now and her cheeks are all red and she is just sleepy. I feel so bad for henr when she feels bad. She apologized to me because I had to carry her from the car up to here and she knows I get a sore back. Poor baby. I told her, "You don't have to apologize." Then she said that I bounce her around a lot when I carry her so that it doesn't feel good to her either. At least she is still acting like herself.

We ran more blood cultures and a CBC as well as we will try to get some urine sent off and stools as soon as she makes that possible.

I always feel confident that we are in good hands here. They gave her Tylenol so hopefully that will break her fever.

We appreciate your prayers.

Love, Tracy









March 25, 2006 10:00 AM (I had the wrong date of the 24th)

I spoke to soon. We are headed in. She has a 39.6 temp which is 103.2 fahrenheit. Please pray for Katia because I really don't know what could be causing this and she feels REALLY bad!

Love, Tracy







March 25, 2006 8:45 AM

Good morning:)

We are home. I am still having Internet problems but now I am having phone problems too. They are together though since it is DSL and one company, shared phone line. I was on Broadband but to help finances, I switched to DSL. When it works, it is just as good but since it was switched our phone line seems to be crossed with other phone lines so it appears like someone is either always on our phone or there is just no signal. Irritating. They are supposed to have it fixed AGAIN by this morning so we will see.

Okay, enough about that (can you tell I am getting stressed about it).

Katia did go to clinic yesterday and she got her Pentostatin. Her spirits are much higher and she doesn't appear to be sick at all BUT she still had a fever of 37.8 when we got to clinic.

We were there the better part of the day and she was happy to have her port de-accessed when we were done. So, we get home and her temperature around 6PM was 36.8 (that is near normal and not a fever!) So, I started thinking what could have temperarily brought it up and thought maybe it was the Betadine used when her port was accessed. We normally don't use it due to her having problems with Betadine IF SHE HAS A FEVER. But, she didn't when we accessed the port so I said okay. I thought since the port was de-accessed and the tape removed, maybe that was the solution. BUT, this morning, 37.9 again. It doesn't seem to want to go above that though. Usually when Katia gets a fever, it only goes one direction, UP and we go in. She did start Augmentin Thursday evening (an antibiotic) so it may be helping whatever is causing the temperature. She doesn't want to be admitted so she gets upset when her head feels hot. She checks her head so much, I told her she is going to MAKE it hot.

Anyway, we will see how today goes. Nothing has grown in her blood cultures which is good but still just leaves a question? For the most part, we always end up with an answer if Katia gets sick. We may end up with an admit too but we get answers. No answers leaves me more concerned.

So, thank you for your prayers. Thank you for checking in. I will keep you posted. Pray this fever goes away and stays away:)

Love, Tracy










March 23, 2006 5:20 PM
WBC 5.96
HGB 11.2
PLT 429
ANC 3516

We are back home:)

Katia's temp arriving at clinic was 37.9 (celcius). The temperature for admit is basically 38.0. She did have a CT Scan of her sinuses (which have greatly improved and cleared up) and she had blood labs drawn as well as her regular CBC (blood counts). The way the CBC has bounced around shows something is going on since it changed so much just from one day to the next. Obviously her body is trying to fight something? Not sure what. The blood cultures should be back in the next 24-48 hours.

We are planning to go back to clinic in the morning for her dose of Pentostatin. Hopefully the cultures don't show something she would need to be admitted for and I pray her fever doesn't cross that fine line to 38.0.

I will update if we end up going in overnight or if something comes up.

I promised to share a picture with you of something Katia got to do yesterday (which she LOVED!)


Our neighbor has this for his little boy. Katia LOVED scooting around on this little bike. She was ALL smiles!!



Love, Tracy









March 23, 2006 11:17 AM

This prayer request is for Ms. Katia. She had a great afternoon yesterday but then her evening turned out to be bad. She just started up with a headache that is still there. She says her skin feels hot but she is actually clammy feeling and sweaty. She still is having low grade fevers. She has an appointment today for the Pentostatin but I am about to give them a call. I don't think she should get it while she is feeling so bad. I just have that feeling something is going on with her. She did finally eat dinner last night which was good. She said she didn't feel like it but she knew we wanted her to eat.

Today, she hasn't gotten out of bed and says she just feels really bad. She keeps falling back asleep and waking up. Normally she would be eager to get up, eat something and start her day. So, please pray for her. I will update after clinic.

Love, Tracy




*****************

March 22, 2006 12:50 PM (A few late add-ons near the bottom of this afternoon from 6PM)


WBC 4.43
HGB 12.0
PLT 513
ANC 1300
Creatinine 0.2



We are back from clinic.

I am a bit concerned due to some problems Katia has been having on and off. I didn't discuss them much today as we will be there longer tomorrow.

One concern is her skin seems to be getting red again. Hopefully the counts don't show an increase where GVHD is concerned. Her mouth appears a bit worse, not her lips but inside her cheeks and her tongue. The other thing is she keeps getting low grade fevers. Not enough for an admit but just enough to say something is up?

I actually came to update last night but Caringbridge was down at the time doing their maintenance.

There is also an update on Jerry and Estephany.

With this week being Spring Break and the girls being home, things get out of our normal schedule (however "normal" that may be) so I have been bad about updates and updating on others. Sorry. I have a few new prayer requests to post and some to update also. I will REALLY try to get to that this evening. I was up until 4:30 AM, just couldn't sleep, and I guess I could have worked on it some then.

Well, Katia is crying. She is having quite a bit of "butt pain" issues again to right now that just seem to come on suddenly. Her eye pain seems to be less frequent though.

Thank you for your prayers and your encouragment.



Love, Tracy

PS I just added the pics. The pictures on the front page are from today. Katia wanted to plant flowers? Well, she can't do real flowers due to her being so immunosuppressed BUT we had these silk flowers! She had tons of fun and NO MESS:) Silk flowers are a great way for us to add color around here. None of us are real "Green Thumbs anyway".

PSS- It is 6:00 PM but I wanted to add something else. Katia has had a really fabulous afternoon with Sharayah and Tatiana and "something" I will show a picture of tomorrow! She really had fun. It is nice to see her be able to get outside and enjoy the fresh air and Florida Sunshine a bit. I just wanted to jump on and add this little bit:) I will post the pictures from this afternoon on here tomorrow after clinic.






March 20, 2006 11:30 AM

First I would like to direct you to Jerry's Site for an update on his condition. He and your family very much appreciate your prayers.


How is Katia doing? Well things are up and down with Katia right now. I think the main thing would be her outburst. She is also having a much more pain in her bottom and her eye again. They seemed to be improving a bit, not gone but less need for pain medicines. Her activity level is down also. She did go play in her playhouse for a bit the other day but she was right back inside. It is getting warm outside though. I am trying to find out about getting a little portable AC Unit for her playhouse so she can enjoy it throughout the summer. Katia doesn't do any good in the sun or even heat as she starts itching and her skin gets little red patches. I didn't expect March to be this warm. A lot of Katia's ups and downs could be due to medicines and treatments of course. On a very good note, her eyes and lips are looking so much better these days as well as the skin on her hips. The Pentostatin and Cellcept seem to be at a good level for her right now to work against the GVHD. She has her next treatment this week.

The girls are home this week for Spring Break which is nice. Katia enjoys having them around. Her and Tatiana are going to do some "Arts and Crafts" thing today. I am not sure what it is going to be but I am sure it is going to be something cute:) Sharayah is working on something right now (a surprise) that I can't see yet? This week should be full of surprises:)

I also have a silent prayer request to ask of you. I post these periodically either to protect someone's privacy or a situation that can't really be shared. I want you to know that your prayers are so important even if you don't know the specifics. God knows the specifics and He knows each of our hearts.

I am sorry if this seems to be dragging on. I can't seem to catch my train of thought. Things have been in "hectic mode" here a bit also. Please pray for that. I am not going to get into everything but we appreciate your prayers:)

Lots of love, Tracy











March 19, 2006


We are having some internet issues at the moment. Sorry for the lack of updates but my connection keeps dropping. I will post ASAP. I have been getting your emails on my phone. I better cut this short before I get cut off...

Love, Tracy




*********

March 16, 2006 4:50 PM

Hello:)

Today has been a "Day of Reading" around here. Katia is really enjoying books so she is reading her books to me and she read her books to Myron when he got home from work. I am glad to see she is so eager with reading:)

We have also been working on her writing skills. Her hands get pretty shaky due to steroids but she likes to get things right so she is willing to practice. I am amazed at her ongoing efforts.

I am adding some new pics on the photo page of today around the house:)

Love, Tracy









March 15, 2006 6:20 PM

Please see the new prayer request above for Tyler.

Katia is doing well today. She did have classes and we plan to have classes again on Friday. She LOVES school and ADORES Ms. Michelle!

This was the ending of another 9 weeks so of course, she is eager to get her next school report card.

There are alot of Caringbridge families in need of prayers right now and encouragment. Thank you so much for keeping up with Katia and others. I am going to be changing some things around on Katia's CB page and www.ladybugkatia.com to try to help them load quicker. Also, I am trying to add more pics to the Yahoo albums. So, keep an eye out:)

Thank you so much for dropping by, your messages and your prayers:)

Love, Tracy








March 14, 2006 5:00 PM

WBC 5.1
HGB 12.0
PLT 312
ANC 3500

We are back from clinic. Those days are long but today was a bit different. We packed a tasty lunch to take and it made the day go by much quicker:)

Also, Katia did all her homework as well as a lot of extra stuff. She read through all the books she has learned and made a picture story. Usually there is a lot of boredom on her end at these long days but today she barely had time to play with her Gameboy.

She was also very happy to see her doctor back and she gave her a picture she had drawn for her.

Jerry has also had a good day which you can read more about on his page. Please keep praying for him as each day is a miracle.

I would like to ask a favor of each of you. Jerry's family has been through so much and I have an idea for some added encouragement. (THIS WOULD BE A SURPRISE) Carol (Jerry's wife) and their 8 year old triplets (Julia, Max and Robert) could really use some pick-me-up. I thought cards would be a great treat. They have no idea I am posting this. Cards can be written and addressed to them and mailed to the PO BOX below. I am going to try to collect cards over the next two weeks and present the cards to them. Cards can be made to one of them specifically or all of them. We all know how great it is to receive mail and I can definitely say Katia "LIGHTS UP" with her mail.

Carol Gomez (Jerry's wife)
Robert Gomez ( 8 year old child)
Julia Gomez ( 8 year old child)
Max Gomez ( 8 year old child)
PO BOX 22375
Tampa, FL 33622

Thanks so much for participating:)

Well I think I should get dinner going. On that note, Katia has gained most of her weight back that she had lost while she was sick. She is back up to 15.4kg which is almost 34 pounds. Seeing that she is 3'1" that is a decent weight for her:) She has been eating quite a bit more.

The doctors are setting her up an appointment with a Behavioral Specialist so that will probably be this upcoming week.

Okay, I was emailed a question which is a very good question so I thought I would put some information here about IGG levels and IVIG transfusions.

WHAT IS IGG?

IgG. IgG antibodies are found in all body fluids. They are the smallest but most abundant of the antibodies, normally comprising about 75o 80f all the antibodies in the body. IgG antibodies are considered the most important antibodies for fighting bacterial and viral infections.

IVIG TRANSFUSION (this is one of the reasons to donate blood and how it may be used)

Immune globulin is prepared from pooled plasma from 3000-10,000 healthy blood donors. In some instances, blood from as many as 100,000 donors is used. The entire array of variable (antigen-binding) regions of antibodies in normal serum is contained in IVIG. The large number of donors in the pool increases the number of individual antibody activities in the preparation but risks diluting any useful rare activity. Thus, IVIG has the full array of immune antibodies directed compared with nonhost antigens. The large number of donors makes contamination by viruses more possible, but this is rare.

Hopefully this helps to clarify these questions:)

Thanks so much for stopping by:) Also, check out picture 2 in Katia's CB Photos


Love, Tracy

PS This picture is Katia saying, "HELLO"


March 14, 2006






March 13, 2006 9:00 PM

Wow, this is a late update...

All is okay here. We are off to clinic for the day tomorrow to get Katia's IVIG transfusion.

Today was busy with a few projects around the house and "trying" to get Katia's homework done with her. We didn't accomplish too much on that project.

She is VERY eager to see her doctor that was out on materinity leave for the past few visits. She drew a picture and everything:) She has grown to really love her doctors and nurses. They are a HUGE part of her life and our lives. I am very very thankful for the team we have.

Well, I promise a better update tomorrow following clinic:)

Love, Tracy










March 12, 2006 6:45 PM

Good day... evening:)

As you can see by the top photo, Katia got out to the park today. In the Photo Album you can see more pictures. She had a lot of fun for about the first 5 minutes and then she was ready to leave. It was quite warm out today and the sun is hard on her. She had her jacket on to protect her skin but she still gets pretty heated and tired. She did swing, slide and even kick a ball around a bit. She found a few "shells" (rocks) that she thought were pretty. All in all it was a nice, short change of scenery though.

Katia has been having quite a few "mood swings" lately and they seem to be getting more and more. She doesn't like them and she says she doesn't like them because, "they make her look like a cry baby" so we have been trying to figure out what is bringing these about. It could very well be medicines and treatments. As I type, she just went and closed herself in her room because of something? She would rather do that than to burst out in tears in front of her older sisters. She is down to 3mg of steroids a day which is next to nothing so I don't believe it is that. We have been through the "steroid temper" before with her. Anyway, I have discussed with her doctors so we will look more into it. She should be able to have both days of school this week and she really looks forward to that. The last few weeks she has missed quite a bit of school and hadn't been feeling well but she is pretty well over her cold and this week should only consist of one clinic visit, Tuesday all day, for IVIG. Hopefully that will get her ready to face the rest of the week and she will be feeling well.

We went out to a car show for a bit yesterday and she really likes looking at the different cars. Someone made her a dog out of a balloon and she has now adopted that as her "favorite pet". She just found out he is deflating... His tail is not as big and round as it once was. Her first idea was trash him and get upset and go to her room. I told her he still looked good and she could play some more with him. Her second idea is that I am supposed to fix it:)

Never a boring moment:)

Well, I hope everyone had a nice weekend. Please keep Carlos in your prayers as he hasn't yet achieved remission and this is becoming concerning. Keep Jerry in your prayers that his upcoming scans (sometime this week) will show the PML hasn't progressed anymore and remained stable and hopefully the can start weaning the meds that are keeping him so groggy.

Always, thank you for your ongoing prayers for Katia and our family.

Lots of love, Tracy












March 10, 2006 9:30 PM

IGG Level 463



Late, yes I know:)

Everything went well at clinic. Things just drag out on those days but the good thing is, she got her treatment on time thanks to her counts being good:) No complaints here.

When we have Pentostatin or IVIG (which she will get next Tuesday due to low IGG level), we come home in the middle of traffic. Today, we had to do 2 detours due to traffic accidents. You can only imagine how happy we are to pull into our street:)

Katia did well today. We took our own snacks so she didn't have cookies and stuff there. Her sugar still is going up at times so I try to watch more of what she eats and at what times.

I added some new pics on Estephany's site and Jerry's site was updated. We also saw Carlos at clinic today. He has been having headaches in the back of his head and appears to be coming down with a cold and cough also. Please keep him in your prayers. We didn't get to see them again before we left so hopefully we can find out how he is doing tomorrow.

Katia's IGG level was low at 463 so she will go in on Tuesday for the IVIG transfusion. That is the 5-6 hour day so we pack for that day:) It ends up taking more time due to meds before and after the infusion but when we plan around it, it goes by quicker.

Katia and the girls are in Sharayah's room watching HARRY POTTER! They love those movies and Katia is so excited for a "Girls' Night" with her big sisters. Anything she can do past her normal bedtime is just GREAT since she is a 6 year old.

When we were driving home today, she was asleep part of the way in her car seat. I just look at her and she is so small and fragile looking. It just really makes me see how lucky we are to have Katia with us today. She has been through so much and her body, even being so small, has really toughed through a lot of medicines, chemos, surgeries, radiations, transplant, pain, transfusions and it just stays so strong in the big picture of things. As we were crossing the bridge today, I always remember how long it was that we didn't cross that bridge back when she relapsed (336 days to be exact) till when she came back home after transplant. I am so grateful for so many things. She just slept there, so pretty and holding on to a little toy car she had gotten from clinic. Although she is 6 (and she thinks she is a big girl), she is my baby and she loves when I tell her she is my baby. She wants to be a "big girl" to others but she always tells Myron and I that she is our BABY!! She is so right and we are so grateful for her being in our life.

Her belly gets pretty upset after Pentostatin doses (for about 3 days) but she has her Zofran and we plan to try to have a good weekend and spend some time outside. The biggest improvement with her GVHD is her lips. They look GREAT!! Her eyes are about the same as they get better and worse with treatment times. Her hips appear the same, her knees a tad bit better and her fingers are about the same (they change from day to day). I will say the Pentostatin does seem to help her but once the two weeks is passed, she definitely shows that her body depends on the doses. As long as she stays out of the sun, her overall skin appearance seems to improve but if she gets in the sun or the heat for a bit, she shows it the next few days. It is nice here in the evenings though to get outside for a bit. Her plans tomorrow? HER PLAYHOUSE!! She wants to put some posters up out there so they are going to "come up with a plan" to decorate with posters.

Well, it is late so I am babbling:)

Have a good weekend,

Tracy








March 9, 2006 3:30 PM

WBC 5.1
HGB 12.7
PLT 449
ANC 2470
FK506 9.5
Creatinine 0.2
Creatinine Clearance 197.9


Nothing out of the normal in the labs today:) Everything went well so we will go back tomorrow for the next dose of Pentostatin. We may do a back x-ray to see why her back may be hurting. Since she has weakened bones in the area, we don't want there to be a problem we don't know about. It could just be she has pulled something so we may just keep an eye on that also.

On another note, for those that live around here, today's weather is the way I wish it was YEAR ROUND!! This is perfect!! For those of you in colder areas, I send you SUNSHINE!! Maybe the sunshines warmth will reach you and bring you into Spring!

This afternoon, Myron and I plan to go visit with Jerry at the hospital. I am eager to see him. Katia likes to send over pictures that she colors for Jerry. She really likes him, prays for him and always ask about how he is doing.

I also have a prayer request for you. I was emailed about a 31 year old woman that had recently been diagnosed with Stage 3 Breast Cancer (in February). Just yesterday she found out the cancer has spread to her bones (skull and spine) and she has moved to Stage 4. Stage 3 was considered curable but Stage 4 isn't, but it is treatable. She will be seeking a second opinion also but please pray for her treatments to lead her to her cure. Breast cancer effects so many and has included close members of my own family. I am a big believer in breast exams and mammograms. I just recently had mine done (had to go back for a few magnified views and tests) and got the "All Clear" last week. I had a breast biopsy done back in 2002 due to an "area of concern" which was benign and now I have mammograms each year. Please pray for this woman and as I get further information, I will post it in the journal.

Love, Tracy



************

March 8, 2006 10:30 AM

Katia is eagerly awaiting Ms. Michelle to show for school to start:) I am glad she is feeling better. Her nose is still runny but compared to last week, MUCH BETTER!

She even practiced her reading so she could be ready to show Ms. Michelle her book.

Her face is fine, her lip is fine. There is no trace of yesterday's fall at all! Can you believe that?

She has been having a LOT of bruising on her legs which I am going to bring up at clinic. It looks like she crawls and climbs all day and really, she should have no reason for the bruises. She has had problems with that before and her platelets and clotting factors are always fine so? Not sure why but it is concerning to me. We had that problem before relapse, so much I was tracking it by taking pictures for some of you that remember that.

Please keep Kody in your prayers today as he goes to his doctor visit. Hopefully he can get an MRI done today also to make sure things are still stable with him.

I am also asking you to pray for a "silent prayer request". I have mentioned those on here before. I appreciate it greatly.

I will let you know how Katia's school day goes:)

Love, Tracy











March 7, 2006 2:00 PM

As I type, Katia is eating a tortilla with cheese and watching Nick Jr.

We have had a busy morning around here cleaning carpets. Katia had a bit of an accident last night so... well it is all done now:)

She was settling down to eat her lunch but she wanted to get her drink off the dining room table (this was about 30 minutes ago now). I was in the kitchen and she walked right behind me to go to the table and then BAMM!! Somehow she fell and hit her face on the tile! Don't cringe too much. She did bust the inside of her bottom lip but not as bad as you would think. Her teeth are fine and her nose and face are untouched. I have to say an angel caught that fall because I couldn't move quick enough and she is barely hurt. She will shake this off in the next hour or so and be back to normal. I had to share that because I always ask you to pray for this and that and other people but prayers aren't just for a moment or a certain situation. I think prayers are always with us. I know God is always with us and more times than just a few, that has been proven over and over to me. Katia went and looked in the mirror (probably expecting to see more blood and signs of her fall than she did see) and she just looked at me and said, "I AM OKAY!" I was shocked too. She did have to put a cloth with ice on her lip though but still, we know it could have been much worse. Falling on tile is no game. Remember, this all started with Katia 4 years ago when she fell and hit her head on a bed frame. We take falls very seriously.

So, thank you for your prayers of protection:)

Well Katia is calling me (she doesn't dare get up and come through the kitchen right now) so I better go. She has something special to tell me.. HUM?

Love, Tracy








March 6, 2006 4:00 PM


Katia's NOSE is feeling much better:)

She is happy about having to use less tissues... still some, but less.

Hopefully she will have class one day this week. Today she seems like she would be up for a Wednesday class and clinic was moved from Wednesday and Thursday to Thursday and Friday so... we will see. Her homework is done and she is ready to move forward!

She was coloring today (her coloring is really improving!) and she came and asked me to spend some "Katia time" with her. So, of course we did:) I don't know if we did EVERYTHING she wanted to do but she had me all to herself. No phone, computer, TV, just Katia and Mommy time. I had fun coloring pictures that she was picking out and then she would do the same for me.

She talks about 100 MPH when she knows I am listening so she went on and on and on. She would be really great in journalism some day:)

I am looking forward to checking Katia's kidney levels again. It hasn't been done for a few weeks now (not the blood check but the checking via urine) and I am interested to see how she is doing. I THINK she is drinking enough but we will see if she is where she needs to be and where we would like her to be.

Her eyes are still a big problem for her but I think it isn't as often right now. It is hard to tell because when her eyes hurt, it kind of blurs things in remembering when they do and don't hurt. I KNOW she is asking for less medicine though.

Her tongue looks somewhat worse this last week but it seems to do that before the next Pentostatin dose sometimes. She isn't complaining much about it. I asked her what she wanted for lunch and she wanted a Tortilla with cheese and turkey. I had some left over spaghetti I thought may interest her. She said, "NO". I asked her if her mouth was sore and she said, "Yeh but I can deal with it..." and just went about like nothing. I felt so bad for her. I know she does put up with a lot and she doesn't like to see me feel bad even if it is because SHE feels bad.

Well, that sums things up right now.

Thank you so much for each of you keeping up with our friends, especially Jerry (who is still improving-check his site) and Estephany who is doing well. Carlos has a lot ahead of him still and transplant coming up but he so much appreciates prayers and people going by his site also. There will be some new pics up there in the next day or so. Also, please remember Emily L. as they are hoping to leave to St. Jude soon and have her bone marrow transplant at the end of this month. Remember Kody who has his upcoming Dr. visit to check on why he is again having "episodes". Each of these are in the Prayer Requests area above.

Love, Tracy:)










March 5, 2006 10:20 AM




2 MILLION HITS! THANK YOU!





Yesterday, Myron and I went to visit with Carlos Murillo and his family. Carlos is home right now. What a great young man, the whole family, WOW!

His sister, Maria, is going to be working on opening a Caringbridge site for him. We signed onto his website at his house and they were surprised how many people had come to visit his site already. I told him so many people are already praying for him, each day through his treatments, etc. They had a HUGE answer to prayer in the fact that Carlos has 2 matching cord bloods to use for his transplant. They are still very new into this but are trying to learn, each day how they can help Carlos through each step of the way and also to help others understand about bone marrow registeration, donating cord blood, etc.

Carlos said before he was diagnosed (he just turned 18 on January 21) that his mind was centered around him being with his friends but now, he sees the importance of family. A lot of his friends have just disappeared but his family is right by his side with love and patience.

The Katia Solomon Foundation has been able to offer help to them both in guidance and financially. The more the Foundation grows the more we can help families like the Murillo Family. Just recently KSF gained its 501(c)(3) status.

How is Ms. Katia you ask? Well, her nose is healing nicely. One thing you can't see in the picture above is how irritated Katia's nose is (thanks to photo fixing). She has a RED nose with a big red mark across her left cheek. The mark looks like someone took a fat red marker and just drew a big line about 3 inches on her cheek. It is bright bright red. She feels so bad about it and it is so sore. Well today, it seems to be going away somewhat. I have had medication on it for 2 days and since she has stopped wiping her nose so much, it seems to be healing. She hated the way it looked. She also has a lot of bruising on her shins right now, much more than she has had in a long time. Her platelets have been fine but Pentostatin can cause bruising as well as steroids so... hopefully it will clear up and stay under control.

Katia goes to clinic Wednesday and Thursday this week. She is due to do a Creatinine Clearance tests (24 hour urine collection) to check the function of her kidney. She has to bring in more stools, urine for sugar and do her regular labs. Then on Thursday will be the next dose of Pentostatin. We aren't sure if the Pentostatin is having anything to do with her sugar levels but they have continued to spike up at times and then other times, they are okay. Her A1C test came back good which means this has not been going on for the last 3 months, it is a newer occurance. That is good to know. We just need to find out what is causing it and treat her accordingly.

Well, again thank you so much for reading this and checking in on Katia as well as those listed as prayer requests. I have a few more to add on the requests soon and in the drop down menus. Please remember Kody as he has an appointment on Wednesday due to recent episodes he has been having. He should be having an MRI to check the status of his tumor. Please pray things are remaining stable with him.

Katia says to tell you, she just took ALL her medicine and that she is wearing one pigtail in the top of her hair today:) She likes the fact her pigtails are longer now:)

Love, Tracy




******

March 3, 2006 10:30 AM

Please pray for the family of Angel Dakota H. as he passed away yesterday morning, March 2nd. He had been fighting leukemia AML since December 2002 and struggled a lot with GVHD.

Katia seems to be improving from her cold, at least the runny nose portion of it. Her cough is still quite bad but I think that should clear up over the weekend so she can start feeling better again. We all feel so bad for her when she is stuffy and coughing. She gets so puny looking and you just want to hug and love her:)

I have had a few emails about 2 other matters so I figured it would be easier to just mention it on here. Periodically there are "advertisements" popping up in Katia's guestbook, like mortgage links mainly. Do not click on those links! I delete them as soon as I see them but if you do see them there, just don't click. I don't know who would do that but I am not going to let it become a problem. I try to handle it more in "stride" and just delete them.

Another thing is leaving your email address in the guestbook. You can chose to not "show" your email address and I personally recommend you chose that option. Addresses tend to get collected and used causing junk mail. And, on the same note, if you get an email from "ME" (which isn't too normal in itself), if it looks like an advertisement or something, it isn't from me. If you have a question, then you can email me before you open it.

I do usually try to respond to emails sent to me but, very rarely, do I send out a spontaneous email.

This is just all part of the "Internet" and just protecting yourself and your information. I say the least amount of info is the best.

Okay, enough of that:) I am not going to move this part of the entry to the journal history so it will disappear. I like to keep Katia's page and guestbook just about her, treatment information and others we are praying for.

For those of you awaiting your bracelets, they went off in today's mail. Sorry for the delay. Although I hate to give excuses, things have just been a little hectic but they are on their way:)

Katia's sugar was getting high again last night? I am thinking this is being caused by a medicine of hers so I am trying to check her sugar around her medication times to see. She is going to see an Endo Doc as soon as the appointment is lined up. She needs to see them anyway so it will be a good chance to get answers to a few other concerns.

Well, that is about it for now. I will be back later today with some other updates and lab results from her A1C test.

Lots of love, Tracy










March 2, 2006 6:39 PM

Katia's cold continues to drive her crazy. Hopefully this will be on its way out by the weekend. Her nose is just as red as Rudolph and she has a big red area on her cheek from wiping her nose so much. It looks just pitiful and I want her to feel better like yesterday.

HOWEVER, she is eating better and drinking better. She has done quite well today and is pacing around here waiting for dinner right now. "The best thing to do is feed a cold." Right?

The Katia Solomon Foundation is now working with a new family.

Carlos Murillo was diagnosed with leukemia AML/ALL in January 2006. You can learn more about him, follow his progress and see pictures via his website. There is also a guestbook he and his family can be checking and I am sure your encouragement will just mean the world to them!!

Thank you so much for your prayers always. I have to share with you the last few pictures Katia has drawn. One she left at clinic but it was a picture of her nose running away and it had 2 germs inside of it! Funny, huh? Another one was a picture of herself. Her face was all red because it was HOT! Another picture was a picture of a little tiny Katia with this great big cup. Guess what was in the cup? MEDICINE. She hates cold medicine! The one she has now is orange flavored. She actually likes it but just hates the thought of having to take it on top of what she already has to take.

I had to share those with you. Maybe I will try to get her to draw another one to scan in. She shows me these pictures and then they disappear or get left at clinic.

Lots of love,

Tracy

PS Katia's urine test from yesterday showed no signs of sugar:)










March 1, 2006 6:40 PM

WBC 5.15
HGB 13.2
PLT 419
ANC 2640
Creatinine 0.4 (0.2 is what we like to see)

Hello:)

Poor little Katia is still feeling about the same BUT being the little 6 year old that she is and being, KATIA, she is trying her best to not let it get her down. She is laying down coloring right now and waiting for some CHICKEN SOUP.

She did get her IV fluids today, her labs, her throat and nose cultures (she hates those) as well as another urine test to check for sugar. The last test came back with a level of 250 and really no sugar should show up in her urine. So, we will see. We have been trying to figure out if one of her meds can be causing this but really she has been on everything for so long already, nothing is really new?

As far as Katia's counts? Well everything is in the "normal" range but not "Katia's normals" so it seems there is something going on causing her to get these fevers. She is playing around with one right now again tonight. In the day, it is fine though. I feel there is something viral going on causing her counts (WBC and ANC) to go up so hopefully her body can fight this off on its own. That would be just great!

Her Creatinine is her Kidney functions and if it gets up to around 0.5 she can't have her Pentostatin usually so we need that to get back down to 0.2 or 0.3 at least. Since she is fighting a cold, she needs to drink double so that her kidneys can flush out the Pentostatin. Hopefully today's fluids will give her kidneys a little break also.

I get a lot of emails asking, "Is it normal for Katia to be going through so much and still being on so many medications 2 years after transplant?" Well, I don't think there is a "normal" really. Everyone is different. Katia had a good transplant and remains leukemia free. We could have lost her. We are grateful to have her and will do whatever we can to keep her progressing along. No matter how many steps forward and back, she seems to be slowly progressing forward. Katia does very well with her medicines even when she feels so lousy. She also REALLY TRIES to not show that she feels lousy. If I could give Katia a GOLD MEDAL like in the Olympics, I would because she is one of the bravest little people/big people, anyone I have ever seen!

Another question is, "Why is Katia still receiving chemo?" Yes, Pentostatin is a type of chemo. It is mainly used to treat hairy cell leukemia. BUT, in her case it is being used to keep the Graft Vs. Host Disease under control and although it hasn't totally proven itself to me, it does seem to help a lot. The Pentostatin's job is to mainly go in and wipe out the lymphosites and we do see that it does that. It also effects the WBC and Neutrophil counts which of course keeps her immune system low. I say all of this to answer the third question, "Why do Katia's Counts bounce up and down so much?" This is due to the fact that Katia is still receiving a few "IMMUNOSUPPRESSING" type of drugs. The idea is that if we don't allow her immune system to just "rev up" then we can hold back her body trying so hard to fight the new marrow ("Graft vs. Host Disease").

You see, all of this is a HUGE balancing act really. We want the good immune system to come in so Katia can stay healthy, go places, eat what she wants, etc. BUT, her immune system can really mess up the ability of her new marrow building slowly the way it seems to need to. So, we give a little and take a lot right now from her.

The big goal right now is to be able to hold back the GVHD and continue the wean of steroids. Steroids have already damaged Katia in a few ways, the main way being bone density loss. Katia is not your typical 6 year old bouncing off the walls, running, jumping, etc. She can't run, she really can't jump and she has to be careful taking steps up and down stairs. She takes things slow but she continues to build up strength, slowly. She can't risk breaking a bone or hurting her hips and her legs and hips hurt when she tries something that her legs and hips really can't do right now. I can't remember seeing Katia run but I do look forward to seeing her run!!! I look forward to her running into a room, sweaty from being outside playing:)

We have seen so many people (both children and adults) not make it this far, no where near this far. I remember every person whose story I have followed. When I think of complaining, I think of one of them. I also think of people that are far past two years out and are still struggling and I know that we are in this for the "long haul" but I am grateful to be able to continue the fight.

YOU are a great reason that Katia is still progressing! Yes, YOU:) So many have prayed for Katia, sent her Happy Mail, gifts, emails, and the GUESTBOOK! You can't imagine how great the GUESTBOOK is!!! It is like HUGS just coming in from all over the world! It is like in a marathon run where all the people are on the sidelines cheering you on!!

The fact is, and I try to make this known on Katia's page, is it isn't just all about Katia. It is about ALL the people that have fought, are fighting and will fight this battle. So everything we do helps Katia, but it also helps others who may find themselves facing the same troubles. The medicines and treatments we try on a "study or trial" may help others in the long run. Someone who has followed Katia's story and then finds themselves in some type of "battle for life" may have found the strength they need to face each day, or to help a loved one fight the battle.

I appreciate questions and "No question is a stupid question" definitely is the TRUTH! You should hear some of the questions I come up with for Katia's doctors!

So, thank you for your prayers, your strength, your encouragement, your TIME, and just YOU:)

Love, Tracy








February 28, 2006 7:30 PM
2nd Update Today

Well, we are going in to clinic tomorrow to get some IV fluids and run some labs. I don't think Katia is drinking enough so I think it is best we help her out with some fluids so we don't have problems with her kidneys.

Katia is currently trying to eat some chicken noodle soup. That is one of the best medicines:) She did eat some chicken and rice at dinner so she is really trying.

Thank you so much for your prayers. I told her a lot of people were praying for her (and her red sore nose) and she just gave me the cutest smile and then wiped her nose again...

Lots of love (and tissues)
Tracy







February 28, 2006 3:47 PM

Katia is still about the same as last night BUT we have not gone anywhere. We are keeping a close eye on her. Her fevers haven't gotten up to the point she HAS to go in so we are praying that she can beat this cold and cough AND that there isn't anything else going on.

Onto some VERY good news!! I will get into more details once Myron tells me more. He went and visited with Jerry today and Jerry is improving! They started him on some anti-psychotic drugs a few days back to hopefully slow the progression of the PML. Well, it seems to be doing better than they had hoped. Jerry is more alert and able to move somewhat better than before. He is eating much better also! Isn't that awesome! So, PLEASE continue praying for Jerry's Miracle!! I will keep things posted here on his condition. Please see Jerry's Site for the rest of the update and some pictures from today's visit.

Please pray for/visit a new little girl, Samantha Lee that was just recently diagnosed. She is close to Katia's age and was just recently diagnosed with leukemia ALL. Let her know a little ladybug sent you:)




Love, Tracy








February 27, 2006 9:13 PM

I thought I would take a break from watching "The Bachelor" FINALE:)

I never updated today. To be honest, it has just been a day with Katia not feeling well, not wanting to eat, sleeping on and off and right now, she seems to be working on building a fever. I really hope it will just stop going up. She is sleeping right now but keeps waking up and looking at me (she is in bed with me). She knows what a fever means.

She has come down with a really nasty cold and cough and just feels crummy, to say the least. She did eat oatmeal this morning, a bit of chicken noodle soup and part of a sandwich later in the day. She says she is too tired and feels bad BUT she knows she has to eat or she will get nauseated from her meds. She is taking her medicines good which I am so very proud of her for doing.

If she isn't improving by tomorrow (and doesn't end up going in with fever tonight), I think it is best to take her tomorrow, check her for dehydration and run some labs of her sinuses and throat. The last few times we have been very lucky to catch things right before they would have caused her bigger problems. She HATES the thought of going to clinic because she knows they will swab her throat and nose and she hates that!

So, please please pray that she will just miraculously start feeling better and have a good day tomorrow. She isn't even playing at all today, not anything. She had some Barbies in bed with her but they just laid there and she just wants to be cuddled and comforted.

Well, I better get back in there. I don't want her to panic seeing me not there. She KNOWS I never go anywhere (unless I go to the store) but she really gets upset when I just am not there and I didn't tell her I was going to the kitchen or something... I guess she is so used to me ALWAYS being with her. I enjoy being with her.

I have some news on Jerry and Estephany but I will share that tomorrow. Plus a new family I will "introduce" you too that we are working with via The Katia Solomon Foundation. Very nice young man that has AML/ALL and will soon be having a bone marrow transplant.

Till tomorrow...

Love, Tracy



**************

February 26, 2006 1:20 PM

Hello:)

Sorry about no update yesterday. Things just were kind of dragging along and the day got away.

Katia's sugar has improved some but is still higher than it should be at times so we are going to do an A1C (Glycosylatd hemoglobin test) test the coming clinic visit just to see what is going on. This measures to see if the blood sugar levels have been high for a long time. I agree that is a good idea to do. Katia is a bit tired of having her finger poked but she would rather be able to do that at home instead of having to go to clinic. She also has a cough that won't leave her alone right now.

Some GREAT NEWS though! Estephany had her transplant! February 24 at 1:27 PM. She is doing really well. Myron talked to her last night and she sounded so great! She really appreciates everyone's prayers. Now they just have to wait to see her engraft and get her counts up and she will be released to the Ronald McDonald House.

I want to thank so many of you for continuing to check up on not only Katia but our prayer request. The other day I asked you to pray for 2 children. A little 6 year old girl and 2 year old boy. The little girl has lymphoma but no signs of cancer in her marrow. She had surgery to remove one mass from her neck and will have the same surgery again to remove another mass from her neck. She will soon be starting radiation. The little boy sadly did not make it through his surgery. This family is heartbroken for losing one of their children. Please keep them in your prayers and pray his big sister will continue to do well through her surgeries and treatments. I will continue to update on them as information becomes available to me. If they start a website, I will link you over there. Your prayers are most needed right now though.

Love, Tracy









February 24, 2006 6:00 PM

Sorry so late with today's update... things have been not so well today.

Katia just hasn't been feeling well and dragging around here most of today. It was a big thing to try to get her to eat something. Finally she gave in and had a bit of a breakfast and some lunch. She knows the importance of eating.

The labs are still out on the C-Diff, one is negative and 2 are pending so we will probably get news of that over the weekend.

Another concern is Katia had sugar in her urine. Usually sugar in the urine means it is too high in the blood so it gets taken out of the body through urine. I decided to check her blood sugar and it was up to 288. She hasn't been having a sugar problem recently so it concerned me as to why it was in her urine. I am going to check it again before dinner and in the morning when she hasn't eaten. The last time I checked, she hadn't eaten for about 4 hours and it was 266 so... not sure what is in store for this weekend. She is only on a small dose of steroids right now so she shouldn't be having sugar problems. Please keep this in your prayers. I will keep things posted on here if things change.

Also we found out that some of Katia's eye pain is being caused by the Pentostatin treatment she is getting for the GVHD which is also affecting her eyes. So, that kind of explains why things seem worse. Sometimes the effects of treatment are the same or worse than what it is treating. Since this is a trial drug for GVHD in pediatrics, we get news in on how others are reacting as the study continues.

Also, please keep Jerry in your prayers. Here is a recent St. Pete Times Article on him from today's newspaper. Things look very grim. I will try to update on him later or in the morning too when I speak to Carol.

Estephany has her transplant tomorrow so please pray all goes smoothly and she can be on her road to health:)

Love, Tracy











February 23, 2006 6:48 PM
WBC 3.74
HGB 13.7
PLT 444
ANC 1070
FK506 22.4 (very high)
IGG 541

We are back from clinic, long long day. I will update more on things tomorrow but I wanted to update on Katia's counts and let you know that Estephany's transplant date is set for THIS Saturday, the 25th of February!! Finally:)

Please pray for Katia as she isn't feeling well tonight. Her throat is bothering her, she is nauseated and just feeling crappy to say it nicely. A lot has to do with the Pentostatin dose but she just hasn't felt well lately. We did send off some labs today. Also, her kidney count has risen again, not as high as it was but rising. Please pray this number will drop back down. The Pentostatin is hard on the kidneys and it can't be given when the kidney count is raised. Last time we missed a Pentostatin dose due to kidney function, Katia's GVHD seemed to flare up. Her next dose is in 2 weeks.

Love, Tracy


PS Keep an eye out for the 2 million hit on the page. It is coming soon... (Can you believe it?)








February 22, 2006 5:39PM

Check out the CB Photos. The last one is three years ago! That brings back a lot of memories:)

Katia's appointment went okay today. One of her counts is way way off but I don't have the figures in front of me. I will post them after clinic tomorrow.

The picture of Katia at the top of the page is from today. She liked her green shirt so we decided to take a picture. Her eyes really are bothering her so I didn't use the flash. The little green star at the top was added in a program I use and she really really liked that, said she looks like a STAR!

Please pray for Katia as she really isn't herself and doesn't feel too good. She is missing school this week so she can rest up, have her appointments and try to get back to feeling strong. She has lost weight from 15.5 kg (34.1 lbs.) to 14.8 kg.(32.5 lbs.)which is quite bit for her.

She is sleeping a lot so she isn't eating as much and when she does eat, she is just picking at things. Of course, this makes her medicines bother her stomach more which makes her not want to eat much even more.

We go for the next dose of Pentostatin tomorrow. We went up on her cellcept dose as it appears the GVHD is spreading some so we are trying that first before increasing steroids.

I wasn't going to update today because I really like to keep things on the positive so I thought I would just wait till tomorrow.

BUT, on a positive note:)

She is playing with Tatiana right now in her castle tent and she is very eagerly awaiting dinner tonight. STIR FRY CHINESE:) She likes that!

Well, I just wanted to make a quick note on here.

Also, for Estephany, it appears she will have her bone marrow transplant not this Saturday but the next. I am sure they are eagerly awaiting that:)

Lots of love, Tracy







February 21, 2006 5:00 PM

Hello:)

I know so many of you are having horrible weather, cold, rainy, snowy, etc. but today here? BEAUTIFUL!!!

Katia has been feeling pretty yucky these last few days. She is quite tired all the time, eyes bothering her but mainly just worn out seeming. She is asleep as I type. So, today Myron took her out for a bit to go wash his car and go to a park. She was looking forward to it but didn't last very long. She came home and basically was cranky and tired so she flopped out.

We have clinic tomorrow and I am a bit concerned for her counts. They may or may not show why she has been so sleepy. She did finish her Flagyl for the C-Diff so we are supposed to take in another sample (presents for the lab always!) and see if she is cleared up from that. She certainly was happy to finish that medicine. It taste really bad!

So, please pray for her. I am really hoping her counts have improved, not dropped any further. But, the drop in her counts (or the rise sometimes) lets us know something is going on. It is our "warning sign" to sometimes run tests or think ahead of the game.

Thank you so very much for taking the time to stop by:)

Love, Tracy

PS I was emailed a prayer request for 2 children. The names are anonymous but the little girl is 6 and the little boy is 2. They have been diagnosed with cancer. Please keep them and their family in your prayers.



**************

February 20, 2006 12:04 PM

Hello:)

Today Katia's lips look quite a bit better:) That is great!

She is pretty low on energy lately but her skin overall seems to be improving. Hopefully her counts are the same or higher, not lower.

Her IGG level was at 549 which is okay. As long as she stays above 500.

She is standing here while I am typing. She wants me to let you know she knows how to make cookies:) I wonder how she will run this site when she is able to read, write and type. I think she will be much more interesting than me.

I want to thank so many of you for going by the sites listed above for prayer requests. I have some more to add and I am planning to update on Estephany and Jerry today. Estephany should have her transplant Friday. There was some delays but they were able to harvest what they needed from Sara. Estephany has a week of pre-transplant chemo and then she will receive sweet Sara's Marrow donation.

I want to get the full info as well as her hospital address and room, then it will be on her site.

I will be back later:) I have a 6 year old hanging on my arm which makes it hard to type as you can imagine. She is cute though!

Love, Tracy







February 18, 2006 8:30 PM

Hello:)

Katia has been kinda pooped out most of today so we decided to get some serious housecleaning done. I figured she would get a bit more spunky as the day went on but she didn't. Mostly just flopped out on the sofa, my bed or in her little castle tent. She says she is just tired and needs a rest.

Her eyes have seemed a bit better these last few days which is a great relief. I am not sure what is helping. Her fingers? About the same even with the new treatment. Her bottom? Seems a bit better also since she isn't going to the bathroom as often. I think the C-Diff was playing a big role in her "bottom issues".

I want to thank you for your prayers and let you know that they really do help. I find great comfort in knowing the prayers are being said and I am sure Katia benefits by them. How else would she get through as much as she goes through without prayers? There is no answer for that, other than prayers. Us too for that matter.

Well, I wanted to get on here and update and check on a few links and prayer requests.

Lots of love,

Tracy






February 17, 2006 1:20 PM

Good day:)

Katia just finished with her classes with Ms. Michelle. She missed Wednesday because she didn't feel well but today she did good for a bit and then got pooped out. She likes Ms. Michelle leaving her homework though so she will work on that between now and Tuesday (which includes another reading book).

Katia isn't her spunky little self today. She hasn't been as active these last few days. There are a few reasons behind this including her bottom and her eyes but some of it is just she poops out a bit easier right now. She did play with Tatiana in her castle tent yesteray and last night she seemed to have an abundance of energy for over an hour. She was all over the place (kind of like a typical six year old!)

I haven't had any news on Jerry yet today but I will keep it posted as I hear. He was scheduled to have his brain biopsy around 10:30 this morning assuming his platelets were okay. Since I haven't heard, I think they must have gone ahead with the surgery. I know Carol is just on pins and needles as she has been told, the surgery is very risky on Jerry and there is a substantial possibility of him not waking up from the surgery. Please stay posted as I will update ASAP when I hear any news.

Thank you for all your continued prayers for our friends. The prayer request above are going to be a bit different than before. I don't plan to keep an ongoing update, just the most recent. That way, I can manage to keep it more updated as needed. I feel like I have gotten behind quite a bit these last few months so I need to try to catch up.

I want to thank so many of your for sending Katia Valentine Cards and treats:) She really gets a kick out of mail (who wouldn't love Happy Mail) and it just makes it more apparent how important each of you are to Katia's ongoing progress and care. Thank you:)

Another happy bit of news is theKatia Solomon Foundation has acheived getting its 501 (c)(3) status which helps us greatly to grow and help more in need as well as expand on our ability to reach out with information and education. You can learn more at the KSF site.

Also, quite a few people have continued to keep up with and ask about updates on Estephany and when she will be admitted for transplant. Myron spoke with her daddy two days ago and they are hoping to have her admitted this Monday and move forward to transplant. Sara had to take injections to build up her marrow so she could have her marrow harvested for Estephany's transplant. As soon as I have an address and room #, I will post it on Estephany's Site. Thank you for your continued prayers for this family.

I am awaiting Katia's labs for her IGG level (immune system) and I will post it when it is available today. Remember, under 500 means she needs the IVIG transfusion. I am sure we are close to that as last check it was just over 500. That will be the 5 hour transfusion that helps build her immunity. The reason it continues to drop back off is due partially to the Pentostatin treatment she recieves. It has to knock down her immune system to help hold off the GVHD plus she remains on a few other drugs that supress the immune system. If we let her immune system come totally back, GVHD would just get out of hand so it is a balancing act basically.

Katia's Medlist includes the following;

FK506 (Prograf)
Septra
Prednisone
Acyclovir
Cellcept
Prevacid
Norvasc
Flagyl (Metronidazole)
Penicillin
Zyrtec
Tylenol with Codeine
Protopic
Voriconazole (VFend)
Benedryl
Calcium
Mulitiple Vitamin
Lorazepam
Restasis Eye Drops
IVIG Transfusion (as needed)
Pentostatin (bi-weekly transfusion)

Sounds like a lot (it is) but it keeps her moving along and on the road to recovery:)

Okay, that is enough info for now. Sometimes I feel like I hand out "Information Overload" so I have to pace myself:)

Love, Tracy


***********

February 16, 2006 1:15 PM

WBC 3.20
HGB 12.9
PLT 451
ANC 750
IGG (tomorrow)

Katia's ANC has dropped down more so we just have to be really careful with her and what she gets around (we always are anyway). Her platelets look great and her FK506 level is up to 14.6 which is much better. FK506 is one of her immunosuppressing drugs. This level needs to be good in order to help with the GVHD. It has been low but has been working its way up. Above 10 is good:)

We did start a new cream on Katia's fingers to see if that will help heal them. So, right now she has cream on along with her ladybug gardening gloves:) Quite stylish!




UPDATE ON JERRY FEBRUARY 16, 9AM

Jerry is scheduled for his brain biopsy today. First, his platelet count must reach 50,000 to lessen the risk of bleeding during surgery. He has been and will continue to recieve platelets to accomplish this. His blood counts will be checked throughout the day and when the platelets are acceptable, he will have his surgery. Therefore, there is no definite time as of yet.
Please pray for Jerry, his doctors, the surgeons, Carol, the children and just everyone involved today. This is a very risky surgery as well as a chance to find out exactly what is causing Jerry's symptoms. The prayer is that it is something more workable and with a better prognosis than PML.
Please check back to this site for any updates on the time of his surgery, Jerry's condition, and what is found through the surgery. Thank you so much for your prayers.

Please sign Jerry's GUESTBOOK as Carol does read these to Jerry and they mean so much to her as well. So many people are praying for Jerry around the world. Let him know a little "Ladybug" sent you his way:)


Love, Tracy



Add on: 1:20 PM

Jerry's platelets did get up to 65,000 but he needed to have an MRI which was done today. Therefore, his brain biopsy is now scheduled for 10:30 A.M. tomorrow on the 17th. They will again begin giving him platelets tomorrow around 4AM to prepare him for the procedure. They want his platelets above 50,000 but the higher the better for him.

Also, prayers are working. Jerry's spirits have greatly improved today. He appears to be smiling more and Carol says he got teary eyed when she told him of the prayer service last night and the candle lighting vigil. He does understand what is going on. He just isn't able to speak.

There was an article in today's St. Pete Times about last night's service.


Feb. 16, 2006 ST. PETE TIMES ARTICLE ON PRAYER SERVICE

I will update more during the day on Jerry if things change.


Love, Tracy










UPDATE ON JERRY FEBRUARY 15, 2006
Jerry has begun a new treatment to try to fight the PML. This treatment is done by chemo drugs and is very aggressive and extremely hard on Jerry. His counts have already bottomed out which again, leaves him prone to infections. This is the only known treatment for PML and even so, this is not always done because of the severity of aggression.
The brain biopsy has been moved up from the 20th to the 16th. The hope is for the doctors to find answers to Jerry's condition that are more promising than the PML. PML is devastating. Please pray for the surgeons doing this surgery, the doctors and for Jerry and his family. There are many decisions to be made in just a little bit of time. Please pray for hope and for a miracle.

Today is also Robert, Max, and Julia's birthday. They are 8 years old today. Please pray for them to somehow find a good day in this. I am sure they will appreciate seeing the prayer service for their daddy, knowing so many many people care for Jerry and them.

Love, Tracy





February 13, 2006 7:41 PM

Hello:)

Well I promised some new pictures and we have been working on that. Katia had her ladybug shirt on today so of course I had to get some pics. She loves this shirt! She tells everyone, "I got it in the mail!" It says, "Red Bug Elementary".

As far as an update on Katia, she is doing well. She is still having GVHD issues which we hoped to see improving. Sometimes I think it is and then other times it looks worse. Today she woke up and her "bird finger" on her right hand wouldn't bend? We do know that the GVHD can cause the skin to harden so that was my first concern. But, tonight it seems a bit better. Her fingers just look so bad to me but I think they hurt me worse than they hurt her. As a mom, I just want to see her feeling good and know that she is happy:) I would like to say, "Healthy and Happy" but we are headed there.

By now, I am sure you have read the updates on Jerry. That has been what our minds have been on these past few days. It is just difficult. We are very close with Jerry, Carol and their three kids. The kids' birthday is in 2 days and they will be turning 8. I just can't imagine their mix of emotions.

I know how much each of their family appreciates each day. I know because we feel the same way with our day to day living. Katia's treatment could have gone and still go in any direction. I always try to stay on the positive side of things and I know Katia is about the most upbeat child I have ever met. We all believe in the power of prayer and we all believe in miracles.

The other day, in an interview, I was asked, "Did you ever think Katia wouldn't survive this?" Well, I definitely know the statistics and we weren't given high hopes in the beginning. In fact, our hopes were pretty well dashed away from us. BUT, I did know that we would do whatever it took and from the beginning, I made up my mind I would never let my emotions get in the way of Katia just being a baby and now a little girl. I can honestly say, Katia is a happy little girl. That makes me happy, all of us! She goes through a lot but then (this may sound sad) but she doesn't know any different. We never give her that feeling of being different in a bad way. I think she realizes not everyone gets "new blood" and she definitely knows everyone doesn't take the pile of pills she takes but for the most part, she just gets up each morning to be Katia:)

I say all of that to say this. When we see things going on in others' lives, like Jerry, stories on the news of missing children or other horrible stories, I think it just makes us even more determined to make a difference in this world and to do what we can to possibly make somebodies life better. But, first and foremost, we want to see Katia get through this and be able to tell her own story. We can tell her one thing, she has already made a HUGE difference in our lives!

Love, Tracy










February 13, 2006 9:30 AM

PLEASE PRAY WITH US FOR JERRY GOMEZ

THERE ARE TWO UPCOMING PRAYER SERVICES BEING HELD. THE FIRST IS:
WEDNESDAY, FEBRUARY 15 AT 6:00PM
PALMA CEIA PRESBYTERIAN CHURCH
3501 SAN JOSE ST.
TAMPA, FL 33629

THIS IS ALSO THE TRIPLET'S BIRTHDAYS. ROBERT, MAX, AND JULIA WILL BE TURNING 8 YEARS OLD. OUR PRAYERS ARE FOR A MIRACLE FOR THEIR DADDY THAT HE MAY RETURN HOME TO BE WITH HIS FAMILY WHO NEEDS HIM SO BADLY.

THE NEXT SERVICE IS A CANDLE LIGHT VIGIL AT:
MOFFITT CANCER CENTER
OFF BRUCE B DOWNS
SUNDAY, FEBRUARY 19 AT 6:00 PM

THIS WILL BE THE NIGHT BEFORE JERRY'S BRAIN BIOPSY. THIS SHOULD LAST ABOUT 45 MINUTES OR SO.

PLEASE COME JOIN US IF YOU CAN. IF YOU CANNOT WE ARE ASKING THAT YOU LIGHT A CANDLE AND/OR PRAY DURING THESE TIMES WHEREVER YOU MAY BE.

PLEASE KEEP POSTED VIA THIS SITE FOR ANY TIME CHANGES OR CHANGES IN JERRY'S CONDITION. IF YOU ARE NOT AWARE OF THE RECENT CHANGES IN JERRY'S CONDITION, PLEASE VISIT JOURNAL HISTORY OR JERRY'S SITE


Love, Tracy


***********

February 16, 2006 1:15 PM

WBC 3.20
HGB 12.9
PLT 451
ANC 750
IGG (tomorrow)

Katia's ANC has dropped down more so we just have to be really careful with her and what she gets around (we always are anyway). Her platelets look great and her FK506 level is up to 14.6 which is much better. FK506 is one of her immunosuppressing drugs. This level needs to be good in order to help with the GVHD. It has been low but has been working its way up. Above 10 is good:)

We did start a new cream on Katia's fingers to see if that will help heal them. So, right now she has cream on along with her ladybug gardening gloves:) Quite stylish!




UPDATE ON JERRY FEBRUARY 16, 9AM

Jerry is scheduled for his brain biopsy today. First, his platelet count must reach 50,000 to lessen the risk of bleeding during surgery. He has been and will continue to recieve platelets to accomplish this. His blood counts will be checked throughout the day and when the platelets are acceptable, he will have his surgery. Therefore, there is no definite time as of yet.
Please pray for Jerry, his doctors, the surgeons, Carol, the children and just everyone involved today. This is a very risky surgery as well as a chance to find out exactly what is causing Jerry's symptoms. The prayer is that it is something more workable and with a better prognosis than PML.
Please check back to this site for any updates on the time of his surgery, Jerry's condition, and what is found through the surgery. Thank you so much for your prayers.

Please sign Jerry's GUESTBOOK as Carol does read these to Jerry and they mean so much to her as well. So many people are praying for Jerry around the world. Let him know a little "Ladybug" sent you his way:)


Love, Tracy



Add on: 1:20 PM

Jerry's platelets did get up to 65,000 but he needed to have an MRI which was done today. Therefore, his brain biopsy is now scheduled for 10:30 A.M. tomorrow on the 17th. They will again begin giving him platelets tomorrow around 4AM to prepare him for the procedure. They want his platelets above 50,000 but the higher the better for him.

Also, prayers are working. Jerry's spirits have greatly improved today. He appears to be smiling more and Carol says he got teary eyed when she told him of the prayer service last night and the candle lighting vigil. He does understand what is going on. He just isn't able to speak.

There was an article in today's St. Pete Times about last night's service.


Feb. 16, 2006 ST. PETE TIMES ARTICLE ON PRAYER SERVICE

I will update more during the day on Jerry if things change.


Love, Tracy










UPDATE ON JERRY FEBRUARY 15, 2006
Jerry has begun a new treatment to try to fight the PML. This treatment is done by chemo drugs and is very aggressive and extremely hard on Jerry. His counts have already bottomed out which again, leaves him prone to infections. This is the only known treatment for PML and even so, this is not always done because of the severity of aggression.
The brain biopsy has been moved up from the 20th to the 16th. The hope is for the doctors to find answers to Jerry's condition that are more promising than the PML. PML is devastating. Please pray for the surgeons doing this surgery, the doctors and for Jerry and his family. There are many decisions to be made in just a little bit of time. Please pray for hope and for a miracle.

Today is also Robert, Max, and Julia's birthday. They are 8 years old today. Please pray for them to somehow find a good day in this. I am sure they will appreciate seeing the prayer service for their daddy, knowing so many many people care for Jerry and them.

Love, Tracy





February 13, 2006 7:41 PM

Hello:)

Well I promised some new pictures and we have been working on that. Katia had her ladybug shirt on today so of course I had to get some pics. She loves this shirt! She tells everyone, "I got it in the mail!" It says, "Red Bug Elementary".

As far as an update on Katia, she is doing well. She is still having GVHD issues which we hoped to see improving. Sometimes I think it is and then other times it looks worse. Today she woke up and her "bird finger" on her right hand wouldn't bend? We do know that the GVHD can cause the skin to harden so that was my first concern. But, tonight it seems a bit better. Her fingers just look so bad to me but I think they hurt me worse than they hurt her. As a mom, I just want to see her feeling good and know that she is happy:) I would like to say, "Healthy and Happy" but we are headed there.

By now, I am sure you have read the updates on Jerry. That has been what our minds have been on these past few days. It is just difficult. We are very close with Jerry, Carol and their three kids. The kids' birthday is in 2 days and they will be turning 8. I just can't imagine their mix of emotions.

I know how much each of their family appreciates each day. I know because we feel the same way with our day to day living. Katia's treatment could have gone and still go in any direction. I always try to stay on the positive side of things and I know Katia is about the most upbeat child I have ever met. We all believe in the power of prayer and we all believe in miracles.

The other day, in an interview, I was asked, "Did you ever think Katia wouldn't survive this?" Well, I definitely know the statistics and we weren't given high hopes in the beginning. In fact, our hopes were pretty well dashed away from us. BUT, I did know that we would do whatever it took and from the beginning, I made up my mind I would never let my emotions get in the way of Katia just being a baby and now a little girl. I can honestly say, Katia is a happy little girl. That makes me happy, all of us! She goes through a lot but then (this may sound sad) but she doesn't know any different. We never give her that feeling of being different in a bad way. I think she realizes not everyone gets "new blood" and she definitely knows everyone doesn't take the pile of pills she takes but for the most part, she just gets up each morning to be Katia:)

I say all of that to say this. When we see things going on in others' lives, like Jerry, stories on the news of missing children or other horrible stories, I think it just makes us even more determined to make a difference in this world and to do what we can to possibly make somebodies life better. But, first and foremost, we want to see Katia get through this and be able to tell her own story. We can tell her one thing, she has already made a HUGE difference in our lives!

Love, Tracy










February 13, 2006 9:30 AM

PLEASE PRAY WITH US FOR JERRY GOMEZ

THERE ARE TWO UPCOMING PRAYER SERVICES BEING HELD. THE FIRST IS:
WEDNESDAY, FEBRUARY 15 AT 6:00PM
PALMA CEIA PRESBYTERIAN CHURCH
3501 SAN JOSE ST.
TAMPA, FL 33629

THIS IS ALSO THE TRIPLET'S BIRTHDAYS. ROBERT, MAX, AND JULIA WILL BE TURNING 8 YEARS OLD. OUR PRAYERS ARE FOR A MIRACLE FOR THEIR DADDY THAT HE MAY RETURN HOME TO BE WITH HIS FAMILY WHO NEEDS HIM SO BADLY.

THE NEXT SERVICE IS A CANDLE LIGHT VIGIL AT:
MOFFITT CANCER CENTER
OFF BRUCE B DOWNS
SUNDAY, FEBRUARY 19 AT 6:00 PM

THIS WILL BE THE NIGHT BEFORE JERRY'S BRAIN BIOPSY. THIS SHOULD LAST ABOUT 45 MINUTES OR SO.

PLEASE COME JOIN US IF YOU CAN. IF YOU CANNOT WE ARE ASKING THAT YOU LIGHT A CANDLE AND/OR PRAY DURING THESE TIMES WHEREVER YOU MAY BE.

PLEASE KEEP POSTED VIA THIS SITE FOR ANY TIME CHANGES OR CHANGES IN JERRY'S CONDITION. IF YOU ARE NOT AWARE OF THE RECENT CHANGES IN JERRY'S CONDITION, PLEASE VISIT JOURNAL HISTORY OR JERRY'S SITE


Love, Tracy


*************

February 10, 2006 10:00 PM

UPDATE ON JERRY.

We just came from visiting with Jerry and Carol at the hospital.

Jerry has been diagnosed with
PML-Progressive Multifocal Leukoencephalopathy

PML is a rare condition of the brain, caused by a virus called the JC virus. Between 80–85f all adults are exposed to this virus worldwide, but it appears to only cause disease in people with weakened immune systems. Pml was rarely seen before AIDS except in people with advanced cancer or in people who were immune suppressed for purposes of bone marrow transplant.

There really isn't any treatment or cure for this disease and usually takes the life of a patient 1-4 months following diagnosis. Jerry is at the end stages of this disease.

They are NOT giving up though. There is a couple of very strong medicines.

Please keep Jerry, Carol, their three children (Max, Julia and Robert), Jerry's doctors and everyone involved in Jerry's care in your prayers. Jerry's Mom has been one of the main caregivers during Jerry's transplant and treatments since being back. Please keep her in your prayers as well. So many of you have ongoing prayer chains. Please add Jerry for a miracle. Jerry is not very awake and he can't talk but we told him we are going to get everyone praying for him and he nodded and looked very relieved.

Miracles can happen! As long as there is life, there is hope.



Love, Tracy










February 10, 2006 1:15 PM (UPDATE ON JERRY)

Please keep Jerry and his family in your prayers. They have received some very devastating news today. I will update more later but please have them in your prayers.

Love, Tracy





February 10, 2006 10:19 AM
Saturn's National Donor Day helps NMDP


Good morning:)

Okay, some maybe good news. This won't make sense right away so bare with me:)

Katia does have C-Difficile. So, we will be starting her on Flagyl to hopefully clear it up. Why could this be good news? Well that may be the cause of some of her added pain. Not so much the butt pain but maybe the pain in her lower back and belly and her urge to go to the bathroom so often. She is still asleep but when she gets up, I guarantee her reaction to this news is going to be first, "Do I have to go in?" and secondly, "That medicine is nasty!" She hates Flagyl by mouth. But, it is usually for 14 days, twice a day and then she will be done with it.

I also want to make clear that we haven't gone up on Katia's steroids, yet. We are giving the Pentostatin one more week to show some promise without going up on the steroids. So, we will find out next week. How much we would go up I don't know? I would love to just see Katia start clearing up with just the Pentostatin and the rest of the immunosuppressing drugs she is on still without having to go up on the steroids. That would be an answer to our prayers. But, if steroids are needed, then we make those changes next week. She has remained on a low dose throughout this time, hasn't been off the steroids yet so we would just increase the dosing.

I will be back later today once I get an update on Jerry. Myron and I may try to go visit with him and his wife, Carol at Moffitt today if she thinks it would be okay. Jerry is asleep now most of the time.

Thank you for your continued prayers. I know I say (type) that a lot but I really mean it. I can't say it enough actually:)

Love, Tracy

PS My camera had been acting up but it is all better now:) I will work on getting more pictures up and down off the site on a more regular basis. The camera that had been acting up doesn't bother Katia's eyes so I try to just use that one. Let's see if we can get some cute pics:)






February 9, 2006 7:44 PM

Long day... but we are home:)

Katia didn't have clinic until after lunch time so that drags out us getting home. All went well with her dose though. The plan is to go up on the steroids in a week if there isn't pretty dramatic improvement after this dose. I agree. I just don't want the GVHD getting more ahead of us. Katia is a mystery in a lot of ways.

We are just wanting to see her improve and it breaks our heart to see her eating with her eyes closed because they hurt so bad or unable to sit down because her bottom hurts so bad. Will going up on the steroids help these issues? Well, we won't know until we try. We just can't seem to blame these issues on anything else other than the GVHD right now. But the fact is, GVHD can get ahead of someone quickly and become unable to be controlled.

The last two days, Katia has been having low grade fevers so we handed in a stool sample yesterday and did blood work today. We pray nothing turns up that would cause her to be admitted but it is safer to check and make sure there is nothing there that can get ahead of us. It is best to make the most of a clinic visit while we are there instead of having to go into the ER for a fever.

Katia was happy to get home though. It was a long drive home due to 5 o'clock traffic which turned into 6 o'clock traffic because of some accidents. So, she snoozed most of the way. The Pentostatin makes her nauseated as it is a type of chemo but she took her Zofran as soon as she reached home and she seems to be feeling well.

I have been up for the last few nights so I am really hoping to get some sleep tonight. Last night, the thought of everything going on with Jerry and just the frustration of a lot of things with Katia kept me up doing some research online. I find peace in coming up with ideas or answers.

Please keep Jerry in your prayers. I will update on him tomorrow after speaking with Carol.

Love, Tracy







**********

February 8, 2006 UPDATE ON Jerry Gomez

This update is from Carol, just now sent to me...

Hi there! I wanted to give you an update on Jerry. Things are not going well for him. Yesterday after his MRI he had a seizure, and the MRI revealed more lesions in his brain, so whatever this is, is getting worse, not better.
With this new complication, it would not be safe to air ambulance him back to Seattle, so I have Moffitt overnighting a Medical Report and all of his scans to them for review. They are now ruling out general stroke and vacuities since there are numerous lesions now. Jerry is having another spinal tap today to see if an infection will show up now, although it has not in the past. If it comes in with no infection, we will have to do the brain biopsy, which is what we have been trying to avoid. The consensus now is either bacterial infection, viral infection or cancer. Non-Hodgkin's Lymphoma usually does not present in the brain, and if it does, it is not in the areas where Jerry's lesions are. Also, with a clean bone marrow biopsy and Pet scan recently it seems unlikely to be cancer.

Jerry has complete paralysis on his right side, almost no motor skills, and is bed ridden. We ask that anyone that reads this prays that the Dr.'s will be able to come up with a diagnosis, and that we can start a treatment that will save Jerry. The triplets will be 8 on next Wednesday Feb. 15th, and this is what they are asking for for their birthday. I want so badly to give this to them. Many thanks to everyone for their kindness and prayers. The Gomez Family




February 8, 2006 (Katia's Update) 12:55 PM
WBC 3.8
HGB 12.1
PLT 408
ANC 1100

Good day:)

We are back from clinic and Katia is resting on the sofa watching Sesame Street:)

Katia's counts have improved some which was nice to see. I don't have everything yet and the labs above are from clinic's machine not the hospital. Usually I will use the hospital's but I won't know them until tomorrow.

As far as her pains go, we are going to continue treating them the same way for now, maybe more often. We are adding in Ibuprophen to the regimen to see if that helps at all. Typically Katia doesn't take Ibuprophen but we are going to try. She hasn't been having any fevers lately and her platelets have remained good so we will give anything a try right now that we get the okay on. We are also going to use some Preperation H to see if that helps at all. Although Katia is already on so many meds, it is nice to be able to give her something that is Over-the-counter, feels "normal" for a change:)

As far as the GVHD, it remains about the same. She has her appointment tomorrow to get dose #15 of the Pentostatin which is being used to treat the GVHD. I would love to see Katia's little pretty pink lips again. They look so torn up most of the time and I just miss that little "pucker". She handles most of this in stride though but she gets to the point enough is enough and starts crying when she really needs some type of medicine or to go to sleep to just escape things.

Well, thank you for your prayers. Please continue to also pray for Jerry as they are having to make quite a bit of decisions right now regarding how to continue his care. Jerry, Carol and their kids were right alongside us when we were trying to find Katia a marrow match and they have continued to be there for us. This breaks our heart to see them facing these decisions and continued complications.

I will be back later if I get any more updates on Jerry or more results from today's labs.

Love, Tracy

PS Katia's page is drawing very near to that 2,000,000 visitor mark. We have to think up something for special for when that happens:)







February 7, 2006 5:30 PM
2nd update today...

Thank you for your prayers. Katia is still not feeling too great. Mainly her bottom end. We did get a stool sample to take with us tomorrow. Katia calls her stool specimens, "PRESENTS" for the lab guys:) She is always happy to hand one over. There is a lot of pain involved in passing just the smallest stools that I hate to see her suffer like that. She does better than me at dealing with her pain. She is used to having bottom end troubles. That has been her biggest ongoing problem over the last 4 years.

Her eyes are bothering her but it is not any worse in the eye with the tumor. It is her right eye more actually. That seems to be more able to be controlled by medication. It is just she requires the medication more often each day. We have started back up with the Cyclosporin drops in each eye twice daily. We thought that would start helping her eyes. So, just pray for her to get out of some of this pain.

However, on a good note, she did have class today. They had to have class in the living room so Katia could sit on the sofa instead of a chair but they did fine. Ms. Michelle is so great with Katia and always works around her needs. Katia did get to read her the book and now she has two more to learn. She really likes this reading!!

She doesn't learn with the book. We put the words on flash cards first or in a list. She learns each word separately, then we put those words into sentences and THEN when she can do that, she gets the book. By then, she can read through the book on her own. That way, I know she isn't just memorizing the book but truly knows the words. I used to do that when I taught 1st grade and it is amazing how, as the lists of words grow, so many books start being able to be read:) Katia is realizing that a lot of words from books are throughout the house.

Well, I should sum this up.

As an update on Jerry, he is having neurological seizures. Carol, his wife, is having a meeting with the Moffitt doctors right now and she is working on having him transferred back to Seatle. She just wants to know she is doing everything possible. My heart goes out to her and the triplets (they are 7 right now). They all just want their husband/daddy back.

Estephany is doing well right now. Sara started her marrow harvesting today. They are so eager for transplant and very hopeful for the future. The hospital is treating them great and they are very happy to finally be there, all together. Once transplant is done and she is well enough, she will transfer back to All Children's for her follow up care. I was just talking to her Aunt about all the work and effort that went into getting Estephany where she is today. A lot of us worked together and it is paying off now to see her about to undergo transplant. Just a few of the people that helped, aside from those donating to the cause;
All Children's Hospital,
Cincinnati Children's Hospital,
The Katia Solomon Foundation,
Angel Flights,
Congressman Jim Davis's Office,
Super Q 1300 AM,
Restaurante El Rincon Catracho (local Honduran Restaurant),
and so much community involvement and personal help from individuals.

Amazing!!

So, thank you for all you have done and all of your prayers!!


Love, Tracy






February 7, 2006 10:00 AM

Good morning:)

Katia appreciates that so many are praying for her bottom. I read her the guestbook and show her the page counter...

This morning, her right eye is also causing her a lot of distress. She has school today but with the way things are going, it either may have to be cancelled or cut short. She really does like when her teacher shows up though and she learned to read a new book that she wants to show her.

Also, for your prayers for Jerry. Jerry has suffered some strokes. They are saying this is due to having so much chemo over the last eight years. Chemo can have so many side effects and this is a very sad one for Jerry. So, please continue your prayers. Jerry desperately needs them.

I will keep you updated on both of these conditions.

OH! Also, keep Katia's doctor in your prayers today as she is having her little baby today!!

Love, Tracy










February 6, 2006 12:15 PM

Good morning:)

I will be back later today for an update but first I have two prayer requests for you.

One, Jerry Gomez needs your prayers. He is not doing well at all right now. They are trying to take transfer him back to Seatle where he had his transplant to see what can be done for him. He seems to be losing his ability to function for himself. He is doing physical therapy daily, he seems to be eating well but his physical abilities are seeming to disappear and time is crucial now to get him help. He has been at Moffit for a few weeks now, here in Tampa but he doesn't seem to be showing improvement.

The second request is for Katia. She has been having "bottom troubles" quite bad and yesterday was just extremely long for her. She was in pain most of the day. It would get so bad she would just start shaking her legs and her body to try to relieve the pain. A warm bath didn't help, it made her worse because it is hard for her to sit still. Her happiest place appears to be on the sofa but even there, she is very uncomfortable. She tries to amuse herself with her GameBoy, TV, or other things but she couldn't do that. She is taking Tylenol with Codeine about 3 to 4 times a day and finally last night, it seemed to start helping. She feels quite a bit better today as long as she is medicated. My concern is what is causing this pain? Of course I have looked at the area and nothing seems to be wrong so it must be inside.

Now is time for details:

She hasn't been constipated at all, so I don't think she could have torn anything. There doesn't appear to be any blood.

I have asked her is it cramps or just outright pain (I can't believe how much my 6 year old knows about medical questions) and she says it isn't cramping, that it just feels very very very very sore and she doesn't like it at all.

I have called her doctor but Katia has HAD these problems more than I can count for the last 4 years.

For a while last night she was saying her back hurt and her lower spine was what was causing so much pain. That scares me because that was her complaints at the time of relapse and she started having a LOT of bowel troubles following the onset of the pain. She went days upon days with no bowel movements.

She hasn't been having any fevers, not even low grade ones. Her appetite is down but sometimes that is because she is hurting and she doesn't want to eat.

So, I just ask that you pray for this. Prayers can do miraculous things. I told her everytime someone clicks on her website and the counter goes up, it is prayers going up because that is why people come by here. She just ask me if I was praying? I pray all day!

Well, I will be back later.

Other than that, yesterday was good because we celebrated Katia's 2 year anniversary of her 2nd birthday! We are very happy to be able to say that and very sad because we know too many people that have lost their loved ones through this same fight. I so wish a cure could be found, quick!

I go down the Drop Down menus quite often and visit other sites. Both the Angels and those still facing each day with hopes and dreams. I am just uplifted by each of their stories and their words of encouragment as well as those sharing their feelings of lost. I am amazed by their strength. I don't think any of us ever planned to be facing this.

If you can find the time, visit those in the drop down menus and leave them a little message saying the "Ladybug" sent you over. It means so much.

Lots of love, Tracy

PS Katia says to say hello and that she is getting ready to do homework. She has classes tomorrow since she has clinic Wednesday and Thursday. No school on Friday! All 3 girls will be off that day.








********

February 4, 2006 9:45 PM

Well, Ms. Katia is down for bed:)

This time two years ago, my head was spinning. I was nervous and anxious and just so eager to move forward. I knew Katia had no chance without transplant unless there was some miracle (those are always possible).

So, tomorrow will be 2 years POST-transplant and we are so full of thanks. We are so grateful!! Katia is a MIRACLE!! She is our miracle every single day:)

Through this journey WE have learned so much. Katia has been the teacher. God has been by our side each step of the way, holding us up through the times that seemed endless and where we felt a sense of lost hope. We have never ever felt alone in this JOURNEY. It is a journey because we have traveled down a path that we neither knew when it would begin and we never know where each day may lead. It is a journey that we have learned faith, patience, love, and most of all THANKFULNESS.

We are not promised tomorrow with Katia but then none of us are promised tomorrow. But, we have learned to enjoy each day and all the small things in life that we once overlooked.

So, I want to thank you for being a part of this journey with us. I want to thank you for all of your support along the way. Your (numbers can't count) words of encouragement and your generousity with your time each day of prayer and checking on Katia.

God bless each of you:)

God bless Katia!

Love, Tracy










February 4, 2006 2:55 PM

Hello:)

The sun has finally come out!! This is Florida so we are very used the sun year round. Without it, we feel tired, out of place, etc.

What happened yesterday with my computer is the modem got taken out with the lightening so it is up and going again:) WOW! You get used to being able to jump on the computer and do things and when you can't? Well, let's just say I have been doing some serious house cleaning today!

Katia is doing okay today. Her lips actually look a bit better right now which caught me by surprise. It was nice to see her pink lips instead of all the sores and scabbing. Hopefully it will stay that way. Her eyes are pretty irritated today so we are starting her back up on the Cyclosporin Eye Drops 2 times a day (she doesn't know yet).

So, I am going to go pick those up from the pharmacy right now. I was just so glad to be able to pop back online:)

Lots of love, Tracy








February 3, 2006 6:45 PM

First, I have to clear up something. I feel like an idiot but Myron told me, "Katia's Transplant was the 5th, not the 4th..." I was determined I was right but I wasn't. It is the 5th. See what age does:)

So, her 2 year anniversary will actually be on Superbowl Sunday!!

The rain finally stopped after flooding our neighborhood and backporch. We are drying up finally. WOW, that was a LOT of rain!!

So, the 2 year transplant anniversary picture for Katia (with her new gift) will be posted Sunday - sorry for the day delay:)

Lots of love,

Tracy








February 3. 2006 12:31 PM

We are having horrible weather right now, all morning. I am on my mobile as it seems my internet box was zapped by lightening and nobody can repair until tommorow.

Katia hates the lightening and thunder so this has been a long 5 hours for her this morning and it is still going on. We have had about 6 inches of rain so far.

Well on a good note, tomorrow is Katia's 2 year post transplant anniversary!!! That is so great!!! She can't wait!! It is just a really great day for us.

Well, I should sum this up:) please pray for the bad weather to stop!!

Love, Tracy


*************

February 2, 2006 1:30 PM
WBC 3.26 (down)
HGB 11.6 (good)
PLT 380 (great)
ANC 890 (way down)

We are back from clinic.

Katia got two things from clinic. One good, one not so good. First she got a pretty baby doll:) Why? She got her FLU SHOT!!

She didn't want that at all and was worried every trip over there recently about getting that shot. Well, it is behind her now and she said it wasn't so bad.

She also got accessed today (in her port) and did great:)

One of her doctors will be going on Maternity Leave now for about 6 weeks so we won't see her for a while. I told Katia next time we see her, she won't have her baby in her belly. Katia is still in GREAT hands though with her other doctors and nurses:)

As far as Katia's WBC and ANC dropping? Well, that caught me by surprise. Last visit, the WBC was around 6.11 and her ANC was over 4,000. I suspect it has something to do with what is going on with her "Poopies" but I don't know. I just pray it is not another blood infection and that the rest of her counts don't drop. We go back on Wednesday so we will check then. We should hear back about the stool specimen over the next 48 hours or so.

Katia got a very special late-birthday, early-2 year post transplant gift in the mail yesterday BUT we aren't going to put a picture up until the 4th, her 2 year post transplant anniversary:) I will give you a hint! It is fit for a princess!!!

I better cut this short. I promised Katia she could watch a video when we got home. She is ready.

Please keep her in your prayers that there is no infection going on, no admits coming up and that she has no reaction to the Flu Shot (well other than it keeps the Flu away!)

Love, Tracy

PS Thank you so much for all of you visiting Christi Thomas and keeping her in your prayers.

Also, please keep Jerry Gomez in your prayers as he is still at Moffit and seems to have a long road of recovery ahead of him to regain some of his mobility and speech.











February 1, 2006 10:07 AM

AN URGENT PRAYER REQUEST FOR CHRISTI THOMAS:

On September 11, 2002 , Christi Thomas was diagnosed with neuroblastoma – stage IV. Christi has been fighting this awful disease while making a HUGE difference in this world. She is such an inspiration that all I can say, if you don't know her story, you can read her amazing story on her site (listed below). Christi has had ups and downs on this journey. Her cancer has come back, gone away, and now it is back with a vengence! She is going through treatments but the cancer isn't being held back at this time. Please pray for her and her family and follow her amazing story through her BLOG site which is updated daily right now. Christi also loves cards:) Tell them the Ladybug sent you.
Christi's Blog Site-Updated Daily


Christi's Site-Read her story



How is Katia today? Well, first, Katia had a LOT of fun yesterday!!! The past two days, Katia has been having some stool problems though (poopie problems).

Her stools are becoming loser, they are green, they are painful and they are showing traces of blood in them. The last stool culture shows some results that were just abnormal for stool so we are going to resend the cultures. At first I thought it was maybe just a mistake but now that her stools are changing, I am thinking the results were right.

We were scheduled to go to clinic tomorrow but if I can, I want to run over a stool sample today so we can get the results back. That is up to Katia whether I collect one early enough:)

So, please pray for her also. Her BUM hurts right now and she is laying down with her butt propped up on a pillow. She reminds me of the Princess and the Pea. She is saying she has "Shrek Poops".

Our concern of course is the GVHD spreading to other parts of her body like her guts and such. The good thing is that we always seem to catch things with Katia very early on. Great doctors!

A bit of great news! Estephany left for Cincinnati Children's Hospital yesterday on an Angel Flight. You can see pictures and further updates on her site. We are so happy to see them reaching this point of transplant. She has been through so much, the whole family.


Love, Tracy







January 31, 2006 8:13 PM

CBS NEWS VIDEO CLIP-PLAYHOUSE

Enjoy the newstory:)

Love, Tracy





January 31, 2006 3:30 PM

TODAY WAS PARTY DAY HERE!!!

Katia had her "Official Children's Dream Fund Party"!!

She really likes showing off her house.

A group from the Children's Dream Fund arrived and set up for the party!


Children's DreamFund




They put up balloons, brought cake, presents and just made Katia feel like a queen!

We also got to meet the some of the sponsors who helped to build Katia's Dream House!


Sponsors for Katia's Dream
Hillsborough County Aviation Authority




I have added an album of pictures from today in Katia's Yahoo Albums so you can see more of what they did today.

If you are local, the story will be covered on the evening news. NBC, CBS, ABC, UNIVISION, BAY NEWS 9, & FOX 13 so you can keep an eye out. I am not sure of the exact times but just that it will be on the evening news.

All in all, it was just a fun fun day and a celebration of Katia's life!!

Love, Tracy




***********

January 30, 2006 1:50 PM

Tomorrow we are going to have Katia's DreamFund Party so she is looking VERY forward to that (it does mean more cake so that is always happy news to her).

This morning ABC local news came out and did some footage for the early morning show (5am to 7am) for you locals. She did a very good job showing them around her house and doing an interview. I don't know if it will be available to view online. We will see tomorrow.

Katia is feeling back to herself now. She says she still needs soup because it is just good for her but she is ready for "real food" too.

Estephany did not get to fly out today due to weather so she is scheduled for tomorrow. They were packed and ready to go. I am sure they are both eager and nervous but it is just something they have to do to give Estephany another chance at life.

So, keep SUNSHINE and CLEAR SKIES in your prayers for tomorrow. This is the way Florida seems to have its winter. Just each day is uncertain and can be warm one day, freezing (to us) the next and raining the following day.

Well, Katia sends a big hello and to tell you she is wearing her cheerleading outfit today like in the picture up top!!

Love, Tracy






January 29, 2006 12:11 PM

Today has started off good for Katia. She is feeling much much better and back to her perky self (upright and not laying down).

Sharayah is feeling pretty lousy today so she is sleeping. Just a lot of congestion. She has a history of asthma but has done pretty well over the last few years so I think this is just part of what everyone is passing around these days.

The picture I am adding to the top of the journal entry is proof of Katia's "Don't let anything stop me from playing" attitude. This was taken yesterday when she was feeling very pukey! She is determined to have fun somehow even if it is laying down.

This was yesterday on the back porch. She has an area out there for her that we set up yesterday to kind of get more of her toys in one place. Well, that wasn't accomplished but at least there are more toys in one place now than all over the place. She says she needs her own bedroom, I say she needs her own playroom. The playhouse is a great escape for her though!! She loves that playhouse and I wish we had done that 2 years ago. She has a lot of fun out there with her sisters.

They listen to music, have Katia cook in her kitchen, talk a bunch of "girl talk" and just have fun. We are so happy that her dream was fullfilled by the Children's Dream Fund and their sponsors.

Well, take care and have a great Sunday:)

Estephany is scheduled to leave tomorrow and Jerry is slowly improving. Both sites have been update via www.ladybugkatia.com.

Also, here is a wonderful gift Katia received in the mail!! Could it be more perfect. You can click the picture to go to the sponsor's site.
.
Katia couldn't stop giggling when she got this box in the mail:) Our favorite sent, probably the Apple One and the GermX Foam Soap smells great too! No germs should be crawling around here for a while!!

Love, Tracy









January 28, 2006 3:48 PM

You have to go check out Nater's Page to see the birthday tribute to Katia! They did such an awesome job and that was so unexpected!! THANK YOU GUYS!

On the Katia front, she is doing okay today. Her belly is really bothering her on and off but the Zofran does help some. We kind of rearranged things and got more of her toys organized and in one place. Basically our house is taken over by Katia's belongings so she is always misplacing things and gets upset. She really needs her very own room.

But, we got her squared away with an area just for her and her stuff:) I am sure it will still find its way around all the house and get misplaced but at least we have a point to return it to:)

So, are you looking forward to the SuperBowl? We are:) It is always a great game to watch and we like to see the commercials that are in the lineup.

Thank you for your prayers for the prayer request mentioned earlier.

I have another one and that is for Jerry Gomez. He is really in need of prayers.

Also, good news! Estephany leaves for Ohio on Monday for her bone marrow transplant. It has been a long long long journey but her health and the hospital is ready her. I don't know how many of you read the listed newspaper article on her site but the transplant is being done at Cincinnati Children's Hospital. The hospital considers Estephany a charity case and will perform the transplant for free. All Children's will cover the cost of her pre- and post-transplant treatment. I do believe she will be in the best hands in both facilities and their hearts are all in to giving Estephany a new chance at life.

The family will be responsible for their day to day expenses but the transplant and care is taken care of. I can't tell you what a big relief that was to hear!!

At this time, The Katia Solomon Foundation is working on having their travel visas extended through June for now. We may have to extend them one more time depending on Estephany's recovery. The other thing we are working on is getting their belongings shipped to Cincinnati. The Social Workers at All Children's have lined up Angel Flights for the family to get up there. They are not only taking Estephany but also Sara, Estephany's donor. This is precious cargo! Mom and Dad will fly with them but that leaves no room for any luggage. So, it has to be shipped. We, as well as the Portillo Family, are so very grateful to see this coming together!!!

Well, that about sums things up here.

Please keep Katia in your prayers. We hope she is feeling better by tomorrow and can enjoy the day playing with her sisters on the back porch and in her playhouse:) We like to see that because then we know she feels well!

Love, Tracy










January 27, 2006 4:19 PM

Okay, yesterday was great!! Katia felt good, had a lot of fun and was just cheery happy going to bed...

Somewhere around 1:00 in the morning, I felt her moving around and heard her moaning. I thought, "Oh no, here comes some nausea. I woke her up and gave her some Zofran (miracle drug!!). She fell back asleep until around 6:00 AM and woke up feeling bad again.

I knew this was going to happen so we had already called off school for today. It seems the last two times of her getting the Pentostatin, it seems to really get her nauseated more. I hope this means it is working harder.

Most of today, she has had my bed piled up with birthday toys, her blankie and of course, the brown shirt. She did eat part of a bagel and then she had TWO bowls of soup just a bit ago. I expect this to last through the weekend and maybe she will be back to normal (around the clock) by Sunday. I hope so.

About an hour after the Zofran, she feels great for maybe another hour or so and then she starts wanting to lay around and finally she gets feeling bad enough to ask for more medicine.

I want to thank each of you for giving her such a fabulous day!!

I am about to add pics from January into her Yahoo Albums (link at bottom of page) so you can check them out. January has been one of those mixed up months and we just look forward to February 4th (two year post transplant date) and a good February:)

Hopefully she has a really good Superbowl Sunday!!! We are looking forward to watching the game:)

I have a few prayer request today.

One is for the family of the victims in yesterday's Car Crash. Lives so suddenly changed.

Another is for a little boy, Dylan Jackson. DYLAN JACKSON. Dylan and Damion were in a car accident last week. Damion, 4 years old, passed away last weekend from extensive head injuries. His little brother Dylan is three and is currently in a coma and in stable condition at Children's Healthcare of Atlanta at Eggleston. We went to visit Dylan yesterday. He really needs as many people praying for him as we can get right now. Please keep this family in your prayers.

I always talk about how so many families are in desperate situations, in our neighborhoods, our cities, our states, etc. Prayers really do help. So much and in so many ways.

As far as on the Solomon Homefront, I always ask for your prayers for Katia and of course our family. Like anyone else, we get under a great deal of stress. I guess we would live at Disney World if we didn't. I appreciate your prayers more than I could ever express in words. Some days are more stressful than others. It isn't always due to Katia's health or decisions we are having to make but ultimately we know many of the decisions we make with her are so important and that weighs heavily. We still have your typical issues that I know each of you go through raising your own families. Health, finances, the fact we have TWO TEENAGERS in the house now:), and just so many other things.

I know that God can read my heart when I am praying because even in prayer, I can lose my train of thought. So, I pray for our Caringbridge families, other families and individuals facing difficulties that I know nothing of, those people who take the time to check on others - knowing they are taking time away from their families and busy lives to do so, and just so much more. I also always thank God for each day. I know that sounds like a cliche but it is true. I am thankful, beyond words that Katia has come along so far. When she was first diagnosed, at the age of 2, I remember looking at her in her hospital crib and wondering how much longer I would have with her. I wondered why God gave me something so sweet and beautiful and that we might not have her around much longer. I promised Katia then, out loud, that I would do everything I could, learn all I could and rely on God to help me make decisions.

I have never felt alone in Katia's care. Myron and the girls, the doctors and nurses, friends, family, etc. have all been wonderful!! And I know that God has sent EACH of you into our lives to be a part of Katia's Miracle!!

I wish I could say (or type) "THANK YOU" a million times (I guess I could but that would take a REALLY long time) just to let you know a small fraction of how thankful we are:)

Katia sends her love and a big kiss! She is laying on me while I type so excuse any typos...

Love, Tracy








MYRON'S ENTRY

1/26/06 9:21 PM


Hey Everyone!!!

Just a quick note to say how excited I am about this special day! Our little girl is 6 years old!!!

All day long I've been thanking God for allowing us the privalege of knowing this little miracle. Katia has been such an inspiration to her father, she has literaly helped shape the course of my life. It is because of her "fight" that I've learned how many face these battles and how even through pain and sorrow, Love shines, and to care for one another is all that matters.

Thank you for taking this journey with Katia. Thank you for celebrating her life with us, it is our prayer that God will continue to heal and strengthen Katia and all of us as we face each day with renewed determination and lots of HOPE,HOPE,HOPE!

God bless, thank you for all your sweet birthday wishes and gifts.

Love Always,

Myron (DaddyBug)







January 26, 2006 4:52 PM

WBC 6.11
HGB 10.8
PLT 406
ANC 4790
FK506 7.5
CREATININE 0.2

Good day:)

Katia is having a fabulous day as far as her birthday goes. She was greeted very nicely at clinic with the nurses and doctors singing, a poster, presents, etc. She was in awe!!

She got her dose of Pentostatin and will probably feel quite nauseated over the rest of the weekend. Last time she got queezy and slept quite a bit but hopefully that means it is doing its job.

Her fingers look sore and her mouth and lips look sore. She doesn't complain though. Her hips look sore also.

She is just happy today is her birthday. She doesn't care much about the getting older part. She told me, "I still feel like I am 5," and she was looking at legs stretched out like, "They didn't get any bigger".

She has gotten so many nice cards in the mails, some gift cards, a few presents and she just feels on top of the world! Today is her day. We just read all the wonderful messages in the guestbook:) Thank you for taking the time to sign. I know it is going out of your way to leave a message and we so much appreciate the love you show!

Katia is a blessing in our family in so many ways.

So many asked what Katia would like for her birthday. She just likes surprises (who doesn't). Something I thought of is just for today (well every day really), make someone's day a bit more special in some way. Because that is what Katia does every day of her life. Her life has more value than she will probably ever know because everyday, she makes someone happy, someone smile and someone cherish life more. I know she can make my day better no matter what is going on.

So, give someone you love a hug today!! Thank you for being so special to us:)

Love, Tracy








January 25, 2006 10:30 PM
1 1/2 hours till your birthday baby!!!



Happy Birthday Katia!!


Happy Birthday Katia!!



We love you!!



Mommy, Daddy, Sharayah

and Tatiana!!




*****************

January 25, 2006 11:40 AM
1 more day till Katia's Birthday!!!

Katia is with Ms. Michelle right now. She read her book and was so proud of herself to get through it:)

Last night, Katia didn't sleep too well. She was moving around most of the night and kept sitting up. She wouldn't say anything but she just wasn't sleeping well. She is getting pretty flustered this morning but is doing well in school right now.

She is very happy about her port now. She is clearing up in the surgical area and she is seeing more and more just how great it is going to look. She likes that she doesn't have to worry about snagging her broviac getting up and down off the sofa or bed.

We are off to clinic after school to get our labs done for tomorrow's Pentostatin dose. She wants to talk about how sore her fingers are right now. She is avoiding the writing, cutting and pasting in school right now due to her fingers hurting. She also has a big area in the back of her mouth that looks like she bit it really hard but she says she didn't. It has been around nearly 2 months (or more) now and is only growing bigger so we are going to bring that up today too.

Someone in the guestbook asked about the overall risk of putting Katia back on the steroids at a higher dose. It isn't that it is a good thing but it seems to be the only thing. It can cause organ and bone damage as well as stunted growth but compared to the fact that the GVHD can so quickly get out of hand and even become fatal, it is just one of those things we have to do for now. There are other treatment options but in weighing those out, the rise in steroids seems the best thing to do for now. She already has weakening bones in her hips, especially her left hip.

I look around at a lot of kids that have gone through chemo, radiation and transplants and most have "battle scars". Things never really get back to the "normal" that parents want for their kids but the fact that they are alive, makes the "battle scars" seem very well worth having.

If you think about the fact that a Bone Marrow Transplants is one of the hardest things for a body to endure (it effects every single organ, bone, muscle and skin) then you learn to expect some of these bad side effects. Some of the side effects for cancer treatment are actually secondary types of cancer? I am not sure that makes sense but that is where things stand right now. That is why research is so very important and significant.

I read and review everything I can get my hands on as well as the fact I learn so much from other people's sites concerning their family's battle with cancer. I think we all have to learn together and know that so many things can change so fast. This is truly something you have to look at one day at a time or you would go crazy. I have to put out of my head a lot of the "what if's" and just focus on how thankful I am that Katia has been winning this battle for 4 years now. She is nearly 2 years out of her transplant (February 4th) and we will celebrate that day just as much as her birthday because it is a form of re-birth (a second chance at life).

I think the main thing that has held Katia's health together, well two main things is great doctors and so many prayers!! We have a good team when you think of that.

Well, I will be back later, hopefully with some good counts:)

Love, Tracy


PS I am working on shrinking down Katia's Caringbridge page as well as the www.ladybugkatia.com site to make it easier to load for each of you:)




January 24, 2006 6:20 PM
2 MORE DAYS TILL KATIA'S BIRTHDAY!!!!

Good day:)

First, let me answer a question in the guestbook as I thought I had put it on here but I hadn't...

Katia's Bone Marrow Cytogenics came back 99 percent donor (which is the highest they can tell you since they can't literally look at every cell) so that is wonderful news!!! She is holding strong! They didn't check her spinal fluid so that will be done next time or when it seems necessary.

Katia did something today for the first time!! SHE READ A BOOK!!! The book is called, "What Can I See?" She is so happy she has school tomorrow so she can read it to Ms. Michelle!!!

We have been concerned lately that Katia's GVHD seems to be worsening although she is on treatment. If this continues (and it has) she will most likely have to go back up on the steroids as well as continue to the Pentostatin Treatments. We aren't sure yet. But, by comparing from last August, things are worsened. They seemed to be improving until these last setbacks she had in the hospital. So, please keep this in your prayers.

2 more sleep sleeps till Katia turns 6!!!

Love, Tracy






January 23, 2006 9:20 AM
3 more days....

Katia is still asleep as I type this and she is just so precious to look at:)

As eager as she is to be a "big girl" she loves being the baby around here. She adores her role as the youngest, the baby, the one whose mistakes still are somewhat "cute" and not huge!

Katia was quite a surprise to our family when I found out that I was pregnant with her. I can always look back at that moment of uncertainty, when we found out we were expecting another, as solid proof that everything happens for some reason. I remember I had a lot of questions thinking that we would be starting over, would the other kids be accepting of this, and so much more. I remember a big one was, "How do you child proof a home with older kids living there?" I tell you, my brain was just asking a million questions! But, as Katia grew bigger in my belly (and she grew quite big-the biggest of all 3 of our kids), I felt that amazing bond and just knew everything would be okay. It would all fall into place.

From Katia's birth, she became the center of our world. There has never been a moment that I could imagine life without her. She was the perfect one to have as "the baby" because she makes everyone feel so special and she is so lovable that there isn't much time to feel jealousy from her older sisters. They are just as happy when Katia is happy as she is herself.

I don't think that is due to her having leukemia because it was that way before she was diagnosed.

Oh, and as far as "child-proofing" the house, I don't think we ever really accomplished that either but I do know there are a LOT of eyes always looking out for her safety around here. We didn't have "older sibblings" so much with the other 2 when they were babies. All those things I worried about so much just seemed to fall into place. God is in control.

When things become stressful around here, for whatever reason, I really try to think on that. It is hard sometimes because I am human and if worrying were a professional job, I would be the CEO! I could give some GREAT seminars on HOW TO WORRY. But, I really do try to draw myself back and not look at things so "head on" and try to look at the bigger picture. Notice, I say try.

I look at Katia, as well as Sharayah and Tatiana, so eager to grow up and then I think of how great childhood really is. I guess we don't know that until we don't have it anymore. I think maybe Katia has gotten in on that big secret and will enjoy being the "baby" as long as she can. She is going to keep on getting pure joy out of a "Yes" for Mac and Cheese or a "Yes" to play "Go Fish".

What was your FAVORITE thing to do as a child? I have to ask, you know me...

Mine? Well mine would have to have been climbing trees. I should have been a monkey I guess. I would go as high as I could go and there were times that I fell smack out and broke my arm and bruised my pride. BUT, I loved to climb trees. I think I just felt really AWESOME to have gotten so high in the sky. I also used to be one of those kids to spin around (for whatever reason) until I would get so dizzy, I would fall over and then of course, do it again!! Do you ever sit in your desk chair (home or work) and just spin around like a 5 year old? Try it:)

Love, Tracy







January 21, 2006 4:00 PM
5 days and counting!!

Katia is just buzzing about her birthday:)

We had said her surgery site from getting the port put in and the broviac out would be healed up by her birthday and I certainly think it will be. The sites are healing up beautifully.

Katia hasn't had a fever since yesterday morning and seems to be doing very well. Nothing has grown from her cultures and we are so thankful for that.

Prayers are very powerful!!

I would like to ask for a silent prayer request to be added to your prayers.

Also a prayer request for a little girl, Amanda, fighting leukemia. She is having some very difficult times right now and her family is asking for prayers for their Amanda.

Katia's page is nearing that 2 MILLION HITS mark and I like to think of that as 2 million prayers for Katia and so many others in need of prayers. Sometimes it is easy to crawl into our own shells and think we face things alone but that is sadly not true. There are so many going through such difficult times, in so many similar and different ways.

It is so easy, and very human, to get caught up in the very day trials of life. Those trials, I think, are ways to build us up and make us stronger. It would be great if life was just perfect and everyone was happy, healthy and wealthy all the time but it isn't. What helps us get through the problems we face is knowing that we have God on our side and we can pray to him at any time. We may not get the answer we were hoping for sometimes, a lot of times. There are many times we can't possibly understand why certain things go certain ways.

I think that by sharing our stories and thoughts, we see that we are not alone. I am grateful that we do not face things alone. I am touched by how many people visit Katia's site and keep her health and wellbeing in their prayers. I am grateful and amazed.

I remember the day she was born and the first time I looked her. I remember giving her that brown shirt to give her comfort in this "big scary world" and I never imagined how Katia would touch so many lives, how much she would go through and how much that brown shirt would be needed for comfort. I can't believe that was nearly 6 years ago!!

WOW!

So, thank you for being a part of Katia's life and for caring so much. God bless each of you:)

Love, Tracy





**************


January 20, 2006 9:30 AM
6 days till Katia's birthday!!!

She is counting down the days on the calendar. She will be very happy when we get to Sunday because then she will be in her birthday week (much easier to follow on the calendar for her).

I want to ask that you pray for Katia though. She has woken up the last two days with higher temps than her normal.

I do her temps in celcius so anything over 37.0 is a fever. Her normal temp is lower than normal at around 35.3-36.4

The last two mornings, she has been 37.4 I really want her to not only stay well just because we want her to be doing good but we don't want her to get sick or have to be admitted for her birthday. She is really looking forward to her birthday:)

I have decided it best to not let her go out to the parade. There will not only be a lot of people out there but she hasn't had her flu shot and it is still flu season. I just had a little "bug" in me saying not to risk it and I have to follow that. She understands. Katia is very smart about her needs and to avoid getting sick.

I also would like to ask that you pray for Jerry Gomez. He has been having "episodes" lately and after an MRI, the results show he has had some strokes. They aren't sure how much he can recover from this as it has affected the right side of his body. They are pursuing physical therapy and he remains in the hospital since a little over a week now. His site will be updated with further news.

Well, it is "pill time" for Katia so I better cut this short. She likes to get her pills and medicines out of the way. She can't stand the taste of one of her liquid meds (it used to be a pill) so she gets upset until after she gets that behind her. She likes pills much better than liquids.

Love, Tracy







January 19, 2006 4:22 PM

WBC 5.0
HGB 11.3
PLT 341
ANC 3200
Creatinine Serum 0.2


Katia had clinic and did VERY well with having her port accessed:)

All went well. One concern about the parade... Katia hasn't had her flu shot and they would want her to have it. But seeing today is Thursday, that would mean she would have to get it tomorrow if her labs look okay.

Katia did wake up with a low grade fever today so I don't know if it is in her best interest to get the flu shot before the blood results come back that were sent today? I am thinking it over.

Please keep Katia in your prayers that these results are all negative. She doesn't want to be admitted during her birthday (next Thursday) although she will be at clinic that morning getting her Pentostatin Treatment.

Katia is calling...

Love, Tracy

PS Here is a Tampa Tribune Article about ACH that came out today.
MORE HOSPITALS CALL ON INTERPRETERS FOR HELP




**************

January 19, 2006 8:41 AM

We are off to clinic in a bit. Katia's line will be accessed today (first time while she is awake) and we will do labs and just have our regular clinic visit (not a long long one).

She got her first ever school report card yesterday and did very well. She is THRILLED!!! You see that smile in the princess picture on the side of the website? That is Katia now:)

She is "OL" (on level) in all her areas of learning and her work is all "S" (Satisfactory). We are so happy to have her not only participating in Kindergarten but also to be doing well. Thank you, Ms. Michelle!!

Love, Tracy

PS I will be back after clinic.







January 18, 2006 8:43 AM

Good morning:)

Katia is currently eating breakfast, in her uniform and waiting for school to start! She is so happy and she had a good night sleep.

Saturday, Katia is going to be on one of the floats in the Gasparilla Parade (the kids' parade) and she is VERY much looking forward to doing that. The float will be sponsored by, FORE THE CHILDREN. Fore The Children, Inc. is non-profit organization that was formed at the beginning of 2000 exclusively to run charitable events to benefit children whose choices in life have been taken away by cancer. She gets to wave and throw beads!! Katia said she loves parades and we know she likes to wave. It is going to be cold (Florida kind of cold) so she is going to bundle up and go have some fun. Of course, I will take LOTS of pictures!!

Oh, Katia says to tell you she has ALL her homework done for her teacher:) Here is a picture of her ready for school:)





Love, Tracy







January 17, 2006 5:30 PM
2nd Update today...


Hello:)

Katia is very happy that she is going to have classes tomorrow. We (I should say I) had misplaced her homework that she has been working so hard on over the last 5 weeks or so BUT we found it!! She was worried because she thought if she didn't have all her homework, she would get a bad report card. Anyway, we are all set.

Also, please keep Jerry Gomez in your prayers. He isn't doing too great right now. I will get more details soon but I do know he needs your prayers.

Katia wants me to put a picture up here of her with her mask on so I will do that over the next day or so. She likes her mask, although she hasn't seen what it looks like on her yet. She says it feels comfy. It is pink so she wants to wear things that will match it:) How girly is that?

Well, that is all for now.

Thanks for checking in.

Love, Tracy








January 17, 2006 10:14 AM

Good morning.

I want to first start off with 2 prayer request. One is a "silent prayer request" and even without all the details, prayers really do make a difference. So, I ask that you please pray for this person very much in need of your prayers.

Secondly, is a little girl named Jan. She does not have a website, she doesn't have a disease. What she has is a broken heart having just lost her mommy. Jan is about to be one year old. I am not going to go into all of the details but this little girl just tragically lost her mommy. Please keep her in your prayers as well as the whole community that is suffering this tragedy and this loss.

To add to that, I will bring up something that is brought up quite often. Some believe it is easier to lose someone over time than suddenly and some believe the opposite. I believe it is never any "easier" to lose someone you love, no matter how young, how old or how you lost them. Someone that is dear to you is dear to you always. If you know someone who has suffered the loss of a loved one, don't hesitate to talk about the person who has passed away, use their name and keep their memory alive. I think that each person is placed on this earth for a reason, a mission if you might say. One BIG reason I appreciate Caringbridge is it allows us to share the stories of some heros in our lives. It allows others to get "to know" our loved ones. It personally allows me to not only share Katia's story but to read about others. I am very touched by people I have never met. Not just the person the page is about, but also the family behind that person, the author of the page, etc. When a person passes that I have never met but only followed online, I am grateful to have had the opportunity to have been touched by their life.

Katia did have a lot of fun in her house yesterday and we put out new flowers (silk flowers) in her little flower pots so it is bright and cheery looking. I don't see how that bright yellow house will ever not look cheery but the new flowers make it even MORE cheerful:) She loves silk flowers and her favorite colors are yellow (of course) and purple. She likes bright things. As far as her eyes, well they really need prayers. I hate to see her hurting so badly. We were watching the movie, "Rebound" last night and her eyes were already hurting so she decided to just go to sleep. That is what she is doing to ease the pain.

I did find a gel mask (thanks to an email that led me in the right direction) and it should arrive today or tomorrow. I also found a a sleeping mask for her at the mall. Nice and soft and silky. A friend of mine has found some sunglassses from Disney World and is bringing them by today. Hopefully between these three things, Katia can have less eye pain until we get to the bottom of this.

What are we thinking it is? Well sadly we think it is GVHD and what we are going to probably have to do is go back up on steroids again. Her eyes didn't start bothering her until the weaning of the steroids got us down to around 7mg a day. Right now she is at 3mg a day. We missed a dose of the Pentostatin (for the GVHD) when Katia's kidneys were so sick and we think that gave this a chance to get ahead of us. Now we are getting back on track but she is having more spots, her finger tips are getting bad again, her eyes are bothering her more and more and the areas on her hips (which were just biopsied and shown to be GVHD) have flared up. They appear to be getting better at times though. So, we are going to see if the next dose of Pentostatin puts things back under control and if not...

So, that is where we stand right now. Of course, we are all (doctors and us) looking at the different available options. Her doctors are very good about looking at everything and thinking of Katia's best interest and happiness.

Thank you for checking on Katia and just for everything you do!! She is so looking forward to her birthday. Her grandpa asked her, "Do you like presents?" Katia said, "I LOVE presents, I am a kid!" Like, "HELLO:)"

We are so happy to have Katia. She is our miracle and each birthday and transplant anniversary (February 4th) is just a day of such appreciation and happiness for all of us!

Also, check out Estephany's Site as there is a Newspaper Article today on her in the Tampa Tribune, Metro section:)

Tampa Tribune Article January 17, 2006

and an article online: Y el milagro llegó para Estephany



Love, Tracy









January 16, 2006 3:00 PM

Good day:)

We are back from clinic and all went well. It seems none of Katia's labs came back positive (YIPEE) so we are home. We go back on Thursday for her regular visit:)



Have a great day:)

Tracy









January 15, 2006 6:00 PM
11 Days till Katia's birthday!!!

Good day:)

Katia is having a good day. She slept well and woke up in a good mood, ate some waffles for breakfast, waffles for lunch and Tuna Helper for dinner (gotta love Tuna Helper!)

She has had eye issues on and off all day, in both eyes. I did find her a sleeping mask to wear but I am having no luck with a gel mask for her size or darkened sunglasses. I was told the best thing to do for the sunglasses is to go to Vision Works or something and just get pediatric glasses, no prescription and get them to darken the lenses really dark. I thought, "Great idea!"

I went by and they want nearly $150 so I will keep on trying to figure out something. This is something we can discuss with her doctors. I can't find those really dark glasses anymore. Some look really dark but when you put them on, they aren't. What is a movie star to wear? Anyway, we will find something to block out lighting for her.

This has been a pretty slow day around here (those are the best kind of days!) We partially took down the tree but haven't yet boxed it up.

Tomorrow we head to clinic in the afternoon to just check her blood counts. So far, nothing has grown in the stools sent to lab or the blood!!! GREAT NEWS!!! We remain home:)

Well, I need to cut this short. Katia wants to lay down, her eyes hurt. I wish I could take that away from her.

Love, Tracy


***********

January 14, 2006 9:38 AM

All is well here:)

We had a good nite, good sleep and Katia is happy and around the house.

We removed her bandages yesterday and although she is quite bruised and still has healing to do, the site looks really good. I can't wait for it to heal. It looks better this morning already. Katia is so excited.

She keeps going around here and popping in from room to room like she is enjoying every corner of the house! I was thinking of taking down the Christmas tree (seeing we are the only ones with it still up) but Katia is loving it and there is no law that says it MUST be down yet:)

I am just really praying my phone doesn't ring from ACH saying there is anything positive growing in those blood samples. Our plan is to return to clinic on Monday, have school on Wednesday (yeah!) and then have clinic again on Thursday, school on Friday. Hopefully it stays that way:)

Well, I just wanted you to know Katia had a good night, sweet dreams and is up and about today:)

Love,Tracy

PS I love the entry in the guestbook about the brave soul.









January 13, 2006 8:15 PM

WBC 4.71 (normal range)
HGB 9.5
PLT 429
ANC 3862
Creatinine 0.4
Glucose 53

Hello:)

We are home:)

Long long day but if it ends at home, we are good!

Katia had a long day at clinic which started off with a very rough morning. She felt horrible and didn't want to go anywhere. Once we were there, she was upset and didn't want to let anybody do anything.

We did get her labs done and then got her pre-meds and finally plugged into her IVIG.

Once that was going, the report came back her sugar was down to 53. That could be some of the reason she was feeling so bad? We got her some juice and got it up to 73 before we left.

Katia has a number of added red spots on her body, more than ever before. This is the most puzzling thing going on with her right now. She is on so many medicines and treatments as well as battling the GVHD that it remains a mystery. The areas on hips, chin and underarms looks more like typical GVHD skin but the spots? Someday we will figure it out...

Now, Katia is feeling better. She still has a cough and cold and runny poopies. She still has her little spots all over. She is happy though and feeling better.

The big news? She was deaccessed today so she has no tubies hanging out of her chest. She has ALWAYS had these so this is very new to her. She still has some healing to do so she is bruised and still has some stitches there but it looks really good and I am sure she will be looking a lot more healed up in a week. She is going to probably spend a lot of time looking at the area once it is healed up.

She still is acting like she has her broviac because when she sits down, she reaches to tuck the tubes under her shirt like she always has. She has always been very gentle with her broviac and has taken good care not to get it yanked or dirty.

I am very proud of her for all she faces each and everyday and how cute she still smiles and how quickly she seems to get over bad things.

Thank you so much for your prayers.

We took more blood cultures today and my prayer is that they don't grow anything!! We do not want to have to be admitted again anytime soon.

Have a good weekend:)

Love, Tracy








January 13, 2006 9:05 AM

As happy as we are to be home, I want to be that happy to STAY home, so I want to ask you to pray for Katia.

She is feeling really lousy this morning, I mean the crying kind of, can't get out of bed, doesn't want to do anything kind of lousy. She started having loose stools (runny poopies) last night and had a couple during the night and one this morning. I know just being in a hospital can get one sick but we don't want her to come down with something else right now. She needs time to build up her strength and her blood counts. Her marrow needs a chance to rebound.

She says her throat really hurts, she has a runny nose, lose stools, her temperature is cooler than normal so no fevers but she is cold and can't get comfortable.

I figure the best thing to do is to put it in the hands of prayers so I came over to the computer to update.

I will update after clinic or during the day on how she is feeling. We should be there for the most part of the day, but if I need to update, I can while I am gone.

Thank you so much for your prayers.

Love, Tracy








January 12, 2006 5:47 PM

COMING TO YOU FROM THE DESK OF TRACY SOLOMON!!!

WE ARE HOME!!

What a sweet trip home! Beautiful sunny day, clear skies, over the bridge and it was just wonderful. As I type, I am in my PJ's, showered, Katia is in PJs, laundry almost done from the hospital, Myron is about to start dinner, pure BLISS!!!

BUT, we do get to go spend the day at clinic tomorrow to get that good 'ole 5 hour transfusion of IVIG. Her counts are below 500 (449 to be exact). So, they gave us the choice of spending the night in the hospital, doing the transfusion tomorrow and then coming home tomorrow.... YEAH RIGHT!!! We were packed to leave so we said we would be happy to come back to clinic tomorrow and be home tonight!

Katia's jaw dropped when they mentioned staying but her smile came back when I said no. Myron came and rescued us and brought us home.

She didn't get de-accessed today (needle taken out of port) so she is still with her IV access. We will just go get plugged in tomorrow and then get deaccessed and come home with no tubies.

I told her she can be "all boobies with no tubies!!" She liked that.


Lots of love,

The Solomons, Home Together!!





January 12, 2006 11:30 AM

WBC 3.31 (down again)
HGB 9.3 (up a pinch)
PLT 444 (great)
ANC 1000 (low again)
CREATININE CLEARANCE 601 (very high)
CREATININE SERUM 0.3 (good)


Hello:)

We are planning to break out of here today after Katia's Pentostatin infusion. So my next update should be from home.

As you can see, Katia's counts came down again? Not too sure what is causing this to go up and down but her marrow checks out to look good:) That is great to hear. No leukemia or abnormal cells. We are still waiting for the Cytogenics to come back on that though.

Her Bone Marrow Density tests show a problem in the area of the left hip which would probably explain some of her pain? We are going to see another doctor about that and probably start on some type of therapy there to try to build her bones back up. This isn't suprising seeing she has been on steroids for so long.

The new pictures today are Katia being a doctor. She was doing surgery on her puppet friend, Megan. Megan has a port like Katia. Katia is a little nervous about them deaccessing her today (taking the needle out of her port) but I think when all is said an done, she will be okay. She has bandages on her biopsy sites as well and her arm where the medline was. That is all going to be removed today. So, the word for the day, OUCH! But, she will be happy to have all the stickies taken off and go home.

She is eating well and drinking okay so we are pleased with that. Our hope is to go home and stay home. Our other hope is to see Katia's counts come back into normal ranges, have this port site heal up from surgery, have Katia drinking really well and get her kidney counts back where they should be again. It seems her kidneys don't like the hospital but they seem to like being home.

As far as her eyes go, I am going to try to find her a small gel mask to wear and we are going to use an eye ointment about 3 times a day, maybe more. They are natural tears but in an ointment form. We may have to do some eye drops but we will see. She hates eye drops and there is no pleasant way to give them to her. We can't hold her down and struggle with her because she does have weak bones so we could damage her or cause a fracture of some sort. We definitely don't need that.

Our Christmas tree is still up so Katia can see it again before we take it down. She is happy about that I think.

Do you see that we are under 100,000 hits away from 2 million? Can you believe that!!! We definitely have an extended family all over the world. If you look at the guestmap above, you can see areas of people checking on Katia. I am amazed, grateful and so very touched by this. She has received so many hugs on her hug counter and let me tell you, it really does make a difference. THANK YOU! You have touched our lives greatly!!!

Well, we have some packing to be doing.

I can't wait to get home and sleep in my own bed!! I miss wearing my PJs when I am here and having the smell of coffee in the morning. Katia misses her toys and being able to watch her movies. She has also missed having school with Ms. Michelle so she is looking forward to seeing Ms. Michelle. She has been doing homework though so we have a lot to hand in. I think she is about to get her first school report card soon:)

Love, Tracy


***********

January 11, 2006 10:50 AM

WBC 4.93 (back to normal)
HGB 9.2 (up but still low)
PLT 440 (very good)
ANC 3240
Creatinine Clearance (has to be repeated)

Hello:)

Katia is feeling a bit better today. Her arm still hurts and her shoulder hurts but her hip is feeling better as well as her back. Her last dose of codeine was during the night around 2AM. Her eye is already bothering her this morning though so she may need some codeine for that though. I think we are going to start her back on eye drops a few times each day. She isn't going to be happy with that but I think that may be a start to helping her eyes. She used to use the Cyclosporin drops so she may need to go back to something like that or a steroid drop.

Her counts are improving, mainly the WBC and the ANC which go hand in hand. Hopefully that is showing that her marrow is recovering from the infections. I was very pleased and surprised to see that much improvement today:) I had to look twice.

Katia has just come to the conclusion that she will be feeling much better and will like her new mediport by her birthday. I think that is a good expectation. Her birthday is the 26th so she should be a lot more healed up by then:)

I look at her and can't believe she is almost 6 years old. WOW! She is just a bit over 3 feet tall but there is a lot of knowledge and tons of love packed into that little body. I know she is getting very eager to learn words and she learns to read small words really fast. I have noticed she doesn't retain them for very long so I have a few ideas to work on when we get home. I used to use word flashcards when I taught 1st grade. We would go through all the words that were coming up in a book and when the class knew the words on the cards, I knew they were ready for the book. I wanted to know they really KNEW the words and not that they were just memorizing the book or stories. Then all the sudden, the realized they knew enough words to start reading more and more books. I loved seeing that light "click on" in their head and see them so excited to know how to read. That is going to be Katia. Sharayah and Tatiana loved learning to read and there were a lot of books waiting for them to read. The big thing was when they could read "Chapter Books".

Katia is eating breakfast right now so I am going to close this out. Her breakfast is strawberry oatmeal, bacon, a biscuit with butter and chocolate milk. That should be enough sugar to get her through the morning:)

Love, Tracy






January 10, 2006 5:10 PM


WBC 2.86
HGB 8.5
PLT 410
ANC 810


We are back and Katia had ALL her procedures done today plus a bone density scan. I am glad she has all of that behind her. Since she has been on steroids for so long, it will be nice to know how her bones have been affected. We finished everything around 3PM.

She was called down to surgery early which was good. A few doctors had to change their schedules but it all worked out well. I am just glad she didn't have to go hungry for a long time this morning.

She is very sore right now where the port was put in and it is bloody in that area. They put it on the opposite side of where her broviac was taken out the other day so right now she is sore on both sides. Her counts had gone down a bit more today which I would prefer see them either stay the same or go up. Normal counts are listed above on the site and the last few days of counts are in the last journal entries.

Hopefully the infection has cleared up and will not cause any more problems.

Katia always wakes up in recovery screaming for me so they usually come get me right away. Today, however, she woke up pretty furiously. "The squeaky wheel gets the oil" held true and they called me right down there. She was pulling at the new mediport and mad because they still had the IV in her arm (which is now out). I have to say, she is a girl who knows what she wants and doesn't want. The nurses and doctors always show such great patience with Katia and that is so appreciated!

I am praying she will start feeling better soon and have a good night. She is very uncomfortable but that is understandable. I would really like to see her counts start coming up:)

Thank you for your prayers and concern. Please pray that Katia can have a quick recovery, feel better tomorrow, be able to get her Pentostatin treatment on Thursday and get home by the weekend. That is a long long list, huh?

Love, Tracy










January 10,2006 10:39

She is in surgery:)

Love, Tracy




January 9, 2006 9:40 PM

Just wanted to jump on and do a small update. It seems these eye
problems are returning each evening? She got worse and worse, covered
her eyes and wouldn't even open them to eat or look at me due to pain.
It starts off slowly and then gets worse and worse. About an hour after
a dose of codeine, she started improving and now she feels better. I
really wish I knew why this was happening...

Tonight we had an ultrasound done to check the area where the port is
going be put. It looked fine. The surgery should be around noon. Katia
has had 4 broviacsg April 2002, August 2003, January 2004 and October
2004. I remember each of those days. Katia remembers each of those days
and her understanding of all her procedures of broviacs, biopsies, lung
surgery, etc is very clear. She has learned a lot.

Tonight, she let me know just how much she understands the reason of the
port and that she is okay with that. I think she knew it would make me
feel better to know she was okay with it. She was right:)

So tomorrow she gets her port, a skin biopsy, bone marrow aspirate,
lumbar puncture and eye exam. She has a big day and of course the
checking of her marrow and spinal always gets us a bit uneasy as we wait
for the "total remission" report. The skin biopsy is to check a
thickening and rough area on each of her hips. The area has changed
colors. The opinion is that it is due to GVHD.

So, as you can see, tomorrow will be busy and full of anxiety. I look
forward to hopefully being home for the weekend though. Katia says she
wants to go home and not have to come right back. No offence to the
hospital staff but we all prefer being home, together:)

Love, Tracy








January 9, 2006 12:25 PM

WBC 3.02 (up a bit, still low)
HGB 9.5 (up a bit, still low)
PLT 428 (good)
ANC 720 (down by 200 and low)


Good morning:)

We actually had a good and uneventful night. That was nice!

Katia was in quite a bit of pain for the evening but after one dose of codeine, she went to sleep and slept all night. Her eyes are feeling good right now. They have been good all morning so far, no complaints. I pray that it will stay that way. I will update on that later today on how things go.

We are hoping to be scheduled for surgery tomorrow but it MAY be on Wednesday depending if they can get in on the schedule with everything that needs to be coordinated. I am really hoping for tomorrow.

We are still going to try to stay on schedule for her next Pentostatin treatment for Thursday and then plan to go home if all is going well, Katia with her new Port:) She still isn't convinced but she is accepting of the idea now. I think she has finally just realized we are going to make THAT final decision and she trust all of us.

Her kidneys have done very well on these antibiotics that she is on. We haven't needed to use the Vancomycin which is good. All her follow labs are still staying negative and after 5-7 days they are considered to be final results. We are still waiting results on one of her stool specimens. Tomorrow is also a Creatinine Clearance test (collect urine for 12 hours) to check the status of her kidneys. I am thinking those numbers will be good.

I am also working on getting some new pics on Estephany's site of her dad and baby sister, all of them together:) It is so nice to see that family reunited!

Well, I better get this posted:)

Keep the prayers going as they are working and it gives comfort just to know those prayers are going out for Katia:)

Love, Tracy









January 8, 2006 6:35 PM

Hello.

Well the eye problem has lingered throughout the day, not too bad but there. Katia takes a lot before she complains. She was unplugged and played a while and then crawled back up in bed and shut down. She just puts her hands over her eyes and pushes on them.

She asked her nurse for some morphine so that just finished. She says it helped some but not much so we may try something else in about 2 hours or so if it is still bothering her. I want her to be able to sleep tonight and not have that bothering her. I hate when she falls asleep because she is trying to escape pain. She (nobody) doesn't deserve that.

While she is down Tuesday, I really hope they can get a very detailed look into her eyes and maybe find the problem. We don't WANT a new problem but we do want a solution to this. I know all problems can't be fixed, we have learned that. Some things she just has to live with and hopefully time will clear it up.

On another note, I finally was able to meet Estephany's daddy and baby sister. Myron took a picture so hopefully we can get it on her site soon. The baby is just over 1 but she looks like a 2 year old, very cute too!

Estephany is now just a few doors down from us. We talked to her and she is feeling better. Her liver counts are still off but she is progressing:) That is good news.

Well, I will update in the morning. I had forgotten to put the blood counts on today's update so I just added them too.

Love, Tracy









January 8, 2006 1:50 PM
WBC 2.93 (low)
HGB 8.9 (lower)
PLT 403 (up some)
ANC 990 (up some)
Creatinine 0.2 (good)



Hello:)

First, thank you so much for your prayers. About 5AM, Katia said her eyes were feeling better:) Today she has been squinting a lot and not really wanting to watch TV. She took a nap and right now is playing with a little doll and not complaining about anything. Myron and the girls are almost here so that will definitely perk her up:)

I think her problems are coming from a mixture of GVHD, sinusitis, and just sensitivity to light. She has had a problem with lights for a good while but hopefully when the sinusitis clears up, some of this pain will go away.

The plan is to get her new port put in Tuesday, have an eye exam while she is sedated, get a bone marrow aspiration, lumbar puncture (checking the status of her remission and marrow), do a skin biopsy on an area of her hip and take the temporary line out of her arm:) She will be very happy to get rid of that! She is scared to do anything because she keeps thinking she is going to snag it on something.

Since her kidneys are doing well, they are going to take her off the IV fluids for about 8 hours each day which will give her some free time to roam around her room. I am thankful that Katia is so easily amused when she is in the hospital and stuck on her bed. She is quite used to it really. She gets up to walk around but she has a hard time when she is connected to the IV pole. The line for her antibiotics is a short line.

So, I guess that is about it for now. Her blood cultures continue to come back negative (great) and her stool specimen is still waiting for its final results (takes about 5 days). I am really hoping to be out of here and back home for next weekend:)

Thank you so much for taking the time to drop by and for not only praying for Katia but for asking others to pray for her as well.

Love, Tracy

PS Katia has something to add:)
She says she is learning how to spell things and when she is 6, she is going to learn to read!! She really wants to learn to read.


*******

January 7, 2006 9:23 PM
2nd Update today...

I need to ask your prayers for something.

Katia's eyes are REALLY bothering her tonight. This is happening more and more often and each time seems to get worse and last for longer.

She did have the MRI and her optic nerves look good and the tumor behind her right eye has not shown any change or growth (which is very good). This pain is not just in her right eye though, it is both.

She saw an eye doctor last night, a new one for her. Of course she wasn't at all agreeable and we weren't able to use the dilation drops but he did get a decent look at her eyes and we discussed what her issues have been.

He feels this is GVHD related. I think he is still planning to come see her while she is sedated because they still need to do the tear test and I think dilate the eyes and look further. Katia is just so hard to do an eye exam on and even worse when she doesn't feel good.

My problem is GVHD related or whatever, I hate seeing her go through so much pain and more and more often.

Right now I am sitting in the dark, no TV, no lights on and the blinds to the hallway are closed. She says if she can just close her eyes forever and keep the lights away, that she will feel better. That just breaks my heart. I can deal with a lot, more than I ever thought I could deal with but I just know she must really be feeling bad to say that. We are trying a dose of morphine to see if that helps at all but I am thinking she will just have to let some time pass and get over it on her own. But then, I just know it will come back again and again.

So, I am asking you to pray that we can find the source of this problem and treat the source of the problem to keep this from happening. I usually have her sunglasses with me but I don't until tomorrow now. This is the first time I think that I have left them at home. I don't really think they would be helping her much this time but they usually are a comfort to her.

Of course, I am researching this and I am talking to the different doctors about it but it just needs to be something that comes to one of us that we can have a "light click on in our head" to put our finger on this. At least if it is GVHD, what will make the symptoms stop, at least the pain and the light sensitivity.

Well, I think I have gone on enough but it is just very concerning to me since it is her eyes.

Thank you so much for your prayers.

Love, Tracy


*****

January 7, 2006 11:30 AM
WBC 2.84 (low)
HGB 9.0 (low)
PLT 393 (good)
ANC 950 (low but better)
FK506 4.7 (low)
CREATINE 0.3 (good)


Good morning:)

We are here just letting some time pass and wait till the weekend passes. Katia's counts improved in some areas and went down in others. The good thing is the WBC and ANC didn't drop anymore. They went up which is a good sign that her marrow is doing what it is supposed to do. Smart marrow:)

When we are home, Katia tells me what she would get off the hospital menu if we were here and when we are here, she says what she would be eating at home. Of course, she doesn't follow through with either.

Home=Macaroni and Cheese
Hospital=Spaghetti or bagels with butter

She doesn't change much on the eating end. She is eating sufficiently and drinking sufficiently so that is a really good thing.

Yesterday afternoon a runny nose came out of nowhere along with sneezing and coughing. I thought, "Oh no, here we go again." But, after one dose of medicine, she cleared up and remains clear as long as we keep her on the medicine. I am thinking it is just more sinus drainage since she still has quite a bit up there. So, we want it to drain out and get out of her head:)

In going around to different sites, there are many that need your prayers. I know that Ms. Julianna Banana has been dealing with fevers and Kody has been dealing with headaches. Cam is back on treatment and Christi T. is starting a new treatment due to cancer progression. Emily L. continues to do some very harsh chemo to be able to move forward with her upcoming bone marrow transplant. I could go on and on but I am doing this out of the top of my head (which has only had a small bit of coffee and a complete lack of sleep) so please continue your prayers for not only our Caringbridge Family but for all of those facing these battles all over the world. Also there are so many out there who face the loss of their loved ones daily and I can't imagine that pain ever going away. There are many kids that I followed from the time I started Katia's site back in November 2002. I still think of so many of them, that are no longer with us, on a daily basis. I am grateful for having the opportunity to "know them" through their journals and pictures.

Coming up here on the floor always reminds me of others that were once up here going through treatments that are either home now or no longer with us. I know even when they are home, cancer coming back is alway a concern for them so we keep them in our prayers as well. I see new families up here and I just know how much their "world" is about to change and I remember back to when we were first confronted with all of this. It isn't just the patient that is suddenly thrown into this world but it is their family, extended family, friends, family friends and all of the nurses and doctors that are brought into this.

I have just been reflecting a lot over the last few days as I think back 4 years ago when Katia hit her head and her eye started swelling. She was just a baby and now, she is about to turn 6 and very very wise for her years. She has gone through so much but yet she is still the most loving, happy little baby to us:) She still has that "sparkle in her smile" and I am grateful that God has given her the strength to continue to fight and be happy all at the same time.

Well, Katia just got something to paint from the craft cart and unless I want a big mess, I better help her open up the paints:)

Thanks for taking the time to stop by and check on her progress and for sharing this journey with us, each step of the way, good, bad and boring:)

Love, Tracy






January 6, 2006 10:50 AM (NEW PICTURES ON THE PHOTO PAGE)

WBC 2.53 (lower)
HGB 9.5 (lower)
PLT 420 (still good)
ANC 760 (lower)
Blood Cultures NEGATIVE (good)

After a rough start last night, Katia finally found comfort after some morphine and benedryl. She snagged her arm on her pajamas which pulled the line some. It didn't do any damage but it really really hurt.

She wrapped the brown shirt around it and said that made it better...

Then we had some severe eye pain that went on for about an hour or so. She wrapped the brown shirt around her forehead and eyes and fell asleep that way.

She woke up, feeling well this morning:)

As I type, she is waiting for some bacon and a bagel with butter. She does like ordering from the menu so she can get what she wants. Yesterday was no fun because she wasn't allowed to eat until after the MRI so today, she is making up for it.

Although her counts came down some more, she appears to be about the same. She is a little on the pale side and tired but she is playing okay on her bed and plans to do some painting today.

We are planning quite a bit for Tuesday I think. The day may change to Monday or Wednesday but right now the plan is to go to surgery, put in a mediport, do some skin biopsies from some areas on her hips that have been looking bad, do an eye tests to check for her tearing ability, have an eye exam with the dilation drops (maybe) and go ahead and do a bone marrow aspirate and lumbar puncture to check her status of remission. Trying to get a lot done with this sedation.

Her MRI shows no eye problems with the tumor so we are believing this is due to the GVHD of the eyes and probably dryness. I think it is a little of both.

We also sent off some stool (poopies) for culture and more blood labs today. I told Katia she is getting her 100,000 mile checkup:) She is nearing that two year anniversary of her "New Blood" so we need to know the status of everything.

Speaking of numbers, two million visitors to the site is just around the corner! Can you imagine? That is just amazing. Words can never express the appreciation for everyone's love and prayers but I think you know how much you are appreciated. I am just thankful to be able to share Katia's journey. The ups, downs and in betweens...

I will be back later with an update. I think it is time to get some coffee is my system:)

Love, Tracy

PS For those of you who know about the bridge at the hospital, I have walked out there a few times. It is so nice and peaceful and I am just grateful to have spent so much time at home, not needing the escape to the bridge. But, when we are here, the bridge is a welcome escape with a cup of coffee.








January 5, 2006 7:50 PM

Good evening...

What a long day but it is behind us now.

Here is where we stand. Hopefully Katia's counts will start to come back up since her broviac is out, yes it is gone... she misses it and she was quite upset they took it.

She had her MRIs, around 2PM, and when she woke up, I came in and she starts peeling off her namebands on her arms (she hates wearing them) and looked down her shirt since she felt something different. She says, "They took my broviac!" Then she shows me her right arm where they have a temporary line put in and said, "This hurts!" and just started crying and crying and screaming. I felt so bad for her. I wanted to tell her before everything they were going to do to her but I knew she would just worry and get nervous. I did tell her they were going to have to take her broviac out but I didn't tell her when. Now, I feel bad.

But, after a dose of pain medicine and then showing her the arm line works like her broviac (they don't know if it will allow them to draw blood yet), she is okay with it but says it really hurts a lot and her chest hurts where they pulled out her broviac. They don't do an incision to get it out, they just pull it out (ouch!)

She is eating well (a whole plate of spaghetti and some bacon) and drinking okay though so that is good.

The plan is that her blood cultures have to be negative of any infection for 3 days and then she can get her PORT. We have basically decided on the Mediport. Since she is getting older and we can more reason with her, we talked to her and we think she understands everything about it. It will take getting used to but hopefully it will be a better choice and have less risk of infection. Either way, we could run into infection or other problems but this seems to be the more sensible decision at this time. Katia is still on a lot of immune suppressing drugs so we really have to protect her from infections as best we can. In discussing it with her doctors (a few times) we all agree on the Port.

Hopefully she can get it in by Tuesday, maybe Monday and then we will be "back in business". She is going to need an IVIG infusion soon (the 5 hour infusion) because of her immune system dropping down so hopefully we can have it by that time. Plus she will be due for more Pentostatin next week. The PORT can be used for both infusions and drawing blood. Katia got to practice with a puppet on how the PORT will work. She says she is nervous but she will try. It isn't like she can just try and change her mind though so ultimately we have to make the decision that we will stick with and she will get used to.

Not much else should go on over the next few days and hopefully her system will show recovery soon. I am thankful this was caught when it was or we could have been rushing her here via ambulance and been in septic shock in ICU. God has definitely always helped us stay one step ahead of Katia's needs and her doctors have always been there to run the needed tests and think ahead of the game. We are so blessed by that.

Estephany is also improving. She needs to continue showing improvement to be ready for transplant but we are glad she is moving along. I think bringing her daddy and sister here was a boost she really needed! I am sure it is good for her mom to have them here! Estephany even won an ACH BINGO game tonight. We were playing and heard her call in.

Katia was happy that she got to call in on the birthday line since her birthday is this month. She was so excited to hear herself on TV and they waved to her:) She is looking forward to turning 6 years old but she says she doesn't want to get bigger yet? I guess she really likes her size since we can still pick her up and carry her and she is just really darn cute:)

Well, this is long enough. I will update more tomorrow with her new counts and hopefully with the news that her blood cultures are still negative.

Keep praying and thankyou so much for being there for Katia and our family. I still have this headache so hopefully sleeping tonight will send it on its way. I feel like a big baby complaining about it but I am just not used to headaches (which is a good thing to be able to say). Thank you for all of your messages. I just read them to Katia a bit ago before updating and I do check throughout the day. I did get a chance to get around to some sites today which always makes me feel better to check on others.

Love, Tracy








January 5, 2006 12:41 PM

Still waiting...

Katia did get some balloons delivered from Hugs and Hope so she is entertained. She is telling everyone who enters that she is HUNGRY.

We have gone over the mediport idea with Childlife with Katia. We are still weighing both options and are leaning one way. Not going to say yet until we really decide and we finish discussing it with her doctors.

I have got a headache right now that just will not leave me alone. I am not really a "headache" kind of person so I don't hardly ever get them. I can't complain I guess.

I have the TV on the hospital's movie channel so there are no food commercials. Myron is here and he keeps Katia pretty entertained and can side track her from her thoughts of food.

I will update more later, hopefully after the scans. If you haven't read today's previous update below, it explains more of what we are doing.

Love, Tracy

PS Myron is actually visiting with Estephany right now. Hopefully he can get some pics of her daddy and sister if they are in the room right now. Please keep Estephany in your prayers. She isn't able to walk right now and is sitting up working with Physical Therapy. She has a long way to go to get back to the health she needs to be for transplant but she is working hard.







January 5, 2006 9:00 AM
WBC 2.78 (low)
HGB 9.6 (low)
PLT 449 (good)
ANC 800 (very low)
Bun 10
Bun/Cre Ratio 33
Creatinine 0.3
IGG 546


We thought we were off to MRI but there is a delay which delays us until about noon or so. Hopefully not too long because Katia can't eat or drink until afterwards.

Her counts are really low which is concerning but hopefully the source of her problems is infection and will soon start clearing up. Yesterday her WBC seemed to jump up but then today it is gone again and her ANC is even lower than before?

I took some pictures of Katia's broviac as I know she is going to miss it. She hasn't reached the point of understanding she won't have it after today and we haven't made up our mind on the broviac/mediport issue. Childlife is going to come talk to her about it today and show her what a mediport is and how it works. We will see what she thinks of it.



So, right now we are just waiting...


Love, Tracy





January 4, 2006 6:30 PM
WBC 6.47 (normal)
HGB 10.0 (low)
PLT 486 (high)
ANC 4700 (good)
BUN 23 (high)
Bun/Cre Ratio 77
Creatinine Serum 0.3 (fine)



Well, we are settled in our room.

Katia is watching TV right now so I thought I would update.

The plans are (and may change) to do an MRI under sedation tomorrow. This is to check the eyes, brain and sinuses. While she is under for that, have a surgeon remove the broviac.

Now that leaves Katia without anything for her IV needs so either a PIC LINE would be put in (this can last her for about 3 weeks) or not. That is up to what they think.

Then the plan is, once this infection is cleared up, to either replace her broviac with another broviac or a mediport.

A mediport is under the skin so nothing is on the outside and less likely to get infected. The downside is that everytime you need to use it, you have to poke through the skin with a needle. We could use numbing cream for this.

The broviac, which is what she has had since April 2002 has really not been an infection problem for us. She is used to it and so are we. I do see the point behind the mediport. It allows them to bathe and swim. I told Katia that and she said, "I don't even know how to swim..." She just looked at me with these puppy dog eyes. She likes her broviac because she "knows" the broviac. She is used to it.

Myron and I both feel Katia can get used to anything and we are going to more leave it up to her doctors at this point. Whatever they think is best for Katia. I can practice using the port on a doll or something until I get comfortable with it.

Neither the port of broviac would be reinserted for a few weeks until this blood infection is gone. Which would hopefully mean she would go home and let that time go by and then return for that surgery in a few weeks.

So, please pray we ALL make the right decisions and things can go smoothly.

One thing I have learned over the last four years? Be flexible and don't plan too far ahead...

Thank you for your guestbook entries, they really do encourage us:)

Love, Tracy








January 4, 2006 2:39 PM

Well, we are being admitted as I said in the previous entry.

She has a Gram Negative Rod bacteria growing which explains her WBC count dropping.

They also say her broviac needs to be replaced so she will probably be in surgery for that tomorrow or Friday as well as the MRIs and other tests needed.

I will update more when we get up to the floor and in our room.

Please pray things will stay stable. We had a lot of problems with the last time she had a new broviac in October 2004. She had a lot of ongoing bleeding issues.

I will update later.

Love, Tracy


********

January 4, 2006 11:30 AM

We are headed back in for an admit.

One of her cultures from yesterday has already come back positive.

I changed Katia's counts around below because they were resent to the hospital to double check to make sure they were right. Well, it was actually lower than the ones we were already concerned about.

This could all be tied together with the fact she now has an infection but bacterial infections usually bring up the WBC not lower them.

Anyway, Katia is mad that she has to go back in so I need to go help her pack a few things. She just wants to be home.

We all have to do what we have to do. I know Myron is going to be upset and so are the kids. They hate when this happens but we have been going through this the last 4 years and all in all, Katia is doing well and we are thankful for that. The bumps in the road are just that, bumps in the road.

Please pray this is a short trip and that Katia will continue to eat and drink like she is supposed to. My biggest concern is that her kidneys will start acting up again with more antibiotics for this new infection but I know her doctors will do the best they can and then some.

So, add Katia to your prayer list and I will update more later from the hospital.

Love, Tracy









January 3, 2006 1:57 PM

WBC 2.8 (quite low)
HGB 10.1 (going up but still below normal)
PLT 467 (still high)
ANC 1058 (low)

I am going to have to do a quick update and I will be back later when I know more about Katia's counts.

I am a bit worried due to her running these low fevers and now having a low WBC count? I am not sure what is up with that. She is in bed right now not feeling too well.

We did do blood cultures to see if there is anything showing up in her blood and we should hear back from that tonight or tomorrow.

Katia has been having a lot of ups and downs lately and I would like to see her stabalize out. We are still waiting on the schedule for the MRI and bone density testing but they are hoping to have that done this week as well to check on why Katia is having so much eye pain and what is going on with her sinuses now.

I will be back in a bit.

Love, Tracy










January 2, 2006 7:00 PM

Hello there in this New Year:)

Things here have been anything but boring these last few weeks. We stay busy busy busy. That is good though.

Katia is still only allowed to go between clinic and home but we have had one of Myron's brothers visiting as well as my dad in town so our house has been quite active. Katia has been having issues with lowgrade fevers and eye pain but when those aren't bothering her, she is happy and playing. I wish I could take away that eye pain for good. It gets really bad and it just breaks my heart because we really can't say exactly what is causing it nor what we can do to make it go away.

We go to clinic tomorrow just to do labs and find out when Katia will have her MRI done of her brain, eyes and sinuses as well as the bone density test. Both things really need to be looked into.

Katia was happy and singing when I started typing this just a few minutes ago and is now laying with her hand on her eye because it is bothering her. These past four years, she has gone through so much. All of this started shortly before her 2nd birthday and now she is about to turn 6 on the 26th of this month.

We are thankful Katia not only remains in remission but that she is also eating good and drinking good again. We are thankful the kidneys seem to be functioning normal again. We have so much to be thankful for. As parents, we just want the best for Katia and we want to see her happy and feeling well. As far as the freedom to go places and eat things, that day will come when it is right. She knows that just like we do. She doesn't want to do ANYTHING that could harm her "new blood" so she really doesn't give a hard time about not being able to go places or eat certain things. She is very protective of that new marrow.

She is nearing her two year anniversary of her Bone Marrow Transplant:) Two years into her new life.

If you look at the picture at the top of the page, the one that Katia is sitting with Ronald McDonald? That is Katia's 2nd birthday. That is when her right eye started showing signs that something was wrong. Things changed very fast in our world over the next 2 months and then in April of that year, everything came crashing down when she was diagnosed with leukemia.

I look back over that now and I think that God prepared me for that diagnosis. I have always been one to be inclined to listen about cancer and cancer studies, childhood diseases and I have just always had my heart into that even though I wasn't affected by it personally. I never thought I would be dealing with one of my own children facing cancer but I am thankful I do not have to walk this road alone by any means. I have told many people I wished no other family had to go through this. I wish cancer didn't even have a name because it was so rare. I wish there were no needs for hospital telethons and cancer research. BUT, I am grateful so many are involved in making more treatment options and eventually finding a cure. I am grateful so many people have a place in their heart to help those going through this. I feel so bad that so many have not survived this fight and that scares me. That scares me more than I thought anything could ever scare me.

I chose to share Katia's story back in November 2003, via this website, to help put a face with leukemia and to help others see what this fight was about. Not just those that are suddenly confronted with the same situation but also those who were not. What I have learned over the past few years is just how MANY are affected by cancer, either in their own families, their neighbors or people in their community but also those that research, donate, run marathons, raise funds, show encouragment, and just so much else to help those fighting. I have learned so much in this journey that I never knew we would be on. I thank each of you for following and being a part of this journey with us:)

Love, Tracy








December 31, 2005 10:44 PM

Myron's message to you:)

Hello everyone!!!

There are only a couple of hours left in the year and I had to take the time to say THANK YOU so much for making 2005 a very special year. You are all such a major part of making each step of our journey memorable and full of love and friendship. Thank you for making the Christmas Season so bright for Katia and the rest of our family, your cards, gifts and sweet messages are so appreciated. It is my prayer that God will give each and everyone of you a New Year full of Peace, Love, Health and Happiness. I look forward to a 2006 full of miracles and the chance to share with others Hope... It is all we have right? Thank you so much for being there for the Solomon's, God bless you and bring you a Happy, Happy New Year!

Luv always, Myron (Daddy Bug).




December 31, 2005 6:25 PM

Hello:)

I have been wanting to sit down here today and write a New Year's Entry for closing out 2005 and welcoming 2006.

BUT, I seem to have caught "the cold" that has been traveling around our family. My plan is to send this thing packing to somewhere far away! I never ever catch colds but, I guess I can't say that for a while now.

Katia is out playing on the back porch with Tatiana right now. She is laughing and having so much fun. She keeps saying, "OOOHHH" each time she hears a firecracker go off:) She has been out there playing with her Dora House for the last 3 hours or so.

Katia has been having a few issues lately that concern me so it is always nice to see her just being herself. Last night, I feared we would end up at All Children's. She was playing around with a fever but it never reached the point to call the doctor. 37 is normal, 38 is a phone call. She got up to 37.5. Then it came down on its own. I was VERY THANKFUL for that because she really really likes to be home, who wouldn't?

Hopefully it was due to the Pentostatin treatment along with throwing up the day before and not something brewing in her system right now. If that is the case, then she shouldn't have any more problems tonight. She was laying next to me last night, feeling warm, her little heart racing and she was breathing fast. I just started praying for God to keep His healing hand on her and let her sleep comfortably. I could tell she didn't feel well but she was trying to not let me see that. Not more than 5 minutes after I prayed, I felt her head and she was clammy feeling, breaking a fever.

Yesterday, she slept until 1:00 PM and today until around 11PM. When she woke up, she was happy to realize she was still home:) It was cute. She looked around and then got a big smile on her face. So, please pray she doesn't face this again tonight.

Also, please pray for Sara, Estephany's little baby sister. She has a cold right now and she needs to be very healthy for when Estephany is healthy enough to go forward with transplant. The transplant will remain in question until it is seen that Estephany is progressing and getting over these hurdles she has been having lately. They are worried about the brain bleed being due to weak blood vessels but due to her weakened condition, they can't test the vessels' strength. Her liver has also been having problems and there needs to be improvement there also. She has been able to start drinking some sprite on her own and keeping it down so hopefully this will progress each day.

I think the thing I have learned most over this past year isn't something new to me but something that has become even more clear to me. The power of PRAYER! There have been so many prayers answered. Not only for Katia but others.

Then, I think of those that have not come through this year and it truly breaks my heart. I trust that someday, I will fully be able to understand why so many people do not overcome these diseases. I really can't make sense of it on my own. All I can do is have faith and continue to pray. My prayer for Katia remains the same. I pray that she will some day be sharing her own story in front of a crowd of people. I pray that she will be an adult and be able to help others. I pray that cancer will have found a cure by then so that she won't be speaking to people fighting cancer but to people who have overcome cancer, like her.

I always pray for Sharayah and Tatiana's health and I am grateful for how far they have come in these last few years. I know all of this has been a real strain on them but I see that they have grown from this. I am thankful that God brought these 3 little girls into our lives because I couldn't picture one without the other. They all 3 need eachother.

Of course, I am thankful for Myron! What would I do without him? I couldn't imagine. I don't want to sound too "sappy" but Myron completes me. He is a lot of things that I am not. I can honestly say I am surrounded by a family that loves me and needs me. What more could I ask for?

I am so grateful for each of you, that check on this site and pray for Katia, our family, and those that we post prayer request for. You each mean so much. I feel like I know most of you through your guestbook entries. I love hearing from each of you, we all do! We are like a "worldwide family":)

We went and visited Jerry last night and he is home, improving. They are happy to have Jerry home for the holidays. He is looking well. He needed some platelets yesterday and they are adjusting some of his medications around. Their family so much appreciates your prayers and encouraging messages as well:)

God bless each of you. I hope 2006 brings so much to your life. We would love to hear what you have taken from 2005 and look forward to in 2006.

Love, Tracy:)
Until next year....





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December 30, 2005 10:23 AM

Good morning:)

I am sorry I didn't drop in here yesterday and update. Things have been nonstop with Katia lately and just so many other things going on.

Katia had a good visit to clinic yesterday and did receive her Pentostatin Treatment! I am glad to have her back on that treatment as we can now see it is working. GVHD seems to flare up while not on the Pentostatin.

However, the bad thing from the treatment is she was naseated most of the night. She came in our room throwing up around 4AM and kept it up every 30 minutes or so until around 8:30 AM. Needless to say, she is resting now. The Pentostatin is a type of chemo drug that targets killing off the lymphocytes. The lymphocyte count is what increases with the GVHD flare ups.

Right now, Tatiana is laying with her in case she wakes up. Katia doesn't like to wake up and be alone.

As far as her platelet count being high, her hemoglobin being low and her White blood cells going up and down, we are figuring this is all due to the sicknesses she has had lately and her marrow needs to recuperate.

Her eye pain is causing some concern because it is also seeming to "bulge" at times so our plans in the next week or so is to do a bone density test (to check what damage has been done by all the steroids and to see about her hip pain), an MRI of her brain, eyes and sinuses, a possible eye doctor visit (depending on the MRI results-Katia hates going to the eye doctor), and to wean her the rest of the way off the IV Fluids. We are also building her FK506 level back up. It was around 4 yesterday and we need to get it back up around 10 to protect her new marrow. We will go back on Tuesday for labs and whatever other things are scheduled out of the list of things she needs to get done.

Hopefully Katia will start off 2006 with a "clean bill of health" and feeling well. Please keep these concerns in your prayers.

Estephany is awake!!! She has seen her daddy and was so happy. I have not heard what is going on with her yet today but we are praying her liver functions will improve now that she is awake and can eat on her own. Her mom was so happy to be reunited with her baby. She was only 5 months old when Estephany and her mom came here for treatment and now the baby is just over a year old. That is a long time but we are so happy they are all together right now. It is our prayer that things will improve with Estephany's health and they can move forward to transplant and get their lives back. Estephany requires a lot of prayers right now for improvements. I am so grateful to those who have passed her name on amongst your prayer chains and those of you that continue to check on her via Katia's and Estephany's website. With Estephany's health, things can change for the good or bad suddenly. Prayers are her best hope right now. The doctors and nurses do all they can do for Estephany and the family. We will try to get some family pictures on her site over the next couple of days. Myron has been trying to get over a cold that just seemed to keep getting worse for a while before returning to the hospital. He is feeling somewhat better now and I know he is anxious to get back over there.

Thank you for your patience on updates:)


Love, Tracy










December 28, 2005 8:55 PM

Good news:)

Estephany's Daddy and baby sister arrived!!!!

We are so glad they have finally made it here, safely and the family can be together.

Estephany is still not out of sedation but the plan seems to be to start waking her up. She is having liver issues right now and one hopeful way to help that is for her to be able to eat regular food. They still aren't sure as to whether she suffered any brain damage from the bleeds but that too can be better determined once she is awake. Please keep them all in your prayers. I am sure it will be a very difficult moment when her dad sees her all hooked up to different machines and such.

We had clinic today, here are Katia's counts:

WBC 7.46
HGB 9.8
PLT 548
ANC 6110
CREATINE CLEARANCE 104.60 (back to normal!!)
CREATINE SERUM 0.3 (much better!)


That is about all the counts I have today. Her weight has stayed the same which is good.

We are very happy to see Katia's kidney function return more to normal. Tomorrow she WILL get her Pentostatin dose which seems to be very needed. She has had some new areas of GVHD to pop up just in the last day or so as well as some areas of "concern" other her arm pits and on each of her hips. She has been complaining that her hips have been hurting so she is going to get a Bone Density Test done. She has had a LOT of steroids which can definitely cause problems with bone density so this is a great concern to me but I am also concerned with what appears to be a type of hardening or scarring of her skin on her hips. It is a pretty large area on both hip bones. We will look further into it tomorrow. Please pray this does not become an added problem for Katia as she is very much enjoying her freedom of being able to move around. She still can't stand up on her own to well but she can certainly move around on her own. She hasn't been able to run yet but she has a way of scooting fast:)

My other concern right now is that her platelets are so high and her hemoglobin is low? I am not sure what really to make of that but that is also new in Katia's case history. We have never had that problem in the past. I have been researching it which lets me know better what questions to ask so hopefully we can see an improvement in this area.

Good news on Katia is, she is DRINKING MUCH BETTER! She is nearly back to normal so we are going to start weaning her off the IV Fluids at night. She will like that as she hates being plugged in and not able to get around. The IV Fluids and machine came with a back pack BUT the IV Bag is nearly the size of Katia's body so it is too heavy for her to do anything with or even Sharayah and Tatiana. I can get her to the bathroom and we all work on transferring her around but it will be nice to be able to wean the fluids. After tomorrow's Pentostatin dose, we will more see where her kidney function stands. We also need to increase her FK506 dose back up to where it needs to be now since her kidney function has improved. That is her anti-rejection medication and is very important for her to have a certain level in her blood to keep her body from rejecting her new marrow.

Well, this got a lot more lengthy than I thought but hopefully it will let you know areas of prayer needs and thankfulness:) Thank you so much for all your prayers on getting Estephany's daddy here. It was her Christmas wish and since she was sedated during the holidays, she is getting her wish. She remains in critical condition and her family greatly appreciates your prayers.

We go to clinic for the day tomorrow so please pray all goes well:)

Love, Tracy





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December 28, 2005 12:25 PM

Just wanted to jump on and let you know, Estephany's Dad and little Sara should be here this afternoon!! Please pray for their safe arrival.

Love, Tracy

PS I will update again after Katia's clinic visit this afternoon.









December 27, 2005 11:05

Good day:) OH, it is still "Good morning"!

Katia is plugged into to her IV Fluids and playing her VSmile, Sharayah and Tatiana are playing some games and it REALLY seems like 2 days past Christmas. I think the companies who makes the most money at Christmas, the companies that manufacturer batteries for toys!!

Someone asked me the other day about Katia's electronic learning games and which one I liked best.

Well, let me summarize. We use those "Educational Electronics" A LOT!!

I always look for something that is both fun and educational but that won't become boring.

Katia has a computer she uses for school and we use "JumpStart" programs on that. They work for both MAC and PC and each disc is usually by grade, VERY user friendly and the child can basically teach themselves how the program works with the computer. Tatiana started at the age of 3 with the jumpstart preschool and I never had to teach her how to use the mouse, make selections or anything. It is very kid friendly and has a lot of education on each level.

With both Sharayah and Tatiana, they had those little laptops made for ages 5-8 and they were very useful and easy to take along. However, they ate up batteries but I still really liked what they had to offer.

Now with Katia, our millenium baby:)

She has had the Leapster for quite sometime. She didn't catch on how to use it until maybe just under a year ago and she LOVES it! They have so many activity disc and it has a very clear screen, easy to use buttons and a good battery life. We recently got the charging pack but we haven't used it enough to see how long the charge really will last. What I like about the Leapster is the ease of putting the cartridges in and out, the small size of the cartridges and the durability of the game and parts. We LOVE the Leapster!

Katia also had a VSmile console that plugged into the TV and had the large, easy to use, joystick. She really loved the game but since she had to be in front of the TV, she didn't like to play it unless I was in the Living Room with her. She stopped using it so much because of that although she really liked the fun games (which are also educational). So, they came out with the portable version of this which you can also plug into your TV. PROBLEM SOLVED!! She hasn't put it down since Christmas. She takes it to bed with her, no joke.

The VSmile has a good selection of games up to about age 7 and then the selection tapers off. The cartridges work in both the console and the portable units. I haven't been able to find the recharging pack in a store but I am eager to get it to save on batteries. She uses this VSmile a LOT! But, it doesn't do too bad on the batteries, considering.

Last but not least, the GameBoy. Sharayah and Tatiana have gameboys and Katia has basically taken over one of those for clinic. She didn't get into GameBoy until maybe 7 months ago and she found out she was quite good at the games, even the games for Sharayah and Tatiana. The best thing about the Gameboy is it has a HUGE selection of games (hardly educational but very entertaining!) and it is so compact, I can stick it in my bag any time we head off to clinic. It is rechargable and the charge last a very long time.

Okay, I know I sound like a Consumer Reporter but I thought that was a good question and as parents, we all like to share ideas:)

Tomorrow we go to clinic. We are collecting urine all day today which will be tested tomorrow for the Creatinine Clearance. I am really praying to see a HUGE improvement with this number too as well as more of an improvement with the Creatinine Serum test that we tested this past Saturday. We will check that tomorrow as well.

Katia's feet were looking quite yellow these past few weeks and they look much better so I think things are greatly improving overall.

She hasn't had her Pentostatin Treatment for nearly 4 weeks and I really hope she can get it on Thursday. She had a pretty rough night last night with her belly hurting and going to the bathroom quite a bit but this morning, she seems much better:)

If you haven't seen the Christmas morning pics yet, they are in the Yahoo Albums (link at bottom of page).

I will update on Estephany and Jerry later in the day when I know more. Estephany's dad is scheduled to get his passports today and we are going to try to reschedule his plane reservations for the end of the week at least.

Keep these two families in your prayers.

Love, Tracy









December 26, 2005 12:32 PM

I am working on pictures to put in the YAHOO ALBUMS so give me a bit of time and they will be up in there, Christmas 2005!!

Love, Tracy








December 25, 2005 7:00 PM

First, I hope each of you as blessed a Christmas as we did:)

We started by having our Christmas Dinner last night and then Katia was eager to go to bed so Santa would visit!

Believe it or not, none of the kids woke up until I woke them up around 9:00 AM.

Katia's morning is full of taking her medicines and eating and just getting ready for the day so we didn't get through with that until nearly 10:30AM (that is a long time for a 5 year old!)

We had my dad here and Myron's youngest brother. We sat around first and shared the Christmas story and talked about how lucky we are to have Katia here and how many more people we know that are not at home or have lost family members over this past year. We prayed for everyone including those we know with health battles as well as our families abroad and our friends that were not here with us.

We are so very grateful to have so many close friends and to know that so many are lifting our family up in prayers. Prayers is what has us here, together, today, at home and not in the hospital. THANK YOU!

Then of course, the kids got into gifts!! They had a great time and of course we, as parents, love to see our kids happy. This was Katia's first Christmas like this. She was feeling GREAT this morning, full of energy, happy, anxious and just so excited!!!

She got what she wished for. She even got some things she didn't ask for. In her words, "Wow, I didn't even ask for this!!"

She was so so so so happy!!

We got everything all cleaned up and had some Christmas leftovers (the best) and sat down (ahhhhhhhhh)!

Then Katia played around with some of her toys and of course, fell asleep. That is a lot for a 5 year old to have to go through in a day.

So, tonight is here and we are so thankful to have had such a good day. We are thrilled!

Katia is plugged into her IV fluids and playing on the sofa.

I must share the latest on her kidneys with you. Her Creatinine (which we need to see around 0.3) has gone from 0.6 down to 0.4!!! This is a great improvement! We got back on Wednesday for the full Creatinine Clearance test as well as a repeat of the Creatine Serum but that was good news for us yesterday. It means the fluids seem to be working and we can hopefully get her the next Pentostatin Treatment for her GVHD on Thursday of this week.

I have to share this with you. Last night when I went to bed, I prayed for Jerry and Estephany. Estephany is stable, still sedated and Jerry was able to come home yesterday evening in time for Christmas. They do not know what caused all of his problems but the brain scans appear to be clear.

Well, I prayed for them and others and then I started to give God thanks for ALL he has done for us. The list goes on and on and I actually fell asleep giving thanks. It is normally very hard for me to go to sleep, takes hours, but last night, it was very easy and I fell asleep, peacefully thanking God:)

Love, Tracy






********

December 23, 2005 10:30 PM
3rd Update today...

I have another very important prayer request for Jerry Gomez who is back at Moffitt from this afternoon.

Basically he was just not himself and he was taken back to Moffitt where his conditioning was worsening. They did brain scans and ran some tests. No results yet.

His wife is now there with him and his three children (7 years old) are very worried for their daddy. This is all happening right here at Christmas, a time that is usually filled with joy and peace. They need prayers for Jerry's improvement and for these tests to reveal some answers. He is basically non-responsive at this time and unable to care at all for himself.

Please keep him in your prayers.

If you have missed the two earlier updates today, please scroll down and read those requests also. Today is a day in which many prayers are needed.

Love, Tracy







December 23, 2005 6:36
2nd update today...

This just in.

These kinds of things just really turn things for a loop.

Estephany's dad was told to be back at the embassy today to pick up the passports and visas at 3PM.

They show up, the place is closed tight. They will not open again until Tuesday!!

There goes the holiday Christmas wish for Estephany BUT, the hope is to get them up here now next week and to move forward from there. MAYBE Estephany will have improved and that is our prayers, that things do not worsen between now and then. She wants so bad to see her daddy! We wanted her to have that CHRISTMAS DAY.

Please pray that there are no more bumps in the road for this family concerning these travel visas, airline tickets, and passports.

Please see Estephany's Page if you would like to help in anyway with these travels or with the family during this time.

Thank you so much for your prayers!! They are the most appreciated and needed part of this journey.

God bless.

Love, Tracy









December 23, 2005 5:50 PM

Just a little while longer till Christmas:)

Katia had fun dressing up today and taking the above pictures:) She wanted to surprise Myron with her pretty Christmas dress!

Her day has been filled with FLUIDS! She was plugged in all night and for the beginning part of the day but when she was unplugged, she finally went back out to play in her playhouse! YEAH! That was nice to see:)

All 3 girls were out there for a while.

Right now she is rearranging some Christmas Cards that "I messed up" so they can be back the way she had them.

I want to thank so many of you for sending out your prayers for Katia to feel better, her kidneys to improve and for all the cards and gifts that have been sent to all 3 of the girls. You have definitely given them a bright Christmas to look forward to.

Most importantly, we will be thankful to be here, all together, on Christmas morning:)

We go to the hospital in the morning for some labs to check if her kidney function is improving (hopefully it is doing better and not worse again) and then we should be able to look forward to 2 days off:)

Please keep Estephany in your prayers as she remains sedated and intubated. We plan on her daddy and baby sister arriving on Christmas Day!!! I am not sure what her status will be on that day but I am sure she will know they are there:)

Thank you for all your kind messages in the guestbook and I am thankful for Caringbridge for allowing us this opportunity to make this big world much warmer and so full of love:)

Caringbridge is a Non-Profit organization that works solely by donations and they have given us so much by allowing us this website.

I will update after the hospital tomorrow... (with good news hopefully)

Love, Tracy







December 22, 2005 1:15 PM

I have good, bad and more news...

Good news first!

Estephany's dad and sister have received the okay for travel!!!! They should get their passports tomorrow and hopefully up here on Saturday, we are really trying to pull some things together here quickly. Funds are very limited for these tickets at this time but we are hoping we can get something worked out with the airlines. Please keep this in your prayers. No more roadblocks!!

The bad is that Estephany was intubated last night due to breathing problems. For how long? I am not sure but hopefully this will keep her stabalized. Things with Estephany can go from bad to much worse in just a small amount of time. She is in critical condition and still desperately needs prayers for healing to get her to transplant.

Okay, now what is up with Katia?

Counts from today:

WBC 4.04
HGB 9.8 (low)
PLT 615 (quite high-never had this problem before)
ANC 2060
Creatinine Clearance 38.9 (see below)
Creatinine 0.6
BUN 8 (better from the 19th)


I could list a few more counts but the fact of the matter is, Katia's kidney function is not doing well so we were unable to have treatment. Her Creatinine Clearance should be between 95-125 but it dropped from 58.8 on the 19th all the way down to 38.9 today and her Creatine that we wanted down to 0.3 is up to 0.6. These numbers indicated her kidney function is not doing good.

So instead of being plugged into IV Fluids for 10 hours, we are going up to 15 hours a day and are going to try to put some of her medicines on hold until we get her kidney function back up. I am worried about this. I always say that I will let people know when I am worried and this is getting me worried. So, I ask that you please keep Katia's kidneys in your prayers.

We go back on Saturday for more counts, then Tuesday and hopefully she can get the treatment on Thursday if we can improve things this way.

I will update more this afternoon and tonight on Estephany. There was a news story about her on the Spanish Channel, Univision with her Mom doing an interview. I haven't seen Estephany for about a week now and when they showed footage of her, it just broke my heart how much weaker she was yesterday afternoon and now I know she is much worse off. So, please pray for this little girl to get her daddy and sister her (that was her Christmas wish) and to get her transplant so she can live a happy, healthy life with her family.

Love, Tracy










December 22, 2005 7:50 AM

Please please remember to keep today's appointment for Estephany's dad and sister's travel in your prayers. A LOT depends on how today goes as this is a life or death matter now.

Also, please keep Estephany's condition in your prayers. Last night her Mom called to let us know Estephany was coughing up blood and she was very concerned that things were turning around. Estephany was having breathing problems as well. We have not had a report this morning but I will update.

Katia goes to clinic today and please pray she CAN get her Pentostatin treatment. Her Creatinine Clearance from yesterday needs to at least get up into the 60's. Normal is 95-125. This treatment is very hard on the kidneys and we don't want to damage them further. At the same time, she needs the dose to keep the GVHD under control and to keep her in the study.

Katia is also getting a stuffy nose again so hopefully this doesn't become anything like the last time and land her a visit in the hospital. She had a hard time sleeping last night so we were awake until 2:30 or so.

I just want to see Katia get back to feeling well so she can enjoy Christmas and play in her house. Right now it is cold here so she can't go out much anyway but she hasn't even been asking. That lets me know she isn't feeling well enough yet. She would prefer either sleep or just lay low. She did have a pretty hyper 2 hours again last night and shuffled around some presents, reorganized the Christmas card table and even wanted to use my little vacume cleaner (she is taking after me with cleaning) but I told her to wait until she felt better and she could get back into vacuuming full force:) Mommy's little helper!

Just a few more days till Christmas. I went to the store yesterday and WOW! What a lot of people. I haven't been out in that much this year. Oh my gosh! I was looking for an Elmo for someone as a gift and there were two left. They both were picked up at the same time (one by me) and I guarded that throughout the rest of the store. That is for a very special little boy and I wasn't going to have someone take off with it:)

Well, I better pull myself together so we can get out of here to clinic. I take 10 minutes to get ready and it takes Katia about 20 minutes to wake up, 20 minutes to stretch, 20 minutes to get dressed and 20 minutes to gather all the "necessary" items she must take with her to clinic. We have to squeeze all those 20 minutes into one:)

Love, Tracy







December 21, 2005 4:44 PM
2nd Update Today

Prayers are getting answered!!

Estephany's platelets seem to be coming up and the brain bleed looks stable, no more active bleeding right now. She still remains in critical condition in the ICU with her Mom. Please continue those prayers and remember, tomorrow is the appointment for Dad to find out if he is able to travel here with the baby sister for transplant. An answer, "no" would be devastating.

Thank you so much for your prayers. Check back for more updates as I will update more this evening with an evening report.

God bless you:)

We are praying for a Christmas miracle!

Love, Tracy




December 21, 2005 11:52 AM

Here is a quick update on Katia. I will update a bit more on Estephany later today after Myron talks to her Mom. He did go by the hospital and visit with them yesterday and said Estephany looked very weak and tired. She is on a continuous platelet transfusion to try to stop the bleeding in her brain. This is a very critical time for Estephany as she has to get better before she is able to even move forward to transplant. Also, tomorrow, her dad has his next appointment with trying to get the travel visas for him and Estephany's baby sister Sara (Estephany's bone marrow match) so please please pray they get the approval. If they get the approval tomorrow, it is possible to get them here in the next few days before Christmas as we have been trying to raise funds for the tickets for some time now. Please pray they get the approval.

Okay, Ms. Katia.

Katia is still not eating or drinking much, not much at all. She used to gobble down her food (thanks to steroids) but now we have to force each bite and she says it hurts her belly. She says drinking more than a sip or two at a time, hurts her belly. Why? We don't really know. It could be due to sinus drainage from the sinusitis breaking up.

She finished her IV antibiotics yesterday so she didn't have to get them today and hopefully she will show some improvements in her kidney function tests. We are collecting urine all day today to take in tomorrow for another Creatinine Clearance test. Normal is between 95-125 but if it is in the 60's at least, she can get the next Pentostatin treatment tomorrow. She is already behind on this.

She has also been more pale these last few days and has very little energy for the most part of the day. She does get spurts of energy and acts like herself, going through presents and playing with Tatiana but then she wears out again. She is sleeping a long period at night and taking a few naps each day. All of this can be great for getting her body back in shape but also it could be due to her hemoglobin dropping further. We will find out more about that tomorrow as well.

She is VERY VERY anxious for Christmas. If I said it was today, she would probably jump out of her skin but I keep telling her how many days away it is. She ask, "Is that a long time or a short time?" She has no real concept of days, hours or amounts yet so she gets assured by our answers:)

I am looking as forward to Christmas as she is just for the sake, I want to see her home and healthy and everyone here together. That will be super!!!

I usually make Christmas dinner on Christmas Eve so it will be nice to sit down and eat that meal together also. Please pray for Katia's strength, her drinking and that her hemoglobin hasn't continued to drop. Also her WBC count was low and I am really praying that has come up to a better level.

I will update after we hear more on Estephany but please pray for her as these hours are very critical on how her condition will improve or deteriorate and, right now, each day is a miracle for her.

Love, Tracy

PS I also removed the "Miracle of Christmas" song from automatically playing as it was not allowing some people to open up the site.

But, you can hear it by clicking HERE and it will always be listed with the other songs at the top of the site so you can hear any of them any time you would like:)


**************


December 20, 2005 2:30 PM

URGENT PRAYER REQUEST

Please pray for Estephany right now. She is confronting serious complications and is being taken to ICU.

I will update as I know more.

Please pass this prayer request on to as many as you know as Estephany has fought so hard and really needs your prayers. New pictures are on her site.

Her dad has another appointment with the US Embassy in Honduras to apply for the travel visas necessary for him and Estephany's little sister, Sara, to come up here for transplant. Sara is Estephany's Bone Marrow Match.

As things seem to be hopefully coming together to get them up here, Estephany is going through critical changes. What is wrong right now appears to be a brain bleed.

Please pray.

Love, Tracy







December 19, 2005 1:25 PM

Normal counts are above on the page...
WBC 3.9 (low)
HGB 9.8 (low)
PLT 400 (great)
ANC 2000 (great)
IGG?
FK506?
Creatinine Clearance 58.6 (not good)
Creatinine Serum 0.5 (okay)
BUN 3 (low)
BUN/CRE Ratio 6 (low)
Total Bili 0.1 (low)
Calcium 7.8 (low)

As you can see, quite a few of Katia's counts were off today. She wasn't able to get her Pentostatin treatment so we are going to do another Creatinine Clearance test for 12 hours on Wednesday and see if she can get the treatment on Thursday.

Her IV Vancomycin will finish on Wednesday morning so that may help some of her counts get back in line, we hope.

One concern I have is her hemoglobin has been going down steadily. It hasn't been this low since February of this year? I am also hoping this has to do with her being sick right now and the antibiotics.

Also, with her White Blood Cell count being low, it leaves her easier to get sick so hopefully she will stay well and stay HOME:)

Katia is VERY VERY VERY VERY eagerly awaiting Christmas morning. I love to see how happy and anxious she is for Christmas to get here. We have missed that anxiety over the last few years but it is here now and growing with each passing hour.

As I type, she is plugged in to her IV and her and Tatiana are in there playing and laughing (Katia is also trying to drink more).

It has been nice being back home.

Please keep Estephany in your prayers. Her situtation is becoming very desperate and with the holidays, things slow down with trying to get the needed permits for her dad and sister. We do not yet have an okay for their travel to the US. She has been in the hospital for quite some time now sick. We would love to have some great news for them for Christmas so please keep this in your prayers.

I also want to send out a BIG THANK YOU for Katia's Christmas gifts that have been arriving as well as gifts for Sharayah and Tatiana. Christmas is coming together and we are so grateful for each of you. I know Katia is going to have a fabulous time opening gifts!

We wish each of you a Merry Christmas with your friends and family.

Love, Tracy







December 18, 2005 9:34 AM

Good morning:)

We are home and very happy to be here.

Katia came home yesterday afternoon. She will be on IV Fluids for a bit for about 10-12 hours each night and an IV antibiotic in the morning over 2 hours. She also is on an oral antibiotic twice each day as well as the rest of her regular medicines.

She is happy to be home, I am happy to be home and everyone is happy to have us home.

I look back and don't know how we managed to be gone for 11 straight months in 2003-2004 but I do know God gave us the strength and ability to manage as well as put some wonderful doctors, friends and family in our lives.

As Christmas is approaching, Katia is in a buzz! I plan to wrap gifts and get them under the tree so she can see it is going to soon be here. I remember getting so anxious, as Christmas approached, when I was a little girl.

It has been cool and rainy here so it feels like a Florida Christmas:)

I just wanted to jump on here and update and thank each of you for your prayers. Please keep Katia's kidneys and her overall health and sinuses in your prayers that they will be on the mend and doing better soon.

God bless you.

Love, Tracy


*********

December 17, 2005 7:00 PM

WE ARE HOME!!!!

HAPPY TO BE HERE:)

Love, Tracy







December 17, 2005 11:52 AM
BUN 4
Creatinine 0.5
Bun/Cre Ratio 8
FK506 12.3
Vancomycin 9.4

MY plan...

Okay, the idea is to leave the hospital today, go home on IV fluids and an antibiotic, another oral antibiotic, do a Creatinine Clearance (12 hour pee test) and bring it to clinic on Monday. If the levels of the test are okay, then we do the pentostatin on Monday. That is my hopes and I think the possibilities are good.

The levels above are more for kidney functions and medication levels. We didn't repeat a CBC today. That will be Monday.

So, pray, cross your fingers and pray some more that we can be on our way today:)


Love, Tracy






December 16, 2005 12:40 PM

New plan...



Due to the FK506 levels being high and her Creatinine still higher than they would like plus her Vancomycin level being high, she has bought herself another day at least, again.

We will retest all the levels tomorrow and see where she stands. The plan is to try to get to the Pentostatin on Monday.

Everything was good with these levels until these recent infections so hopefully we can get them back to normal soon. Then once she is off the vancomycin, we will need to readjust things probably back to the levels they were previously. The Vancomycin runs through the 21st so hopefully we will be good by Christmas. That is our prayer.

I feel bad for Sharayah and Tatiana. They really want us home and of course Myron wants us back home, bad. My dad came in town on the 6th and for the most part, we have been here or clinic since the morning after he arrived.

Katia got a little mailbox with a stuffed dog in it yesterday. Her Postal friends sent it to her so we are going to attach it to her house when we get home. Since she loves mail so much, that will be a cute add-on to her house.

Well, I need to get her up and moving some more and do some hair washing on her.

I will be back.

Love, Tracy











December 16, 2005 9:00 AM
WBC 6.29
HGB 10.7
PLT 481
ANC 3522
FK506 16
Creatinine 0.6


Not too sure of what today holds. Of course, we are hopeful to be discharged:)

It is definitely no fun to be here but I am thankful that Katia has a great facility and wonderful doctors that keep up behind her health and take good care of her. I am thankful that she is still cancer free. I am thankful that she has such a good attitude about being here. I am thankful that her infection and this sinusitis was caught before it got out of hand. I am thankful for all the prayers out there for Katia. I am thankful to Caringbridge for allowing us to share her story and for you to be able to reach out to us and encourage us. I am thankful for YOU:)

I know when things seem to step backward, it is sometimes hard to look forward but we are. We are looking forward to Christmas and we are looking forward to everyone being home together. Katia is very excited as Christmas draws near and I am excited for her.

I just wanted to jump on here, first thing this morning, and say thankyou. As I type, Katia is asleep and snoring.

She woke up feeling well but then she started up with her gagging and trying to throw up. Nothing came up though. She gets irritated with that so she just wants to sleep.

She did end up drinking 10 ounces last night between 7PM and 9PM as she agreed with her doctor to do this. When her doctor called, Katia took one last sip and told her she finished her water:) Later she drank 2 more ounces. Hopefully today that can pick up and she will eat, all of this making her feel better. We are changing one of her IV antibiotics from IV to oral and the other one will stay IV.

I am very very hopeful to get Katia home today. I am not going to get her all worked up for it though until I see she is on the right track:)

Well, I need to update on Estephany's page. Please keep this family in your prayers as Estephany is not feeling well at all, her mom is growing weary of being here and things are just very stressed for them. Prayers are always comforting. If you would like to send Estephany a card, please do so to the PO Box below. She loves mail!

Also, thank you for all the Christmas cards to our family and packages for Katia. Her Christmas Wishes are going to make her one happy happy girl!!!

Love, Tracy


************


December 15, 2005 7:30 PM

Well, Katia is awake. She slept this day away. She drank 3 ounces of water and 1 ounce of chocolate milk from 7AM till 7PM. Our goal right now is 10 ounces of water from 7PM till 9PM. I am cheering her on. They turned her fluids back up so she doesn't get dehydrated. Her kidneys need the fluid. The hope for the Pentostatin is to do it on Monday. It is behind schedule but hopefully we can get it done on Monday and then get back on schedule.

Overall, they want her drinking 40-50 ounces a day to keep her kidneys flushed so that is my prayer request. She has remained fever free which is great. When she isn't sleeping, she seems quite awake but then she just gets tired and wants to sleep. Hopefully this is all due to sinuses and the antibiotic will kick in. Tomorrow will be day 4 of that antibiotic.

Thank you so very much for your prayers:)

Love, Tracy

PS She says to tell you she lost BINGO tonight but everyone gets a prize!! She got a baby doll with a bottle, sippy cup and a little teddy bear:)






December 15, 2005 12:15 PM


Ms. Katia just isn't feeling well. She isn't eating or drinking, barely peeing and she is just sleepy again. She says she is hot but doesn't have a fever so she is down to her underwear, and sleeping right now with her "Brown Shirt". I don't have my camera here so I can't take any pictures really.

I watch other families around here and I just feel bad that so many are going through so many different things.

Estephany is upstairs feeling very badly right now so please keep her in your prayers also.

I get truly bored here so your entries are like "Happy Mail" to me and Katia when she is awake.

Thank you:)

Love, Tracy










December 15, 2005 8:30 AM

Hello:)

Well, the Creatinine Clearance urine test still came back low. It is supposed to be between 95-125 and it is 58.8. Not sure why. I guess we will just have to keep a close eye on it. I am not sure what that means as far as Katia getting her next Pentostatin dose today. It is time for the dose.

I really hope she can go home today. She did order breakfast, a bagel with butter, some cheerios and chocolate milk (chocolate milk seems to be the favorite right now) so hopefully she will eat it. Right now she keeps gagging saying it smells but nothing smells. It is a wrapped bagel, wrapped butter, little box of cheerios and a carton of milk? We will see.

She had a good night and woke up in a good mood. That is always nice. She has been sleeping so much lately and today she seems more back to her regular schedule. So we will see what today brings.

We so much appreciate your prayers. They are keeping the fevers away.

Love, Tracy









December 14, 2005 5:45 PM

Well, not tonight. Katia has to pick up her eating and drinking to get out of here. We just finished the Creatinine Clearance so we should also have the results of that tonight and if it is good, she can get the Pentostatin tomorrow. Hopefully we will be out of here tomorrow.

We had a visitor today...

SANTA!!! Katia was so happy. She took a nap shortly after he left and I am sure she was dreaming about him and Christmas.

Katia will remain on the Vacomycin IV through the 21st and Omnicef through the 4th of January. Hopefully that will keep her very healthy throughout the holidays and beyond.

I am going to try to get Ms. Katia to eat tonight. She did order spaghetti and meatballs, orange jello and chocolate milk. She hasn't even been wanting to order food so this seems like an improvement.

Thank you for keeping her in your prayers and encouraging Katia to eat and drink. I read her the guestbook post:)

Love, Tracy




December 14, 2005 1:25 PM

Hello:)

Katia is feeling quite a bit better today. She even had 2 bites of a bagel, 2 bites of jello and 4 sips of Chocolate Milk so that is an improvement:)

She had some labs that were off so we are repeating the Creatinine Clearance (urine collection test). It should be between 95-125 and hers came back quite low at 47. Also her BUN/CRE Ration tests has been coming down bit by bit each day. It should be between 15-24 and it came back 8. These are tests that determine kidney function. Due to these, she can't get her Pentostatin dose she gets every two weeks until we get these back within good ranges. Hopefully by Friday.

Our big hope is to be out of here tonight or tomorrow. It really depends on her eating and drinking and afternoon labs.

When Myron got here with the girls last night, Katia was so happy and playing:) They are always so good all together. That is why I love her to be home. Although they do have their sibling problems, it is nothing like what one would expect. They all really get along good together and Sharayah and Tatiana are very good about playing with Katia and giving her lots of time and attention and Katia really looks up to them.

I will update more this afternoon when I see how things are looking. I hope these kidney function tests will improve and this doesn't prove to be a problem. She has had a LOT of medicines and chemos that can be so hard on the kidneys and she has always remained stable until now. I am really hoping this just has something to do with her being sick right now and it shows improvement.

Also, her head and nose are feeling much less stuffed up. She says that they don't feel so full. She still complains quite a bit about her belly but I think eating and activities will help her belly feel better as well as Zofran.

Well, I want to get this posted before I get cut off my connnection here.

Thank you so much for your prayers!!!

Love, Tracy








December 13, 2005 4:30 PM

Hello there:)

Katia has slept nearly ALL DAY. Which is good in some ways but it also means she isn't eating or drinking. She says her belly and head hurt really bad which I can understand. She did have 2 spoons of chicken soup but then she said her belly was hurting her real bad and she just laid down and was asleep right away. I know she just wants to feel better.

She has had some decongestants and cough medicine today as well as 2 antibiotics and a lot of IV fluids so hopefully it will allow her body to start feeling better tomorrow.

I don't know how she will do tonight with fevers but by what she is feeling like right now, I think we will at least be here until Thursday if she can start feeling better now. As bad as we want to get her home, we also want her to feel good and not have to turn right around and be readmitted again.

Things can turn around so quickly with Katia that she is fine and then all the sudden she gets really sick. It is important to make sure she is feeling good enough to really be home. I think all her sleeping will benefit her tomorrow:)

She has some "Little People" here on the foot of her bed and she played with them for a few minutes this afternoon. Myron is headed back over here soon. He went home to get Sharayah and Tatiana which always perks Katia up. She can maybe play with them and eat something while they are here. It amazes me how sibblings can be so beneficial in ways we couldn't imagine.

I would really like to see Katia eat something so that is my prayer request right now. Also, that she can go without fevers tonight.

Thank you so much for checking in and for those of you that have Katia on different prayer lists. You know how much we believe in the power of your prayers and we so much appreciate the love shown to Katia.

Love, Tracy








December 13, 2005 10:00 AM

Hello:)

Katia had what appeared to be a restful night but she had fevers up and down(38.6/101.4) throughout the night. Not as high as the night before and they are going up and down on their own without Tylenol or anything. I think things are beginning to work. She will be here at least 24 hours past the last fever so we aren't sure when that will be. Also some of her levels are off so we need to do a Creatinine Clearance today to check her kidneys and recheck some other levels. She does show sinusitis and from what I understand, she is just packed which is why she is so uncomfortable and also probably why she has the fever. Her nose and head are just packed.

When I got her up to pee this morning she said that she just wants to sleep all day. She really stressed that she is TIRED! I think her little body is just worn out from this. I need her to eat and drink though, even if it is a little bit. She keeps fussing and gagging though and I don't want her to start throwing up either. She is on IV fluids so I know she isn't getting dehydrated but I don't want her weight to drop while she is in here.

Last Christmas she was so frail and this year, I want her to be strong and healthy. Her weight bounces around when we go between the ER, clinic and the hospital so I don't know really, in comparison, where it really stands until we get back home or have a regular clinic visit. Yesterday at clinic, when she weighed, she was bundled up, shoes on and blankie in hand but we didn't want to try to take her all down to the basics because she felt so bad.

During the night, she stripped down to her underwear because she felt so bad. It would be a good time to weigh her but I can barely get her to get up and use the bathroom.

Her Vancomycin level was quite high today so I think we will be changing the dose she is getting or how often she is getting it. It is supposed to stay within a certain limit.

I just would like prayers for Katia to eat and drink right now. I know she needs the sleep but she needs food and drink to get better too. She usually loves to order from the Menu here but right now, she doesn't even want the menu sitting on her bed. She did have some chocolate milk yesterday though, almost the full carton.

Also, please keep Estephany in your prayers. She is up on the 4th floor not feeling well at all. I am going to go send her some balloons later today to try to perk her up. Mom too. I am sure they would appreciate that.

I did get all the ornaments and CDs packaged and mailed so each of you that ordered something should have already or will shortly be receiving them. Thank you so much.

I need to get a chance to catch up on preparing for Christmas as the day approaches.

Sheila (in the guestbook), yes it is our 18th year Wedding Anniversary tomorrow, the 14th :) We are very much looking forward to many many more years! Thank you for the Anniversary Wishes. If we could be home, that would be great but we just want Katia feeling better and doing better. That would be a super treat for us!!

Lots of love,

Tracy

PS As I am typing this, Katia feels absolutely lousy so please keep her in your prayers to feel better.


*************

December 12, 2005 9:50 PM


Well, the idea is to go 24 hours with no fever, go home. All was well until about an hour ago and now we are back up to 38.3 (101).

The CT came back that Katia does have sinusitis. Her sinuses are just packed right now. She is on antibiotics for this. I thought maybe she would stay fever free but I know it may take a day or so for the meds to kick in.

Katia is telling me, "I am hot on my head, my legs, my back, just everywhere..." I feel so bad for her but I am glad that she can help me know how she feels. It used to break my heart when she couldn't talk.

We are in the room we were in at the original diagnosis back in 2002. Back then, Katia was in a crib. She was a bit smaller than she is now. She couldn't talk, she didn't know what was going on, she couldn't stand the doctors and nurses looking at her, moving her or anything.

Now, she is very familiar with everything. She knows ahead of time what comes next and why certain things are done. She doesn't fight and fuss (well not too much) and she is more understanding of doing things she doesn't like to do.

I really want Katia to be home and healthy for Christmas and have a LOT of fun. I know she is so much looking forward to it. I am a bit behind on organizing things though and the day is going to just sneak up on me.

Please pray for Katia to feel better. She is still coughing a lot, her nose is stuffy, her head hurts, she says her belly hurts, and she is barely eating or drinking now. She really needs a turn around so she can start improving. I pray the meds will kick in overnight and she will have a good night sleep and wake up feeling better.

Love, Tracy







December 12, 2005 2:00 PM

Katia was admitted. We are back up in the hospital. I kind of thought they would admit her since she was just sent home and became sick again. We think this is related to her sinuses so she had a CT a while ago and started another IV antibiotic. We are praying this is a short visit.

I didn't bring anything with me so for now, I don't have my laptop, overnight bag, nothing... I feel lost. I wanted to get on here and update. Emily's Mom has let me borrow their laptop to update.

I feel so much better when I can update.

Well, I will update more later. I am not sure what the plan is for now. Katia hasn't had a fever for a few hours. She was able to take Tylenol this morning and before that wore off, we were at clinic with her getting the new antibiotic and some IV fluids. I think that should perk her up a bit. She really feels pretty lousy.

The Buc players were in the hospital so she got to see three of them. They took a picture with her. The kids are all smiles when the Bucs are on the floor.

Well, I better finish this up.

Please pray this can be cleared up and Katia will be feeling better soon. Also, please pray Katia will eat and drink. She says her belly is sick and she doesn't want to eat or drink anything. That just can't happen so we are praying she will feel better and start munching and drinking.

Love, Tracy





December 12, 2005 6:00 AM

This has been an up and down week or so for Katia. All last night she has had fevers and continues to have them. They have been going between 38.7 - 39.1 so that is like 101.5 to 102.5 or so.

We called the Doctor last night. It may be due to the Vancomycin she is taking so we gave her time for the dose from 9:30 PM to wear off but that didn't get the fever to go away so now she is getting the next dose and we will head in. One thing we are never allowed to do is give Tylenol or Ibuprophen because, with these kids, fever is a clue something is up and needs immediate attention. This morning, I called the doctor before her 5:00 AM dose and let the doctor know what was going on with the fever. We were given the go ahead to give her Tylenol and the next dose. I didn't even have Tylenol here for Katia's age. That goes to show I guess. Usually she is always in the hospital when Tylenol is needed and it is such a "no no" that we don't keep it around here.

She isn't throwing up or anything so that is good. Fevers scare me because of the time it shot up so quickly in 2003 and stopped her breathing. She ended up in another ER with 107.8 temperature.

Needless to say, I am up having coffee, to wake up and be ready for today. Please pray this can be resolved without much problems. Admit? Not sure but I will keep the site updated as best I can.

Right now, she feels so hot and has just been quite sleepy the last 2 days or so.

Love, Tracy








December 11, 2005 5:15PM

Please pray for the family of Angel Josiah. He passed away this morning after a very courageous battle with cancer.

Katia is doing okay today, still hasn't felt up to really playing but it is rainy outside also. I think that makes everyone feel "under the weather".

She hasn't had any more broviac issues, drinking issues, or problems with her antibiotics. She will go to clinic tomorrow to have her labs done and check the Vanco level to make sure she is getting the right amount.

Please keep Estephany in your prayers right now. She has really been feeling bad and her mom is very worried for her. We are praying things will work out to get her sister up here very quickly and she will be strong enough to move forward to transplant. Your prayers are very needed.

Also, please keep our friends Bailee and Emily in your prayers as they remain in the hospital.

Thank you so much for all of your prayers. Katia should be off this antibiotic by the 21st. Right now she gets it once in the morning, afternoon and then during the night. Usually she either just sits and draws or takes a nap but she does well with being plugged in. She is used to it which is a good thing in this case.

I will update after clinic tomorrow:)

Love, Tracy







December 10, 2005 6:55 PM

The dryer is fixed!!!!! You don't know how happy that makes me. I hate getting behind on things. My neighbors let me use their dryer and that was such a help last night (late last night). It was 2 fuses that went out in the dryer and they were hard to get to but they are good now:) I was clapping!

Katia is doing okay. I think she is just run down feeling still. She didn't want to go play today but hopefully tomorrow? I think she just needs a boost of spirits right now. She seems a little down and worn out.

Well, I just wanted to update and let you know the dryer was back up and running and laundry is back in process. Katia is doing good with her transfusions, no more bleeding and things are well.

Today we were back to the Christmas list and what cookies to make. I say Peanut Butter but she likes the shapes and the sprinkles. I love Peanut Butter Cookies, Sugar Cookies, Chocolate Chip Cookies, just about any cookie. They just need to invent sweets that aren't bad for you or don't add the pounds.

Love, Tracy





December 10, 2005 1:15 PM

Hello:)

Today started off a little rough. Somehow, Katia woke up in a bunch of blood. She had been plugged in to the IV for 2 hours this morning and I didn't see any blood when I plugged her in or even when I unplugged her, but the light was off. Then about two hours after she was unplugged, she woke up and Myron noticed a bunch of blood on the bed? I checked and she was clamped (if the broviac is left unclamped, she can bleed out). Anyway, I don't know if she was somehow unclamped after I unplugged her? But, when Myron noticed the blood, she was clamped??

Anyway, to make a long story not so long, when I tried to clean her up and flush the broviac, she had clotted so I thought, "Oh man, we have to take her in." I worked with her broviac a bit and finally I got it working (YEAH!!), took all the bed stuff to a laundry mat (hadn't been to one of those for quite some time) and all is back to where it was. Hopefully we can get this dryer back up and going quickly cause I do laundry daily around here.

Right now, she is playing and happy and feeling well. I am about to plug her in again for her IV antibiotics for a couple of hours.

Hopefully she can spend some time out in her playhouse today if she is up to it. The weather is not the greatest but compared to those of you up north, it is sunny and warm:)

Thank you for your prayers, not only for Katia but all our Caringbridge friends and other families out there in need of prayers. God bless you.

Love, Tracy



***************

December 9, 2005 9:50 PM

We are home:)

Katia is so happy and so am I. It wasn't a long stay and we are so grateful for that but we just so much enjoy being home.

As I type, Katia is plugged in to her IV antibiotics and singing, "Let It Snow" so she is really happy.

I always come home, empty my bags, start laundry, take a shower and then I can chill:)

Today though, I got home and it wasn't so simple. The pump for the antibiotics was set wrong and took a while to get straightened out, Katia has new caps on her broviac that I am not used to, my dryer isn't working at all and it just got hectic.

BUT, good news to share!!

Bailee is off sedation and awake!!! I am sure they have missed her so much. It is hard to just watch your child and not be able to talk back and forth. Although it is done to give the body time to heal, it is still so hard. Please pray things can remain stable, she can get out of PICU and back to Sloan at least and all her family be together for Christmas. Also please keep Emily in your prayers as they remain in the hospital trying to get her back into remission and make a lot of decisions concerning a bone marrow transplant.

Thank you so much for your prayers and your awesome encouragement!!!!

Love, Tracy








December 9, 2005 3:32 PM

WBC 7.05
HGB 11.9
PLT 368
ANC 5560

Hello:)

I am hoping I can get this update on here as I keep getting cut off. This time I am typing it in notepad at least so I don't lose it again:)

Katia is WAY BORED! That is good though. She is perky and busy. She did pick up on her eating and drinking so none of us are having to bug her right now. The antibiotic (Vancomycin) she is on is hard on the kidneys so they want you to drink a lot so you can protect your kidneys. Once I explained it to her that they were going to just keep her here indefinitely if she didn't drink, she drank almost a whole chocolate milk and has since been doing fine with drinking.

The plan is to go home this evening:)

She will just be on IV antibiotics 3 times a day until the 21st. I can deal with that. She can deal with that:)

Well, let me try to post this and I will update more this evening:)

Love, Tracy







December 8, 2005 8:45 PM

Just wanted to jump on here while I had a chance (bad connection here).

Katia is doing okay. Her biggest problem is still the cough. She doesn't want to really eat or drink but she does enough to get by right now. She was talked to today about not drinking enough and she has managed to get down about 6 ounces since. That is good.

We are running her blood cultures again tonight and hopefully it comes back negative to show this antibiotic is working. I think it will work. She has always responded well to Vancomycin in the past.

Please keep Emily. I went by to visit with her and her mom today and I am sure they would appreciate your prayers. If you haven't read the update about Emily's sisters BOTH being perfect matches, that was awesome and welcome news!!!

Also, Estephany is in the hospital right now. She has been having a very bad time of bleeding very badly in her eyes, bowels, urine, skin, etc. She is really not feeling well right now and having a lot of stomach pain. Please keep her in your prayers. The Katia Solomon Foundation has been working along side others on getting her 1 year old little sister (her marrow donor) and her father up here on temporary travel visas from Honduras. This is Estephany's only chance at transplant. If that can be accomplished, there is a very good plan in place for her to get her transplant. There is just a lot of uncertainties right now and quite a few other decisions based on whether her donor can get up here or not. There is a lot involved. Please just keep the overall situation in your prayers as well as for Estephany to feel better. She really must have her transplant soon.

The saddest thing coming back up here on the floor is all the new names... It is sad to know that so many people are affected by these diseases. I pray someday, these diseases will no longer exist or have easier cures.

Thank you so much for all of your prayers and encouragement. I sign on and every click on the counter at the bottom of Katia's page, I feel is like a stretched out hand of prayers, caring and encouragment.

I will update some of the prayer request as well as add some new names in the drop downs when we reach home. I really can't work on that here. Also, the ornaments. Please know we appreciate each of you that drop by for a "visit".

A few have asked about Katia's Christmas Wish List and what else she would like. She has pretty well become quite happy with her list but one thing she really really wants to DO for Christmas is put out Santa's cookies. I think we should leave him a nice healthy turkey sandwich so Santa doesn't go into some sugar shock, but she says cookies. I am going to start putting things under the tree so she can get really excited about knowing the day will soon be here:) She is so happy and cute about everything:)

Again, thank you for stopping by.

Love, Tracy






December 8, 2005 9:50 AM
WBC 3.79
HGB 12.9
PLT 403
ANC 1970

The counts above are from the ER last night. Today's won't take place until around 8PM along with the next blood cultures to see if the antibiotics are working.

The big hope is to get home over the next few days and just do the IV antibiotics at home as long as Katia looks good and feels okay. She always does better at home as far as eating and going to the bathroom.

Thank you so much for your prayers. They do more than you know. Your guestbook entries were a great sight to see today:) It gets quiet in here... We haven't been in since February and we very much appreciate that fact. We are blessed that Katia hasn't needed to be admitted during that time.

Well, I will be back later.

I am planning to get the ornaments packaged and mailed out a day or so after getting back home. Thanks for your patience.

Love, Tracy






December 8, 2005 12:30 AM

We are in our room and getting ready for some sleep. Katia is a little wound up right now, because of being admitted, so that may take a while. Hopefully we will find out more of what is going on tomorrow and how long she will need to be treated and whether it can be at home. We very much appreciate your prayers. Katia really isn't feeling too bad other than her cold and cough. She did throw up a couple of times today but it was mainly from the cold drainage (sounds nasty). She hasn't had any fevers but with all the immunosuppressants she is on, it can hide fevers so we have to be safe and stay one step ahead of infections as best as possible.

I will update more later.

Love, Tracy





December 7, 2005 5:50 PM

We are headed to the hospital...

One of Katia's blood tests from yesterday is showing a Gram Positive infection. We aren't sure if it is her broviac or in her blood. She has been sick on and off and today threw up some. She will go in tonight and start on some antibiotics and run more tests.

Please pray this is a quick trip. She is so unhappy about this and it caught me by surprise. We haven't been in for a while and it is just harder to go back after having freedom. I just really pray things with her are good for Christmas and she is feeling good for Christmas. Please pass her on to your friends for prayer that this isn't too serious.



Love, Tracy







December 6, 2005 5:00 PM
WBC 8.16
HGB 13.7
PLT 481
LYMPH 1.09
ANC 5900
IGG 900
Weight 16.1 kg (35 pounds)
Height 95.8 cm (3'1")

Hello:)

Our visit to clinic went well today (well according to me). Her counts all look good but may not be totally accurate due to dehydration some. All in all, they look good. They just point to something viral compared to "her normal counts".

Katia had her nose and throat swabbed to check for strep throat or other infections and she had some blood labs sent off.

She did not get her flu shot since she has a cold. Her chest and lungs sound good so everything she has is in her head and sinuses. That was good:)

One concern is her weight is dropping quicker now. Her appetite is going away. She is now down to 3mg a day of Prednisone. She has lost over 2 pounds in a month and for her, that is quite a bit. She needs to EAT and DRINK.

Her doctor wants Sharayah and Tatiana to get flu shots (Tatiana isn't going to like that) and Myron already had his. Other than that, we just keep her healthy and out of harm's way.

She hasn't played in the playhouse today. She said her cold will be better tomorrow...

Grandpa is coming in tonight (my dad) for the holidays. She is very very eager to show him her playhouse. Due to appointments and her being sick, she won't be having classes this week with her teacher but her homework will be delivered. Katia likes her school work.

She rearranged some Christmas Tree ornaments today and gave the two Christmas Bears a check up when we came home. Right now she isn't feeling well so I should wind this up.

Thank you so much for your prayers and in advance for helping to fill Katia's wishes:)

Love, Tracy

PS If you missed the update before this, we are trying to figure out names for Katia's Playhouse. There are lots of good ideas pouring into the guestbook:)







********

December 6, 2005 9:00 AM

Well we will be off to clinic today. Katia's cold has just gotten quite a bit worse and her cough sounds quite a bit worse. She is starting to gag. So, hopefully they can get her headed back in a "feel good" direction. I am sure we have some nose and throat swabbing ahead of us (don't tell Katia) and a picture of her lungs and possibly sinuses? It is amazing how much different Katia having a cold is than any of us having a cold. But, Katia could also become critically sick so quickly. For us, a little whining, junk food and some medicine makes us feel better. For her, not the case. So please pray this gets her back to feeling better. I want her feeling A-OK for Christmas this year. I like her pretty smile her happy chatty self:)

Terry, I like your idea of "Chez Ladybug". We are trying to think of a name for the house. Anybody have any input? Katia had said to put a "Girls Only" sign but that is not a name and what about daddy? I am sure Sharayah would go for "Chez Ladybug" or anything French. She takes French at school and loves it!! Tatiana? No input from her yet. I liked, "The Ladybug Club Headquarters" but that could take a big sign that would cover the house. Suggestions would be great:)

19 Days Till Christmas!! Can you believe it? I feel like Christmas just finished from 2004. Ornaments are mailing out by Friday (maybe sooner) so keep an eye out for them:) "Miracle of Christmas" CDs are going out as the order comes in. They are packaged already now.

Well, I will update after clinic today. Please pray all goes well. The Flu Shot is off for now until she gets over this cold.


Love, Tracy




December 5, 2005 11:32 AM

I read all the comments to Katia in the guestbook. She feels very very lucky to have her Playhouse!!! It did come furnished with a kitchen, table, nightstand, pillows, ladybugs, porcelain doll, a ladybug bracelet and a few other items. The house is medium sized so Katia, Sharayah, Tatiana and me can actually get in there and have cookies. It isn't like we are all running around (we are pretty squished with all of us) but it is nice:) She loves for us to have cookies with her. I got her a tin of Holiday Cookies to share.

Katia is so ready for Christmas. A few of her wishes are things for her house as well as other things she is really hoping for. Thanks to TV commercials, she has quite a list so we made an Katia's Wish List in Amazon and she looks over it each day. She has added a few things but overall, she is very pleased with her choices.

Her cold is a bit worse today so she is laying low right now. She keeps looking at her house but isn't heading out there right now. She is nervous that she will end up at clinic needing her nose and throat swabbed. I think she just may need that. She is also going to get a Flu Shot (she has no idea about that) this week.

Thank you so much for all the comments. Katia loves to hear from you. Of course, I read them to her-someday she will read them on her own. I always start her off with, "so and so from such and such state, says..." Then I read the note. She will definitely know the names of states and countries from her guestbook:)

We ALL like hearing from you, actually:) You are extended family!!

Love, Tracy









December 4, 2005 11:52 AM


Pictures are up!!! Katia had her wish granted by the DREAM FUND and her wish was a playhouse. She wanted it to be yellow with a kitchen and table along with a place for sitting and playing. She says her house is PERFECT!!!! I can say we all agree!! Thank you, DREAM FUND.

There are more in the photo album and also in the Yahoo albums (link at bottom of site).

Katia is out there playing as I type. She is feeling somewhat better today and wanted to go out and play AS SOON AS SHE WOKE UP!!

Katia's question: "Do you like?"

Love, Tracy

PS If you notice, I have listed a few of the past songs that have been on the site above so you can listen to them at any time:)






**********************

December 3, 2005 10:30 PM

Good night:)

This is late. I really wanted to add some pictures on here today but we just really weren't able to get a good one of Katia since she didn't feel good. She is very happy but she is trying to feel better with her throat and she has a cold. She hasn't thrown up anymore but was just yucky feeling. She seems better tonight so we will hopefully get a picture tomorrow:) Then I will put all the pictures on here and in the Yahoo albums (link at the bottom of the site).

She says her "Surprise" is PERFECT though!!! That is her words. "This is perfect!!"

"A picture is worth a thousand words." That is what we are hoping for tomorrow:)

Love, Tracy







December 3, 2005 1:40 PM

I am going to add pictures here soon of Katia's "DreamFund Wish". She really really really likes it!!! I think the pictures will speak for themselves.

I also ask that you pray for Katia today. She wasn't feeling well yesterday, sore throat. Then today, she was enjoying her "suprise" and started throwing up. Right now, she is in bed, watching a movie and not very happy because she wants to play.

Hopefully she will be back up and going strong soon.

Also, thank you so much for all that participated in the auction!!! The ornaments will be out this week, early on.

All CDs that have sold are out to the post office now. Thank you and enjoy!

Love, Tracy






December 1, 2005 8:00 PM

Better late than never?

Today was a long day.

We had clinic and Katia's broviac decided to not work at all but we finally got it going. We were so thankful because that broviac is so so needed!

We go back tomorrow for dose #10 of Pentostatin.

Tomorrow, Katia's wish is being granted. The Dream Fund is going to be granting her wish and it should be done by Saturday. It took us a while because she wanted to go to Disney or on the Disney Cruise but is not able to yet so we will surprise you with her wish (in pictures) next week:)

She is VERY MUCH looking forward to her wish!!!!

I will give you a hint... "YELLOW"

Tomorrow is also Myron's birthday. Katia is going to make him something pretty after we get back from clinic or at clinic. We will see but I know what she wants to make him:) I get by all the surprises in this house.

Katia is very very much looking forward to Christmas. She is so anxious!! We are looking forward to her having Christmas too. This will be her first feeling good and being old enough to really get into Christmas.

I have been asked what people can/can't send Katia and what she wants so her "Wish List" is located at the bottom of the site. She had fun just making the list! Back in my day, we circled pictures in the Sears Catalog.

I will update after clinic tomorrow. I don't know Katia's counts from today but I will post them tomorrow. They sent them to another lab instead of running them in clinic.

Well, that is all for now. Can't wait to share Katia's Dream with you!! What do you think it is?

Love, Tracy


The AUCTION is running close to finishing. Katia is keeping up with HER FAVORITE ornament. I have a few on the tree from Katia and the girls. I will have to do that each year. Decorating these ornaments was really fun:)










November 30, 2005 7:00 PM
Added Request

As Christmas approaches, I am sure many of you take Christmas photos with your family (pro or home photos) and I would love to add those to Katia's photo album of friends. You can send them to the PO BOX at the bottom of the page or any new family photos you may have. They don't have to be about Christmas. We look at that album often as it sits on my desk:)

Love, Tracy







November 30, 2005 12:19 PM

Good day:)

Katia is with her teacher right now so I figure I better update while I have a small chance. Things have been busy lately with the Foundation and just other things going on.

We are packaging "The Miracle of Christmas" CDs to go out tomorrow so if your order is in by today, it goes out tomorrow.

Katia has spent the last few days deciding what she wants for Christmas. I remember when I was little, we would look through the Sears Catalog. Now it is Amazon.com to makeKatia's Christmas Wishlist. Times change:) She is really planning on a fantastic Christmas!!! It is nice that she is feeling well and doing well this year. We are very grateful for this and looking forward to Christmas morning:) This should be a very fun Christmas. She wants to get a few things for Estephany as well. She has really taken quite a liking to Estephany. They are both very sweet together:)

Quite a few people have been asking me about the "Ladybug Club" bracelets and I just don't have the beads right now. When they are available again, the link will be at the bottom of the site. There is always a link down there to past photos that have been on the page as well as just pictures taken. I try to add pictures to those albums regularly.

Please pray for Estephany this week. We are trying to figure out a few things and should have answers soon as to whether or not she has not only been accepted for transplant but also about her father and baby sister coming up here. With her sister being her match, nothing can happen unless they get their travel visas to come her on a temporary visa. So, please pray this will be possible. They were turned down once but that was before finding out her sister was her match. I will keep you updated on what we find out but what would be a better Christmas present for them than that? Estephany's Christmas wish is to have her family together.

Have a good day:)
I will update after clinic tomorrow.

Love, Tracy


*****************

November 28, 2005 2:50 PM

Good day:)

I would like to ask you to keep Jacob in your prayers as he is back in the hospital due to high fevers.

Also, the continuing Prayer Requests listed and all of our friends.

Emily L. will be in the hospital for at least 2 more weeks due to infections that have now come up. They had quite a scare with a drop in her blood pressure and found out she had infections. All of her counts are bottoming out due to being back on chemo since her relapse. I know Emily would love cards so she can decorate her room and have something to do. Mail is always great while you are in the hospital.

Emily Lester
C/O All Children's Hospital
801 6th Street South
St. Petersburg, FL 33701

I am sure they would appreciate mail:)

I also just put the lyrics to "Miracle of Christmas" above so you can sing-a-long with the song:) That wouldn't be too good of an idea if you are at work, I suppose...

Katia knows all the words and is trying to pick up the lyrics in Spanish now also. CDs ordered will start mailing out Friday, maybe Thursday.

Katia loves having the tree up!! She spends a lot of time walking around and looking at the ornaments and the lights. This year is such a blessing. She enjoying things far more than ever before. Before Katia was diagnosed, she was only 2 years old so she didn't get to "into" Christmas. Then, she has been sick basically each Christmas for the past few years. This Christmas, she is READY:) She is making her list and checking it twice!!! She has things she wants to get for some other people as well and she knows just what cookies she wants to leave out for Santa.

Katia wants it to snow here but that isn't going to happen (hasn't since 1974 I think). So, we got a can of the snow spray and put it on the front window. She didn't quite accept that to be real snow, and said that came from a can. But, it is pretty to look at and you can go outside and look at it wearing shorts:) I think that is the best of both worlds!

Have fun singing along to the "Miracle of Christmas" and have a good day.

Love, Tracy









November 26, 2005 3:00 PM

As you can see from the picture above, the girls have been quite busy today painting ornaments:)

Last night, we got the tree up and some lights up so Katia is ready for Christmas and counting down the days. Last year, she was admitted right before Christmas and was feeling pretty lousy Christmas day. This year, not the same:) She is happy and figuring out what cookies to leave for Santa. She likes the little nativity set on the table and for a while today, one of the Wisemen were missing. We found him:)

I do have a prayer request for you. Two actually. A little boy that had been fighting AML since Sept. 2004, recently became a little Angel on the 17th. He was 3 years old.Angel Bryce is so very missed by his family.

Another is a "silent prayer request" for a man just finding out he has a brain tumor. His friend has checked on Katia everyday for sometime and wanted prayers for him. He is having surgery to find out what type of tumor he has.

Also, if you haven't read the November 22nd entry on Julianna Banana's Site you must drop by. It lets you know what us Floridians love Florida so much for:) I like the translation of the famous Christmas song.

Thank you for your comments on "Miracle of Christmas". We love to read the guestbook entries and we are glad you can enjoy the song. The CDs are available through the end of December as it looks right now and will be mailing out starting December 2nd. They will mail out as the order comes in so you can have them and share them with your friends and family:)

Katia says hello and that she is wearing red today. She had on a Santa Hat but it got hot so she took it off.

Love, Tracy





***********


November 24, 2005 9:00 PM



Myron's message to each of you:)

Happy Thanksgiving Caringbridge Family!!

Suprise! It's me! DaddyBug!

It seems like forever since I have signed or updated and I certainly miss saying Hi to you all. Thankfully we all know that Tracy does a wonderful job of keeping everyone updated on all the latest happenings in the Ladybug home and beyond.

This Thanksgiving I am again reminded of how truly blessed I am, with a wonderful family, friends and aquaintances like you who stand with us from day to day, encouraging and motivating us. Thank you for the heartfelt love and care , it is invigorating.

I wake up each day and look at the little miracle that is Katia and I am determined to be the very best human being that I can be. I am thankful for her inspiration and so grateful for her continual, gradual recovery.

I am truly thankful for my family, we depend so much on one another, again, I am so blessed.

As you know, we have been very active with "Sharing Hope on the Wings of a LadyBug", and I am so thankful for all the anwsered prayers that have come our way, again I am convinced that God blesses our efforts when we work together for the benefit of others.

We are truly making a difference.

The Holiday season is my favorite time of year, and I look forward to a wonderful season of miracles and hope that we will share many stories of encouragement that will allow us strength through the difficult times.

This Holiday season I will be sharing with all of you a pretty little Christmas song I wrote called "The Miracle of Christmas", I really hope everyone gets a chance to hear and enjoy it. My first Christmas Song! I am very happy with it! I hope you will like it and make it part of your holiday celebrations.

We still very much appreciate your continued prayers and support. You really mean to our family.

Well this is all for now, I will hopefully be updating more often during this season, so look forward to chating at you some more later...

Be safe, and Thank you again for all you do...

Luv, Myron







November 24, 2005 12:02 AM




HAPPY HAPPY THANKSGIVING!!!

I just tucked Katia into bed (yes, late night) and we were talking about what we are thankful for. Here are her answers and there was not a second of thought in these either. This is in Katia's words.

1. Her friend, Estephany

2. The little Pilgrim Salt and Pepper Shakers for tomorrow

3. My family

4. My soft, red jacket

5. That my doctors like me

6. Ms. Michelle (her teacher)

7. For Macaroni and Cheese tomorrow (she gets this year round)

8. For hugs and kisses

9. For bedtime

That was it. That was kind of my cue that she is tired and ready for her hugs and kisses, covering up in her blankie, brown shirt in hand, picture of her and mommy on her headboard, little chickie in one hand, little doggie in the other hand, full thing of water on her bedside, barney behind her, Ronald McDonald on the bed, movie playing...

Do you see what bedtime means? This is an every night thing. Sometimes, chickie might be missing or doggie might be missing and then the hunt for those prized favorites start. No matter how late, how tired, we look. You know why?

We are thankful for Katia. We love her little laugh, her happy attitude, her finger prints, her pittering pattering bare feet, her hugs and kisses, her constant needing, her adorable smile, her kissie cheeks, her hugs and kisses (I know I said that already) and the fact she is here, home and happy:)

Katia is so full of love and happiness that if a day starts off bad for me because of some problem (that ends up not being as important as I may have thought), once Katia starts up with her little hugs and kisses and, "Good mornings", I can't help but to smile and be happy. Times can be hard but we always know times could be harder.

We are also thankful for friends!! What would we do without friends? I have no clue! It means so much to us that so many people have shown such care and love to Katia and our family. I think back to all the postcards she has received and all the cards and Happy Mail. I know that takes effort to go out and get stuff and drop it in the mail. That is so appreciated. Your prayers are what has kept us going and has given Katia miracle after miracle!

I, personally, am so grateful for my family. God picked Myron just for me!!! First, it isn't always easy to deal with me but he is perfect for me. I couldn't imagine life without Myron. Sharayah and Tatiana are not only the perfect daughters for me (mind you, I am not saying they are perfect - but perfect daughters for me) but they are the best big sisters Katia could have!! When it comes to our family, I couldn't have chosen anyone better. I can never say a day goes by that I don't know how loved I am by my family and I am grateful for that. VERY GRATEFUL!!

I am also grateful for answered prayers. We pray so much and we don't always know how and when God will answer prayers but we just have to try to have faith and believe the answer will come and it will be the right answer because God is in control of our lives. He knows the beginning and the end. That is not always easy to do but I am grateful I know that I don't have to RUN my life and that God is in control.

Okay, before I cause someone to burn their turkey here, I better cut this short. Please know the Solomons wish each one of you a Happy Thanksgiving. I wish I could come by and leave messages on all the Caringbridge sites but we wish each of you a Thanksgiving. Each and every person that comes to this page, frequently or every so often, we love and appreciate you.

God bless you,

Love, Tracy:)






*****************

November 22, 2005 10:23 PM

Wow, I am late today...

Well, today was the "big followup appointment for Tatiana". We have waited a while for this day to find out all the results from the MRIs and the EMG. What did we find out? Well, the scans of the brain and shoulder are all good. The EMG is good. That sounds great BUT, they also see a lot of "atrophies" in her neck and shoulder, extra weaknesses on one side of her body, very hyper reflexes on one side of her body, etc. So, the final answer, she needs to probably go back to Shriners to see the Neurologist there. We were sent from Shriners to ACH because they felt she needed to see a Neurosurgeon but now that all the scans and nerve studies have been done they feel that she has either some type of degenerating muscle problem, definitely some type of muscle problem and that it will just get worse. I feel bad for Tatiana because she really thought this the visit to say, "This is what we are going to do to get you feeling better..." but I know things aren't always that easy. I am thankful they have been thorough and always have showed concern for her. She is just tired of feeling bad. She is sore all the time, quite sore and she tires easy just due to getting worn out. Her body wears out and as she grows, it gets worse.

I am very thankful to know her brain scans came back well. I knew they were a bit concerned that something could have been causing pressure on her nerves either in her back or her head and then a neurosurgeon would be the one that could possibly fix that.

Where do we go from here? Well, we wait to hear back from the doctors she saw today. They are going to share her case with some more of their colleagues here and out of state and call me probably Monday. All of the results of different tests have already been sent to Shriners so we will go where they tell us to go next and hope to find answers.

Please just pray for Tatiana. At her age, you just want to feel good and be able to just do what everyone else is doing. We know from all we have been through with Katia and all the other children and adults we see, that this is not always possible but it is always the goal.

Also, please keep Kyle G. in your prayers as he has found a new lump and has been running fevers. He has been fighting Non-Hodkins Lymphoma since January 2004 after finding a lump under his arm. Please pray this is not the return of his cancer.

I know this is late and I am tired so I will update better tomorrow. I promise:)

Katia says hello and to tell you she wants Stuffing and Cranberry along with Macaroni and Cheese for Thanksgiving:)

Love, Tracy








November 21, 2005 6:00 PM

Good day:)

I have some excellent news to share!!! Awesome news!!!

For those of you that have been following and praying for Estephany, you must go read the update on her page (it is too long to type here again). GREAT NEWS but more prayers are desperately needed, you will see why.

Katia had her IVIG today and all went well. She slept most of the time which was good. She did homework first, drew all over the paper on the bed, watched a bit of a movie and then zzzzzzzzzzzzz.

All went well. There is a always a risk of bad effects with this treatment or getting sick due to treatment. This risk is like receiving any blood products.

Don't tell Katia this part but I was also told that next visit, Katia will get her flu shot!!! She is not going to like that! But, it will hopefully protect her some through this season.

Please continue to keep Bailee and Emily in your prayers. Both of them are not going to spend Thanksgiving the way they would have hoped. Your prayers mean so much to both of these families as well as your guestbook visits. I know that to us, a guestbook entry is like getting a card in the mail (the old days) by surprise! Remember those days that mail wasn't all about bills and junk mail!

Well, it is late and today really seemed to drag out for some reason so I am trying to catch up around here a bit. Sharayah got dinner going so that is always a treat:)

Katia is very much looking forward to some stuffing and cranberry sauce on Thanksgiving. She has been talking about it the last few days. Last night, after a short nap, she looked out the front window and saw Christmas lights on a house not far from us. She said, "OH MY GOSH, I MISSED THANKSGIVING!" and started crying. Poor thing, that would have been a long nap. We assured her, they decorated a bit early:)

Love, Tracy







November 20, 2005 4:48 PM



***NEWS TO PASS ON****

I wanted to update on something that I bring up on here a lot but today I want to REALLY stress this need again.

There are a few people we know right now seeking marrow donors as well as some that may soon be seeking marrow donors. There are THOUSANDS nationwide looking for marrow donors. To these people, this is their only hope of possibly saving their lives. This need is critical, always. More and more, bone marrow transplants and transplants using umbilical cords are being used to save lives. Not just in blood cancers any more but many diseases that require aggressive chemo and radiation. It allows doctors to be even more aggressive and then be able to build the patient's system back up with a bone marrow transplant. By doing this, they have more of a chance of totally killing these cancers, causing a lesser chance for relapse.

As we go into these holiday seasons, we will be spending time around more of our family and friends. This Thanksgiving we are so grateful to have Katia here with us. This would not have been at all possible, absolutely impossible, had it not been for a mother donating her baby's umbilical cord. It gave us our baby back. As I type, Katia is running around (screaming for some reason) and home with us, playing with Tatiana and has another chance at life.

As well as the desperate need for marrow donors is the critical need for blood and blood products. Blood and platelet transfusion are a regular need in patients fighting cancer, blood disorders, autoimmune disorders, recovering bone marrow transplant patients, etc. Many patients can need these transfusions on a daily basis. Another product that comes from blood donors is IVIG. Intravenous immunoglobulin G (IVIG, sometimes also called IVGG) is made from blood taken from thousands of human donors. It has been used to treat immunological disorders since 1980. Katia receives this about every 5 weeks. Without this, Katia's immune system would fail. As she recovers more and more from her transplant and is able to get her childhood immunizations, she should not need IVIG. Many people have disorders that require IVIG Transfusions for life.

During this holiday season, I would ask that you share this information with your family and friends. For more information on Marrow Donation and how to go about registering as a donor, you can visit The Katia Solomon Foundation Site. There is also very useful information if you, or someone you know is expecting a baby and how they can go about donating their baby's cord. It is important that they are informed and the paperwork is processed for this by their 6th month of pregnancy.

I am going to move this journal entry up into Katia's site once it moves over to the "Journal History" section so it is always available to share.

Thank you so very very much for your interest and please pass this information on to your friends and family over the holidays. We found Katia's match shortly before Christmas of 2003 and what a great present that was to our whole family. It was a miracle!!

Love, Tracy



***************

November 18, 2005 8:50 PM

I am on the computer checking on other sites and I thought, "Did I update?" Well, I swung by Katia's site and I hadn't.

She had her pentostatin transfusion today and all went well. We are getting pretty good at keeping busy to make the time go by. Katia loved our lunch! Cheetos and M&M's. I should plan better:)

We go back on Monday for the IVIG since her IGG level is low. That is the 5 hour transfusion. You know what? I have learned to not complain about hanging around clinic. Katia is looking good and I am just thankful we have the ability to get her the care she needs. Without blood donors, this would not be possible at all. Without doctors and those dear nurses that deal with us, this would not be possible. Without God, our little miracle wouldn't still be with us. I am thankful. We didn't wean steroids any more today. We will discuss that on Monday as well.

We saw our friend Billy at clinic today. He was our neighbor during bone marrow transplant. His mom and I spent countless hours chatting and having tea:) It was nice to see them. He looks great!! He has fought Ewings Sarcoma and MDS.

Thank you so much for visiting not just Katia but our friends as well. Everytime I see guestbook entries on their websites saying... "I came over from Katia's site..." I think of our logo, "Sharing Hope on the Wings of a Ladybug." That is what YOU are helping to do:)


Love, Tracy








November 18, 2005 9:21 AM

Tatiana is back to "normal". No dizziness or anything like yesterday. I am thinking the medicine kicked in after we actually left and then it took a while to wear off of her. She is back to school today.

Katia is still sleeping but she is about to get up so we can head off to clinic. I am so looking forward to the weekend right now.

Please continue to keep our friends in your prayers.

Love, Tracy
Be back later:)








November 17, 2005 5:00 PM

We are back. Tatiana did very good:) I know it took a lot out of her and she is laying in bed now, dizzy and not feeling well. I don't know if it is due to the Ativan for her or the shocks. She had quite an exam and a lot of shocks on her arms, legs, neck and back. I felt bad for her but like all of us, she wants to know what is causing her problems.

This doctor feels she has 2 different things going on. From the waist up, her reflexes and responses from her nerves were normal. From the waste down, abdormal. He showed me in a book what he sees wrong with her shoulder blade but doesn't know how it could have happened. He wants her to have some blood tests done to check for vasulitis and has sent his reports to the doctor we are to see next week at ACH. The shoulder seems to have Dorsal Scapular Nerve Palsy. We haven't gotten the MRI results back from the brain or the shoulder. He feels the spinal stenosis would be causing the leg numbness and the back pain can be caused by the degenerating disc or the DSNP. Of course, you know me, I am trying to find as much info as I can right now about any of this or any other ideas.

Tatiana looked at me when he said, "blood tests". I think he used the words, "a lot" but I told her it would still mean one poke and then filling up the little test tubes. We will see. We should know more after the next appointment on the 22nd.

So, keep her in your prayers that she can get past this dizziness tonight. She was running into everything and couldn't balance. Katia said she got "dopey from the drugs".

Please keep our other friends in your prayers. I will update when I know anything more about Emily.

We have clinic in the morning. I am still a bit concerned about Katia's counts but I will focus on that tomorrow.

Love, Tracy

PS Thank you so much for your entries. They mean so much.

I went by Emily's site and saw people going over there with encouragement. God bless:)






November 17, 2005 11:45 AM
2nd Update Today (there will be a 3rd)

WBC 3.4 (big drop from 7.6?)
HGB 12.5 (drop from 13.0)
PLT 285 (drop from 342)
ANC 2300 (drop from 6400)
IGG 459 (needs to be over 500)
FK506 11.9 (perfect)


Well, we are in between appointments and I wanted to update on Emily L. I saw them at clinic just now. Emily has relapsed. They found out yesterday so she is going to be having her port put back in today and get started on chemo. They aren't sure as to how much she has relapsed as of when I saw them but I am sure they will be finding out a lot through today and the next few days as to what the plan will be for Emily. Emily has fought leukemia ALL since October 2001. She completed her treatments in August 2004. All in all, Emily has been doing and looking great. She has just turned 16 years old. Please pray for her as I know she is not happy about having to start over again and especially right now as they don't know what the treatment plan will be. Her mom said she now knows what it feels like to "swallow glass". I can sadly say I know what they are going through and it just feels like everything is shutting in around you and you are drawn back from into all these treatments. Things seem to have been back to "normal" for them and now this. Please keep them in your prayers. Her mom will try to update her site as soon as she gets the chance but they really want everyone praying for Emily.

Okay, Katia's counts? Not sure what is going on with that and it isn't like we can just get answers to our concerns. It could just be a drop and then they will go back up. Not really sure but it does concern me, of course. Everything dropped. Katia has been having redness on her arms and face more over these last two days and I do worry about a GVHD flare up right now. You know how, as a parent, you just get a "feeling of concern"? Well that is where I stand right now. Katia's WBC count hasn't been that low since November 2004, a year ago actually when she was still getting the spinal chemo. We go back tomorrow for her Pentostatin treatment. I am not sure if we will recheck her counts or not.

Tatiana is anxious about her appointment today. I am sure she will be glad to get this behind her and of course she is eager to get some answers about all of her back and shoulder pain. She still has numbness on and off in her legs also as well as some other problems.

Please pray Tatiana's appointment goes okay. Pray she is able to complete the whole EMG test.

I will update afterwards.

Love, Tracy

PS Jacob is recovering well and has been moved out of PICU:) Isn't that great!!







November 17, 2005 9:00 AM

Please pray for our dear friend Emily L. I can't go to far into details but I am sure her mom will update soon. Please just know they very much need your prayers at this time.

We are headed to clinic this morning for Katia (report card time) and then to Tatiana's long awaited appointment for her EMG (nerve study test). They WERE going to sedate Tatiana but now they are just planning on using Ativan? Not sure why the change but the location changed from St. Joseph hospital to the doctor's office which is where they normally do these unless the child can't stand pain and needs sedation (HINT: TATIANA!!!) So, we will see how today goes. Please pray for Tatiana today and please pray that Katia's counts look good. The plan is to do the Pentostatin dose tomorrow and then the IVIG dose in the next few days. I am sure her IGG count is very low by now as it was already getting there over a week ago.

Again, please keep our dear friend Emily in your prayers.

Love, Tracy









November 15, 2005 3:50 PM

Good day:)

You know what Katia and I have done today? A lot of school work!! She did her homework and then we did extra work on the computer. She says she is much smarter than when she woke up:) I love the fact she loves to learn.

Now, she is being a very typical 5 year old. She is playing GameBoy. This has been a newer thing for her as she used to get so flustered with that GameBoy. Now she understands it better and loves the games. Right now she is playing Looney Toons. I think GameBoy games is going to be on her wishlist this Christmas. That is good since all 3 girls like to play. They can each share. In my days it was that Ping Pong tennis game and asteroids on Atari. It is funny that they sell those games again. I think it is a way to make us parents feel young again:) I was always big on PacMan!! Those were the days you had to use quarters to play these games. I loved PacMan!!!

This whole week has been full of doctor appointments and tomorrow is no different. I will update at the end of the week how all of these appointments go. Myron, Tatiana, Katia and myself are all on the calendar for this week. Hopefully we all get good "report cards".

Well that is about it for now.

Love, Tracy

PS Bailee's page was updated yesterday. Drop by and leave a message. ICU isn't an easy place to be and they have been there a while. Also, Jacob has been in ICU for quite some time. Both of these children and their families need your prayers.



***************

November 14, 2005 6:00 PM
Second update today

Please pray for Kevin M and his family. Kevin was diagnosed with a hereditary form of Colon Cancer and is now in the slow process of passing away. His family watches their husband/dad go through all of this and it just has to be so difficult. His 14 year old son, Ryan, has tested positive for the same cancer gene. Ryan will have the colonectomy to prevent the cancer in the future. Please keep them in your prayers. Kevin's wife, Linda, updates the site regularly.









November 14, 2005 12:21 PM

You can see above who Katia got to meet:) Isn't that awesome! Katia was so happy and she was so surprised. He just came walking up to her and she was just in awe!!! She was just like we have never seen her before! He brought her a big french fry tote bag with all sorts of gift and an autographed Ronald McDonald doll. He spent a few minutes talking to her about whatever she wanted to talk about, admired her little ladybug bracelet and she was still just in AWE!!!

We had an event to go to on Saturday, a Car Show, and he was invited there to meet Katia. There is a long story behind Katia's love for Ronald McDonald but this grew even more when she spent time at the Ronald McDonald House. You see, we would always here noises of people walking around in the room above us. To Katia, that noise was Ronald McDonald himself putting on his shoes each morning. She would go on and on about us being able to stay in Ronald McDonald's house!

Back in January 2005, it had been planned for her to meet Ronald. There was a nice little suprise party in the works for the weekend but, Katia ended up sick, going to the ER and admitted to the hospital. Luckily she had no idea about the plans so she didn't know what she had missed out on.

Of course, one of the biggest things Katia still looks forward to is her "release" to be able to go into McDonalds and have a big, juicy Cheeseburger Happy Meal.

If you look back in the Journal History, to April 9, 2003, Katia had an awesome time eating at McDonalds and playing in their playground. At that time, she hadn't done that for over a year due to chemo and low counts. Well that is the last time she has done that so now it has been over 2 1/2 years. Those days will be back soon enough once Katia is doing better and her body has an immune system again.

To meet Ronald McDonald? A dream come true for this 5 year old!! I took a lot of pictures so I will add them to the Yahoo Albums soon. Keep an eye out for those. The link to the albums is at the bottom of the page.

This week is going to be a busy week of appointments. Everyone has doctor visits except Sharayah (she always stresses she is "the healthy one"). Katia has been doing well. She has had a few falls while walking, but nothing major. Her eye still pains her and I hate to see that but once the pain subsides, she forgets about it. It isn't red around her eye or bruised so I am not sure what is going on in there. We will discuss that at clinic.

I so much appreciate each of you checking in. It means the world to us. Katia says to say hello and that she is keeping the pink princess picture on the page (she really likes that picture).

Sharayah had a great birthday. Thank you so much for the birthday wishes for her. I still can't believe she is 17. I remember the day she was born very clearly. She was a very easy delivery and a very easy baby to take care of from day one! She spoiled us as new parents.

Well, that is all for now:)

Love, Tracy











November 12, 2005 4:06 PM

You won't believe who Katia got to meet today!!!! I will post some pictures tomorrow. She was so happy that she could barely speak and she just had this "look" on her face:)

I will update more tomorrow. I am worn out right now. I mainly got online to check up on a few people and research a few things.

Have a great weekend. The weather here is warm and sunny and it is mid-November:)

Love, Tracy








November 11, 2005 6:00 PM

HAPPY VETERANS DAY TO ALL OF OUR VETERANS!!

The girls made Myron some very nice pictures and cards for Veteran's Day and presented them to him when he came home from work. They were very cute.

Do you ever watch the show, "Three Wishes?" Well about a week or two back, it was about a group of Marines coming home and the fact that some of their company did not come home. I get so choked up watching those homecomings because I remember waiting for Myron to arrive after being gone so long in Iraq. There are a lot of lows in life and lot of highs in life but that homecoming day, a huge HIGH IN LIFE!! It was just Sharayah and I back then and we REALLY MISSED HIM so much. I was so happy to see the wishes being done for some of these soldiers and their families as well as the family of a soldier that did not make it home.

It seems like SO MUCH has happened over the last 3 years but when I think back over the last 20, WOW! It makes me wonder what the next 20 years will be like for us. I just know there will be more highs and lows. I just pray for many more high moments. I am sure there will be quite a few "life changing moments" seeing that we have 3 girls that are quickly growing up.

Katia has had a good day. She is having problems with her right eye on and off which brought her screaming into our room at 3:30 this morning. She went to bed with it feeling bad and it has been bothering her on and off throughout the day. Her right eye is the one with the tumor behind it. Since it is wrapped onto the optic nerve, it can't be removed without taking Katia's site. The chemo and radiation has shrunk the tumor down to almost nothing but it always remain a concern to us. This tumor is what we all believe brought her into a relapse in her spinal fluid back in 2003. Since that, she received more chemo, radiation treatments to the eye and the brain as well as her bone marrow transplant so... we just hope that tumor never shows its ugly face again. Just please pray for the pain to go away. She does have regular visits to the eye doctor (which she hates) but we may need to move up her next scans to check the area and see that things are good.

Other than that, she has had a good day. She got a wondeful box in the mail today with some dress up clothes, tea set, princess wand and some other things. Right now, her and Tatiana are tied up with that so I am sure there will be some "Dress Up" pics over the next day or so. She picked the picture at the top of the page today and wanted the page background to be pink like the dress so... (see what happens as she learns more of this web design).

I will get the turkey picture back up for Thanksgiving though:)

Also, there is an update on Bailee's site so you can drop by there. It is hard for them to udpate too much due the fact Bailee's brother Michael also checks the site so there is a not about being careful what is written in the guestbook. Just know they really need your prayers but Bailee is showing improvements.

Also, Jerry is home!!! He came in late last night:)


Love, Tracy










November 10, 2005 3:44 PM

Hello:)

First, we are very much looking forward to Jerry coming home. I am sure he would love to read Homecoming messages in his GUESTBOOK. I can't imagine how happy his kids are today!!!

Things here are okay. I just haven't felt well lately so I am kind of taking it easy today. Katia said I am normally "fun" but not today? Hopefully I will feel better tomorrow:)

The girls will be home from school tomorrow so we have a long weekend to look forward to as well as Sharayah's birthday on Sunday.

Have a GREAT weekend.

Love, Tracy

PS I want to add a prayer request here for a little girl, Mandy.
www.caringbridge.org/visit/mandywillis. Please keep her and her family in your prayers. I will add more about her story later.









November 9, 2005 4:00 PM

Hello:)

I never did think of what I was trying to remember yesterday...

Today, Katia had her school teacher here and they did an K-5 Assessment kind of test. Katia did very well:) She had a few mistakes here and there but overall she did very well. That made my day!! I know she is happy when she does well and I am happy to see her doing so well with school. With all the chemos and radiation she has had, education is one of those uncertainties. GOOD JOB KATIA!!!

Right now she is playing Tatiana's GameBoy, "Sims, Bustin Out" game and she loves that game!! I am even amazed to see how well she has done learning the GameBoy and the games. Not too long ago, she had no clue how to really use those and really didn't have the patience to do that type of stuff. Now she is just moving along with GameBoy and her Leapster. Can you tell I am having a, "I am proud of Katia" day?

On the health side, her face is almost totally cleared up!!! I am happy and she is happy. It is the first thing she looks at once I brush her hair and get her dressed. We still have no results as far as how we are going to treat the "yeast infection". We should get that over the next few days I think.

We are also planning for Jerry's Homecoming and are very much looking forward to knowing he is back in Tampa with his family. There were some very scary times in Jerry's treatment and that just makes tomorrow all the more special! So keep Jerry, Carol and Jerry's Mom in your prayers as they travel from Seatle tomorrow:)

Wow, I sit here and I go blank? I had something else? I better get back to taking vitamins:)

Also, please keep Estephany in your prayers. There is a lot going on while waiting for final decisions on her transplant. Her baby sister is old enough to be tested to see if she is a match for Estephany's transplant but also they will be finding out if the baby has Fanconi Anemia as well. If she does, she will not only be cancelled from possibly helping Estephany but she will face the same ordeal as Estephany. The parents are quite worried during this time as you can imagine. So, please just keep them in your prayers.

This Sunday, Sharayah turns 17!! I can't believe it. That just really makes me feel old. But, Sharayah has been a great daughter and older sister. She is funny, smart and has brought a lot into lives over these last 17 years. Since we started our family, we have never been bored! Sharayah was 2 years old when we moved to Germany and Myron went off to Iraq. During our time in the Army, Sharayah was like my shadow. It was always her and I wherever we would go. Then Tatiana came along when Sharayah was 4. Sharayah could always entertain Tatiana and make her smile and laugh. They are both getting so big and just moving along growing up. Sharayah will be a senior next year in High School. She is always reminding me that she will be voting during the next Presidential Elections, etc. She is also looking forward to getting her Driver's License coming up here. We held off till she was 17 and now that time is here. She is studying for the written test now.

Well, I better wind this up. Katia is piling up my lap with her paper and markers for me to draw something. She has made a few pictures for Jerry's Homecoming decorations:)

Love, Tracy





**********************

November 8, 2005 7:30 PM

Good day:)

First of all, clinic went very well today. We got what we needed to check on Katia's infection so now we will just wait a few days and see what the results are.

She has some bruising that was concerning but her CBC looked good so we will just keep an eye on her and see that it doesn't worsen. We go back to clinic next Thursday and Friday. Next week is a busy week between appointments for Tatiana, Katia and myself.

There seemed to be something else I wanted to update on but I can't think of it right now (that goes on a lot more lately).

Thank you for coming by and also for checking on our friends in need of prayers. I know Bailee and Jacob are both in serious need of your prayers. Also their families are in need of your prayers during these times.

Also, Jerry could use prayers as he has a long trip ahead of him from Seatle to Tampa. Please pray that all goes well for them tomorrow as they discharge, get all their paperwork, medicine and orders together. I am sure it is going to be a big transition leaving the area right by the hospital. It gives you a sense of protection when you are so close to your doctors and medical care. It is a great step forward but also very scary.

Katia has been in a good mood today so she is quite hyper tonight and chatty:) It is always so nice to see her happy, talkative, home and feeling well:) That is ALL due to prayers.

Love, Tracy










November 7, 2005 7:46 PM

I just had a couple of things to add here. There is the update from today below.

First, I was emailed about a family, the The Trimper Family. Each of their 3 children is fighting Metachromatic Leukodystrophy (MLD). You can learn more by visiting their site. Their daughter Maddie is really in need of prayers right now. (UPDATE 10:14 PM) I just learned Maddie Trimper passed away this evening). You can view their 2nd site HERE.

Also, I have some very very good news!! Jerry Gomez is coming home!!!! Yes, this Thursday he will be back in Tampa. He has been being treated in Seatle and recieved his Bone Marrow Transplant 3 months, 1 week and 3 days ago:) He had aspergillus in his lungs recently and is still being treated for that as well as GVHD. His family will be so happy to have him home!! Here is the most recent story on Bay News 9.

Thank you so much for your prayers for these two families as well as those mentioned earlier today. I have updated the Prayer Request and added a few new ones that need your prayers.

God bless. I will update after Katia's clinic visit tomorrow on what our plans are with her.

Love, Tracy

PS Stop by Katia's Guestmap (above) if you haven't marked your place on the globe:)











November 7, 2005 2:37 PM

I am happy to say that it looks like Katia's face is clearing up:) There is just one red spot left and it is just red with no sores or crustiness (sounds grose, huh?)

BUT, the yeast infection seems worse than it was. So, we are off to clinic tomorrow to try to get a specimen collected so we can see exactly what we are dealing with here. We tried to do this last week but didn't get the sample and just had a very upset Katia in the end. This week, we hope to have a better try. We were hoping this medicine would just work. So, please pray for Katia that this can get cleared up.

Her nausea has been much better with the help of Zofran so that is a good thing too. She is eating and her weight hasn't dropped anymore. With her down to 5 mg of Steroids a day, we are keeping a close eye on her skin as well as her appetite.

I know so many of you are praying for Bailee and I ask that you continue to pray. They are really going through a lot right now and could use your prayers. For Bailee to be able to recover from this bacteria and get out of ICU. For her parents both emotionally and physically. And always for her doctors and nurses. They need prayers as they treat their patients.

Also, prayers for Jacob as he faces one hurdle after another it seems.

If you have a prayer request or an update on a listed prayer request, please feel free to email me.

Katia seems to be at a loss for words right now as her mind and her belly are concentrating on one thing... FOOD:)

Thank you so much for taking the time to drop by. Thank you for your prayers.


Love, Tracy








November 6, 2005 11:35 AM

Good morning:)

Katia is here eating a cheese bagel while I type:) That is good. They gave her some Zofran and her tummy feels all better. The Pentostatin treatments are probably the cause for the nausea.

Her face? Well, it looks a bit better but it has quite a few little red dots on it. Not like the regular red dots, these almost appear like petechiae. Her platelets have been good so maybe this is just being caused by medicines?

Yeast infection? No better yet. I had hoped it would be showing some improvement but we will keep on with the medicines and hope for improvement.

She does look quite cute today though:) Katia is a joy to be around each day, all day. She really is quite funny and very very loving. She amazes me by how she handles everything. She took ALL her pills perfectly good today with no hesitation. They were all done in about 5 minutes so I can tell her belly feels better. Some day she won't have to take all of those pills but for now, she understands that each one has a purpose and that main purpose is to keep her healthy and out of the hospital! It has been almost 9 months since she has had an overnight admit. The last one was for the GVHD flare up and diarrhea. She has also had this broviac in for over a year and NO INFECTIONS:) That is amazing in itself. We have a lot to be very thankful for:)

On that note, I ask that you please keep Bailee in your prayers. No news yet about what is going on. I know that things must be serious for Robyn to not update. It means she is having to stay with Bailee. Please pray for each of them. I just know they really need the prayers.

Also for Jacob. They are having a prayer vigil for him at 9PM tonight, Eastern Time. So, wherever you are, stop and say a prayer for him. I know you are praying for him all day. His parents are wanting prayers for his total healing, his pain, this bladder virus, the bleeding and just his overall well-being.

Also for Niki that she will keep on the road to recovery and that all her tests will come back CANCER FREE this week.

I also need to ask your prayers for Estephany and her family. Just a brief update is they were able to get a sample of blood from her baby sister, Sarah. This is to check to see if she is a match. Also, this will let them know if the little baby has Fanconi Anemia as well. Our prayer is first, the baby doesn't have Fanconi Anemia. Secondly, that she is a perfect match for Estephany. Thirdly, that the family can somehow be reunited and most importantly, that Estephany will get her Bone Marrow Transplant she so desperately needs to survive. There is a lot of waiting right now for the results of these tests and I know they are under a great deal of stress. Physically, financially and emotionally they are feeling completely drained. They are both scared and hopeful. I will update more over the next few days as we learn more.

Katia has something to add here:) This is what she wants to tell everybody. This is in her words...

"I love you."

"I really want you guys to keep my broviac good and well, pray for it."

"I want to say, Bye."

"That is all."

Someday I will teach her how to type and she can update. That should be interesting:)


Love, Tracy




***********

November 6, 2005 11:35 AM

Good morning:)

Katia is here eating a cheese bagel while I type:) That is good. They gave her some Zofran and her tummy feels all better. The Pentostatin treatments are probably the cause for the nausea.

Her face? Well, it looks a bit better but it has quite a few little red dots on it. Not like the regular red dots, these almost appear like petechiae. Her platelets have been good so maybe this is just being caused by medicines?

Yeast infection? No better yet. I had hoped it would be showing some improvement but we will keep on with the medicines and hope for improvement.

She does look quite cute today though:) Katia is a joy to be around each day, all day. She really is quite funny and very very loving. She amazes me by how she handles everything. She took ALL her pills perfectly good today with no hesitation. They were all done in about 5 minutes so I can tell her belly feels better. Some day she won't have to take all of those pills but for now, she understands that each one has a purpose and that main purpose is to keep her healthy and out of the hospital! It has been almost 9 months since she has had an overnight admit. The last one was for the GVHD flare up and diarrhea. She has also had this broviac in for over a year and NO INFECTIONS:) That is amazing in itself. We have a lot to be very thankful for:)

On that note, I ask that you please keep Bailee in your prayers. No news yet about what is going on. I know that things must be serious for Robyn to not update. It means she is having to stay with Bailee. Please pray for each of them. I just know they really need the prayers.

Also for Jacob. They are having a prayer vigil for him at 9PM tonight, Eastern Time. So, wherever you are, stop and say a prayer for him. I know you are praying for him all day. His parents are wanting prayers for his total healing, his pain, this bladder virus, the bleeding and just his overall well-being.

Also for Niki that she will keep on the road to recovery and that all her tests will come back CANCER FREE this week.

I also need to ask your prayers for Estephany and her family. Just a brief update is they were able to get a sample of blood from her baby sister, Sarah. This is to check to see if she is a match. Also, this will let them know if the little baby has Fanconi Anemia as well. Our prayer is first, the baby doesn't have Fanconi Anemia. Secondly, that she is a perfect match for Estephany. Thirdly, that the family can somehow be reunited and most importantly, that Estephany will get her Bone Marrow Transplant she so desperately needs to survive. There is a lot of waiting right now for the results of these tests and I know they are under a great deal of stress. Physically, financially and emotionally they are feeling completely drained. They are both scared and hopeful. I will update more over the next few days as we learn more.

Katia has something to add here:) This is what she wants to tell everybody. This is in her words...

"I love you."

"I really want you guys to keep my broviac good and well, pray for it."

"I want to say, Bye."

"That is all."

Someday I will teach her how to type and she can update. That should be interesting:)


Love, Tracy










November 5, 2005 7:25PM

Good evening:)

I am glad to see people in the guestbook again:) I kept getting emails about the guestbook not loading so I emailed Caringbridge about it and they rolled it on over. Messages are great so it is always a good thing to ask them to roll it over due to it being too full to load. Your messages have become a part of our daily lives (more so than the news) and we appreciate hearing from you and about you:) I think others checking the guestbook enjoy reading about each person also. It is like a message board in many ways.

I have not had any update on Bailee and I am getting worried about them being offline for so long. I am just praying Robyn will update soon that they are out of ICU and Bailee is doing much better. Our family knows how quickly things can change from everything being great to everything slipping and it is so scary. Please let them know you are thinking about them and praying for them even though they aren't able to update. I am sure they will enjoy reading that when they can get back online.

Jacob is back in the hospital with very serious complications causing a lot of swelling around his abdomen and heart. This little one has been through so much and really needs prayers for strength and endurance. The whole family hasn't had a chance to really catch their breath.

Niki's page was updated that she did well in surgery and although she is sore, she is recovering. I hope to see her updating her own page soon. That is always a good sign.

I got an email asking if it was okay to copy and paste Katia's CB page address to the people at their work so others could read info on her story, bone marrow donation, and the need for blood donation. I am ALWAYS okay with that and I very much appreciate it. I try to post things on here for others to be able to come by and find information. It is my hope that there is enough information for someone that doesn't understand much about these subjects to leave not only with a better understanding but a desire to be a part of the overall solution, registering as a donor of marrow and becoming a blood donor. Those are two big steps in saving lives.

Katia is doing okay. She has been on Zofran today and her belly is feeling better. The sores on her face SEEM a bit better right now and I really hope they will continue to improve. We have been having to "make deals" about her getting all her pills down lately. She says it is too much and it fills her belly too much. Each pill has its importance but we try to spread them out over a couple or few hours. She has been so great all this time and I certainly don't feel she doesn't understand the importance of these medicines. Please just pray for her and that little willpower of hers to just keep moving forward and doing what she has to do. I feel bad that she has to do all of this at the age of 5 but I am so thankful she is ABLE to be doing all of this and that she is still in the fight.

She likes the picture of her and the turkey in her border. She remembers that day very clearly:) As Thanksgiving approaches, she looks forward to Turkey:)

Well, that is about all going on right now. Thanks for checking in and for leaving your wonderful messages. Thank you for passing along Katia's story:)

Love, Tracy


***********

November 6, 2005 11:35 AM

Good morning:)

Katia is here eating a cheese bagel while I type:) That is good. They gave her some Zofran and her tummy feels all better. The Pentostatin treatments are probably the cause for the nausea.

Her face? Well, it looks a bit better but it has quite a few little red dots on it. Not like the regular red dots, these almost appear like petechiae. Her platelets have been good so maybe this is just being caused by medicines?

Yeast infection? No better yet. I had hoped it would be showing some improvement but we will keep on with the medicines and hope for improvement.

She does look quite cute today though:) Katia is a joy to be around each day, all day. She really is quite funny and very very loving. She amazes me by how she handles everything. She took ALL her pills perfectly good today with no hesitation. They were all done in about 5 minutes so I can tell her belly feels better. Some day she won't have to take all of those pills but for now, she understands that each one has a purpose and that main purpose is to keep her healthy and out of the hospital! It has been almost 9 months since she has had an overnight admit. The last one was for the GVHD flare up and diarrhea. She has also had this broviac in for over a year and NO INFECTIONS:) That is amazing in itself. We have a lot to be very thankful for:)

On that note, I ask that you please keep Bailee in your prayers. No news yet about what is going on. I know that things must be serious for Robyn to not update. It means she is having to stay with Bailee. Please pray for each of them. I just know they really need the prayers.

Also for Jacob. They are having a prayer vigil for him at 9PM tonight, Eastern Time. So, wherever you are, stop and say a prayer for him. I know you are praying for him all day. His parents are wanting prayers for his total healing, his pain, this bladder virus, the bleeding and just his overall well-being.

Also for Niki that she will keep on the road to recovery and that all her tests will come back CANCER FREE this week.

I also need to ask your prayers for Estephany and her family. Just a brief update is they were able to get a sample of blood from her baby sister, Sarah. This is to check to see if she is a match. Also, this will let them know if the little baby has Fanconi Anemia as well. Our prayer is first, the baby doesn't have Fanconi Anemia. Secondly, that she is a perfect match for Estephany. Thirdly, that the family can somehow be reunited and most importantly, that Estephany will get her Bone Marrow Transplant she so desperately needs to survive. There is a lot of waiting right now for the results of these tests and I know they are under a great deal of stress. Physically, financially and emotionally they are feeling completely drained. They are both scared and hopeful. I will update more over the next few days as we learn more.

Katia has something to add here:) This is what she wants to tell everybody. This is in her words...

"I love you."

"I really want you guys to keep my broviac good and well, pray for it."

"I want to say, Bye."

"That is all."

Someday I will teach her how to type and she can update. That should be interesting:)


Love, Tracy










November 5, 2005 7:25PM

Good evening:)

I am glad to see people in the guestbook again:) I kept getting emails about the guestbook not loading so I emailed Caringbridge about it and they rolled it on over. Messages are great so it is always a good thing to ask them to roll it over due to it being too full to load. Your messages have become a part of our daily lives (more so than the news) and we appreciate hearing from you and about you:) I think others checking the guestbook enjoy reading about each person also. It is like a message board in many ways.

I have not had any update on Bailee and I am getting worried about them being offline for so long. I am just praying Robyn will update soon that they are out of ICU and Bailee is doing much better. Our family knows how quickly things can change from everything being great to everything slipping and it is so scary. Please let them know you are thinking about them and praying for them even though they aren't able to update. I am sure they will enjoy reading that when they can get back online.

Jacob is back in the hospital with very serious complications causing a lot of swelling around his abdomen and heart. This little one has been through so much and really needs prayers for strength and endurance. The whole family hasn't had a chance to really catch their breath.

Niki's page was updated that she did well in surgery and although she is sore, she is recovering. I hope to see her updating her own page soon. That is always a good sign.

I got an email asking if it was okay to copy and paste Katia's CB page address to the people at their work so others could read info on her story, bone marrow donation, and the need for blood donation. I am ALWAYS okay with that and I very much appreciate it. I try to post things on here for others to be able to come by and find information. It is my hope that there is enough information for someone that doesn't understand much about these subjects to leave not only with a better understanding but a desire to be a part of the overall solution, registering as a donor of marrow and becoming a blood donor. Those are two big steps in saving lives.

Katia is doing okay. She has been on Zofran today and her belly is feeling better. The sores on her face SEEM a bit better right now and I really hope they will continue to improve. We have been having to "make deals" about her getting all her pills down lately. She says it is too much and it fills her belly too much. Each pill has its importance but we try to spread them out over a couple or few hours. She has been so great all this time and I certainly don't feel she doesn't understand the importance of these medicines. Please just pray for her and that little willpower of hers to just keep moving forward and doing what she has to do. I feel bad that she has to do all of this at the age of 5 but I am so thankful she is ABLE to be doing all of this and that she is still in the fight.

She likes the picture of her and the turkey in her border. She remembers that day very clearly:) As Thanksgiving approaches, she looks forward to Turkey:)

Well, that is about all going on right now. Thanks for checking in and for leaving your wonderful messages. Thank you for passing along Katia's story:)

Love, Tracy


********

November 4, 2005 3:25 PM
Second Update

The guestbook was archived over so it will load quicker:)

Love, Tracy








November 4, 2005 11:18 AM
(The new page background is Katia's first time seeing a stuffed turkey! This was taken in July 2003.)



As I type, Katia is with Ms. Michelle doing her school work. Please pray for Katia today as she just isn't feeling well. She hasn't been able to take her medicines, she doesn't want to eat, she didn't want to do school and she is just not feeling well. I have a feeling she is going to spend most of today sleeping. She has been running higher temps lately but they haven't gotten up to the point of needing to be admitted. She is normally around 35.7 celcius and she is getting up to around 37.2-37.5 pretty regularly these last 2 days. 37.0 is normal for celcius and 38.0 is an admit for her. I am really hoping that with this new medicine for her face and yeast infection that this will improve. I am thinking this all has to do with why her counts have been a little higher than normal. The weekend will tell us a lot.

Katia REALLY likes school work. She loves cutting paper, coloring and showing what she knows. She adores Ms. Michelle!! I would hate to see her not be able to do her classes as she really perks up when she is finished with her schooling:) So, please just keep this in your prayers that she will feel better and have a good weekend.

I am going to try to get around to some sites this morning so I am going to keep this short.

First, I would like to introduce you to a family that was brought to my attention. The have 4 children that are all affected by the same illness. In late November 2003 their 4 sons (Joshua - 13, Nathan - 11, Daniel - 9 and Luke - 5) were diagnosed with a rare genetic conditions known as X-Linked Lymphoproliferative Syndrome (XLP) or Duncan Disease. This is very rare with only around a 100 families world wide being diagnosed. Without treatment it is unlikely that the boys will make it into and through their teen years. The only current cure treatment is a Bone Marrow Transplant. You can learn more about the Hartley Family and their 4 boys by visiting their website. There are links on their site about prayer requests, updated information, photos, etc. Joshua had his transplant in June 2004 thanks to his Mom being found as a 9/10 match. Daniel had his transplant November 2004 from a 9/10 unrelated donor. Then a donor was found for Nathan and Luke. This donor will be used for both boys. Nathan underwent transplant recently and is now fully engrafted. Luke is to have his transplant sometime in 2006. This is an amazing family that could use your prayers. I heard about them through POSTPALS which is a card program that list children who could use Happy Mail. These boys are all listed on their site.

Thank you so much for checking in and thank you for your prayers and concerns.

Love, Tracy








November 3, 2005 5:47 PM

Hello:)

Today seemed much longer than normal but we are done and home:)

Katia did good at the Pulmonary Function Test. I think it is a lot for a 5 year old but she likes the test. We were only able to do the very basic testing but she did okay at that. She puts a plug on her nose and takes deep breaths and then blows into this thing her mouth is around. The computer measures how hard and how long she can blow for. It isn't any worse than last time and that is what we are mainly keeping an eye on.

She had her 8th dose of Pentostatin which went well. She got quite bored and like me, she says today took longer for some reason. She has to get hydration (IV fluids) first, anti nausea meds and then the Pentostatin. Once that is done, more hydration (IV fluids) and then the countdown till the machine beeps and we are out of there:) They should have done the Pulmonary Function Test in there while she was sighing out of boredom:)

Her IGG level came back at 581. Someone asked me what that is all about and basically I will sum it up this way. You have an immune system that is made up of T-cells and B-cells (lymphocytes). They are your bodies reaction to sickness. Since Katia is on so many immunosupressant drugs, this count continuously goes down. When it goes down below 500, she gets a dose of IVIG (immunoglobulin) which builds her back up. To get this transfusion, it takes quite a few people to donate blood products, then their antibodies are drawn out to make IVIG. This is a very quick summary. I say all of that to say that without people donating blood, platelets and blood products, this would not be possible. MANY MANY MANY people rely on IVIG transfusions to boost their immune systems. They are many people born with genetic defects that require this IVIG transfusion all of their lives. Hopefully Katia will stop needing these once she is taken off of a lot of her medications and she finishes with these Pentostatin transfusions. Until then, she needs this desperately. We appreciate all of you that go regularly, not so regularly and plan to start going regularly to give blood. Tell them Katia sent you:)

Please continue to keep our friends, previously mentioned today, in your prayers as well as those silent prayer requests.

Lots of love,

Tracy







November 3, 2005 9:30 AM

Please keep Bailee and Jacob in your prayers. Bailee remains in ICU on the Ventilator and Jacob D. ended up back in surgery for excessive bleeding in his bladder again. Also, for Niki as she recovers from lung surgery. There are so many in need of prayers and encouragement at this time. Prayer is an amazing and powerful tool. As we drive over to clinic in just a bit, I will be in prayer (with my eyes open of course). Prayers can be said anywhere at any time. Isn't that wonderful. I would also like you to keep a few Silent Prayer Request in mind today. I can't always be specific but God will know what you are praying for and your prayers are greatly needed and appreciated.

I will update when we return from clinic today. Katia is excited to do the Pulmonary Function Tests. She loves the breathing machine and seeing her progress on the computer screen. Then we will go over and do her next Pentostatin Transfusion.

Thanks for checking in and I will update when I get back about anything new with Katia and how today went.

Love, Tracy








November 2, 2005 5:20 PM

WBC 7.6
HGB 13.0
PLT 342 (much better)
IGG 581
Weight 17.2kg (38 pounds)


Hello:)

We had a "not so good" time at clinic but that was due to one exam Katia didn't want to have done. Her "report card" looks good other than the WBC and ANC just lets us know that she is still fighting an infection. It seems that the cream she was on for her yeast infection hasn't helped so we are changing from Nystain to Lotrimim (sp). Hopefully this will help clear it up. We are also going to change the way we are dealing with the spots on her face. There are more today so we are going to treat them as a fungus and see if that will clear it up. If not, than we will find another course of action. Me personally? I think we are on the right track now and I am hoping to see it clear up in both areas.

We go back tomorrow for her dose of Pentostatin and her Pulmonary Function Test so I will update more after that appointment.

I have to share something with you that I found on Julianna Banana's Site! It cracked me up and we have watched it quite a few times!
"I WANT IT THAT WAY" This is just too funny to not pass on. I always believe a good laugh is better than any medicine.

Also, thank you so much for those of you checking in on NIKI'S SITE. What nice messages left for her. She was to have her surgery today to remove her right lung in hopes of that being all the cancer left in her body.

Well, it is late and the day was long so I have quite a bit to catch up on. Thank you so much for checking in and please pray these new creams and medicines will do the trick for Katia.

Oh yeah, we are going from 8mg of Prednisone Steroids down to 5mg each day!! What a big jump!! Pray this goes well and that there are no set backs this time. That will be a great day when Katia is off and no longer needs these steroids. Her weight is dropping but hopefully it will level out before it gets too low again. I think she was around 41-42 pounds and now she is 38. She is okay as long as she stays above 34-35. Last time she got down to about 26 pounds. We don't want that again.


Love, Tracy



***************

November 1, 2005 10:41

First, I would like to ask you to pray for a young lady, NIKI that was recently brought to my attention. Niki has been fighting osteosarcoma since 2001. She is an amazing 18 year old with such a fighting spirit. I read through her journal history and I urge you to go meet her and do the same. This prayer request is due to her having a serious lung surgery tomorrow (Wednesday 11-2-05) to remove her entire left lung. The cancer has come back there and they feel this is the only way to rid her of cancer and let her get on with her life. Please take the time to leave some words of encouragement in her guestbook and keep her in your prayers through this surgery and time of healing. Let her know the "Ladybug" sent you over:)

Secondly, it appears Katia has awaken this morning with 2 more of these spots on her face. OH I WISH I KNEW WHAT WAS CAUSING THESE.

They are still pretty light colored with no crusting but they all start out that way. I just feel like it is something that we are missing. I don't notice anything else new on her. The other thing is the yeast infection she has doesn't seem to be clearing up this time either. This may all be caused by the same thing. I will say, Katia has always been a mystery and never comes with any simple answers. The mystery of the mouth sores is still there. Those were sent off to pathology with no conclusive findings?

Katia remains on so many medications that could not only cause some problems but also cause us to not be able to get answers on other problems. We go to clinic tomorrow so we will discuss all of this then.

Halloween? Katia had such a GREAT TIME! She didn't go anywhere but she did dress up and hold the duty of handing out candy. She did a fabulous job! What costume did she chose? Tinkerbell:) She was just adorable! My favorite was when she would bend over to get candy out of the bucket, her little wings would stick up:) SO CUTE! I was just happy to see her so excited about handing out the candy. Sharayah and Tatiana "dressed up" and very much enjoyed the evening. They were both quite hyper I must add. It was nice to see them all having fun and dancing around to music and acting goofy.

If you haven't seen the halloween pictures, the link is below in the 10/31 update.

Please pray for Katia and these mystery spots and yeast infection. I just want these things to clear up and I want to see Katia's counts back to the way they normally are. They have just really been bouncing around a lot lately and that of course keeps me concerned.

I will update more when I know more.

Oh, Katia just said to add that she needs prayers for her thumb. It seems I did a boo boo when I was cutting her nails about 2 weeks ago and it is still bothering her. It hasn't healed up and it hurts whenever she washes her hands or someone bumps it. I heard her praying about yesterday after I assume she accidently bumped it while playing.

Love, Tracy:)











October 31, 2005 5:22 PM


Katia can't decide on which princess to be so we modeled three of them:) Which one was your favorite? Katia liked the Tinker Bell because the Pixie Dust made her unable to stay still and she was flying all over the house:) Enjoy the pics.


Katia's Halloween Costume Modeling:)


HAPPY HALLOWEEN:)

Katia is trying on princess outfits and a few other ideas so it seems all day is going to be costumes:) Check back for pictures later.

Love, Tracy












October 30, 2005 8:30 PM
Second update

After updating earlier today, I found out Brant passed away late last night. Please pray for his family during this time. What a beautiful and courageous boy.

Love, Tracy




October 30, 2005 4:38 PM

Thanks for dropping by:)

I am updating pictures right now on here and in Katia's YAHOO albums over the last few days.

We went down to our neighborhood park yesterday and out for a bike ride today. It feels so "normal":)

Please keep a few kids in your prayers today as well as some families.

Bailee is back in the hospital right now. Brant is continuing his fight to stay with his sweet family. This is a very sad but inspiring story. Jacob continues to amaze people. Heidi is just amazing with all she goes through. Ben M. is continuing to move forward after transplant.

I also want to mention a few of our ^Angels^. Angel Katja's parents have been having a rough few months. Life will never be back to "normal" but these last few months have just really needed some encouragement. Angel Jalen's family misses him terribly. Some of the first few kids I kept up with are still being missed tremendously by their families and loved ones. Angel Colby, Angel Cody, Angel Casie, Angel Anthony M., Angel Maddie P., Angel Amy M. and just so many more. I know sometimes it is hard to find the "right words to say" but I am sure these families appreciate us remembering their sweet family members.

I think Caringbridge has given us all such a great opportunity to share the lives of our children and family with others. There are so many children that are continuing in this fight, so many that have passed away and there are also those that are off treatment (some for more than 10 years) and doing very well. I know I appreciate the opportunity of getting to know a little bit about each of these people.

So many of you, over the last few years, have shared with me about your joining the marrow registry, donating blood and blood products and just about how these Caringbridge stories have touched your lives. I think that is amazing.

Katia still recieves many gifts of life. Each time she gets a dose of her IVIG transfusion (to build her immune system), that is put together by many donors. It takes MANY donors to make one dose of IVIG. People recieve blood and platelets each day in order to save and sustain their lives. This is so important for people to know and pass on to their friends, family members and coworkers. The need for blood and blood product donation is actually growing. There is more need now than ever for every blood type. The upcoming holidays brings a great time to share life by pledging to donate blood/blood products each month. Also, if you haven't already, please register as a marrow donor. It is a way to potentially save a life.

We went to Estephany's last night for her baptism. It was just beautiful. She is such a bright little girl with such a great heart. There will be pictures of this on her site over the next few days. She prayed that she would be able to have her transplant soon.

Katia has had a good few days. We took her down to our neighborhood park yesterday and today she went out on her bike for a bit. She has had good energy:)

She loves seeing all the dots on her guestmap so I must tell each of you, Thank you:)

Again, thank you for all of your prayers. Thank you for checking in.

Enjoy the pictures and make sure you check out the Yahoo Albums as well for more new pictures:)


Love, Tracy







October 29, 2005 3:36 PM

Good afternoon:)

First, I want to tell each of you thankyou for putting your pin in Katia's map. There are 193 pins right now. Hopefully we can get all the states and countries marked. I am going to print this out and put it in Katia's notebook along with the messages. I have seen these maps on other sites but never thought to do one on Katia's. So, if you know someone in one of the unmarked countries, maybe you can pass Katia's page along:)

Today is just gorgeous outside!! I am not sure of the temperature but it is perfect.

We have spent the day to "fall cleaning". I am sure the girls have a different opinion than me but I LOVE to clean as long as I have the energy. It always just makes things better somehow.

Enjoy your Saturday:)

Love, Tracy


***************

October 28, 2005 11:57 AM

Well, now I am beginning to wonder if I should have called off the appt. today?

One of the things on Katia's face has about doubled in size. I am just going to keep an eye on it. If you want to see what I am talking about you can see here. The most recent pics are at the bottom of the page.


She feels fine though. She has a "movie line up" that she wanted to watch. "The Wiggles", "Sesame Street Sing-a-long", "Ms. Spider's Sunny Patch", "Charlotte's Web" and "I Spy". I promised her she could watch whatever she wanted today and that is what she picked. No school work today so it is a free day:)

You know, I was driving around yesterday to try to get some lab work done. Went to the first place and they only did work-related labs, second place closed 10 minutes before I got there and finally, the 3rd place (which is basically right by my house) was open, not busy and had a very nice lab technician that was very pleasant. She got my vein on the first try. I say all of this to say, that would normally have gotten me all flustered, but, like I said in yesterday's update, the weather was perfect!! 76 degrees and clear skies!!

There are few things that can just make your day automatically better but that is one of them for me. What is that one thing (or more) that makes your day automatically better? I can think of another thing that would do the trick but will never happen. A day that calories, fat and cholestrol don't exist!! Wouldn't that be wonderful? But, let's be realistic:)

Katia's favorite days include time with her family watching a movie she picks, eating popcorn. Another things she loves is "Cuddle Time". She likes to just cuddle up as long as I can sit still. She loves hugs and kisses and she loves to give hugs and kisses! She loves Macaroni and Cheese and Cheese Bagels!!

I have noticed she is getting smaller now since we are weaning the steroids. Her belly isn't so big and she can wear a lot of shirts she hasn't been able to squeeze into. She is happy to have some of those shirts back. I will try to get some new pics up over the weekend.

She made something yesterday that is just precious. She painted on a wooden heart. Her painting is Jesus watching over our family. I will try to get a picture of that on here too. I was really surprised at first by her choice of what to paint but once I thought about it, I thought I shouldn't have been so surprised. Katia has a heart of gold, faith and a beautiful spirit.

Love, Tracy

PS I have been slowly adding some more links to the "Drop Down Menu" above on different Diseases. If you have an idea of one that I am leaving out, please let me know via the guestbook and I will add them on. You don't have to have a link, maybe just the disease name. I would like to make this list as complete as possible without leaving out diseases that may not be so heard of. Some are very hard to find information on sometimes. Thanks:)








October 27, 2005 1:51 PM

Hello there from warm and sunny Tampa:)

What a GREAT day outside!!! This is the way it should be all over the world, every single day of the year! WOW!

Let me fill you in about tomorrow. I called the doctor and we both feel the biopsy will not be needed at this time. The spots on Katia's face remain the same. However, the spots on her legs have not gotten bigger and do not appear to be the same thing. If we need to schedule another biopsy at a later time, that will not be a problem but we want to make sure we are able to get samples of what is concerning us. So, that is off for tomorrow. Katia had no idea it was on so that is good.

I have been busy this morning trying to schedule some upcoming doctor visits between Tatiana, Myron, and myself and working around Katia's existing appointments. Tatiana's appointments have been set and those hopefully will put her puzzle together. She has her EMG on November 17th at St. Joseph under sedation and then her Neurosurgeon followup on November 22 at ACH. I really hope this gets us some answers.

You know what will be nice is to get Katia to a point of only visiting the doctor every few months. Don't get me wrong, I am not complaining about her appointments. It is literally part of our life and schedule and I am glad she has good doctors and that she is doing well. Katia doesn't complain because she really doesn't know "life without appointments". Clinic is like school to her. It is just part of her week. On the drive over to clinic, we always listen to the same CD. It is a MIX CD we made just for the car of a bunch of Disney songs and children's songs that is fun and upbeat. I can be dog tired when I get in the car and somehow, that energizes both of us:) We have Shrek, the Chicken Dance, Elmo's Alphabet Rap, SpongeBob, Peter Pan, Mary Poppins, Lilo and Stitch, etc. It is a very fun CD:)

It starts with Shrek's Swamp Song and by the time we get to clinic, we are listening to Lilo and Stitch. Doing that seems to make the trip over there go quicker:) Hey, whatever works, right?

Well, I have a few things going on at the same time so I better go:)

Thanks for checking in.

PS For those of you following Estephany, she had to go into the ER last night for bleeding. I think she was discharged but I am going to find out.


Love, Tracy






October 26, 2005 5:50 PM

Hello. I am a little later than usual. Katia is about the same so we are still "planning" on Friday but if it improves, we can call off the biopsy. We will just have to wait and see. They wouldn't biopsy one of the places on her face, it would be one from her leg somewhere. Although the facial ones are bigger but that would leave a mark and scar. Katia already has about 5 of these skin biopsies and they leave little round scars that are about the size of a pencil ereaser.

She hasn't had any cold symptoms now for 2 days so. That is better.

Katia also had another FIRST in her life!!!

She had her first haircut!!! Don't worry, it was just the bangs. I tried to get a picture today but her eyes were really bothering her so every picture has her squeezing her eyes closed and her mouth all puckered up like she was mad at me (well she was mad at me).

She had school today and did very well. She gets homework left behind to do and she likes that. Sharayah and Tatiana got their report cards today. Sharayah has honor roll and Tatiana, well she was close:) I am proud of their school grades. With everything going on, I know their lives seem very hectic at times and quite boring at other times.

I should know more about the biopsy (or no biopsy) tomorrow. I will just look her over good in the morning and see what things look like.

You know how I do silent prayer request? Well, it just means that someone (no names mentioned) is asking for your prayers. So, I have one. Please keep this in your prayers.

Until tomorrow,

Love, Tracy


******

October 25, 2005 4:09 PM
WBC 6.2
HGB 12.9
PLT 280 (better)
ANC 5000

Well, the spots continue? Not sure what is causing them or what they are. She has a few new ones on her thigh now. We have basically ruled out chicken pox or scabies. That is good.

We hesitated going to clinic today but then I had a feeling I should take her on in. I knew there would be a chance of admit depending on what the doctors thought and what they wanted to do.

We did see her regular doctor as well as infectious disease. What did we conclude? Katia is a mystery. There is a scheduled appointment to do a biopsy on Friday but that could change depending on what happens with the existing dots, the newer dots and any that may pop up as well as how Katia is feeling. We do have to go to clinci Friday no matter what just to have her looked at again and do blood counts. Other than sleeping a bit more, she seems okay. Her skin does itch though but not horribly bad. She is getting benedryl twice a day.

Also the study drug she is on, they are going to check into whether that could be causing this.

So, we are back home:)

When they said they weren't going to admit her, Katia looked at me like, "What do you mean, ADMIT?" I hadn't mentioned to her the possibility. I felt they wouldn't need to so I didn't want to get her worried.

Thank you for your prayers. Please keep these spots in your prayers as well as her overall health. Pray that the only thing "brewing" is good things:)

Love, Tracy







October 24, 2005 2:55 PM (second update today)


We aren't going to head over to clinic today. The weather is still very windy and especially on the bridges. That would be unsafe. Katia is feeling better as far as her cold goes. She is itchy on and off and the spots concern me so we will plan on going tomorrow for blood tests to check for infections, check her WBC count and probably swab her nose and throat. Her tongue has white stuff on it again which is probably also yeast (she is on antibiotics everyday which can cause this) but we need to make sure it isn't something else. I feel better when I am not the only one seeing things and I really need her doctors' opinions. Katia never does anything "by the book" so we don't know what to expect with her. We do know that she is very immunosupressed and can't afford to get sick right now, in any way.

The weather outside is very windy but the sun is out and it is cool and crisp outside! Feels like Fall:)

The map has been fun to check on during today. Hopefully Katia can get every country marked. The states are mostly very well marked:) It is amazing how Caringbridge has allowed us to make such a big world feel so much closer. Thanks!

Love, Tracy







October 24, 2005 9:36 AM
Hurricane Wilma/Katia update

We are getting some very strong gusts of wind right now but nothing sustained (staying strong for long). Again, it seems the Tampa Bay Area has been blessed. The gusts should be done by noon sometime. Then we will still windy condition as each of you up north are sending us some cold weather:) I LOVE THE COLD WEATHER!! We have cool weather arriving right after the hurricane is past. It should be down in the 50's at night and 70's in the day. I know to some of you that sounds like BEACH WEATHER but for us, that is cool.

We have lived in 2 much colder areas. We lived in Germany back in 1990-1992 and in Oklahoma from 1992-1994 and those places did get "the real kind of cold".

How is Ms. Katia? Well she may have to go into clinic today. I talked to her doctor last night and she is concerned about the cold and the spots Katia is having. The concern is that since Katia is on so many immunosuppressant drugs, that she could really have something but the steroids or not letting the symptoms really show. As we wean the steroids, the symptoms appear more. So, depending on the weather and how Katia is feeling today, she may go in for sinus scans, blood tests, ect. I would much rather be on the safe side and catch things before they get out of hand. It wouldn't take much to get Katia very sick, suddenly. We learned that lesson in November 2003.

So, I will update more later on that as to what our plans are.

Thank you so much for your prayers concerning the Hurricane! See, they work:) Please pray for Katia that whatever is "brewing" and causing her problems will either go away or be quickly and easily rememedied.

Our prayers are with ALL of those going through or have already gone through this Hurricane.

Our prayers are always with each of our other Caringbridge Families.

Love, Tracy





****************

October 23, 2005 9:07 PM
Hurricane Wilma Update


All is well here. We have had quite a bit of rain and it is thundering and lightening a bit. Wind kind of comes and goes. On the news, it was said we have a chance of losing electricity. I hope not.

Katia is asleep and tucked in:)

I have gotten more than 100 emails today just checking on us and how we are doing. Thank you:)

My email is to my mobile so, no matter what, that should work (well unless that doesn't work...) Gotta love the new millenium.

It is supposed to worsen quickly through the night (they always seem to want to come in during the night) so we are keeping an eye on things.

I probably won't update till in the morning, we'll see:)

Love, Tracy








October 23, 2005 4:00 PM
Hurricane Wilma Update

All is well. The map is looking great:)

Thanks for those of you who have been putting your place on our map above. Somehow, it has disappeared and I am fixing it so you may have to redo your entry. Sorry:(


Love, Tracy and Katia:)




October 23, 2005 12:10 PM

Outside, everything is beautiful right now:) Not much sunshine, but good.

The idea of what we will see from this Hurricane is Tropical Force winds (35-65MPH winds), a LOT of rain and it should be here by this evening and gone by tomorrow afternoon.

I just pray we don't lose or lights or have flooding. Those are my prayers. There have been no evacuation orders here so hopefully everyone will be okay.

Katia is doing good today. She does have more of those red spots like on her forehead? I am not sure what is up with that. They are on her arm, he cheek and forehead. Her WBC count has been higher than her usual so I know something is going on? She also has a yeast infection now. Maybe that was causing things to be off with her counts? We will see. I am treating all of this so if her counts come back down to her normal range, then we will say that the stuff that brought it up.

I added a Guest Map right above the journal entries. Someone gave me that idea in the guestbook:) So, mark on the map where you are located and Katia will see all the dots:)

Thank you for checking in. I will be on and off over the next two days updating that things are okay so, if you don't hear from me, then we are without electricity. I don't think that will happen though. I hope not:)

Love, Tracy






October 22, 2005 10:15 AM

This morning the Hurricane Updates seem better for us but worse for the Yucatan and the more Southern part of Florida. Those areas are definitely in our prayers. It is BAD when a Hurricane just choses to stay in one location and keep hitting that area with winds and rain.

Katia was nervous over the hurricane so I showed her the update today. She always sees that little Hurricane Icon on TV as a tornado and I think that is what scares her. One of the hurricanes from last year, Katia and I were sitting on our closed in back porch. It has a zinc roof so you can really hear the downpoor. It was totally dark and the wind was just blowing by. She had her flashlight and actually just wanted to stay out there. You couldn't hear yourself talk it was so loud. Anyway, we came back into the house which was much much quieter. She brought that up yesterday and I had forgotten about that but she remembered it.

I remember, when I was Katia's age, I was at my babysitter's house. I spent quite a bit of time there. I was in one of the back bedrooms watching Sesame Street when a tornado came through. I remember I was just upset that I couldn't watch the rest of Sesame Street. The house was very damamged by the tornado but we were all okay. It is funny the things our brains retain. My youngest memory is around 2 years old, maybe a bit younger. I had one of those little toddler bikes that you use your feet to push around. On the back of the little bike was a trailer thing that I could pile up wooden blocks on. I remember putting some blocks on there and when I got on to ride away, my sister (one year older than me) was standing on the back and I couldn't move the bike forward. I think it is funny that I remember that so clearly!

Okay, now you know about my little memories. I always wonder what my kids will remember most about growing up. Sometimes something will happen and I think, "Oh they will remember that!" and it may just be something simple but I think those are the things that we remember the most. Do you have any of those simple memories? I think it is kind of a lesson when we think back like that. I think it teaches me to treasure those simple times. It doens't take big and expensive trips and moments to make happy moments. What seems so important at one moment usually doesn't seem so important a month later. Especially as kids. We think, "I HAVE TO HAVE THAT!" and then when you get it, you lose interest.

Katia's prized possession is that famous Brown Shirt still.

Tatiana's prized possession (at the age of 13) is one of her cake toppings from her 3rd birthday. "Jolly" from the "Hunchback of Notre Dame".

Sharayah hangs on to old notes from friends and movie tickets and such.

Me? You won't believe what I still have. I LOVED MATCHBOX CARS when I was around 8 years old. My box of cars survived the big housefire we had when I was 15 and I still have that same box with the same cars inside! I also have all my childhood photo albums that made it through the fire and many volumes taken since. Now since photos are digital, I have plenty of disc with pictures.

Katia just had a good question when I told her I was updating the site. She said, "Where is everyone?" Either she thinks I am crazy typing to people inside of a little computer screen or she wonders where everyone lives:)

Love, Tracy



****************

October 21, 2005 12:24 PM

Katia is having her classes right now so I wanted to jump on here. She has not been feeling well all morning and actually just had breakfast as she didn't feel good. She always likes to start each day with a mini bagel with cheese. She normally finishes it in just minutes and has only had a few bites of this today. Please pray that she isn't coming down with a bug of some sort. With an approaching Hurricane, Katia really needs to be healthy right now. We always pray for her health.

Estephany's Page has just been updated on her progress.

I had some plans today to try to get Katia outside for a bit. Since it is overcast, there isn't much sun to worry about but she isn't feeling like going outside right now. Her plan after school is to take a nap. I expect her to go through changes as we wean the steroids and we started another wean this morning as well as adding Magnesium Supplements to bring up her Magnesium levels.

I have been watching the news on and off this morning and keeping up with Hurricane Wilma. I did go to the store yesterday and get a few canned goods, bread and peanut butter (staple supplies for Hurricane Season). We have water put away and that is about all we can do. Financially, things have become very stressed lately so we have to really pray through this time. A Hurricane was not in the plans. I got an email the other day about people living in Hurricane threatened areas and I can definitely understand why people would wonder what keeps people living in these areas or in the Carribean and such. The thing is that it isn't all the time. We have Hurricane Seasons and although we get many scares, there isn't always a hit from a Hurricane. When a hurricane does hit or comes close, our concern of tornadoes and flooding is very increased. During my "growing up years", I don't remember any hurricane evacuations until I was 15 years old. When that happened, we had just lost the house I grew up in due to a direct hit by lightening. Two weeks after the housefire, we had Hurricane Elena hit Tampa. Then we went quite some time again between Hurricanes. BUT, the seasons for 2004 and 2005 have been very scary. The good thing about Hurricanes is we do get warnings and time to prepare. I would be scared silly of earthquakes and I definitely am scared of tornadoes.

Over the last few years we have learned that many things can suddenly change a person's life for the good or bad. It is always scary how life can suddenly change but all we can do is pray and prepare as best we can. What is weird is as a Hurricane is approaching, the skies get beautiful and the weather seems quiet and at its best. I think Kody's Mom had a beautiful sunset pictures recently because of one of the Hurricanes that we were getting bands from which totally changes our weather.

So, all I can say is we are praying for those in the Yucatan right now and we are praying for us still in the path of the storm. Thank you for your prayers:)

This page is coming up to three years old and I am wondering how many of you have followed the page since its beginning. Katia was just 2 at the time and now she is 5. A lot has happened and so many have been here through the good and the bad times. I like to share the good times with everyone just like we ask for prayers during the bad times. I hope that by sharing Katia's story, it has been an inspiration to many of you and through the connections to other sites, a lot of prayers have gone up for our friends in need and those prayers have been answered. Thank you for being a part of our circle of love.

Love, Tracy










October 20, 2005 3:15 PM (NEW PICS ADDED)

10/19 counts
WBC 7.7
HGB 13.5
PLT 270
ANC 6900

10/20 counts
WBC 8.0
HGB 13.5
PLT 238 (I liked yesterday's better)
ANC 6200
IGG 726
FK506 11.5
Weight 17.9kg (about 39.5 pounds)

**See NORMAL COUNTS above for ranges**



As you can see, Katia's WBC came down from 12.5 to 7.7 and then back to 8.0.

I don't like it when they bounce around but I do prefer the lower numbers over that 12.5 number. I just feel like something is "brewing" with Katia and I don't know what really.

We did agree to go down on her steroids so she will be going from 10mg to 8mg a day. I am happy with that:) I just really want this wean to go smoothly.

Today, she had her 7th dose of Pentostatin. Her LYMPH count had gone up so we will see if this brings it back down. That is one of our signs that the treatments are working.

One concern today was her sugar level at 280. We rechecked it and it was 106 I think, much better than 280. That must have just been a "Lab Glitch" yesterday.

She has also gone from 18.2 kg to 17.9 so we can see the effect from the steroid wean is starting now. Her appetite is still good though just not an ALL DAY thing.

All in all, things to be going good and we are always pleased on the trip back home:) We learned to appreciate crossing the bridge headed home. A LOT!

Also, another set of good news! I have my computer up and running again. We lost quite a few files but the computer is okay running well. We will just have to retype a lot of things and get them back in the system. We also lost some recent photos we had taken of Estephany so I feel bad about that. I like them to be able to have photos of Estephany and their family. I TREASURE photos!!

Speaking of photos, I need to change them out so I am working on that. I took some yesterday that are cute but then I realized, she was in her school uniform. I will try to take some pictures tonight or in the morning to get on here so keep an eye out for them:)

**I popped back on here and got it done this evening:) **

Katia was just looking for messages in the guestbook and one thing she kept noticing is the number "5". She was seeing that on signs and car tags all the way to clinic today. It is nice that she can recognize letters and numbers. It feels good to see her learning and having fun:)

Love, Tracy


****************

**********UPDATES BELOW***********



THE BRICK

A young and successful executive was traveling down a neighborhood street, going a bit too fast in his new Jaguar. He was watching for kids darting out from between parked cars and slowed down when he thought he saw something. As his car passed, no children appeared. Instead, a brick smashed into the Jag's side door! He slammed on the brakes and backed the Jag back to the spot where the brick had been thrown. The angry driver
then jumped out of the car, grabbed the nearest kid and pushed him up against a parked car shouting, "What was that all about and who are you? Just what the heck are you doing? That's a new car and that brick you threw is going to cost a lot of money. Why did you do it?" The young boy was apologetic. "Please, mister...please, I'm sorry but I didn't know what else to do," He pleaded. "I threw the brick because no one else would stop..." With tears dripping down his face and off his chin, the youth pointed to a spot just around a parked car. "It's my brother, "he said. "He rolled off the curb and fell out of his wheelchair and I can't lift him up."

Now sobbing, the boy asked the stunned executive, "Would you please help me get him back into his wheelchair? He's hurt and he's too heavy for me."

Moved beyond words, the driver tried to swallow the rapidly swelling lump in his throat. He hurriedly lifted the handicapped boy back into the wheelchair, then took out a linen handkerchief and dabbed at the fresh scrapes and cuts. A quick look told him everything was going to be okay. "Thank you and may God bless you," the grateful child told the stranger. Too shook up for words, the man simply watched the boy! push his wheelchair-bound brother down the sidewalk toward their home.

It was a long, slow walk back to the Jaguar. The damage was very noticeable, but the driver never bothered to repair the dented side door. He kept the dent there to remind him of this message: "Don't go through life so fast that someone has to throw a brick at you to get your attention!" God whispers in our souls and speaks to our hearts. Sometimes when we don't have time to listen, He has to throw a brick at us. It's our choice to listen or not.

Thought for the Day:
If God had a refrigerator, your picture would be on it.
If He had a wallet, your photo would be in it.
He sends you flowers every spring.
He sends you a sunrise every morning Face it, friend - He is crazy about you!

Send this to every "beautiful person" you wish to bless.

God didn't promise days without pain, laughter without sorrow,sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.

Read this line very slowly and let it sink in...


If God brings you to it, He will bring you through it.


Wow, that really says so much.

Let's share this.




October 19, 2005 10:10 PM

I will update on Katia after we find out her counts and such from clinic.

I wanted to come here now and ask your prayers.

This Hurricane Wilma is now located right by Honduras and the Bay Islands. This area was devastated by Hurricane Mitch back in October 1998. I know this because like I have said before, we were there. Thousands of lives were lost and a lot of that is due to rain and flooding. This causes Mud Slides like the one that just recently happened in Guatemala. We talked to Myron's Dad there yesterday and he said the Island was getting a LOT of rain. I haven't been able to get through to my Dad but that is not too unusual. The phone system is not that great. Estephany's family is down there also. So, all of us are very concerned about this. So, I ask you keep them in your prayers. In Honduras, it is unlike here. There really aren't evacuation areas that are much safer than your own home. During Hurricane Mitch, we evacuated from house to Myron's parents' house just down the road. Both houses are right by the ocean. I could throw a rock from my front door into the Gulf anytime. It was right on the water.

I don't know a better place to turn and ask for prayers than right here on Katia's page. Please pass this along and ask others to pray. It looks like we will get this Hurricane over the weekend or at least South Florida. We are keeping a VERY close eye on the news. One of Myron's brothers and his family live in Miami. They are trying to make preparations now. We are as prepared as we are able to be. Katia normally likes the idea of storms so she can use a flashlight but she is not happy about the looks of this one on the news. She says it looks mean like a tornado.

I will update when we return from clinic with her counts. Thank you for your prayers.

Love, Tracy

















October 18, 2005 9:39 AM

Hello:)

I have been awake since 3:30 this morning but I am actually just getting onto Caringbridge. I had an email about Jacob D. that he was back in the hospital and needed surgery on his bladder. Please keep him in your prayers.

Yesterday, after updating, my computer CRASHED!! Normally I am good about being able to fix them and such but I can't find my recovery disc. I haven't had to use it for quite sometime. I have had the computer for about 5 years and I have maybe used the recovery disc twice. The thing is just starting and restarting over and over. Finally, I have shut the thing off. Alot of files are on there but just a few aren't backed up. I have learned my lesson on that. The ones that aren't backed up are some recent pictures and letters for KSF. Hopefully once I get the recovery disc, I can recover the computer without having to reformat it. In so many ways, things were easier (or at least less dramatic) before computers. Although I miss those days, I really miss the HUMMMMMMMM of the computer and the ability to get on get work done. I do have my laptop up and going although it doesn't have much on here, I can get online and update:)

Someday, I will have to give in and upgrade I guess.

Katia is doing okay today. Her "Mommy Radar" let her know I was awake and she woke up around 5:45 AM. She is on the pink side today. By that I mean her arms and cheeks and palms are pinkish (a very slight GVHD rash). I expect some of this as we wean though. We have clinic tomorrow so they can look over her skin and let me know what they think. Today is our day to collect urine for the creatinine clearance and tomorrow we have clinic, after school. Then Thursday, we have clinic for the next Pentostatin Treatment. I am eager to see Katia's labs tomorrow as the last ones were a bit "concerning" to me.

Well, I better get off here. My laptop will just kick me offline and make me lose my update. Not a good thing.

Do you think things are better with or without computers? I mean I know you use one or you wouldn't be able to get on Katia's site but what would you do if one day someone just said, "No more computers, no more internet?"

Me? That would be bad. I have gotten so used to being able to research on here although I do still use books also. I do not own an encyclopedia set though although I have a good amount of medical books. I use the computer/internet as a HUGE reference library. I also use it for 99 percent of my communication. I retain things better if I read them so I prefer email over phone. Plus I can return emails on my time when I can put my mind to it.

So, without computers, I would need quite a bit of time to readjust, but I would be able to readjust.

Love, Tracy








October 17, 2005 1:38 PM
(NEW PHOTOS ADDED IN PHOTO ALBUM-LINK AT BOTTOM OF PAGE-YAHOO ALBUM)

Good day:)
Katia had quite the nap yesterday. She slept until nearly 8:00 PM from a nap that started shortly after 4PM. I never thought she would go to sleep last night but she did around midnight. (That is normal for her)

Today she feeling good and playing. She does have a few new spots on her forehead (like the one in the picture at the top of the page). That spot is also still there but clearing up. I am not sure what these are but I am just looking at this way right now, KIDS GET SPOTS. I begin to worry over every little spot or bruise but I am trying to get away from that.

I also wanted to let you know that Jerry's Site has been updated as Carol and the kids just came back from a visit with him in Seatle.

I want to thank each of you for your prayers for Estephany and her family. We are working on a few things for them and we are waiting to hear back from one of the hospitals we submitted her case to. They have basically gotten a "NO" from every hospital but this one but they are taking a while to get back with their final answer so maybe that is a good sign. The hospital has stayed in touch with us and her doctors for regular updates on Estephany and we are working on building up her Medical Fund as much as we can. IF Estephany is accepted for transplant on a charity basis, there is still cost involved such as transportation and living expenses. It is our prayer that she gets accepted quickly and can work towards recovery. She is getting worse as each day passes. That is why we have been trying to do things to help her enjoy her days right now. Quality of life is very important. Estephany is a 10 year old and we want her to feel that way. We appreciate the help towards doing this. There have been so many prayers and the family appreciates this. There have also been donations to help them with immediate needs and most recently, a shopping trip. It was nice watching her try on clothes and pick out some outfits. So, thank you:)

Ask me what Katia is doing right now? Mind you, it is not even 2PM.

She is setting the table for dinner! I am sure she is about to give a suggestion of what we should have. I am glad her appetite is still going good with us weaning the steroids. I looked up when her appetite started going away last time and it was at 8mg of steroids a day. Right now, she is down to 10mg. The good thing is, she seems to be having less temper flare ups. I mean, they are still there but I have to remember, she is 5. The other thing that should adjust with the wean is her bedtime. She should get closer and closer to a normal bedtime. I remember that last time also. We got down to 5 mg a day, if I am correct before she completely flared back up.

Well, I said I was going to do a short update and I am many paragraphs away from a "short update". Also all Books and CDs have been mailed out as of 2 days ago I think. Katia has been busy signing books for an upcoming event here. For those of you that have her books that she signed, my favorite letter of hers is the "i". It looks like a lollipop:)

Lots of love,
Tracy


*****************

October 16, 2005 5:50 PM

Ms. Katia is napping on the sofa (she looks so snug and cute) and I was just trying to check on a few sites. Please keep the family of Angel Kaycey G. as she passed away. She has an amazing story for those of you who hadn't followed her site. I can't imagine how much her family will miss her.

Katia has enjoyed the last few days with the girls home but they are back to school tomorrow. I have felt quite under the weather this weekend so I have been laying low. I don't like to feel bad. I guess nobody does but I am not really good at just not doing things. Hopefully I will snap out of this.

I feel bad because I don't so many guestbooks much (hardly any really) but I do get by a lot more sites these days then I did a few months ago. Each of you are always in our prayers and definitely in my thoughts. I feel like I have a HUGE extended family. That includes all of you that check up on Katia and I see so much in the guestbook (I think Janice "takes the cake" on sign ins). I feel like each of you are always right there and part of our family. So many of you have passed on Katia's sites to your family and coworkers and I hope it can continue to be an inspiration to me. I know Katia is a BIG inspiration to me, HUGE! Especially when I feel bad and want to complain. I have to try to stop myself. It doesn't always work though:)

Well tomorrow, my little plans for Katia (school wise) is to work on cutting out some "O" pictures from magazines. We try to do that with each letter and the O's have slipped right by us. It helps her to put words with the letters and she remembers them better. Other than that, we need to practice writing some of her letters and then she said, "I want to have fun." She likes FUN:)

Well, I better scadaddle...

Love, Tracy








October 15, 2005 11:26 AM

As I type, the rest of my family is on the porch having a "ball war". Katia is basically shielded with a very large stuffed ladybug! She is the cheerleader. I decided to get out of the way. I am too slow for that kind of stuff.

What is your favorite day of the week?

Mine is any day that things seem to slow down with no place to really go or not much to do. There isn't ever a day there is absolutely nothing to do because if there is, I find something to do. It is nice to hear them out there playing though (as long as nothing breaks). Our neighbors are probably wondering what is going on.

Well, I hope you each have a good weekend. I miss hearing from some of you but I assume things are well and moving along. I can't believe the end of the year is near again.

Love, Tracy


PS Have I told you? I LOVE THESE KINDS OF DAYS!!!!







October 14, 2005 11:45 AM

Hello all:)

I hope this finds each of you enjoying a good Friday (TGIF). Katia and I were just checking out the GB entries and I wanted to do a quick update while I am on here.

Katia is playing Nintendo with Tatiana right now. She is very into playing Mario Party 2 and enjoys doing that with Tatiana. She wants to get it for her GameBoy to play at clinic but Tatiana is showing her the "tricks" of the game:) I am really surprised as to how Katia has picked up on playing video games these last few months. All that time in the hospital, she was never into video games much and now she is REALLY into it!! I am not sure how many Moms will agree but I LOVE to see Katia on her GameBoy. It just seems so "age appropriate" I guess. It is nice to see her enjoying things that other kids her age like doing:)

The downside of this is that Katia has really been having a lot of eye irritation lately. Last night, she just kept going to bathroom and splashing water on her face. Her eyes have been more puffy than usual and just causing her a lot of grief it seems. I was going to call one of her doctors but she wants to wait until the appointment. I think she wants to get back onto the Cyclosporin Eye Drops and see if that helps. She doesn't want to have another eye exam but I think she may need that just so we can see the Optic Nerve and Retina and make sure there aren't problems in those areas.

Katia just popped up here next to me while I am updating. She is wearing her ladybug antennas on her head:)

The bruising on her legs isn't going away but it hasn't become any worse so I think it is typical bruising. I have been really praying about that lately as it was becoming quite a concern for me. I appreciate each of your prayers as well.

That is about all that is going on right now. We are due to clinic this coming Wednesday for blood counts and to hand in the Creatinine Clearance urine. I also have just update Estephany's Page with a new picture and some news of what we did yesterday with her:)

Thanks so much for continuing to check in on Ms. Katia.

I asked if Katia has anything to say to each of you and she said, "I am having fun." She is so sweet:) I just got a few ladybug kissies:)

Love, Tracy


************

October 12, 2005 12:02 PM

Hello:)

As I type, Katia is in with her teacher. She was buzzing around here waiting for Ms. Michelle.

I am looking forward to the 4 days off for the kids. It will be nice to have a "Long Weekend". I am trying to get things done around here so I am not too busy for those days. I was trying to install a new water filter in the kitchen (those that attach to the sink faucet) and forgot to put the washer first. Now I can't get the little attachement off and have torn my finger tips up trying. I have decided to hand it over to Myron. I am stubborn trying to do things myself and now everytime I use Germ X, my fingers are going to remind me NOT to be so stubborn.

I have a prayer request for you for a family that I know. It is a "Silent Prayer Request" for privacy but just please keep them in your prayers.

Also, please keep Estephany in your prayers that she can stabalize. She is needing platelet transfusions more often and she is really bruising a lot more lately. There is some hope that one of the contacted hospitals MAY take her on. They are still presenting her case to their board. The fact is, there may be hope. The family has been trying to put money aside, via donations, into Estephany's Medical Fund to go either toward transplant, transportation cost, and also trying to help get Estephany's father and baby sister up here to be with his family. No one knows what each day brings for Estephany so we are all trying to concentrate on her Quality of Life also. Estephany is just 10 years old and just wants to do things 10 year olds like to do. So, thank you so much for your prayers for Estephany.

How is Katia? Well she is continuing to have eye troubles on and off. Mainly pain. She doesn't say anything about blurring much. She just cries when they hurt and either ask for drops or her pain meds. Remember Katia's whole struggle began with her right eye in January 2002, a tumor in the orbit. We always follow her eyes closely. She is still bruising a bit more than usual but she is also a bit more active so, I will just see what her next labs show. We aren't due to go back until next Wednesdday.

Thanks for checking in:) I may try to change out some pictures later today if I get the chance.

Love, Tracy







October 11, 2005 3:19 PM

Good day:)

Katia has been busy telling me little stories all day. She draws pictures, cuts them out and makes up stories. She is actually quite good at this.

She has school tomorrow. Her homework is done, in her planner and ready to present to Ms. Michelle. Katia adores her teacher.

Our week here is short for school. Sharayah and Tatiana will be off Thursday and Friday so that gives them a 4 day weekend.

We are skipping out of clinic this week if things continue moving along. Of course it is hard to go without blood counts during that time. I am used to getting them each week BUT it is nice to be able to stay on this side of the bridge. That drive to St. Pete is long.

Katia is doing okay. Her appetite is staying pretty good so far. The only thing I am noticing is bruising again on her. She hasn't been having too much of a problem with that until now. She had quite a problem with that when she was in remission back in 2003, enough that we started keeping a "Photo Journal" to track it. Hopefully her platelets haven't come down anymore than they did since last visit. They had quite a drop then. We will see next week. As far as her eyes, they look irritated but she isn't complaining so I am not going to bug her about them. She will let me know when they feel bad without me asking her all the time.

Our neighbors brought over a big Halloween Pooh Bear with a cape. You plug it in and it blows up. It is HUGE and at our front window. I will post some pictures tomorrow maybe. Katia LOVES it!! It was quite a surprise to her. Thanks Anne and Matt:)

Well, I better get a move on. We have been busy around here with a few projects and I like to be done before the girls start coming home from school. It is that time now.

Love, Tracy

PS Please keep Bailee in your prayers as she had a fever. Also, Mark D. was admitted for fevers.







October 10, 2005 12:21 PM

Light the Night pics are up in the Photo Album:)



October 9, 2005 4:12 PM

Hello:)

I don't have the pictures up yet but we had a lot of fun last night at "Light the Night" here in Tampa. We didn't have our own team this year as we went out in support of "Jerry's Team".

This year Katia was out of a wheelchair and walking (quite fast I might add). She was so happy to get her white balloon to carry. The white balloons are for the survivors and the red balloons are for the rest of us. I wish I had seen a LOT more white balloons out there. I think I counted 12. There were a LOT of red balloons showing all the people that have their hearts into finding a cure:)

Jerry's wife and kids were there and one of his sons told me, "Next year, my dad will get to walk with a white balloon." That was so nice to hear. They had made a beautiful poster for their team. I will try to get the pics up here tomorrow sometime.

Katia is doing well. She has been having some difficulties with her eyes so we may end up going to a doctor in Miami. It depends on if they get better or start giving her more or different problems. She is complaining a lot more about them really hurting, aching and being blurry. I don't want anything to get by us and affect her sight.

Estephany just came home. Myron went over to pick them up from the hospital. She says she is feeling better. I want to thank each of you for your prayers and reaching out to Estephany and her family. God bless you. There seems to be so much going on in the world with the hurricanes and the earthquake and just so many people in need of help. I guess the best we can do is to start by helping one person at a time. Thank you.

Katia is looking forward to school this week. She is really picking things up fast and doesn't get frusterated like she did in the beginning. Her new letter this week is "O". She has learned M, N, T, F, H, & A. She is happy when her teacher is happy with her:) She likes to hear, "Good Job!" She is also into playing her video games more which shows she is understanding them better but also helping with her hand/eye coordination. She is such a perfectionist in many ways and gets frusterated easy if she messes up but she is getting much better at just trying again. I was getting worried about her breaking something (like her V-Smile that has been smashed and crashed when she messes up) but nothing has broken. Part of that little temper is due to steroids also which hopefully we will continue weaning without a flare up. I am trying to find out what the dosage was last time when she flared up. Part of me says 7mg and the other part of me says 8mg. I will have to go back and look in her charts.

Well, I have gone on long enough. I will work on getting the pictures uploaded and sized down and on the site tomorrow.

Katia says to tell you a "BIG HI" so there you go:)

Lots of love, Tracy

PS Terry, that is okay that you signed the guestbook twice. We are Kody fans too:)
I have SAID I am going to try to switch to DeCaf Coffee so we will see how I do. Hopefully my brain will still function.



****************

October 7, 2005 11:05 AM

Hello:)

Katia is doing school right now with Ms. Michelle so I wanted to jump on here right away and update.

Clinic went well yesterday. We were there 3 hours but it didn't seem that long so that is always good. I am used to long stays and it really doesn't bother me as long as things are progressing along and not just waiting. We rarely wait so that is good. We started going the day before the Pentostatin treatments just so we can get all the labs done and the levels reported back by Thursday morning so when we show up for treatment, Katia can get plugged right in and be done sooner. It is working out great! Although it is two days in a row to clinic, it makes sense:)

Okay, how is Katia? Well her kidney function remained the same. It didn't improve but it is no worse so I am happy with that. This treatment seems to be doing what we want it to do and we knew it would be hard on her kidneys. She does drink a lot so that keeps her kidneys flushed (Katia understands about kidney function report cards and drinking). She was very unhappy with Wednesday's "report card" (lab results) and she has voiced over and over she doesn't want more surgeries or to be admitted to the hospital. I told her it isn't like that, she is doing well and doing everything she is supposed to. She is a BIG HAND WASHER and follows the rules of wearing her mask, etc. It is good that she understands the importance of this so I don't have to be the "Rule Police".

One bit of good news... Katia's Doctor said she could go to the grocery store or drug store with me. BUT, she of course must wear her mask! She must GERM X her hands, and Walmart is not going to happen right now. We can handle those rules. Katia has missed going to the store with me since she was diagnosed in 2002 for the most part. So, yesterday, she went to CVS with me to pick up her medicines and pick out a toy! She was so HAPPY!! She was singing all the way to the store... "I get to go inside, I get to inside..." and when we got there, you would have thought it was Disney World! She was so happy. She met her pharmacist and the pharmacy staff (they see us alot in the drive thru) and she was just so happy looking around the store and down the aisles. She picked out a little doggy toy that has a little pet shop. She is just so happy and wants to GO GO GO and of course I can't blame her but the fact is, she has to stay away from sickness and it happens to be the beginning of flu season. Although she remains so immunosupressed, the fact is she is 20 months out of transplant and she just needs some type of an okay for something. I feel comfortable with this and will just very much limit it. At the same time, she was happy to get a "Yes" answer to her plea. She ask things all the time.

She wants to go to Toys R Us and I am going to try to do that when the kids are at school so it is less busy. She will have on her mask and her Germ X will be with her. She has missed out on so much and I am just glad she is doing her Homebound School and can visit the store sometimes. I was just as happy as her:)

Please keep her in your prayers concerning her counts being off and her kidneys. We may get to skip clinic next week seeing she just got her IVIG transfusion recently and she isn't due for Pentostatin again till the following week. It depends on her skin condition with the lower steroid dose. She is now down to 10mg a day as of today. So, we are getting close to the amount she flared up with the GVHD last time. She says she will be fine and I am going to believe that:)

Another prayer request of hers is for her eyes. They have been giving her quite a bit of pain lately, both eyes. She doesn't want to go to the eye doctor again but late last night, I had a talk with her about it and we both agree that if they keep bothering her, we have to go check them and see what the status of the tumor is behind the right eye and why both eyes are bothering her. Her vision has always checked to be good but as she gets older, she is better able to have her vision checked and since she did have radiation to the brain and eyes, we need to keep behind her eyes and know if things change.

Thank you for your GB messages, thank you for your prayers.

Now, I am going to go update on Estephany as she is in the hospital right now.

Love, Tracy








October 5, 2005 3:00 PM
WBC 12.5? (up from 5.0 last week & in the high range)
HGB 13.2
PLT 239 (Has been dropping)
ANC 11,300? (in the high range)

We are back. Katia had school this morning and then we went to clinic to hand in the pee and have labs done for tomorrow. I must say I am concerned about these labs. It isn't too abnormal for Katia's WBC to bounce between the 3's and 7's but all the way up beyond 12? That has only happened 5 times since she was diagnosed and two of those times were drug induced rises with GCSF (a bit medical for those not going through these labs all the time). Anyway, it has me concerned.

It also has me concerned that her platelets have been steadily going down but that could be due to steroids.

I just don't like to see labs out of whack. Although, I know that these labs aren't her "Health Bible" and there is a lot more to it than these few numbers, it is kind of a map of "normalcy" that we follow.

I am really hoping that her kidney function shows improvement with the urine we handed in today. We will find that out tomorrow. We have our appointment for the Pentostatin Transfusion. I was thinking of asking for these labs to be redone tomorrow but I have decided against that. I think I will just give things a week to do what they are going to do and hope this was just due to something off. The past few times it has risen like this, she has been sick, quite sick. She appears fine right now other than a few little mysterious dots here and there and some bruising. She doesn't appear to me to be the right kind of sick to match those numbers though.

I do hate worrying.

Well, as I type, Katia is lining up her Care Bears next to me and singing. That helps that she is happy:)

She wants to go play on the back porch and I promised I would keep this short. She says I should let you know she had school today and she really likes her teacher. She also likes writing and coloring with her markers. Her favorite thing to do is cut and paste. I should teach her to type:)

Off to the back porch.

Love, Tracy



*********************

October 4, 2005 3:41 PM

Good day:)

Although it has been quite a busy day so far, it has been a good day. It is so pretty outside here today. There is a nice breeze and just a clear sunny day over our house:)

Katia has been playing and singing so that is always a big plus to my day.

Today is the day we collect pee all day (12 hours) and take it to clinic tomorrow for her Creatinine Clearance Test (Kidney Function). Well, she has only peed ONCE today!! She did that only because she saw I was getting flustered. These last few tests have showed her kidney function going down each time and I really want this one to show her kidneys are improving. The treatment of Pentostatin she gets every two weeks is hard on the kidneys but she has always done well on anything that says it is hard on the kidneys? We will see. Yesterday she was so "pink and pretty" and today her lip is peeling and she has bruises. I miss the days when a bruise was just a bruise.

I remember, before Katia was diagnosed, when she was 2. She would have bruises all over her shins and I would question Sharayah and Tatiana about what they were playing with her. I noticed they were just getting worse and worse and I brought it up to her pediatrician. She said it was just a "two year old thing". I told the pediatrician it looked like I was rolling Katia to her office for her to be THAT bruised up. I never let it go really. I am glad I am persistant (some people say annoying) and that I follow my heart.

Anyway, to make a long story short, I look forward to the day when a bruise is just a bruise again. Is that a weird thing to look forward to? I also very much look forward to taking Katia to a grocery store or a department store and telling her to stop touching everything! I am not sure how forward I actually would look to taking her and leaving her at school so I won't talk about that:) I do look forward to being able to go to church as a family or to a movie, just things that we used to overlook. We try to figure out things to do around here that all three girls, and us, will enjoy. We like being at home.

Okay, Katia is hiding (under the dining room table) and she asking me to come see if I can find her:)

Lots of love,

Tracy







October 3, 2005 12:13PM

I figured I would update and let you know we are working on some new pics right now. Actually they are taking forever to upload.

Since Katia has such low IGG counts usually, she still is unable to go places. We do go to outdoor places when there isn't much sun though. I LOVE to take pictures but I think we have pictures in every room of the house, hundreds of them.

However, today I was able to get a few. I had gotten out my laptop to update and check on kids and when I went for a coffee refill, Katia decided to try out my laptop. In my house, that computer is off limits but she was actually working on it. She got into "House Shopping". I hope she didn't buy anything!

She told me, "I won't tell the girls you let me use your computer..." like this is an inside thing of ours:)

I guess Sharayah and Tatiana can find out about her using it when they check the website:)

I will get the pictures on here in just a bit. I told Katia I would take her for a drive today and that is next on our list.

I very much look forward to the day when she can go to the store with me or walking around the mall. I used to love doing that with Sharayah and Tatiana at this age. Both of them LOVED the grocery store! Katia has missed out on a lot of that this last 3 1/2 years so I guess we will just have to make up for that in adulthood:)

She was supposed to be taking part in a wedding coming up. It was to take place in New Jersey. Since things haven't gotten to the point that Katia can travel, the dress, shoes and flowers are coming to her. Sorry Karen and Mark but we will get some awesome pictures to add to your album. The shoes are here and Katia loves them!! You know how she likes to dress up like a princess:)

Well, let me get back to working on the pictures. I told Katia we would leave when the clock said 1-2-0-0 and it is 19 minutes past that. She is coloring right now so she isn't watching the clock. I better hurry up.

Love, Tracy






Peppers designed in Katia's Honor

Go to the www.createapepper.com and enter in the following codes:

969
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1341
6330
3729
5997
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3870 (Katia's Design)

Thank you so much for these:)



****************

October 1, 2005 8:43 PM

Good evening:)

I was on here checking on some kids and I just wanted to drop in and ask you to go check on Jacob D. Things have certainly turned around for him and I am so glad to be able to share good news!!

Thank you for checking in. Katia says hello. She has had a good day with a LOT of laughing and playing. It makes Myron and I so thankful to hear her belly laughter!!


Love, Tracy






September 30, 2005 10:16 AM

WBC 5.0
HGB 13.2
PLT 243
LYMPH 1.0
ANC 3700

Good morning:)

Katia had her IVIG transfusion yesterday and all went well. Hopefully that will boost her up for the next month. The dose was a bit less than she normally gets so we will see how it holds on.

Katia's teacher is about to get here for classes so I wanted to jump on here and update. I get emails when I don't update and it is so sweet to see how concerned people are. I was going to update when I came home last night but it was already dinner time when we reached home and then time just goes by so quickly. Plus we are really big on watching "Survivor" as you know and last night was Thursday:) Katia likes the yellow team (she likes the yellow buff) but it is early on so we are cheering for everyone at this point. We have watched Survivor since the first season. I was pregnant with Katia when the show first started. We have watched many many episodes in the hospital, the Ronald McDonald House, home, etc. It is something that we usually all try to watch together, as best we can. Katia is our SURVIVOR:)

Katia has done well on the 12mg of steroids so next week, we plan to drop it down to 10mg. She is getting a faint rash on her arms which may or may not be GVHD but for now, we are just watching it and praying it doesn't flare up. Her LYMPH count has remained where we want it and when the GVHD flares up, that count normally rises also. I added that count with the labs and will continue to post that also.

Well, I better close this out. Katia is eager for her teacher to get here because she did EXTRA CREDIT work and she wants to show it off!!

Love, Tracy





*************

September 27, 2005 2:40 PM

PLEASE PRAY FOR KODY AS HE IS HAVING AN EMERGENCY MRI TOMORROW. THEY SHOULD GET RESULTS BACK TOMORROW ALSO SO I AM SURE THEY COULD USE MANY PRAYERS.



I wanted to share a picture with you.



That is Estephany with Katia. We just fell in love with that picture as that really shows, "Sharing Hope on the Wings of a Ladybug" so well. Katia knows that Estephany needs "new blood" and prays for her to get her new blood throughout the day.

Katia is doing well today. Although all of her homework is done for tomorrow, she wanted to do some "school work" so she is keeping my computer tied up for the most part.

She is a very good little student:) I knew she would be since she is always so eager to please.

Estephany is home from the hospital now. The papers we mailed off to extend her Visa were actually being sent to Texas so hopefully they reach there safely and we can get everything taken care of. Her mom is a nervous wreck right now and I am sure that would make her feel better to have that behind them.

Well, Katia says she has "work to do" so I guess I should let her get back to her work:)

Thank you so much for the guestbook messages. I couldn't sleep last night and I came in and read through a major part of the guestbook! I hope you know how much your words encourage:)

Love, Tracy








September 26, 2005 2:25 PM
SECOND UPDATE TODAY

Actually I just wanted to come add a few things. See you don't hear from me for a couple of days and then BAM, you hear from me twice.

There was a question in the guestbook about how to say Katia. Well, we discussed this as a family and everyone has their own ways of how the pronunciation should be written. At the top is how I found it and to make it even easier I guess, it would be "KAH-tia".

Also, Estephany's Page was just updated and I am working on uploading a new graphic on here to share with you. Either today or tomorrow.

Katia says hello to each of you and to tell you she is doing school work right now. She is learning about the letter "H" and has recently learned the letters M,N,F,T and a few others:) She is loving learning!

Love, Tracy

PS Her IGG level came back low in the 400's so we are going in Thursday to get IVIG (5 hour transfusion)

Also, Tatiana's EMG (Nerve study test) is finally set for November 17th at St. Joseph and she will be sedated for this.






September 26, 2005 10:24 AM

All is well here:)

Sorry to keep you waiting. I really thought I had updated on Saturday but I can see either I didn't or I never posted it. My bad.

Katia is doing well. She is down to 12mg of Prednisone daily from 15mg per day. I am not sure of the weaning schedule yet. I am not sure I really WANT to know right now. I just want to see that we move along in the right direction with no setbacks. I am a bit concerned already.

This morning, she has a rash on one side of her face. I have ruled it as GVHD as I am hoping it is something else. I just need to keep an eye on it over the next few hours. The other thing we are watching right now, her stools. They have become lose and appear to have a bit of blood in them. Again, we are watching this. I just really pray for no GVHD setbacks. Katia came to me about the rash on her face after she "studied" herself in the mirror. She knows the routine areas we watch. She came to me and said, "Oh look!" Like she was just beyond words. But, I told her it could be anything. She doesn't want another rash because she remembers going to the ER with a rash and coming home with all the steroids again. She may be 5 but she understands a LOT, too much sometimes.

Well, I have some kids to check on.

I want to update you on Estephany. She was admitted due to an enlarged bruise on her arm. It seems that a past IV had bled out and caused this clotted area so they admitted her to keep an eye on it. She has been there since Saturday and will hopefully come home today. Myron and Tatiana went to visit with her last night in the hospital. She had some mail that came in so they wanted to deliver it to her and cheer her up. Thank you for the "Happy Mail" to Estephany. We have been working on getting her Medical Visa extended and have finally gotten all the paperwork to get and mailed off. Hopefully it will go smoothly and she will have her to extension soon. I know that will be a relief to them. We try to do what we can and find what help we can because we know how much stress they are going through. It is extra hard due to the family being seperated. So, thank you for all you have done.

Well, thank you so much for checking in. Love, Tracy




September 23, 2005 3:21 PM
2ND UPDATE TODAY

Please keep Kody Bear in your prayers. Things have gone downhill for him from last night and they are needing to recheck him. He has been having breathing trouble and Kim says both eyes appear to have rolled upward. He has been very sluggish and sleepy as well.

Also, Chance's Mom, Patty has passed away from Cervical Cancer so please keep this family in your prayers during this time.

Love, Tracy

PS A big prayer request for those in the path of Hurricane Rita. Luckily it has weakened some but it is still projected to do a lot of damage.





September 23, 2005 12:16 PM

Hello:) To answer a question in the guestbook, Katia is pronounced (KAH-tyah). Hope that helps:)

I never got around to updating yesterday so this may be long.

Katia did have her Pentostatin treatment dose #5 and the big news...
WE ARE GOING TO BE WEANING STEROIDS!!!

This could take a while but we are headed in the right direction with this. She has gone from taking 15mg a day (this goes by a person's weight) down to 12mg a day!) She is as happy about this as we are. I ask you to pray that this wean goes smoothly. Each time we have gotten down in the weaning process, she has flared up with the GVHD. We don't want that to happen this time and that is hopefully what the Pentostatin will stop from happening. I will say, I feel much more positive about this weaning process than I have in the past. Katia's eyes look better, he skin looks better and even her mouth looks better right now.

So, Katia is on a POSTIVE right now:)

Now let me update a bit about Estephany. We have gotten such a positive response of ideas and how people want to help. Thank you:)

Estephany was over here yesterday with her Mom so we could fill out some paperwork for her medical visa to be extended as well as let her Mom make some needed phone calls. While Katia and Estephany played together, her Mom and us had a heart to heart talk. Her Mom is really struggling with having to watch Estephany have more bleeding troubles more often. She wants Estephany's dad to be able to come up here and spend time as well as their little 10 month old baby. Her dad has to apply for a travel visa for this to be possible.

A lot of people have emailed me about different hospitals that come to mind. Estephany's doctors (which are also Katia's doctors) are communicating with these hospitals as well. Not every hospital that does transplants do transplants on Fanconi Anemia patients. This takes the possibilites of a "Yes" down even further. The hospitals that do, have not responded to take a "Charity Case". The fact that Estephany doesn't have insurance is not the same as if an American Citizen or even a Resident not having insurance. There is no way of qualifying for different financial aides. Therefore, it would have to be a complete Charity. At the same time, since Estephany's Fanconi Anemia has already gotten to the stage of Bone Marrow Failure (Aplastic Anemia), it makes her case even harder for many reasons. There is just so much to look at it and measure the possibilities. Since I KNOW that her doctors are doing all that can be done to try to find a center to do a "Charity Case Bone Marrow Transplant" we are focusing on what is going on here and now with Estephany's quality of life. We want to make sure she has her needed medicines which she does for the remainder of this month. That medicine helps with her bleeding. It doesn't stop the bleeding. The other thing we are doing with them is communicating with different people on their behalf due to the language barrier. I have been trying to get "Happy Mail" to Estephany using our PO BOX so that her spirits will be lifted. Her Mom loves to see her daughter happy. Estephany is very smart for her age and she is worried about all that is going on. We want to help to allow her to be a kid and as happy as she can be right now.

I appreciate all that everyone is doing and all the prayer and efforts that have gone into Estephany and her family. We are trying to help in any way we can to speed up the process of her dad getting his travel visa so he can get up here and the family can be together. We do not know what tomorrow brings for Estephany so our prayer is always for a better tomorrow.

I am going to add this update to her page as well.

Thank you so much for all of your prayers. I am going to add a bit more of an update on Estephany's Page about ideas for "Happy Mail". Updates are always added to the bottom of her page.

Love, Tracy






September 21, 2005 4:55 PM
Labs from today
WBC 7.2 (up from 3.9)
HGB 12.8
PLT 312
ANC 6200 (up from 2100)
IGG 465
FK506 7.1

Katia's counts seem to bouncing around a lot lately especially the WBC and ANC which go together.

More after clinic tomorrow:)

Love, Tracy






September 21, 2005 12:16 PM

As I type, Katia is with her teacher:)

First, I have to share with you what is going on with Estephany and tell you a story about her.

Estephany's platelets were very very low which is what caused the issue of the bleeding. She was admitted and treated and will hopefully be released today or tomorrow. I am thinking today. I know her Mom feels secure when Estephany is in the hospital but of course, it is always better to be home.

I have to share this story with you. Yesterday, Estephany went to the playroom and when she came back, there was a bouquet of balloons with a teddy bear laying on her bed in her hospital room. She told her mom there must be some mistake and those must be for someone else but she looked at the card and her name was on it! She was SO HAPPY! Her mom said it just made her smile for the rest of the day and Mom was so touched by the kindness also. (Thank you Pam for sending those)

Estephany and her family are just very sincere, appreciative and very humble people who want Estephany to feel better and have a better chance at life.

I also want to share this with you. SO many of you have done so many nice things. I am not usually one to mention too many names as I never want to leave people out. The other day I had mentioned some personal needs for the family. The response brought help for one of those problems and again, the family was so very thankful. (Thank you Amber)

For all of you that have sent donations, the books are packaged and ready to mail (tomorrow) as well as a thank you letter. And for all of you that have been praying and praying for Estephany, prayers bring answers in many ways and your prayers are helping and also so very appreciated. God bless each of you for caring.

I will update Estephany's page this afternoon after we get back from clinic. We don't normally go to clinic in the afternoon but this is supposed to be a quick visit to hand in urine and run some labs so hopefully we are right back:) Katia is eager to go! She likes clinic:) Everyone is always very nice to her and it makes her feel right at home. There were a few concerns with her last labs and such so today, hopefully things have improved and all will be set for the Pentostatin Treatment #5 tomorrow. ALSO, we are planning to start weaning steroids this week!!!! That will be a huge step in the right direction:)

I think that is about all for now. I will update with today's counts later.

Tatiana very much appreciated all your guestbook messages, cards and gifts for her birthday. She left a message in the guestbook for you:)

Lots of love, Tracy



**************

September 19, 2005 8:30 PM

Please keep Estephany in your prayers as she has been admitted for bleeding.

Love, Tracy






September 19, 2005 11:30 AM
(NEW PHOTOS IN PHOTO ALBUM)

Katia is in USA TODAY, September 19, 2005 with the Leukemia and Lymphoma Society's National Man of the Year, Jim Morrison. The paper is available nationally so you can grab a copy. Katia had a lot of fun at the photoshoot for this ad!!

Love, Tracy







September 18, 2005 6:00 PM

Please keep Stephanie H. and her family in your prayers in this very very difficult time.

Also, please keep Estephany and her family in your prayers. There is an update on her page as to what is going on as well as more information about Estephany Nicole, herself. You will see instant changes on the site.

Love, Tracy







September 17, 2005 4:37 PM

All is okay here:)

We have just been a bit busy with Estephany and family. I just added some recent pictures on her site.

Katia is doing well and Tatiana is very much looking forward to her birthday tomorrow! I can't believe I will have TWO TEENAGERS in my house!! They are good girls though:)

I want to thank you for your prayers and emails concerning Estephany and their needs right now. Quality of life is so important when it seems everything else is out of your control.

About Katia? Our next appointment is on Wednesday. We will hand in our Creatinine Clearance test as well as have her labs done so we can get her report card on Wednesday. That way, Thursday is just the treatment and maybe things will go quicker. So we will be over there Wednesday and Thursday of this coming week.

I should keep this short. Katia is sitting here pulling my arm asking for a snack and I keep having to backspace and redo my typing. She is acting more like a 5 year old each day:)

Love, Tracy








September 15, 2005


MOVIES FOR YOU:) ENJOY!! LOVE, KATIA

Katia Jamming with Daddy 9/15/05



Katia Jamming with Daddy Pt. 2 on 9/15/05




September 15, 2005 5:50 PM
WBC 3.9 (low and down from 8.5)
HGB 12.4 (Good)
PLT 286 (Good)
ANC 2100
FK506 6.2 (We want this around 11)
IGG 528 (running low but okay for another week)
Height 95.3 cm (3.12 ft)
Weight 17.8 kg (near 40 lbs)



Remember the normal lab counts are always listed above on the page for reference:)

HIYA:) Well, today was long but not for any other reason than a complete lack of sleep last night. Katia was up ALL night! She couldn't sleep so she just kept getting out of bed and going around the house pulling out toys, playing dress up, using the potty, and visiting with me:) I think a lot of her insomnia will be solved once we get her down about half way on the steroids. Hopefully (please pray for this) we can stop weaning her next week. I imagine the wean will be 1mg every other week taken away so that would say she would be done 30 weeks from the start of the wean. Mind you, each time we wean, we end up stopping or pausing so I will just be happy to start taking them away little by little.

Overall, we are just moving along and praying for no setbacks. That will keep us positive and happy:)

We will do our Creatinine Clearance on Wednesday since her labs came back high today for that and then Thursday will be her next Pentostatin Treatment (#5) Overall, we think her knees, eyelids and fingertips are showing some improvement so we want to stay on the treatment.

I want to update you on Estephany. She is home. Myron went to visit and took a few pictures (which I will try to add to her site tomorrow after some doctor appointments for me). Estephany is showing a lot of bruising and I really think they are feeling drained of hopes. They have not yet found a Transplant Center that will take her without insurance. Very few of these hospitals do Fanconi Anemia Transplant Patients. We are working hard as well as ACH and a few different contacts we have made. Estephany and her family very much need your prayers at this time. We have come very close to our goal of raising funds for her and it really touches them that so many people are praying for their little girl. I know that feeling:) Their family has a few personal needs and if you would like to email me about those, I would be happy to let you know (tmsol87@tmail.com). I also think some HAPPY MAIL would definitely raise her spirits as well as her Mom's. Being up here, they are away from their home and family. Happy mail for Estephany can be sent to:

Katia Solomon Foundation
PO BOX 22375
Tampa, FL 33622
ATTN: Estephany Portillo

She is a very sweet little girl that appreciates the smallest things. I know she just wants to feel better and be able to go back home with her family and friends.

Thank you so very much for all of your prayers and for constantly checking up. Also, I know many of you are sending out the page link so you can get prayer chains going for Estephany. THANK YOU! Her Mom very much appreciates the prayers for Estephany and Estephany herself appreciates your prayers and efforts.


Love, Tracy











September 14, 2005 5:30 PM

First I would like to ask you to please keep Jerry Gomez in your prayers. He is going through a lot of discomfort with GVHD. The full update is on his page.

Tomorrow we are headed to clinic to check on Katia's mouth and counts. I haven't peaked in her mouth today (I assure you I will) but I really hope it looks as good as it did yesterday:)

Katia is napping as I type this. She has been worn out the last two days. She did have school today and she did very well:) I am so glad she is doing well and liking her homebound teacher. Katia aims to please her teacher, Michelle.

I have been around to quite a few sites today although I didn't get a chance to leave many messages. I have updated a few of the prayer request. I ask you to keep Amanda Jo and Jacob D. in your prayers as Amanda has just had transplant and Jacob has just really been having a lot of bladder issues. Also Christina G. just had a bone marrow aspirate and we pray all is clear there. So many people need prayers and as I go to these CB sites, I always say a prayer. In watching CNN today and all that is going on with Hurricane Katrina, Hurricane Ophelia, Iraq, Court Hearings, and just so much, I think it is just a good thing to pray for EVERYONE. I have never met someone that would say they are just great and don't need prayers for something or someone they may know. I wish it could be that way. Ask someone how they are doing and everything really be just great, truthfully.

I know that through Katia's diagnosis and treatments that our family definitely prays a lot more and for a lot more people. Prayer is very powerful. If there isn't something that a person needs to pray about asking God then there is something to pray for to thank God. I have learned to be very thankful for even the smaller things in life.

Someone emailed me the other day and ask do I have bad days? They said I always sound so upbeat. Well, I should respond to that on here. Updating the journal is actually very much like therapy to me. I guess it is therapy really. So, when I am updating this site, I already feel better than I did before I started. There are a lot of things that go on and I do try to focus on the positive. There are days that I think, "I shouldn't update because I am just not in the RIGHT mood" but those are the days when updating is the most helpful. So, my positive outlook is of thanks to God and each of you. I do of course complain about things and anyone that lives with me can tell you I can definitely be in a bad mood or feeling down. Trust me, they would agree with me:) In person, I am a chatter box sometimes and other times very quiet.

I thank each of you for your concern and for your prayers. I wish there were words to express how they help but I think it is just a feeling that words can't describe. So, "THANK YOU" is the best I can do.

Lots of love,

Tracy




*****************

September 13, 2005 1:08 PM

I actually was reading over some of the journal history this morning and old guestbook entries. It gives ME great comfort to know how many people have actually been praying for our little ladybug. I want to thank you. Reading back over that gets me both emotional and then very hopeful.

How is Katia today? Well suprisingly her mouth looks quite a bit better. I looked inside just a bit ago and on her left cheek, it almost looks like a chunk of infection just detatched? I don't know if it is gone or just going to come back but it looks pink and pretty in her cheek. There are still areas of infection but her left cheek was a "wall of white". In reading up on this today, she does run the risk of problems in that area as well as secondary cancers but we pray this will clear up and just be done.

All of us are looking forward to the possibility of weaning steroids. Katia's temper is sometimes very hard to just ignore and let slide. Sharayah and Tatiana have practiced a LOT of patience. Katia loves her sisters and she is always telling them that so I think they see her sincerity and know things are pretty out of her control with the amount of steroids she has been on for so long. I did take her "smaller clothes" out of her drawers so she doesn't keep having issues with things not fitting. Yesterday she had a shirt stuck and she couldn't get it off...

Things have just been so hectic lately with so many things such as appointments and trying to get things improved for Estephany. I am trying to catch up on a few things around here. We have found ourselves in quite a tight spot here so I ask that you pray for that. We always trust God to bring us through things and it is amazing how prayers are answered.

I also want to make a note here about orders that have come in for the $5 CD Special and assure you that they are getting mailed out by next Monday at least. I am hoping as many that can will take advantage of this special as can and we can get them right out. I look forward to you hearing the CD. We always like to hear comments once you recieve your CD:)

Last night, I watched a 9/11 special from CNN. Katia was up until about 1:30 AM literally going to the bathroom every 10 minutes so I decided to watch this special I had missed. Anyway, it just brings you back to a place where it doesn't feel like 4 years has passed. The special was about Flight 93. I was thinking throughout watching this special about how much each day counts for each of us. How important it is to say, "I love you" to our loved ones and to communicate with eachother. Having two teenagers (almost) in the house, things stay quite busy and the days seem to go by. I do like to hear about their friends and what is going on in school. I like to hear about their thoughts and ideas (although sometimes they are just totally crazy). I can't imagine that someday my girls will be living their own lives and not be under the same roof with me. That is just so weird to think about. One of the girls on Flight 93 was just 20 years old. Wow.

I look at Katia and I just know there is a reason for her being here. At the same time, I think the same for Sharayah and Tatiana. I am proud of my three girls and I so much appreciate their closeness. Like I said the other day, I love seeing them goof around and I am glad they can all do it under the roof of our house, together.

Ms. Katia is calling me:)

Thanks for your prayers on Katia's cheeks.

Love, Tracy






September 12, 2005 5:36 PM (Second Update)

Hello:)

What a busy day. But, that is okay. We are really trying to get help for Estephany right now and that is very important. By doing this, I have learned quite a bit more about Fanconi Anemia. Katia and Estephany finally met the other day. They hear about eachother but we were actually leaving from the hospital last week when Myron and Estephany's family was arriving for the interview with The Tampa Tribune. The online edition doesn't show the same pictures as the actual paper but the actual paper has a picture of Katia with Estephany. Katia was showing her a train that is in the front lobby of the hospital.

As far as what we know about Katia's biopsy, we won't know more until probably Thursday. She is doing the added mouth care swishes but her mouth on one side looks quite a bit worse. She says it doesn't hurt so bad as it looks yucky. She has been looking in her mouth a LOT today with one of my mirrors. The area where the stitch was appears to be the best area in her cheek so maybe they took out the infection right there.

Tatiana turns 13 on Sunday so that is the buzz around here. I will have TWO TEENAGERS in my house! It has already sort of been that way since Sharayah and Tatiana are so close. They especially love to dialogue movies back and forth like "Dumb and Dumber", "Napoleon Dynamite" and "School of Rock" just to name a few. It can get quite annoying but in the long run, it gets me laughing. Of course, they have gotten Katia into all of this so the three of them just go on an ongoing dialogue act. I am glad they are all together just being kids:)

Well, that is my update today. We go to clinic on Thursday mainly just for counts and for them to look at her mouth. By then biopsy results should be in as to what we are dealing with and some type of idea how it can be dealt with.

Katia wanted me to let you know that she likes the car at the top because it is YELLOW! That is her favorite color even though ladybugs are red and black. She had to clarify that:)

Love, Tracy








September 12, 2005 11:15 AM



Estephany's Story Tampa Tribune Article

Estephany's Page


I will update more later. Love, Tracy



***********

September 11, 2005 2:00 PM

There is so much I could say about today being 9/11. I watched the news, observed the moments of silences and really reflected on the last 4 years in this country. So much has changed over the last 4 years for this county.

Also, so much has changed in our family over the last four years. Usually I would say how time flies but a lot of times it seems like these last 3 1/2 years have gone very slowly by with Katia's diagnosis and just everything that has gone on. It seems some days like this is all a bad dream. I know that sounds funny seeing as this is not knew to us but I guess that would be more of a wish, that we could just wake up.

I am grateful with Katia's progress and I am hopeful for her future. I know Katia has been so blessed in so many ways. We all have. I would be lying if I said I don't still have fears for Katia's future. I do. But I have learned to TRY to focus on the here and now more and not so much "10 years from now..."

I told Katia that we MAY be able to soon start taking away some of the steroids and she is so happy. She knows they make her hungry all the time and she doesn't like that feeling. She is hungry even when her belly feels stuffed and she just ate. Her brain says, "MORE". She also wants her puffiness to go away so she can wear her other clothes. She has about outgrown every shirt she owns. She has gone from barely wearing a size 2T shirt in January to size 7 shirts being tight. Her pants have gone from size 12 and 18 months to size 3T being worn below her belly:) She is however doing very well with her walking and even being able to jump up and down over and over. So, she has maintained her strength and muscles. I like seeing her appear more "hyper" than usual. That is the way she should be able to act:)

I want to also thank each of you for keeping up with/praying/ and donating to Estephany as we are so close to our goal. This couldn't be done without the help of others. Myron has a meeting with them again this afternoon. Then, we will have an update to share.

Also, you have to go read Jerry's Update and see how good things are going right now.

KSF has been working on a new site and when it is up and going, Jerry's story will be transferred to the new site. I will post that information when it is completed.

Again thank you much for your prayers for not only Katia but for everyone in need of prayers:)

Also, Katia says "THANK YOU SO MUCH FOR ALL MY PEPPERS!!" Things have gotten quite spicy these days:)

Love, Tracy








September 9, 2005 5:00 PM
WBC 8.5
HGB 12.2
PLT 251
ANC 6800
FK506 9.4

We are back:)

It feels like it was a long day but I don't think it was so much the day, just the week...

I am looking forward to a quiet weekend hopefully.

I do have some of the mouth biopsy results. Although it shows GVHD, it is also showing an infection of some sort. Not sure what yet but so far nothing viral or fungal? We are changing some of the mouthcare we have been doing but other than that, the biopsy is being sent off to Chicago for further evaluation to see what is going on in there.

Her counts have been off a bit which usually tells me there is an infection somewhere by the way the counts are off BUT at the same time, the counts can go up and down due to some of the medicines she is on. I have learned that WBC and ANC readings really can't be trusted so much as the IGG. Although it is nice to get the "Report Card" for Katia and she likes to look at the counts (future doctor there), it really doesn't give all the information.

So, I guess another week on the biopsy results. We are feeling a bit more confident that this treatment is working since it seems to be working on her eyes and skin. Since the mouth has more going on and it has worsened, we aren't counting that against the new treatment SO the hope is to start trying to wean some of the steroids and see where that leads us. I really pray she can wean and be okay. I would LOVE her off the steroids. We know we are going to have appetite and weight loss issues but I think if the weaning is done slow enough, we can deal with problems as they arise. But, the steroids are very harmful to her bones and have other dangerous effects and we would all like to see them off her med list:)

That is all for now. I could go on and on but seeing that we have been gone all day, I have a few things to catch up on. I would say I could use a vacation but I won't because I don't like to complain over long days. I am actually happy to go through the long days because it is all for a good cause and we all have our hopes that Katia will someday live a much more normal life. That is our goal and our eyes are on the goal.

Have a great weekend:)

Love, Tracy









September 8, 2005 3:21 PM

We are back:)

All is well. They ended up cutting out a piece inside the cheek which left a stitch. Katia wasn't too happy when she woke up but with the help of her Tylenol with Codeine, she should heal up fine over the next few days as long as she doesn't bite the area.

Her labs looked good. I don't have them as it wasn't done in clinic and I didn't think to ask for a copy but they were good. They sent off a few labs and then three samples from the cheek for biopsies.

I just got home and need to catch up on some things around here. Katia is pretty pink right now so hopefully we don't get a fever out of any of this. She did have antibiotics before the procedure to protect her from getting sick.

Myron was at the hospital when we left. They are doing an interview with Estephany and her Mom for the Tampa Tribune. When it comes out, I will post the link. Thank you so much for your prayers and help to Estephany. She is SO sweet:)

Love, Tracy







September 7, 2005 1:40 PM

Good day:)

First, I would like to thank all of you that have been checking in on Estephany and have contributed toward the cost of her medicine. If you go to her site, you can keep up with how close she is to her goal. Let me update you a bit on her care right now. She is currently at ACH, admitted. We are trying to reach the goal for her medicine because, upon discharge, she is out of medication that she needs at home to take each day. Thank you for your efforts in helping and your prayers.

As I type, Katia is practicing phonics with a CD that her teacher left for her. Katia LOVES school!!!! Her homebound teacher is just great with Katia:)

The last few days have had us a bit concerned because at different times, Katia's lips are turning bluish. I have mentioned this to her doctor. Tomorrow, we are going to do some labs before her biopsy and see how her blood levels look. She has been getting cold a lot easier, especially in the evenings no matter how bundled up she is.

She is scheduled for the biopsy procedure tomorrow but due to timing, her pentostatin treatment will not take place until Friday. We will go back over Friday morning to have the Pentostatin treatment done.

Katia's Kidney Function tests turned out all good so the extra urine doesn't seem to be causing her problems. Of course, I was happy to hear that:)

Well, I have a few phone calls to make so I should move along...

There were more peppers added up there today so take a look. It is amazing how everyone can decorate a pepper in such different ways:)

Also, keep KodyBear in your prayers today during his MRIs. I know they always get nervous for these and especially since Kody has been having some "issues" over these last few days with trips and falls. Pray his MRI does not show tumor progression.

Love, Tracy






September 6, 2005 2:40 PM

We are back:)

For Katia, things went VERY smoothly. You know how smoothly? We got there and the broviac had started working. I had put in quite a bit of Heperin anyway and I guess that did the trick. That was a very very nice surprise!

Tatiana? Well, that didn't go as smoothly. I have told you she doesn't like needles AT ALL. Well, it seems this MRI was ordered with and without contrast. They did the without but when they went to put in the IV (totally unplanned to us), Tatiana wouldn't do it. I guess the tried to talk her through it and since I was with Katia in an isolation area, I didn't know this was going on. Anyway, they didn't get the part of the scans done with contrast. Now, looking back on it, I wish I had seen to it that it was completed but something just told me to let it go at the time and see if they are able to find something by the scans they DID get. Please pray that is the case or I am going to feel bad to have to reschedule this. She still has the nerve study (EMG) to get done if they still see that she needs it after reviewing these scans.

All in all, I wish that had all been able to be accomplished and I pray it doesn't come back to the point that it was really important. Well, I guess if they ordered it, it was important. Oh well...

Now we plan to go back on Thursday for this biopsy (which her cheek seems to be showing improvement also) and her next dose of pentostatin. I set my mileage counter and it is 65 miles round trip. I am quite used to the drive though.

Thank you for all of your prayers.
Thank you for the added peppers:) Have you gone and looked at the designs? They are quite artistic.

Love, Tracy


*************

September 6, 2005 10:00 PM

First things first this morning:)

Katia asked, "Any peppers?"

She is cute. Thank you for passing on your peppers. "Peter Piper picked a pack of peppers..."

What are we up to today? Well, last night Katia's broviac stopped working and it still isn't drawing blood today so we need to get that fixed at clinic so she is ready for Thursday morning's biopsy. We don't want to get to that with a bad broviac. Not a good idea. We are also going to hand in her urine so it can be sent to lab. This is about 5 times more urine than the other tests in the past which has me a bit concerned. I don't know if I should be concerned so I am just going to try to put it out of my mind. Plus we have Tatiana's 2nd MRI today. This one is of the shoulder and should last about 45 minutes. She says she is ready:)

So, first we drop off the urine to clinic. Second, Tatiana's MRI and then come back to clinic to work on Katia's broviac. The have a "magic mixture (TPA)" that they let sit in there for an hour or so. We call it Broviac Drano. Sometimes it works the first time and other times we sit through it two times in a row. Whatever it takes, we just need a broviac that can draw blood.

I am really eager for gas prices to go back down to the high they already were. You? Myron's work has cut overtime (which we have been depending on) and the differential pays because their pay center was affected by the hurricane. Hopefully that will change sooner than later. A few people from his job left out to go help in disaster relief. As I watch the news, I am glad to see so many civilians stepping in to help and volunteer and send clothing, food and such. People are good hearted. Our neighbors have a family staying with them from Lousiana. It is going to be a LONG time before things return to "normal" for a lot of people.

Thank you for your prayers and emails. Thank you for your PEPPERS! Katia had to add that in. She is basically using me as monkey bars as I type this so there is a lot of backspacing involved here right now. I should get moving so we can get out of the house and onto appointments.

Love, Tracy

PS Of course I will update later today with the "Evening Edition".






September 5, 2005 1:32 PM

I mainly came on here to add some "Pepper Codes". These are really cute. Katia is enjoying this and the proceeds go to a good cause, St. Jude.

Also, for those of you that have a KSF banner and link on your website, please email me at tmsol87@tmail.com as there have been some changes to these banners and the link to KSF.

A few people have emailed and asked about sending things to Estephany. I am sure she would love this and it can be sent to:

Katia Solomon Foundation
PO BOX 22375
Tampa FL 33622
ATTN: Esphany Portillo

Please continue your prayers for Jacob D. as they are so appreciated. Things have definitely seemed to turn around for Jacob and we are all so happy about this!!

Love, Tracy








September 4, 2005 12:31 PM

Good morning:)

Katia is so happy with all the "Chili Peppers" being done in her honor. You guys are great artist!!

I have been updating the prayer request and have added one over there also. I am working on adding a few more as soon as I recieve some more details.

Katia is playing with Sharayah and Tatiana right now. They are doing something with recording their voices and making stories? I am not sure exactly but they are having fun:) They are very good big sisters and Katia loves it when they are home. Since tomorrow is a holiday, they get an extra day this week to be home. Tomorrow is our day of collecting urine from Katia to send to lab and get her Creatine Clearance levels. This is always done before each dose of Pentostatin to check her kidney functions. The numbers have been coming back very good. Whether or not we continue these treatments depends on these next two weeks and the results of this upcoming biopsy of the areas inside her cheeks. A lot of people have asked, "What will the next step be if this treatment is discontinued?" Well, there are ideas but nothing concrete. It is still the hopes of us and her doctors that THIS treatment will work, clear up the GVHD completely and allow us to start weaning steroids. That is our prayer.

Please pray that is the answer.

Love, Tracy






****************

September 3, 2005 4:14 PM

I have to say thank you for all the Chili's/St.Jude Chilis being sent to Katia. She is loving this and finally designed her own #3870 for you to see:)

Please continue to pray for Katia's mouth and this upcoming biopsy that we can get some answers and possibly start weaning her from the steroids. That is this coming week (Thursday) and Tatiana's next MRI is Tuesday (the gas stations love us right now).

Thank you so much for checking in on Katia:)

Love, Tracy







September 2, 2005 12:27 PM (See link above Journal Entries for more.

Check out the Chili's Chili Peppers Createdfor Katia. There are two different ones so far. The code numbers are 3042 and 969. The proceeds go to St. Jude.

Also, Katia is set for having the biopsy on her mouth on Thursday next week. We are trying to schedule that around the time of her Pentostatin Treatment which is due on the same day.

Love, Tracy




Love, Tracy




Good day:)

Katia had school this morning and yes, I took a picture of Katia with Ms. Michelle:) It is over on Katia's www.ladybugkatia.com site since now her teacher is in the Ladybug Club. It is a good thing that Ms. Michelle likes ladybugs!

We are looking forward to a hopefully quiet weekend. I have been attached to the news and my heart just is so torn for those people. I just wish they could get rescued and fed and bathed and somehow just have something to make them feel better.

Also, I am going to keep Estephany's site updated with our progress toward helping her out. Thank you for checking on her. She REALLY needs your prayers right now for complications she is facing.

Love, Tracy









September 1, 2005 3:00 PM
PLEASE PRAY FOR OUR FRIEND MARK.

Ms. Katia is quite happy right now! She had homework!! She very much is enjoying "school" and learning. I know one thing she is very eager for is to be able to really read:) She sees Sharayah and Tatiana reading and she wants to be able to join them.

She has had a good day overall. I haven't bugged her by looking in her mouth although I am curious to see what it looks like. I figured I would give her a day off. Mind you, it is only 3:00 so who knows, I may peak.

Her teacher comes again tomorrow. I will try to get some pictures of her working with Katia (if she doesn't mind). I totally forgot the other day. These last few days have been very very busy with trying to work on some things with KSF.

Well, I better go. I hear Katia sneaking into the pantry...

Love, Tracy



PS I had to share this with you. Of course, I have the news on around here pretty well non-stop (not healthy I know) but Katia decided after seeing the military people on there to put on her military attire. Then a bit later after they were talking about the hunger and the need for food and shelter, here she comes her her play chicken and chicken nuggets that she is helping the people on the news. Of course, I had to take her picture and give her a hug:)










August 31, 2005 4:53 PM (Third update today)

You know, I have hesitated coming back on here today for a 3rd update but you know me, if there is something that I find theraputic, it is sharing my thoughts with you.

Today has been quite a sad day with the passing of Maddy. Many of us have followed her for quite some time.

Then, there is the Hurricane Katrina destruction that seems to be getting just worse and worse as the day goes on. I mean, this is just devastating! I did hear from my aunt that my Cousin is fine. That really was nice to hear. I watch the news though and it seems like it is showing another country, not our own. Like I have said before, the Hurricane in Honduras was horrible back in October 1998 and took tens of thousands of lives! Today, they are saying they fear thousands have died in New Orleans alone and those numbers have a good chance of increasing due to disease, hunger, etc.

Last night, as I lay awake, I started thinking about the hospitals and all the critically ill. What were they going to do? What about people on treatments? What about the diabetics in need of medication? What about children that were just born or being born? What about all of the kids that had just returned to school? I mean my mind was just spinning with all the "Whats". Today, a lot of those questions were coming to reality on the news as people were waving flags to be rescued and others were unable to live due to loss of electricity or the ability to receive IV infusions at hospitals. I can't even begin to imagine the reality that is still to come.

So, I ask this of you. Please pray. I know you already are touched by the news and how bad this is. Ask everyone you know to just pray. We all know on here that prayer makes such a difference. It may not be a miracle cure or the end of a problem but we do know it gives strength, answers and ability to those who become hopeless. Pray for our government, our rescue missions, other state governors, just everything.

I started thinking ahead today to Thanksgiving of 2005. Yes, my mind does go that far ahead. I wonder what this Thanksgiving will be like for these people. Will things have improved? Will they feel more settled and taken care of?

I have learned to live each day as it comes but I also am one to look ahead and hope for better days. I often look forward to holidays and wonder where Katia will be in treatment and how she will be doing. I have learned a lot through these last 3 years but I never imagined all that could happen to this country due to a Hurricane that just destroyed so much and took so much away from so many people.

We here on Caringbridge have learned to come together for eachother and I think that is a great opportunity. So, please take a moment and say a prayer. I wish there was a "Message Board" for our fellow countrymen like the guestbook here for Katia. I am sure they could use the uplifting effect of words of encouragement.

Thank you for letting me share this.

Love, Tracy






August 31, 2005 (Angel Maddy Update)

I had just posted an update for Maddy and I have just learned she passed away this morning around 7:45 AM. She had been improving yesterday so I know this comes as a shock to her family. Please pray for them.

Love, Tracy




August 31, 2005 9:40 AM


As we wait for Katia's teacher to arrive, I wanted to update.

First, some VERY good news!! I am only going to share this much with you.
GO CHECK UP ON JACOB. So many prayers are been going out for Jacob so I want to share with you some of the answers:)

Secondly, as I am sure many of you are, I have been keeping up with the Hurricane Katrina updates. We were spared completely. Myron's brother in Miami had some effects and lost electricity but they are up and going again. However, there are SO MANY people in such horrible situations. I mean, I watch the news and it is more than I can imagine. I received an email today from a friend who is missing family there (Biloxi Mississippi). So, please pray for her and her family. Also, my cousin and her family in Alabama and another family that keeps up with Katia, their family live in Mobile, Alabama. There are just SO MANY people missing or unable to make contact with people. There are going to be a lot of people with feelings of hopelessness when they think about their lives ever getting back to "normal". I could go on and on but I know we are all seeing the same news.

Well, I started this update quite a bit ago so I should get it posted:)

I will try to update later today. I have another family that I want to let you know about. It is a very touching story. Also, I will try to update pictures today (although I just noticed Katia is wearing the same shirt as in the picture above and the same bows!)

Love, Tracy


**********************

August 30, 2005 2:40 PM

Hello:)

Today started out at clinic with a check on Katia's mouth. It has worsened so we are going to do a biopsy to see how the GVHD looks and check on anything else that may be in there. She will be sedated for that so at the same time, there is an eye test that we tried to do and were unable to because it hurt and was bothering Katia. We can do that while she is sedated. I am not sure of exactly WHEN that will be but hopefully in the next few days or early next week. We do have to check all of this before the next dose of Pentamindine (Thursday week) so we know where we stand on the dosing of that.

Okay, that was a lot to type out:)

Tatiana has one MRI down and one to go:) She did so good! The MRI team at All Children's is great so I knew she would do good. When we got there, there was a small misunderstanding about her needing an IV. Of course Tatiana went to the bathroom to panic and by the time she got back we knew there wasn't an IV needed:) She was VERY VERY happy as Tatiana HATES (this is when you need bigger capital letters) needles!!!

Today was the MRI of the brain and next week is the MRI of the shoulder. Then the nerve test (not sure on the schedule for that yet).

So, all in all, today was a very productive day. No answers but we got a few things out of the way.

Do you know what tomorrow is?

Tomorrow is Katia's first day of school with her homebound teacher, Michelle:)

We have met her but she hasn't done any school work yet with Katia. So, I told Katia although I will be home, she will sit down to work with Ms. Michelle and take instructions from her. I am sure Katia will do just fine. She is going to love this!!

Well, I better go check on a few more sites.

Thank you for your prayers.

I have a link to share with you. If you are a CHILIS FAN (like I am), next time you are in there, you can participate in this.

Create s Pepper to fight Childhood Cancer.


Love, Tracy








August 29, 2005 4:00 PM SECOND UPDATE

All is set for Tatiana:)

Love, Tracy






August 29, 2005 1:50 PM

WOW, this hurricane is horrible. I am praying for the residents in those areas. I have been very closely watching the news.

Myron, Sharayah, Tatiana and myself went through Hurricane Mitch back in 1998 while we lived on the islands of Honduras. It was horrible and there was so much destruction and so many lives lost. I feel so bad for all of those who are going through this Hurricane Katrina now. I pray for those that did not evacuate.

On a Katia note, Katia is doing okay today. I looked in her mouth and I am realizing that the left cheek is worsening as the right cheek looks about the same. We are far enough into these treatments that I had hoped to see some improvements overall. I do have to say her eyelids have shown improvment but I am very concerned about her mouth and whether or not this treatment will be the success we hope and allow her to come off of the steroids. Please pray this GVHD will start to improve and prove this treatment is the answer to prayer.

As I am sure many of you have, I have been checking on Jacob quite often. I was so pleased to see he had a good day yesterday as his Mom was having a birthday. She had said something in one of her updates a few days back about miracles and that JACOB IS A MIRACLE. He definitely is. He has been through so much and yet he still is smiling. God bless him.

I am working with Tatiana's pediatrian about tomorrow's appointment. She has her MRI but they have not received the referral yet. This has been an ongoing problem so hopefully we can get it straightened out for tomorrow or it will have to be rescheduled, again.

Love, Tracy










August 28, 2005 7:12 PM
Second Update Today

First, I will share some good news with you by sending you over to Jerry's Update.

I also have to thank all of you for praying for the prayer request listed. I am sad to say that Colin has become an angel as of 3:21 PM today. I am sure his family could use your prayers during this time. He fought so so hard.

Love, Tracy






August 28, 2005 11:45 AM

Can you believe this hurricane? It has just become a MONSTER! We are praying for everyone in the path of this hurricane.

I have been checking on some of our prayer request this morning (I updated the Prayer Request yesterday. Please keep each of these in your prayers.

Also, CDs, Bracelets, and books are packaged to go out this Tuesday. Check out the new CD offer. This will continue as long as we can.

Also, as it stands right now, Katia gets to skip out of clinic this coming week:) Isn't that super!! We will still be over there on Tuesday for Tatiana's MRI but still, nothing planned for Katia. It works out good as it allows our attention to fully be on Tatiana (she is a bit nervous).

Katia has been quite "active" this morning and also pretty tempermental. She is playing "Dress Up" right now which makes her happy. I can't wait for the day she can go without the steroids. I don't even know what she will be like without them (temper wise) because she has been on them for SO long. I really pray this Pentostatin Treatment will start working so we can work on weaning steroids. If this treatment doesn't work... Well, there is another idea but we really really want this to work. Sometimes she appears to be improving and at other times, she appears worse? Her lips look much better though and that helps her be more comfortable eating.

Well, I hear a little problem brewing so I better cut this short:)

Love, Tracy









August 27, 2005 11:00 AM


First I want to say I am grateful for today. This time, two years ago, we were driving Katia to the hospital for what turned out to be 11 months away from home. We were just driving across the bridge into so much uncertainty and fear. Today, we are home and she is currently harassing Tatiana!! God is good:)

On to a much sadder note. I get up every morning and one of the first things I do, after coffee, is check on our Caringbridge Family. This summer has just been so heartbreaking for so many families. I check a lot of sites 10 times a day. Sometimes out of disbelief but mainly because everytime I open up that site, I am saying a prayer. I don't give to leave as many guestbook messages as I used to be able to but please know, my hearts are with each of you. There are lots of kids that I check on that are a year, two years, even more out of treatment and doing great. I have not forgotten about them and I still drop by just to be thankful they are doing well. I am so glad to read that! I love to see the pictures of them heading off to school or playing outside.

Today, there are so many in need of prayer. Part of me just wants to scream but the part of me that ends up winning is the one that says, "Go update and post the prayer requests". So here I am. I know I am leaving some out and I am sorry.

First, I want to ask you to pray for Jacob and his family as they are going through the most difficult time knowing that Jacob will only be with them a day, two more but just a few. They are able to get him out on little trips here and there and they are determined to not mourn while Jacob is still here and just to be happy and positive and loving. I know it takes strength and just endearing love to give this to Jacob so I ask you to pray for them.

Another is Colin who is also facing leaving this earth. He has fought so long and there is nothing more medically that can be done. Please pray for his comfort and for his family during this time.

Another little girl that was just brought to my attention is Emily. She is still a medical mystery right now but her family is heading from California to Ft. Lauderdale Florida for more answers. To a parent, your child's health is most important and they are traveling across the country to find answers. Please pray for them and if you live in the Ft. Lauderdale area, maybe you can email them to see if you could help with information.

Also, Josiah and his family are just praying for Josiah's healing. When he was diagnosed in November 2004, there was a 5 percent chance he would live 18 more months. He has done well but is currently facing numerous issues and they are again asking for prayers.

Angel Cody's Family is doing something I cannot imagine. They are planning for Cody's Celebration of Life Ceremonies. Cody fought leukemia ALL for quite some time and he fought hard. I cannot imagine how much his family is missing him but they are really trying to show their love for him and his love for life through these celebrations planned. There are three planned in different areas so one may be near you.

Maddy or better known as "Queen Maddy" is showing that prayers are helping. She is showing improvements so please keep praying for her as she battles for her life.

I know there are many more out there in need of prayer and I just have not been able to really keep up the prayer request area over these last few weeks. That is so important to me so I wanted to sit down and list a few.

I believe prayers have enabled Katia to get through so much and to still be here with us. She has faced some very serious times. Today she is smiling and happy. Although she still has her battles with this ongoing GVHD, we know how lucky we really are.

Thank you so much for keeping up with Katia and so many of our other friends.

God bless,

Love, Tracy


********************

August 26, 2005 3:40 PM

I have to add something here that Katia just said when she saw the picture collage I posted. It is both cute and a little sad.

She said, "I was cute!" I said, "You are STILL cute!" She said, "If my face will get small, my hair will be pretty again." I asked her what she meant and she explained that since her face is so big that her hair doesn't show as much.

I felt bad for her but I just had to explain how much I LOVE to kiss those cheeks so I took off tickling and kissing her...


Love, Tracy






August 26, 2005 12:50 PM

What a difference 2 years make.



This time 2 years ago, we were very concerned and had a spinal and bone marrow aspirate done to check Katia's leukemia status. We left clinic thinking all was well only to have our world come crashing down in the evening when we were called saying Katia had VERY MUCH relapsed and needed a bone marrow transplant. We knew we didn't have a match for her. I will never forget the hopelessness that came over me at that time.

Since then, we have had so many ups and downs but we have Katia here with us and leukemia free. There are more ups then downs these days. Katia is home, she is doing school work and she is on a treatment plan that we pray will work for her GVHD. I am really praying this next year will continue to show her improvement.

I also should say that over the last two years, I have learned a LOT about patience! I learned we don't control life but we do control how we handle some of the crap that is thrown our way. Some of it just leaves us with our jaw hanging open but other things, we have learned to just deal with as we can. There are many families struggling for life right now and some having to say their final good byes. There are other families that are getting lives back to normal.

How is Katia feeling today? Well, her cold has her feeling pretty yucky but she has a great attitude about it. I think she has just made it part of her personality to shrug off sickness and try to just play and be happy. That is what she is doing. She is singing along with Barney right now, eating, and just as cute as a bug! A ladybug! She has decided she wants to wear a nightgown all day because, "It makes her feel pretty" so that is what she is wearing:)

She did accomplish putting on her own socks:) Both of us are happy about that accomplishment!

Thank you so much for being a part of Katia's progress and definitely a part of my sanity:)

Love, Tracy



**************

August 25, 2005 3:30 PM

Other than having a BAD cold, Katia is doing okay. We did get her Pentostatin treatment today which is good, it keeps us on track. Hopefully it won't drag her down.

She had her nose flushed out today to get a sample to send for labs and she HATES that being done. She knew they were going to do it so it was better to get it done at the beginning of the appointment instead of dragging it out.

I want to thank each of you for your prayers. There are a lot of families, here on Caringbridge, that have recently suffered losses, are facing losing a loved one or are fighting very hard for their life. It is very trying and yet, we have to keep on moving ahead and be positive for the sake of Katia. We have to KNOW and BELIEVE Katia will be okay. That is what gets us through each day, especially when we see so much suffering around us.

I am thankful to have the opportunity to share Katia's Story with others in her book, "Ladybug and the Dragon". That is such a great opportunity to get her story heard. Thank you so much for those of you who have read the book and left your comments. The author/publisher wrote this book free of charge, published and printed it free of charge to help our family get through some very difficult financial times. We have been able to sell some of the books and also give some away at drives or other functions and we believe the more people that read/share the book, the more people that will get involved in different ways of saving lives. So, thank you for those that have ordered and if you haven't, order today:) We will get it shipped right out (WITH KATIA'S SIGNATURE-by HERSELF).

Love, Tracy











August 25, 2005 4:33 AM

I will update on Katia after our clinic visit today but I wanted to jump on here and ask you to pray for Jacob D. and his family. They have received the horrible news that his disease has spread beyond medical help and they only have a few more days with him. He has decided to stay at the hospital. I can't imagine all the fears and emotions but I know prayers will help. Please FLOOD Heaven with prayers.

Love, Tracy






August 24, 2005 3:35 PM


Katia is pretty miserable today with a cold and sore throat and all the good things that go along with it so please pray this passes quickly without causing her any problems, especially her lungs. She is really trying to be tough about it all but she will finally give in and say, "Okay, I need some medicine."

I haven't heard anything back about the throat cultures but I don't figure I will hear anything conclusive until tomorrow.

We have clinic tomorrow anyway so we will see. I hope her being sick doesn't put off this Pentostatin treatment? I just thought of that.

Sharayah has taught me how to play CHESS! Which I love!! Both Sharayah and Tatiana both know how to play and I have wanted to learn for quite some time but I just haven't had the chance to really put my mind to it. Well, now I know and I LOVE IT!!

We have a little travel magnetic set that is tiny but I can always say I learned how to play on that. Sharayah wants a real Chess set so I am going to try to make that happen. She likes the one that is on "Frasier". Yes, we are really "Frasier Fans" here:) It has been something that I have shared with Sharayah, Tatiana and Katia for quite some time. That was our big thing at the Ronald McDonald House was to have "Frasier Marathons" when the girls were able to spend the night. We would watch episode after episode on DVD. Any other Frasier Fans out there?

Well, I am supposed to run Sharayah some place this afternoon. She is in Yearbook at school and has to sell a certain amount of ads for the yearbook so she has to go to a place for them to fill out their papers and purchase their ads. She is a real business person:)

Please keep Jacob D. in your prayers. I haven't seen an update for a few days but I know he has gone through so much and was feeling very bad on the 21st. I worry when I don't see updates. Also, Kelly M. had some scans done yesterday and they are really praying there have been improvements.

Please never hesitate to contact me via email if you have a prayer request. I get emails saying..."I don't want to bother but..." You are never bothering. I know a lot of people check on/pray for Katia and I want to let others know about prayer request I hear of also. I believe prayers can bring miracles and comfort.

I appreciate all of you that check on Katia and visit the www.ladybugkatia.com site to check on the Prayer Request. That means so much as I want to really be able to make a difference in the fight against all types of diseases and I know prayers can really touch lives and make so many things possible that we never thought would be possible.

There have been people that have checked on and prayed for Katia that have found themselves all of the sudden needing prayers. Even for cancer. It is something that will touch so many of us or someone we know in our lifetime. I have learned that life is nothing something we can take for granted and we much live each day to its fullest. I want to truly be able to do that. I want to be able to touch lives and help others as much as possible. I want to be able to share information. I have to say that 99 percent of the time I spend on the Internet is researching and seeing what info is out there, not just for leukemia but a lot of things. Knowledge is power. It can really come in handy when you hear something that can possibly make a difference for yourself or someone else.

I better run:)

Love, Tracy







PRAYER UPDATE:

Please pray for a little boy from ACH, Josiah. He has been listed for prayer before but things have turned around on him and he really needs a miracle.
Love,Tracy




August 23, 2005 3:12 PM
WBC 8.9
HGB 13.6
PLT 230 (dropped but okay still)
ANC 6800



As I type, it is STORMING here!! Not with lightening and thunder though, like normal, just a LOT of rain!! Katia and I spent some time in the car before we were able to get out without getting soaked.

As you know, we went to clinic. I knew when her WBC was up over 7.0 last visit that something was up with Katia. It seems she has a couple infections going on. One is her throat and the other is with her pee. I will know more on the throat in a day or two. We swabbed it. She wasn't happy but she knew they were going to do that because she knows the routine (cough=swabbing). The other infection appears to be a yeast infection. Katia hasn't had one for a bit but this was really bothering her so hopefully, with treatment, it will get better quickly.

On a very sad note, the girls' dog, Scruffy, passed away on Sunday evening.


"Scruffy, may you have LOTS of doggie bones!!"


He wasn't at our house as my sister had taken him in after Katia's transplant. We just weren't able to have a dog in the house. The girls were very upset when we told them yesterday. We waited until they were both home from school. He was 13 years old and we had gotten him from a Dog Pound when we lived in Oklahoma. He was just a puppy when we got him. I felt so bad telling the girls. I know how it feels. Pets get very close, they become family. I had a dog for 19 years that I lost in 1995. Scruffy was originally gotten so my dog could have a new friend and get some exercise. Scruffy ended up being a good little dog. He was a blond peek-a-poo. When Katia is able, we will get another dog. Of course, Katia has picked out that she wants a big, white, fuzzy standard poodle but we are leaning more to a different idea. The dog I had for so long was such a good and trained dog. He was a cock-a-poo. He was clean, didn't shed and wasn't too small or too big. I want something that doesn't shed, is darker, not snappy, etc. Anyway, that won't be for a while. By all rights, Katia has to be off her immunosuppresent drugs and we aren't breaking that rule with her:)

I am just very grateful my sister took in Scruffy and took such good care of him for the last 2 years. She has 4 kids and a dog of her own so Scruffy had lots of playtime and his own good friend. The girls just didn't get to see him much as they live about an hour away.

Well, sorry for the sad note. It seems there have been quite a few this Summer. Hopefully the Fall will be a good time with a lot of ups and very few downs. We are coming up to the 2 year mark of Katia's relapse (August 26, 2003) so I will be glad when August is over with. Hopefully we won't have a Hurricane Season like last years and we can get into the Fall Season, doing well.

We go back to clinic on Thursday for the next Pentostatin dose. It would be really GREAT if Gas prices were drop since there are so many trips back and forth now. I think about that as I fill up and use up gas in my car. I remember when gas was $0.40 a gallon!!! Those were the days!

Well, have a good evening and thank you for checking up on us:)



Love, Tracy












August 22, 2005 3:50 PM

Just a small update. Second update today. Tatiana's appointment for tomorrow has been postponed till next Tuesday. The referral just wasn't going to be ready for insurance. On a good note, I had the two MRIs seperated. So, one will be 30 minutes and then a week later, the other will be 45 minutes. All things happen for a reason and I think she will be much happier with that arrangement.

Thanks for your prayers. Maybe this is an answer to some of those prayers for Tatiana:)

Love, Tracy






August 22, 2005 9:30 AM

Well, I just wanted to jump on here and put up some pictures from yesterday. I had a really nice day. My family takes good care of Mommy:)

Katia woke up today not feeling well. She says her throat feels like it is "closed" so she is eating soup right now and getting a lot of love and sympathy. We have clinic tomorrow so we will see what things look like with her counts and, if her throat still hurts, probably have to swab it for testing (don't tell her that).

THANK YOU SO MUCH FOR ALL THE BIRTHDAY WISHES:) You guys are way too much!


Katia is calling...

Love, Tracy



**************

August 21, 2005 10:11 AM

Good morning:)

First, I want to say thank you for each of you letting Tatiana know that all will be okay with her upcoming tests. She is nervous but she is ready. I am just really hoping she can follow through with the whole 90 minutes of MRI this coming Tuesday. I don't know who is more nervous for Tatiana. Herself or Myron and I. We talked about sedation but the problem with that is, she would need an IV and she HATES needles! So, she is going to try to get through. I think she will be able to. I still have no scheduled date for the EMG.

I woke up this morning to birthday cards and birthday breakfast:) It was great! God has blessed me with 3 very loving daughters!!

I think I am going to stay 36 and just start celebrating anniversaries of it from here on out. When I was a kid, I thought 36 was OLD! Actually, this whole past year, I have basically thought I was 36 so I will just hold that thought. It is funny when you can't remember your age:)

Okay, I have a question and an answer:)

What is your FAVORITE birthday memory? I love thinking back!

My favorite birthday memory? Well, let's see. I think it would have to be when I turned 22. We lived in Germany (Myron was in the military). He actually was able to surprise me (which is far from easy!). He had our whole apartment filled with balloons while he took me on a walk. We lived in the most beautiful little town-like something right out of "Beauty and the Beast" and the woods looked like "Robin Hood's", just gorgeous. Anyway, we only had Sharayah back then. She was 2 years old and she was "Mommy's little shadow". We went for a long walk while some of Myron's friends and our neighbors worked on decorations and such. I don't remember much from the birthday other than the walk and the fact I had been surprised!!

I have had a lot of good birthdays, not big birthdays, but good birthdays. I love simple things and my family always takes such good care of me and treats me like a QUEEN. When I turned 30, I was pregnant with Katia. I had a birthday and I even got to wear a crown for the day:) We had friends over and Myron sang to me in front of everyone!

I have said this many times but I am grateful to God for the family and friends he has given me:) You are great friends and such a support with Katia's journey. I hope you know that:)

Katia is buzzing around very happy today. She knows there will be CAKE:)

Love, Tracy







August 19, 2005 10:41 AM


Well, I should make this quick as Katia wants my space so she can do her school work:) She likes working at my desk.

Her FK506 level came back at 11.5, which is good:)

I spent most of yesterday lining up appointments and getting referrals for Tatiana and then trying to make sure Katia could be seen for her appointments at the same time. So here is the schedule...

Monday, we collect pee all day:) FUN! That is so we can take it to Katia's appointment on Tuesday and they can send it to lab. We need the results before she can have her next Pentostatin dose on Thursday.

Tuesday, Tatiana will go with us and she will have her MRIs at 2PM at All Children's Hospital. I feel so bad for her as he MRI will last for 90 minutes. She had a hard time with the 30 minute one recently but she says she can do this. This will be an MRI of her brain and another of her left shoulder region. That will be a great day to get behind us (for Tatiana's sake).

Then on Thursday we go back to Katia's appointment for the Pentostatin Dose. I really hope to have results of Tatiana's MRI by the end of next week so we can move forward at getting her better. The EMG (nerve study) doesn't seem that it will happen until October unless things change due to the MRI results. Maybe she wouldn't need the EMG if they can find the answers in the MRI. When it comes to this, you hope they FIND the answers but that the answers and solutions are simple and workable. When things come back, "Everything looks good", it just means you keep on looking. The idea is to find the source of the problem and the source be like a "loose wire" or something. I pray for simple solutions always.

The other day, when we were at clinic all day, Tatiana said she doesn't understand how we can go and sit there for so long. I guess we are just used to it. It is part of life. I thank God for giving me the patience to sit still:) Actually, Katia is quite good company on those long days but when she falls asleep, time drags out! I try to bring work with me to do or something.

Well, thank you for your prayers. Thank you so much for following the other children I post on here.

Angel Cody was always such a dear to check on. If you live in an area where they will be having one of his services, I urge you to go. If you read yesterday's earlier update you will see that his Mom would love to meet some of Cody's fans, including those "Ladybug Club" members that prayed for him and left guestbook messages. All of us parents so much appreciate the prayers and love that are shown to our kids. I cannot imagine the emptiness they are going to feel in their house. All of our prayers are that we never have to face that situation and it breaks our hearts when we see someone we love going through this very situation, losing their child. Please keep them in your prayers for a very long time. In this case, broken hearts don't mend, they just learn to get through each day.

Thank you so much for being such an important part of Katia's journey and healing:)

Love, Tracy

PS Please pray for Christi Thomas as they have recently found out she has relapsed and her disease is rapidly spreading. She fights Neuroblastoma.








August 18, 2005 8:10 PM

Please pray for the family of Angel Cody as he earned his angel wings shortly after 4:00 PM. Cody fought with an amazing strength and the love of an amazing family, as well as tons of Cody fans. Rest peacefully sweet Cody.

Love, Tracy







August 17, 2005 7:30 PM

WBC 7.1
HGB 13.3
PLT 270
ANC 5000
Weight 17.6kg (39 pounds)
Height 95.6 cm (3 feet 1 inch)
FK506 11.5 (Good)

Well, today was a long long day but it is all done now. Katia had her IVIG transfusion which went well and will hopefully boost her immune system for the next 2 months.

Her counts all look good on her regular numbers. They do some bouncing around with this new treatment but they look good.

Her weight was the same as last week and of course, so was her height:)

We go back next Wednesday and Thursday, with Katia, to clinic. On Tuesday, we will do a Creatinine Clearance test to check her kidneys (collect pee for 12 hours) and on Wednesday, we take it in so they can have the results before the next Pentostatin Treatment on Thursday. Wednesday she is also having her yearly physical. I think that is funny since they see her every week, sometimes twice, but that is okay. Maybe she will grow or something:)

Okay, Tatiana's appointment now:) How many are confused by Katia and Tatiana's appointments? I get confused.

Tatiana saw the Neurosurgeon at All Children's today and I was very pleased with the staff and the visit. They went over her MRIs and gave her a full physical. She did all sorts of tests and exercises and THEIR main concern is that one of her shoulder blades is sticking out and the area around it is puzzling them. They believe this may be the biggest sign to her underlying problems. Some type of an atrophy. SO, she is going to have an MRI of the shoulder region as well as brain scans to see if there are any abnormalities that would be the cause of all of this. That should be done reasonably soon at All Children's. They also want to do an EMG (Electromyography) done. It accesses the health of the muscles and the nerves controlling the muscles. I have wanted this done for quite some time with Tatiana.

This doesn't look like it will be done until October...

Tatiana doesn't like the sound of the test but it would be done in the hospital with some type of sedation.

For an EMG, a needle electrode is inserted through the skin into the muscle (TATIANA SAYS OUCH!). You can read more about it by following the Medline Link.

Anyway, I have my ideas on this and I think this doctor agrees (although I haven't voiced my ideas). So, we will just keep moving forward trying to find the cause of the problem, Tatiana's pains, numbness, etc.

All in all, it was a long but good day. I know Tatiana liked the doctor today since he seems to be concerned and sounded eager to find the cause of the problem and a solution.

Well, I better close this out. I am waiting for a call about Katia's FK506 levels but I hope they have stayed above 10. I will update more in the morning.

Love, Tracy



****************

August 16, 2005 3:30 PM

Katia met her teacher today and she seems very nice. Katia took a liking to her immediately:)

Things have been busy today mainly getting some things ready for the appointments tomorrow with Katia and Tatiana. I will be glad to finally talk to another doctor concerning Tatiana.

Katia, of course, is going to be plugged into her IVIG tranfusion for the most part of tomorrow and hopefully that will boost her immune system back up for a bit.

This coming Sunday is my birthday and Katia says she is going to write me a story and sign her name to it:) Aren't those the best presents!! I love handmade cards from my kids for my birthday and Mother's Day. I have told them to keep that up no matter how old they are. That is my favorite:) I hope to be spending a decently quiet day, at home, with my family. That is my wish:)

I have updated the Prayer Request and please continue to pray for Cody that a miracle can happen in his life. I know his family appreciates the prayers.

Love, Tracy







August 16, 2005 12:25 AM

Please pray for Cody and his family. The news today has been devastating.

Love, Tracy




August 15, 2005 6:10 PM

Have I told each of you lately how much I appreciate your allowing me to share Katia's story with you?

I do. And I appreciate Caringbridge for having this service. What a great thing!!

Today was not too good of a school day for Katia. She was very put out with herself about her writing so she frankly put it off till tomorrow. We meet with her homebound teacher in the morning. I am looking forward to the meeting.

Katia is seeming to be a perfectionist (not sure where she is picking that up from) but I think her school work is just fabulous!! I think today was just an off day for her holding her pencil for some reason. Her hand just wouldn't do the trick and she was getting so mad. She did however do quite well with the eraser.

She decided to spend time on her the website that goes along with her school work and she used her Leap Pad so all in all, she learned:)

Well, it is late and I need to think about dinner. I wanted to get on here before the evening slipped by and just say thank you for keeping up with Katia and our family. Thank you for your prayers.

Love, Tracy

PS Katia and Tatiana both have appointments at ACH on Wednesday. Katia will get her IVIG transfusion and Tatiana will be meeting the Neurosurgeon for the first time. Pray they have some answers to help Tatiana.






August 15, 2005 11:47 AM

Please check out Jerry's latest news:) I will be back to update on Katia in a bit. We are doing school work right now.


Love, Tracy






August 14, 2005 9:50 AM

Please pray for our friends Mark D and Kelly M. as they are both in the hospital and in need of prayers.

Cody also is still very much in need of your prayers as well as Jacob D. and many others on the Current Prayer Request List.

Katia is doing something right now that I wanted to share with you. She is signing her "Ladybug and the Dragon" Books. Yes, she is putting her name in the books. I do have to say that they look so cute with her "added touch". We were watching the news today about a book signing and she said, "I can do that!" so she is, for now.

Well, I may be back later today to do some updates. I mainly wanted to jump on here and ask for your prayers for our little friends that are struggling. I know they very much appreciate your prayers and the signings on their guestbooks. We LOVE to read your guestbook messages as they are always so loving and uplifting and Katia was smiling ear to ear when I read the messages about her handwriting of her name!

Love, Tracy







August 13, 2005 2:15 PM




That is all for today:)


Love, Tracy


*******************

August 12, 2005 2:00 PM

Please pray for Kelly M. as she started having seizures yesterday and was rushed to ACH. She is currently in ICU.

I spoke with Katia's homebound teacher today and Katia should be starting with her in about 2 weeks. I am looking forward to this as it will be good for Katia to get instructions from someone else:) However, Katia is doing very good with her school work and she is SO eager to learn. I am so glad about that.

Tatiana's appointment is next week, Wednesday the 17th, with the Neurosurgeon and I am trying to line up for Katia to have her appointment at the same time for the IVIG transfusion. Both offices are in the same building so I can go back and fourth between the 1st and 4th floor.

I just wanted to jump on here and update. Things have been pretty hectic around here today. Have a good weekend and thank you for your visits and prayers.

Love, Tracy







August 11, 2005 3:50 PM

WBC 6.2
HGB 13.6
PLT 263
ANC 3300
FK506 11.3 (finally over 10!!)
IGG 460 (dropped-needs the IVIG-5 hour transfusion)

The FK506 and IGG levels aren't back yet. They come in the evening or the next day.

We had treatment #2 of the Pentostatin today and all went well. Katia's broviac worked like a charm:)

Katia's face has been looking better, which is good but her mouth (the white areas inside-pictured on here before) are worse and causing her quite a bit of pain when she eats or brushes her teeth. That is also said to be part of the GVHD so we are hoping this will show improvement. Instead of one white patch, she has 2 now and they take up a decent size area of her right cheek inside.



This isn't a picture of Katia's mouth but this is basically what is in there. Two of them.

You know, all in all we are very pleased with Katia's progress, although it is far from where I imagined it would be 18 months after transplant. Our biggest goal right now is to be able to get the GVHD under control without the use of steroids. Katia has just been on steroids way longer than she should have been. Even that isn't doing what it used to do for the GVHD. It used to clear up the GVH.

Aside from that, Katia is happy and doing well with her school work. She can write her name all by herself and get it right:) I have to keep an eye on the walls around the house to make sure she isn't going around signing her name everywhere. There are hidden ladybug drawings here and there on our walls. I keep permanent markers out of her reach...

Thank you for all of your prayers. They are needed right now, in a few ways.

On another side note, thank you for the "Ladybug and the Dragon" book orders that have been coming in and I am so glad some of you are sharing Katia's story with your friends and family. There is a group of mail going out tomorrow which goes through today's orders.

The Author/Publisher of this book put a lot of his time and finances into this book with the purpose of helping to spread the word about cancer, research and the need for marrow donors. He has agreed to do a second book but of course, that would be seeing that we are able to sell out of these copies that have been printed. I would love to have a PART TWO of this book:)

So here is a cute picture with Katia and her book.



She thinks she is acting like me but, no, I do not wear pigtails:) She gives the book two thumbs up!!

Also, the Prayer Request have been updated over the last few days. I know Cody and Jacob are really in need of prayers though and encouragement. They have both really been going through so much as well as their families.

Love, Tracy




**********

August 9, 2005 5:00 PM

Wow, this has been one rainy day! It has been thundering and lightning and just pouring down rain!!

Katia decides to sleep a lot of that away but we did do some school work this morning and I am very proud of how hard she tries. Her favorite question, "Is it perfect?" We are working on her Capital A's and Lower Case a's and she likes writing them. There is a website that goes along with her school books so we spend time on there too. I still have not gotten the finalized "Homebound Program" paperwork in but we are started on our part.

I have also been spending time doing house cleaning. It does feel good to get things organized again. It is still a work in progress.

I have a favor to ask you. I know some of you have already done this but this is where the lack of organization on my part comes in. I am trying to get together a "Yahoo Photo Album" of the members of the "Ladybug Club" but a lot of the pictures have been misplaced in my computer. So, if you would like to be in this album, you can email me the picture to tmsol87@aol.com and I will get them in there. Also, make sure you include your name and your part of the world or country if you will. Bracelets are again available:)

Well, let me cut this short. Katia is having "tushy" problems right now. Her last few days have been going back and forth between good and bad. We go back to clinic on Thursday for the next treatment of Pentostatin.

Thanks for checking in:)

Love, Tracy









August 8, 2005 2:20 PM

I have tried to sit down and update a couple of times. I wanted to add the new pictures of Katia so you can see that SOMEONE is in a much better mood and feeling better today. She is in quite a good mood actually. Right now, she is doing her school work and she is so proud of herself. She is writing her name (trying to) over and over. That is a good thing to always know.

I have had a rough past few days really. I will never know all of the "why's" in this world. I have learned that a lot over these last few years. I check on websites and I see kids that should be running around and going to school, stuck in bed in the hospital or forced to be home due to poor immune systems. Why? I don't know.

I follow many different stories of people fighting for their lives, both children and adults. These are babies, daughters, sons, fathers, mothers, sisters, brothers, and so on. There are days when I open a site and am shocked to learn of someone's passing. Even sometimes, when you sort of know things are not going well, it is still shocking to read of their passing. My prayer, no matter how bad things seem, is for a miracle!! That is always a possibility. Why isn't everyone granted a miracle? I don't know.

There are other times when someone has gone through so much and seemed to have won their battle only to be faced with another battle. Why? I don't know.

I know a lot of people think I am so strong and sure of myself and things around me but I can't say that I agree. I do know that I have a strong faith in God. I pray each day that He will never give me more than He will help me handle. I never knew all the things I would face in life but I do have to say that God, by the way of friends and family and blessings, has always seen that I have the strength to go on.

I look at Katia today and I look back on this time 2 years ago. We spent most of July and August 2003 clowning around the house. I must say I remember those days so fondly. We would go out on her swings, the backyard, the front yard and just really enjoy being home and being healthy. She had her bad days but mostly she was having happy times making cookies, dressing up in costumes and just being silly little Katia. She loves when just her and I are at home and she has me "all to herself". I guess I clown around a lot more and she likes that. Well, that is what we have been trying to do a little today. Katia needs me. She needs me to laugh and have fun with her.

Today is Shirley's memorial service and I know that she followed Katia's journey and only wanted good things for Katia. My mom, Shirley, my sister Candy and my brother Terry all live in Virginia. We very rarely got to see each other, since we were kids, but I kept in touch with my Mom, Shirley and Candy via phone, email, etc. Shirley, Candy and Terry are from my Mom's second marriage. Although I know it wasn't easy, my dad would always take us up to Virginia to visit them from the time they were very little. We would go up every Easter and just have so much fun together. I haven't been there since I was 13 years old. I was chatting this morning with my sister, Candy online, and we were just remembering those days, all carefree and happy. I never imagined this day would come. I have gotten a lot of emails and messages and I so much appreciate that. My mom, aunt and sister, Candy have been reading the guestbook and I have shared some of the emails with them. They appreciate your prayers so very much. So, today is a day that I will reflect on the happy times I was able to spend with Shirley and also on the fact that God has blessed me with a wonderful and loving family, the best friends a person could ask for and the fact that Katia is feeling well and singing around the house.

We never know what tomorrow holds but today is here and I plan to make the most of it.

I like to make memories every day. That is why I like pictures and videos. I am going to add the rest of the pictures from today to my Yahoo albums (the link is always at the bottom of the page) so you can see Katia and her good day. They are ALL Katia pictures!!

I want to share this picture with you though. I wish I had taken it yesterday but I didn't think of it. The first one is Katia on August 7, 2003 when she had just gotten this ladybug dress from Angel Jalen's grandma. Since Katia hasn't grown much in the last two years, we get to take another picture in it today, 2 years later:) I love that smile!!



Thanks for being a part of our family.


Love, Tracy



******************

August 6, 2005 11:50 AM

First, please please pray for Jacob D. and his family. The recent scans show his cancer is again progressing so the latest treatments have not been working. What they have him on right now is causing a LOT of bad side effects. Jacob needs a miracle.

I have updated the Prayer Request and I will try to keep them updated. I appreciate so much the emails letting me know about updates on other children. I am not able to do as much checking/signing on other sites as I have been in the past. Please always know each of you are in my thoughts and prayers.

Katia had a very rough afternoon and evening yesterday. Hopefully today will be better. She has been VERY emotional and crying and just not happy at all. She is having a LOT of all over itching with the GVHD and nothing seems to be making it better. This has just been a stressful week all the way around but when Katia is feeling bad and not happy, our attention goes to her. She has been through so much and she really tries to always put on a happy face. We are praying this new treatment will go into gear soon and clear up this GVHD. It takes about 6 to 8 weeks for that to happen though, if it is going to happen. I really hope this will work.

Katia's FK506 level only came up to 6.7 which is not high enough. It needs to get up to 10 so we have again gone up on this medicine. This is her anti-rejection medication for her new bone marrow.

We have been having some AC troubles here which has caused quite a bit of water to back up in our garage. So, we have a lot to clean out and go through over these next few days. Summer is almost over but this has been a hot one. We still have most of hurricane season ahead. Katia likes it when it rains though and if the lights go out, she pulls out her flashlight. She has it all ready to go:)

Thank you so much for your prayers. I spoke to my Mom and sister, Candy last night and they appreciate your prayers as well.

I am going to keep this short. I just wanted to update this morning while I had the chance and update some of the Prayer Requests.

Love, Tracy







August 5, 2005 4:45 PM

First, please pray for Maddy. After a few days of showing improvement, she has taken a definite turn for the worse and really needs prayers.

Katia is doing well. She has done 2 days of school work and she really likes it a lot:)

She does computer programs, writing, cutting paper (her favorite) and writing her name. She is very eager to write and to learn how to read so that will help me. I have taught 1st-3rd grade before so I like the challenge of teaching children how to read. I think it is so neat when you see them able to pick up a book and read and enjoy the book all on their own.

Well, I have to keep this short. I put off updating waiting for the rest of Katia's labs to come in but I still don't know the FK506 level. I just hope it is 10 or above so we can keep her on the same dose and not need to raise it again.

Katia says hello by the way (loudly) so I told her I am typing it here.

Thank you so much for your prayers for my family. It means the world to me.

Love, Tracy








August 4, 2005 6:08 PM

WBC 5.7
HGB 13.8
PLT 280
ANC 3900
IGG 566 (dropped)
FK506 6.7 (not high enough)

All those numbers are pleasing. Katia had a good visit other than her broviac not working but after an hour of TPA, we had that working again.

Our next visit will be in a week for the next treatment of Pentostatin.

I would like to thank each of you for your prayers. Without even reading the guestbook, I literally can feel that there are so many prayers going up. In reading the guestbook, there is so much love and understanding. Thank you.

I have felt pretty emotional throughout the day. Some parts, my mind gets involved in Katia and things dealing with her or the girls' first day of school and all that goes with that but then my mind goes right back to Shirley. So, thank you for your prayers. Thank you for your emails.

On another note, I would also like to wish GRAMMIE (Myron's Mom) a very happy birthday today! I won't give away her age but let's just say, she doesn't look her age at all and she is just the most lovely person and loving person imaginable. She is a great example of a MOM:)

I will come back when I know the rest of Katia's labs. I am praying her FK506 level is closer to a 10 and that her IGG level is staying above 500. Those numbers don't come in until later in the evening or tomorrow.

Sharayah and Tatiana love their classes, teachers and such and had a good day back to school.

Katia had a session of schooling today also with Mommy. We have her school books from school and we will complete them and hand them in. She is VERY EAGER to learn!! She also does computer programs and her little mind is a sponge for education:)

Again, thank you for your prayers. You mean so much to my family.

Love, Tracy







August 3, 2005 5:45 PM


First, Katia is doing well. I don't want to get anybody nervous about that.

***

This morning I woke up to some devastating news. My youngest sister, Shirley, had taken her own life. She will be so very missed. She was just 29 years old.



Please pray for the family at this time.

Thank you.

***

I will update tomorrow after Katia's clinic visit.

Love, Tracy


*************

August 2, 2005 5:00 PM

Good day:) Wow, 5:00 PM again today... I am like the 5:00 news.

How do you like those pigtails? Sharayah gets them all nice and tied back. Katia loves her pigtails, she can just do without the "OH HOW CUTE!" she gets from us in the in the morning around here. I just love her in pigtails though:)

First, I should clear up something. I am definitely not a "bake pie from scratch" kind of person. I wish I had that kind of time or talent:) These are pretty simple pies but they are delicious!! I get the pie crust and then use puddings as the fillers. Instead of 2 cups of milk in the pudding mix, you put 1 3/4 cups of milk and then it gets nice and "pie like" after a few hours in the fridge. Pretty simple:)

I had to laugh when I read that, Judy, in the guestbook. Sharayah and I were talking about it yesterday. We were just so proud of ourselves to do yard work and bake a pie all in the same day! She likes to try recipes and such though and she started this pie thing because she wanted to make a Key Lime Pie from a recipe she saw the other day. So, after she made that, I thought, we would just make one every other day or so. Of course, Katia was all happy about this "pie making idea" so last night, we made the Oreo Cookie Pie. YUMMMMMMMMMMMMMMM!

As far as my shoulder, I went to my doctor today. I always have a lot of back pain and elbow pain and such. I have heard a few times that it is arthritis but then, I am only 35 (almost 36 this month) and I just don't think I should have so many aches and pains. I have always been on the "fragile" side with my bones. So, today I went in thinking my shoulder was basically dislocated, it isn't. It is just swollen and he feels it is arthritis. Tomorrow, they are doing an MRI on my middle back area just because it has been giving me so much trouble lately. It is due to all of this that I feel so bad for Tatiana. I am pretty used to popping and ouching when I get up or do things but she is only 12. I do have to pick up Katia a lot when I am the only one home with her and lately, she hasn't been too light. But, I will be okay:) I was checked for rheumatoid arthritis and that came back negative so that was good. Anyway, we will see what the MRI shows.

Florida has been really hot this past few weeks. I know us Floridians always say we can't wait for cooler weather and then when it gets here, we can't wait for warmer weather but this is a bit too hot right now.

Well, I didn't realize what time it was until I sat down to update and get this picture posted. Sorry it is only one picture. I will try for a few more.

I did talk to Katia's teacher today from school and she is going to get Katia's books and such together for her HomeBound program but she sounds really nice and is going to be very helpful to me.

****JERRY UPDATE FROM CAROL*******

Tracy, Jerry started on morphine yesterday for the mouth/throat pain, so he is much happier. His counts have all but dropped out, which is of course suppose to happen. It's called neutrophenic? (not sure of the spelling) They say around day 12-21 the counts should start coming back up which means the graph is happening. The good news is that 3 days after Total Body irradiation and Citoxin that the tumors in his groin had noticeably gotten much smaller! Yea!! I will get his count tonight and catch up with you soon. Take care, much love, Carol


******

Thank you so much for all of your prayers and for signing Jerry's Guestbook.

Love, Tracy





August 1, 2005 5:00 PM

Good day:)

It is about to pour down rain here which brings on lightening and thunder so I wanted to get this update on here before I turn off the computer.

Things are well here. The girls are on the big countdown to school starting this Thursday. They are packed and ready to go. We actually have clinic that morning also. Katia likes to have the house all to ourselves and have coffee on the back porch with me (well she has juice and cheerios). I guess that will be Friday morning's plans.

Today was busy. We did yardwork and cleaning and we are very tuckered out to say the least. That is the nice thing about the rain coming. I planted 3 little trees today so they need the rain. I am really not a "Yard Person" seeing that I can barely keep potted flowers alive, but when I decide to do something, I don't stop till it is done. Today, Sharayah was my helper and she was QUITE A HELPER!! I think I accomplished hurting an already hurt shoulder. It is not feeling good at all.

I have a new picture to upload on here so I will do it tonight or tomorrow. It is Katia with those pigtails like in the picture to the left of her in July 2003. The pigtails are BACK:)

Katia is quite puffy right now. I am not sure what they are going to say/do about this weeks weight gains but she is either holding water weight or something. She has a HUGE belly right now. She is feeling good for the most part though. Thursday, we only get labs, no treatments planned. She just wants to go and get back home.

Thank you so much for all of you signing Jerry's Guestbook. We spoke to Carol today and Jerry is doing well. He is having mouth sores and stomach issues so please keep that in your prayers. This is such a crucial time for him.

Also, thank you for signing Katia's guestbook. I received an email from someone today who has been reading the WHOLE guestbook over the last few weeks. That is A LOT! There has always been so much love shown to Katia and our family. I sit down and read through guestbook entries of past dates. It really inspires, encourages and gives me strength when things seem tough. I know we are far from alone in this. You all are like family to us (some of you are our family) and I always want each of you to know how much of an important role you have played (and will continue to play) in Katia's life. Someday you can be sending her Graduation Wishes and celebrating other monumental events in Katia's life:) She is growing up online.

Well, I better run. We are making a pie:)

Love, Tracy







July 30, 2005 7:47 PM

Good evening from the Solomon Household:)

We just had a bunch of rain and lightening but it is all past now so I can update.

Not really much going on here. School starts this Thursday and we were talking about how it ALWAYS rains on the first day of school here. We will see. It is Florida weather.

On August 12, 1985, when I was 15 years old, our house was struck directly by lightening, burning it to the ground within minutes. We weren't home which was a good thing. We had driven up to Gainesville to take my sister to a friend's house for a weekend. When we came back, we ran into the fire marshall leaving our house. So, every August, I hate lightening storms!! My kids don't really share my fear of lightening but they have a great respect for it and what damage it can cause.

As August approaches, it also comes to mind that August 26, 2003 is the day we found out Katia had relapsed. Last August, we had just returned home after being gone 11 months and this August, we are praying that things will continue on the road to recovery for her. Katia has been doing well these last few days. I am a bit concerned about the weight she is putting on. She was 18.2 kg tonight which is nearly 40 pounds. That wouldn't normally be much for a kid her age but she is also only 37" tall.

I looked back on her hospital records today to find out her growth pattern because of course it is of concern to me. I do understand all the treatments she has been on will slow her growth but it still concerns me.

Here is her history.

April 2002 (diagnosis time)- 85.5cm (33 inches), 12.4 kg (27 pounds)

August 2003 (relapse time) - 90 cm (35 inches), 14.8 kg (33 pounds)

August 2005 (now) - 95.7 cm (37 inches), 18 kg (37 pounds)

So, since April 2002, she has grown 4 inches and gained 10 pounds.

I am sure her growth spurts are ahead though. Her day is coming.

I used to always tell Sharayah and Tatiana (if they picked on Katia) that she would one day soon outgrow them and get them back. Sharayah and Tatiana are far from being big kids and at the age of 2, Katia was showing she would outgrow them. Then, she began all her treatments. Since then, she is the "Family Baby". She is still small enough to be picked up and squeezed and held. We all still enjoy that. She hasn't yet outgrown any of the clothes she had from two years old. In fact, I am planning on taking a comparison picture of her in her "Ladybug Dress" from Jalen's family that she received in August 2003. She still wears it. She loves that dress. When we found out she had relapsed, I decided that would be the dress she would enter back into the hospital with. When she showed up for admit, she was dressed with her ladybug dress and hat. Her personality really stuck out as she started another fight for life.

I know life will never go back to whatever we though "normal" was before Katia was diagnosed but I do know I appreciate things more and think about things a lot more. I would definitely have to say I worry more but I also have a lot more faith than I did back then. I appreciate my friendships more and I see more "in" my kids than I used to.

Okay, I have babbled enough. How about I skip updating tomorrow and come back on Monday? That way, your eyes can adjust:)

Have a good weekend, Love Tracy:)



*****************

July 29, 2005 4:12 PM

WBC 6.7
HGB 14.0
PLT 272
ANC 4300
FK506 6.1 (should be 10)
IGG?

Pentostatin Treatment #1 DONE


Well, we are back from clinic. Things went well once we got started. First, Katia's broviac wouldn't return blood so we tried tipping her this way and that, having her cough, hummmm, anything that would normally work. It didn't so we put in the TPA (broviac DRANO) and gave it an hour and it still didn't work. Now we are running behind on schedule. Then it started spurting out little bits here and there and then, BAM!! It worked:) We were all so happy.

So, she got IV fluids first, then anti-nausea (Zofran) and then the Pentostatin. When the treatment was done, she had another hour of fluids.

She did have fun today though. She had to do some tests and one she had to get her heart rate picked up to test her oxygen levels and such. To get this to happen, her and her doctor were running around clinic and then stopping to check her heart rate and then they would have to run some more. It was funny to watch. They finally got what they needed, thankfully:)

Then they had to take pictures of her tongue and mouth to show what it looks like at the start of the study treatment. Katia did quite well with that since she is used to Myron and I taking so many pictures.

All in all it was an eventful day:)

We just have to watch her closely for certain symptoms that we would have to call the doctor for. I am not expecting anything bad to happen though. In the long run, it may or may not work and it could damage her kidneys or cause kidney failure but we are hoping that it takes care of clearing the GVHD and not cause her any harm. That is our prayer.

Well, I better get this done so I can get it posted. I will update this again tomorrow with any new news. Her FK506 is still low although we have gone up on the dose so we are going up more... I hope this problem will clear up.

Thank you for your prayers and email. Please always feel free to email me. I will get back as soon as I can and I very much appreciate updates on those I have in menus and prayer requests. That is very helpful to me since I can't visit as many sites as I used to. Please pray for Chris as things have not been going well for her at all. Also for the previous requests I have mentioned over the last week.

Love, Tracy








July 28, 2005 4:55 PM

This is just a brief update on Tatiana (not Katia) as I know this can get confusing. If you are new to this, there is a brief understanding about Tatiana's problems in the July 26th update.

It seems the MRI she had on Monday shows she has Bulging disc in her back and Spinal Stenosis,narrowing of the spine so they want her to see a neurosurgeon at All Children's Hospital. So, it seems Katia and Tatiana will be "All Children's Hospital Kids" in a way. Hopefully they can just get her on the road to feeling better. Her appointment is August 17th.

Katia goes in the morning for her first Pentostatin Treatment. Please pray all goes well. We won't see results from these treamtments until about 6-8 weeks into treatments.

Thank you so much for your prayers.

Love, Tracy

PS Remember, Jerry had transplant his transplant today:) Please keep him in your prayers that his new cells can grow!!



July 28, 2005 11:01 AM

Good news is all things that were ordered through yesterday were shipped yesterday so items are on their way:)

Katia is doing good today. She just ate pancakes so her day has started off on a very high note:)

Her IGG levels from Monday look good. I can't remember the exact number but it seems like it was 630 which over 500 means she doesn't need the IVIG transfusion.

One concern is her FK506 (anti-rejection drug) level is supposed to be around 10. It was low so we upped the dose a while back from 0.8ml twice a day to 1.0 ml. The level went up to about 7.0 so we upped the dose to 1.2 ml twice daily and now her readings are even lower to 4.7. We need it to be around 10 or above. I am a bit confused as to how the level is going lower when we are giving her a higher dose twice daily. We will retest her on Friday when we go in for the Pentostatin Treatment. I don't know if her body can begin to become accustomed to this drug but this is to protect her from rejection. That is my concern right now.

Katia's face looks better though and she isn't itching so bad. That is a good thing. I think her body has "conflicts" some times and other times not. If she has a simple infection or disturbance to her system, it causes things to go "haywire" (no better word to use).
Right now, she is feeling better and looking better. She did have quite a rash on her back and buttocks last night but I treated it and she seems pretty good there today too. Hopefully she will have a good "itch-free" day:)

We have been spending the last few days trying to tie up lose ends and prepare the girls for school (which they are VERY excited about!) The summers seem to go so much faster now. Yesterday, the heat index here was 105 degrees. It sure felt like it.


Thank you so much for your prayers:)

Love, Tracy

PS I may be back further today if I find out anymore about anything.





July 27, 2005 8:40 AM

First, thank you so much for all of you visiting Jerry's Site and signing his guestbook. I know this means so much to Jerry and his family. His wife, Carol, will be printing them and reading them to Jerry at the hospital. Thank you:)

Also, for those of you who have orders you are waiting for, they are shipping out this Friday as well as orders that come in between today and tomorrow. There are no bracelets (other than the orders already paid for) until I get more beads. But we have "Ladybug and the Dragon" (Katia's Story) Books and

"Questions" CDs
. Remember there is a great special on the books.

We are going to try to work on a way to get these into libraries which would be just great!

Well, I better get my day going:)

Love, Tracy







July 26, 2005 3:55 PM

Good day:)

We just got back from Shriners for Tatiana'a Physical Therapy. It is so HOT out there but thankfully not as hot as Arizona, Chicago and some other places. I pray this heat will be done for them soon.

I have gotten a lot of emails asking "What is wrong with Tatiana?" So, I guess I can describe it in a paragraph or so.

Tatiana was born a cute and cuddly little baby (with a TON of LONG hair) 28 days late. We were in the military at the time. There is no mess up on the day she was conceived because I had to have surgery soon after she was concieved and pregnancy was confirmed through that. Anyway, I just wanted to throw that in. You will see why I bring that up later.

So, when she was about 4 years old, maybe a bit sooner, the military was doing follow-ups (we were out by that time) on soldiers that had been in desert storm as well as children that had been conceived since. Tatiana had issues by then of being a late walker and very unsteady on her feet. Plus she would just seem to trip over nothing or fall out of a chair and such.

She went through a few different tests and one thing that was found was she had very hyper reflexes on side of her body and lazy reflexes on the other. I blamed that on her being born so late. But, time went on and we just learned to keep a close eye on Tatiana and make sure she didn't get hurt tripping or anything. Soon after, she started school and again, it was brought up by her teachers about the hyper reflexes due to the fact she would fall out of a chair with no reason. We explained to them and had been told she may outgrow this.

Okay, years pass. Tatiana has always been quite small for her age and usually the smallest in her classes. It isn't like she comes from tall parents so again we accepted that.

Two grades back, we were sent a note saying she had scoliosis that had been found during school testing. Her pediatrician agreed and an orthopedic doctor agreed. He said it wasn't such a bad curve, very minor and that we should just watch it. This past school year, Tatiana did quite a bit of growing from size 8 to size 14!! That is a lot. She really started experiencing more pain and her gait was just off more. She seemed more clumsy and she was getting a numbness in her right arm and her left shoulder blade was sticking out quite a bit further than her right.

We were directed to another orthopedic doctor and he agreed, scoliosis but he wanted her to see a neurologist due to the shoulder blade and her reflexes.

Myron and I have heard great things about Shriners Hospitals which is mainly for orthopedics so we talked to them to have her seen there.

First appointment we find out she has NO scoliosis. She has a beautiful spine. X-rays looked picture perfect! They noticed the reflexes during her exam which concerned them so they ordered the MRI (done yesterday) and a followup with a neurologist in September (earliest appointment).

Tatiana is going to physical therapy once a week right now and doing yoga and stretches a few times each day. She is also having to watch her posture and what she carries or picks up.

Did I say A paragraph? Sorry:)

That pretty much brings you up to date on Tatiana. So, hopefully they can get her feeling better, walking better and back to being more active. I think we are headed in the right direction with her but she still experiences a lot of pain. I am eager to see what the MRI says and what the neurologist can make of it.

Okay, now to Katia. She is doing okay. She started back on her blood pressure medication and also penicillin twice a day since her counts are going to be affected by this new treatment. She used to be on Cipro but she really stopped responding to that. So, she has 3 more pills to take each day which brings her to 19 pills a day (which she takes fine) and her FK506 which is a liquid. She takes her pills and medicines with no problems. I think she is just so used to that being part of her day and she likes to hear "Good job" and get a ((((((((HUG)))))))) when she is done.

I am going to try to get a couple new pictures up tomorrow but I really haven't taken any lately. Her eyes are just really sensitive to the lights or flash but maybe I can get some pictures of her playing or something:) She is eating very good and following the "food rules" and she is staying active. Her bottom really hasn't been bothering her much either. Maybe the colonoscopy CLEARED the problem in the process of running the test or all the laxatives. I am sure she will be happy I shared that with you:)

We all watched the shuttle launch this morning and Katia thought that was SO COOL!! We heard it outside. I pray they have a safe trip and accomplish their mission, arriving back home safely and on time.

**JERRY UPDATE**

Jerry is finishing his radiation treatments today for his bone marrow transplant and he finishes his Cytoxan treatments tonight. Tomorrow he has the day off (in the hospital) and then the next day (Thursday) is transplant. PLEASE PRAY FOR JERRY. He and his family very much want people praying. They followed Katia through her journey and they know it isn't going to be easy at all. Jerry is already having a lot of problems with nausea and such as well as mouth problems. They did find out the woman that is his donor is an American Indian. It is amazing to see how matches come together. Like Katia, Jerry is a very mixed heritage. So, please pray for him.**

Jerry has a GUESTBOOK so please stop by and leave him a message. Tell him the "Ladybug" sent you:) This link will always be available from Jerry's Story Page.




Love, Tracy



July 25, 2005 1:55 PM


WBC 5.5
HGB 13.8
PLT 269
ANC 2500
IGG 630

We are back... Yes, we were planning to be gone all day but that was changed till Friday due to some tests results still needing to come back. The test needed is Katia's kidney function test to make sure her kidneys are prepared (her kidneys have never given us an issue even with all she has gone through and all the medicines she has taken). Her counts looked good today. Just a few things were a little off. She will be starting back on Norvasc for her blood pressure as it has become high again due to the steroids. Her platelets came back to where they should be. Her rash is about the same and her lip is really busted up looking due to GVH and her trying to peel it off. It looks a lot worse than she says it feels. She was upset that she wasn't getting "plugged in" (that is what she considers being on treatments and such) so we had to explain to her it would be Friday. When she gets her mind set on something, she gets it set (I don't know where she gets that from ~ Ha ha) She has also been doing much better with eating veggies and fruit cups and not so much Mac and Cheese, Spaghetti O's and cupcakes. Her doctor was very pleased to hear that:)


So, the plan is Friday:)

Tatiana did have her MRI done this morning. I just spoke to her and Myron on the phone. She said it was hard but she did it:) I am so proud of her. She was beginning to get claustrophobic but Myron was there with her so she finished it out. Overall, I think it was a little over 30 minutes. Myron said her lips were ghost white. Poor thing.

I have a few prayer request here.

~~First, Frannie (nc/frannie) passed away yesterday. I am sure her family will be dearly missing her. Please pray for her family.

~~Also, I shared with you about Julie who is very much struggling with GVHD. I posted an update a few days ago as things are not looking good for Julie at all. Here is that update again. Julie was diagnosed with Chronic Myelogenous Leukemia (CML) in late November of 2004 and had a bone marrow transplant on May 10, 2005 with a 9/10 stem cell match. She has been having a very difficult time and now, things are really not going in the right direction. The GVHD is taking over from what I understand it is in her liver and gut. She is jaundice and having constant diarrhea. She has a 10hance of recovering form this; however they are giving her a new drug Ontak (sp), it is not approved by the FDA and with the drug she has 15The drug has all of its own side effects that are making it very dangerous for her, like septic shock. She is still fighting and fighting hard. Her kids found out yesterday, Avery is 10 and Jonah is 6. It is awful. She is so sick. Please pray for her and leave her some words of encouragment in her guestbook. Well here is another way to help that works wonders. This was sent by one of her friends to me.

***Dear all Friends who love Julie,
Lets flood her room with cards and well wishes.Keeping her spirits high is part of this battle. This is something all of us can do to help her through. Let her know she is not alone.
Julie Congdon Rm 337
C/O Moffit Cancer Center
12902 Magnolia Dr
Tampa, Fl 33612

We can support Julie from all over the world with cards! Lets fill her room. Let her know she is not alone in the fight and it is time to FIGHT LIKE A GIRL!!!!!!!!!!!
****



~~Also, one of our Caringbridge Kids that I have kept up with for quite some time, Cody has been also really struggling with chronic/ severe GVHD. His problems and symptoms are adding up due to GVH getting into his major organs. They are planning to head back to Duke University to hopefully figure out a new plan of action but their options are really running out and they desperately need prayers and encouragment. Cody has been through so so much.

I will add the IGG level above later but thank you so much for your prayers today. I guess the answer was we got to come home earlier than planned. We have our paperwork all done and the medication is already at the hospital for the next 10 weeks. Thank you for your prayers for everything! They are being answered.

Love, Tracy

PS Have you seen in the news about the Dust Cloud heading to Florida? This is a different kind of weather report for us. As long as it doesn't get too bad, it should just make for some very cool pictures around sunrise and sunset. I will have to try to capture a few.


*****************

July 23, 2005 10:52 AM

This is a prayer request for Julie. Julie was diagnosed with Chronic Myelogenous Leukemia (CML) in late November of 2004 and had a bone marrow transplant on May 10, 2005 with a 9/10 stem cell match. She has been having a very difficult time and now, things are really not going in the right direction. The GVHD is taking over from what I understand it is in her liver and gut. She is jaundice and having constant diarrhea. She has a 10hance of recovering form this; however they are giving her a new drug Ontak (sp), it is not approved by the FDA and with the drug she has 15The drug has all of its own side effects that are making it very dangerous for her, like septic shock. She is still fighting and fighting hard. Her kids found out yesterday, Avery is 10 and Jonah is 6. It is awful. She is so sick. Please pray for her and leave her some words of encouragment in her guestbook.

I also want to ask for your prayers for Tatiana. She has her MRI on Monday and Katia starts her new treatment on Monday. Again, it will be a busy day but at least we are moving ahead with both girls. Sharayah is healthy:) She is very proud she is the only one around here without a calendar full of appointments. Who said "Summer" means "Summer Break"? Also, we could use some prayers for finances. Thank you so much for your prayers.

Katia is doing well today. She is quite tempermental but she is eating well and her stools seem to be back to normal:)


Love, Tracy

PS The Book Orders are going out just a few days after order placement:)









July 22, 2005 3:20 PM

First, I would like to ask you to pray for Frannie, (nc/frannie) as she is having some serious problems right now. Also, for Jerry as he began his radiation treatments today. He is scheduled for transplant now on the 28th as everything was delayed one hour. He is in Seatle and it will be done in the morning. He and his family could really use your prayers. We dropped by their house, here in Tampa, last night and the triplets (now 7) are quite nervous for their daddy. Carol, Jerry's wife, flew out to be with him in Seatle right now. Carol is planning to start a CB site for Jerry so I will keep you posted.

I also fixed the link below to the "Ladybug and the Dragon" (Katia's Story) Book special. This is a special of 2 for $10 so it is quite a good way of being able to get one for yourself and have another one to give or loan. From what I understand by second orders is some loaned books aren't being returned:)

Katia is doing okay today, just has a bad rash going on and is never feeling full so she is always wanting to eat. That sounds like it would be great so she could gain weight but although she weighs just a little bit, she is also on 3 feet tall. Right now, she is quite blown up looking and over-eating causes her sugar and other levels to raise due to other medications. It is hard to explain that to her so we have made deals. Example: Two servings of veggies=1 snack:) There are quite a few deals but that is the best one. At this time, she is 17.2 kg which can get up to 13.8 by the end of the day. (17.2kg = 37.84 pounds and 17.8kg = 39.16) Not too long ago, she weighed 26 pounds so she is filling "out" quite a bit but not "up". That is okay though as long as she is healthy. She is quite cute:) I will have to get some new pictures up hopefully over the weekend.

So, I hope some more of you will PREVIEW the book and then order yours. Katia and I package them up and send them on their way:)

Under two weeks till school starts here. Katia is registered as a Kindergarten student but she will be in their Homebound program. She is a kindergarten student though and she is happy:)

Love, Tracy








July 21, 2005 1:00 PM

Things are good here today:) Katia is EATING and PLAYING and, for a 5 year old, that is all that matters:)

I have gotten a few emails and suggestions about the "Ladybug and the Dragon" Books about offering them at a lesser price. I think that is a fantastic idea as I really want to get Katia's story out there with as many people as possible.




If you don't have the book, you can PREVIEW it here.

So, on the LadybugKatia.com site there is a a special offer called "Share it with a Friend". It is explained better over there how this will work. I really am happy to mail these books out as they are a great, quality book with a very heartfelt story in them. They are easy reading for young people and enjoyable and educational for everyone. It also urges people to register as a marrow donor so it is for a great cause.

Please remember Jerry's and Stephanie's upcoming transplant and also keep James Henry in your prayers as his tumors are back and the news is not good on his outlook. Also, I ask you to pray for Joseph D as his recent test are showing many "abnormal cells". This is very concerning.

Thank you so much for all of your prayers.

Love, Tracy








July 20, 2005 6:00 PM

Well, I didn't want to update until I heard back about the spinal (if you don't understand that part, you can read in journal history August 26, 2003).

Guess what?

ALL IS CLEAR!!! No leukemia cells found in spinal or marrow:) I love those words. I can say that brings me such great joy!!

As far as her colonoscopy, everything looked good. They sent off some biopsies but there are no blockages or anything, or tumors. We aren't sure what is causing her pains but we do know it isn't leukemia or cancer:)

So, all in all, we had a great day!!!

Katia has been eating ever since she woke up, literally! Her first things were those cheerios (picture in the photo album) and then mac and cheese at home, biscuits, etc. She is drinking good and running around playing right now. We do know that her whole digestive track was completely cleaned out today so she has very clean pipes (well she did have). I told Myron she would fill them back up, completely, by the end of today. She is about to get spaghetti:)

She has also been given the okay to have apples again:) That is going to be super! She got that okay on Monday and then she was quickly put on the "all clear diet" so she didn't get that apple but she wants it tomorrow morning she says. She also has some fruit cups she wants to eat and some bananas.

As planned right now, we start the new treatment on Monday, the Pentostatin. I am looking forward to getting her moving forward with that because, as you can see in the picture at the top of the page, the GVHD is worsening and she is just a mess with it.

So, thank you and thank you again for your prayers today!! Thank you for your prayers always! We love you guys and we are happy to share these news with you:)


Love, Tracy



***********

July 19, 2005 9:00 PM

Well two things.

One, Tatiana's appointment for tomorrow was cancelled due to lack of communication with her primary doctor. So, they say it will probably be scheduled for early next week.

That may be a good thing as tomorrow was really a very full day.

Two, Katia has been on mineral oil and clears only all day. I thought she would never use the bathroom (we want her to get her insides all clean for tomorrow). Well, now things are "running" smoothly along and her insides should be sparkly clean for tomorrow's pictures. Although she is hungry, she doesn't say much about it. We did have a "talk" about all the things she wants to eat tomorrow.

I gotta go... Katia is calling;)

Love, Tracy






July 19, 2005 12:38 PM

Well, now it is 20 minutes after I started this update... 1:00 PM. I just wanted to go read in journal history and see when Katia's last colonoscopy was done. Can you believe it was July 21, 2004. Now it is a year later. Then I went back to the summer of 2003, before her relapse and she was having the same kind of problems right before relapse. I guess July and August are just the months for problems. Also, Tatiana was going through testing at ACH this time last year due to urinary problems. I used to always do my mammograms each July but I have learned my lessen on adding to our summer stresses and this year, it will be done in October:)

One good thing is we don't have to do the 3 scheduled enemas for Katia. They really don't like the transplant kids doing that as it can cause added problems so we just have to do a lot of mineral oil and the clear diet for today. Katia says she just wants tomorrow to get here so she can eat her food. Right now she is coloring. I think she is handling this reasonably well though:)

Please keep Jerry Gomez in your prayers as he prepares for his upcoming bone marrow transplant on July 27th.

Also, keep Stephanie H. in your prayers as she prepares for her bone marrow transplant. She is scheduled right around July 27th also.

Katia just realized today how many food commercials play on TV. Poor thing. She was watching Baby Looney Tunes today and the first part was about them eating lunch all together. You know what they were eating? Macaroni and Cheese! I thought Katia was going to scream. Instead, she picked up the brown shirt and left the room. That trusty Brown Shirt gets her through a lot of problems. Of course, it is going with us in the morning to the hospital. We have to be there at 6AM. Early morning but hopefully we will be out in time for lunch or a late lunch at least:)

Well, I better close this out. Thank you so much for all your prayers. Also, thank you for your prayer request to your friends and family. So many of you have checked on Katia long enough to know how prayers help so much. Not just with Katia but also the stresses of upcoming tests and results.

Love, Tracy







July 18, 2005 5:30
Second update today, earlier one below.

The plan is for Katia to have everything done on Wednesday, 7:30 AM, which means clear diet starting NOW...

She is asleep right now but she isn't going to be too happy hearing about the clear diet. Mind you, she is on steroids. So, tomorrow is going to be an interesting day with her on jello, soup, juice, etc. Oh, also she gets to have two more things. Laxatives and enemas. So, all of us will be happier when Wednesday is over.

Also, Tatiana gets her MRI done on Wednesday afternoon. I am glad they are getting it done but it just happened to land on the same day as Katia's procedures. We will be VERY happy come Wednesday night:)

Hopefully everything for both girls comes back in the clear.

Tatiana has been doing Yoga and back stretches to try to help her back and she is going to be going to PT once a week for now until she can learn the movements to do on her own. She also will see a Neurologist in September at Shriners for another appointment.

Thank you for all of your prayers. Pray for good things on Wednesday and a happy Katia through tonight, Tuesday and Wednesday. As I said in the previous update, we are all happy when Katia is happy:)

Love, Tracy






July 18, 2005 2:46 PM

WBC 4.1
HGB 12.5
PLT 199 (Dropped from 279)
ANC 1700


Clinic went well this morning:)

I am waiting to hear back about the appointment times for the upcoming colonoscopy, bone marrow aspirate, spinal check, etc). We are hoping to get everything done Wednesday morning. As you can see, the above numbers are getting back to "Katia's normals" but her platelets dropped quite a bit since last time. It makes me even more eager to see how the spinal and bone marrow look. I hate to worry and I really try hard not to worry. For the most part, we have grown very "used to" (I can't think of better words) things not being "normal" and "on edge" but even that sometimes causes concern.

HOWEVER, Katia looks good and feels good today:)

As I type, she is singing on Myron's keyboard with Tatiana. I love hearing them play together. If Katia doesn't feel good, she is just clung to me and doesn't want to have fun. We all like to see her enjoy herself and hear her giggle (the big belly giggle!)

Her rash is clearing up some. We started her back on the steroid creams and it seems to be clearing some of it up on her face and back. Her mouth has worsened some since last clinic visit but hopefully this new treatment will help get things in line. Our hope and plans are to start that this coming Monday. We just need to get blood labs, stool labs and biopsies out of the way so we have all of her starting numbers so we can see what we are starting with.

I will leave you with this...

Katia sends a big hello and a hug and to let you know she is dancing:)

Love, Tracy



****************

July 17, 2005 12:18 PM

Katia woke up with the rash still on her face. It doesn't seem as red though but there are more bumps. It just has me a bit concerned as to why her GVHD seems to be flaring up on her face and back although she is on quite a bit of steroids right now. She normally responds so well and clears up with steroids. So, I just ask you pray the GVHD doesn't worsen and we can start on the new treatment. I am really hoping this new treatment will do the trick for Katia.

I am looking forward to tomorrow's clinic visit just to get an idea on Katia's labs and stools. We are going to try to schedule a colonoscopy maybe for the end of this week or early next week and probably go ahead and do a bone marrow aspirate and lumbar puncture just to check things and get labs and biopsies before starting this upcoming treatment. I always feel MUCH better after I know Katia's marrow and spinal are clear.

Thank you so much for all of your prayers:) They do mean so very much and they really do help.

Myron and the girls did have a very good time at the Destiny Child Concert last night. I am glad the girls were able to get out and do that. Summer is almost done here since school starts on the 4th of August. The girls are very much looking forward to school:)

Well, I better run. I just wanted to go ahead and update to kind of answer a lot of the emails. Again, thank you for your prayers and concerns.

Love, Tracy






July 16, 2005 4:30 PM (Thanks for the hugs)

Good day:)

Katia isn't have too good of a day today. She woke up with a rash (See Photo) on most of her face and red splotches? Not sure but it is probably GVHD related. She also has rashes on her back and a little bit on her arms. It is bothering her and she doesn't like that her face has stuff on it.

She is sleeping right now as I type. We go to clinic on Monday so hopefully we will get some answers then and her counts will be okay on her bloodwork.

Sharayah and Tatiana are getting quite a treat tonight. Yesterday, we got a call from someone at the Ronald McDonald House asking if the kids would like to go to a Destiny Child Concert:) Of course! So, Myron is taking them tonight in just an hour or so. I am sure this will be a summer highlight for them!! Also today is "Harry Potter Release Day" so you can also imagine the buzz when the book came in the mail. I think the mailman is everyone's best friend today!! He saw the girls at the front window watching for him:)

Well, thank you for your prayers and please pray Katia's counts look good and we can get her started on the Pentostatin. I worry the GVHD is getting a chance to get ahead of us and we don't want that to happen.


Love, Tracy







July 15, 2005 6:50

What is that phrase I keep saying? Oh, "Better late than never".

I had a very long update ready but I couldn't get it to upload and we were having a big electrical storm. So... I am doing this again:)

Today started out with taking Tatiana to Shriners Hospital for her first visit. Good news and surprising news is she does not have scoliosis. Although her school sent her home saying she did, her pediatrician agreed and an orthopedic doctor did x-rays and agreed, she does not show any signs of scoliosis. Could she have outgrown it? Not sure but the fact is, it isn't there. So why is she having so many problems and so much pain? Well that is a very good question. They did a good exam and watched her walk and bent her this way and that way. They do see what we are talking about and what would be CAUSING her pain. She is just "off". Her walk is off, her posture is off and her reflexes are very hyper on one side. Why? Well, no answer there yet. She is going to have an upcoming MRI and an appointment with a neurologist there. The MRI should take place in the next few weeks and the Neuro appointment is for September 8. This seems like a long way off but hopefully this bring answers. Tatiana has been in pain for quite some time, over a year or so and there have been no answers other than the idea of scoliosisf. So although it seems like we are back at square #1, this square looks better and has more hope. If you go to Heidi's Page right now, you can see how she is feeling better right now just because she found a doctor who seems to care and want to find the problem with her. We feel the same way right now. I am sure many of us go through this. Tatiana and I both have just seemed to run into road blocks with a lot of the same issues. I just want to see her out of pain.

I try to keep this page about Katia for the most part but at the same time, our family. In many senses, we are all one unit (as a family). None of us like to see the other one struggle. Lately it has just been non-stop in so many ways. Katia has her ongoing issues with GVHD, "tushy" pain, steroid concerns, etc. Tatiana has just been going through back and body pain for a very long time and so have I. Am I feeling sorry for us? Well, kind of I guess. But for the most part, I look at it this way. Everyone has their problems. Some are physical, some emotional, some financial, some are a mixture of many different things. I think a lot of what we go through has given us more understanding and compassion and a definite eagerness to help others find solutions. That is what I like about the Caringbridge Community. So many people share their lives and, if it is used in the right way, we can all work together to help others find solutions. That is what I think CARING-BRIDGE is all about, a BRIDGE TO CARING for others.

I visit a lot of sites (although I am so bad about not signing the guestbooks right now-I am SO sorry) and I see so many others going through adverse times. I also see people handle these situations with such grace and appreciation for the "good days". Through keeping up this site for Katia, I have run into so many people that have no family listed on Caringbridge but yet they find themselves here, following journals, signing guestbooks, sending cards and just trying to be a part of making someone's day better (and they really do make better days for a lot of people).

Okay, why am I saying all of this? Well, for one, I babble:) I guess you know that by now. Secondly, I know that at the end of the day, I can share with you. I know Katia has a lot of people out there praying for her. I know that Tatiana has a lot of people out there that care about her. I know that so many of you care about and pray for our family. God bless you:) Thank you.

As I am sharing our lives with you, you are sharing yourself with us. So many of you, I feel closer to you than a neighbor because I have just heard from you via the guestbook, emails, cards, etc. for so long that I know you better than most of my family. So many of you check on Katia each and every day. You give her hugs, leave messages, send cards and PRAY. You not only pray for Katia but also the others listed in the Prayer Request section (currently still on the www.ladybugkatia.com site until I get busy and get it back over here.

My typing has actually bored Katia to sleep so I should sum this up:)

How is Katia today? Well, she is still about the same which leads us (her doctors and I) to believe it may be time to do a colonoscopy and find out more about her "tushy" pain. We need to make sure there isn't something going on there we aren't seeing. She is very very puffy today. She is up in her weight quite a bit. Her head just blends in with her body right now because she is so puffy. BUT, she is quite happy and playful right now. Her favorite thing to do is suck in her belly and have a big chest and then let her belly back out!!! She really cracks up over that as do I. It is quite a sight. I love to hear her laugh. Also, as I shared with her doctors, she is quite "gassy". This is more so when she is laughing so therefore, she laughs, passes gas and then laughs more because of that, passing more gas and it just goes on and on:) Simple humor but that is life:)

Love, Tracy



***************

July 14, 2005 10:00 AM

I am working on the Prayer Request area so for now, you can go to www.ladybugkatia.com until I get them back on Katia's CB site:)

Love, Tracy




July 13, 2005 11:50 AM

NEW PHOTOS:)

I just wanted to get on here and put up some new pictures. Katia isn't in front of the camera too much but I did get a few pictures over the last few days. The one at the top was taken just moments before updating so that is "hot off the press" as you can say.

I am about to go do a "Jerry Update" regarding his upcoming schedule and transplant. Please keep his family in your prayers.

As you can see, Katia is quite puffy due to the steroids. Luckily she isn't on the amount she has previously been on.

You see that smile? I LOVE THAT SMILE!!! Thank you for the 26,800 HUGS to date:) That is a lot of love!!

Love, Tracy






July 12, 2005 8:33 PM

Okay, I know this is late:) Sorry. Today was a busy day around the house. It seems to be that way lately and with Tatiana starting up with Shriners this coming Friday, I see it will just get more and more busy. BUT, I will always find time to update:)

Please pray for 2 people (they follow Katia and have for a long time). One is our friend, Dale. He just learned he has colon cancer. He will soon begin treatment. Secondly, a friend of ours, Barb lost her son (25 years old). They are still waiting to hear what his cause of death was. This is so sad. One thing I have come to realize since becoming part of the Caringbridge Community is how others care so much. These families both check on Katia, sign the guestbook, etc. They have cared so much for Katia and our family as have so many of you. If you could please remember these two families in your prayers.

Katia has had an okay day. She is not happy with her tushy. That is about all I can say about that. Her stools still seem to be improving though so that is good. I think she will feel much better when she doesn't have to use the bathroom so much during the night and day. That tushy needs a rest:)

Thank you for your prayers. Katia says prayers during the day for her tushy and she ask me to pray for her tushy so I guess that is what I ask of you:)

Love, Tracy

PS Also, please pray all infections are clear at the next appointment and we can begin the treatments for GVHD.

PSS I will try to change out pics tomorrow:)








July 11, 2005 11:30 AM

Today is sunny, Florida day again:) All is passed through Tampa and there was no damage done on our side. I have been watching the news and see the damage done by Hurricane Dennis. There will be alot of rebuilding needing to be done where Dennis took his path. Hurricanes can do so much damage in such a little amount of time. All you can do is prepare and get yourself to a safe place.

All we had was a lot of wind and rain but nothing like last year's hurricanes that came through our area. Of course, we are only at the beginning of the Hurricane Season but we are grateful for this to have passed. My dad flew out, on time, and is safely back home.

Katia is doing okay. Same concerns and pains but her stools seem to be "not so watery" which hopefully means the infection has cleared. I would really like to be able to move ahead with the GVHD treatment.

Our "plans" are to go to clinic next Monday and hope all is well to start treatment. This week, we are planning to pass on clinic and only take in some stool samples to lab. As long as she is feeling better, I am happy:)

Please pray for Angel Addie's family (ne/addiemarie) as she passed away on Friday.

Thank you for all of your prayers concerning the hurricane and Katia. Have a good Monday:)

Love, Tracy







July 9, 2005 3:55 PM

Well, we have had quite a bit of wind and rain today but so far so good:)

I want to ask for your prayers.






Hannah Bannana
fl/hannahbannana



On March 12, 2004, Hannah was diagnosed with Neuroblastoma, stage IV (meaning the cancer had spread throughout her body). On July 7th, it was learned that she has relapsed. Please pray for Hannah and her family as they plan the next move.

Thank you:)

It is so hard to hear of someone relapsing. One, because we have been there with Katia and I know how our heart just sank when we heard that. Secondly, it is always a fear. We try to not live that way, worrying all the time. When a lab is off or Katia seems "different", we can't help but to worry. I think what worries me the most is that Katia's labs were perfect when she relapsed. Everything was in the "normal" ranges. BUT, I really do try to just live day to day and keep Katia happy and our family going on and trying to reach out to others. It really helps to feel like we are doing something to spread the word of how others can help.

I do feel bad that I can't check on as many other families that I used to or sign as many guestbooks. Please always know that you are in my thoughts. I have many names in my mind and each time I think of them, there is a picture of a face that goes with that name. So many have become Angels but then others are off treatment and doing well. Others have relapsed and begun treatments again.

So many people that check on Katia did not learn of her page due to themselves, their child or even a friend having cancer. Their heart just led them here or they heard about another child that led them to Katia. I appreciate you so much. There are so many hearts of gold out there and I get to see so much of that right here and in the guestbook. Katia has gotten so many HUGS through that hug counter above the journals and I just think, "WOW", so many people care so much. THANK YOU:)

Well, I have babbled on and on so I will bring this to a close. Please keep Katia in your prayers, keep the hugs coming and the guestbook messages. They really mean so much and give so much needed strength.

Much love,

Tracy



*****************

July 8, 2005 8:20 PM

Better late than never I guess:)

First, I would like to ask you to pray for Queen Maddy as she has been taken to PICU due to what seems to be bleeding in her lungs. She could really use prayers and a miracle right now.

Katia has been doing well today. She still is having quite a bit of pain but it hasn't become worse and she seems to be handling it pretty well. She is a tough little cookie:)

Her IGG number came in and shows improvement. This number bounces up and down due to the amount of immunosuppressant drugs she is on. If the number gets too low (under about 500), then she gets the transfusion of IVIG to bring it up (the 5 hour transfusion). So, for now it looks good. We check it each week. Also it seems we finally brought her FK506 level back up to a good level. It was low so we have been increasing that medicine and it seems to be at a right level. FK506 is one of her anti-rejection meds.

Enough on the medical news right now. As I type, Katia is eating Cheerios. She could make a commercial for them right now! She eats them all day. It is a good snack though so we are okay with her eating them.

My dad is "planning" to leave here on Sunday, depending on Hurricane Dennis. I think this Hurricane is going to leave Tampa alone. We will see Tropical Storm winds and rain but it APPEARS to be staying off our shore. I have a feeling we will be doing a lot of Hurricane preps throughout this season though.

I have a few things to research so I better cut this short. There isn't a lot of sleeping going on in this house with Katia having so many runny stools. She keeps us going all night. Although she is potty trained, she has quite a few accidents since she can't control this. I really pray this will soon pass as she is really getting tired of feeling bad and not being able to really be up and about through the house. She has a lot of pain when she walks too much or stands for long. I really pray this clears. Thank you for all of your prayers:)

Love, Tracy






July 7, 2005 1:20 PM
WBC 8.3
HGB 12.9
PLT 279
ANC 4200
IGG 775


As you can see, we are back from clinic:) All went well. Some of the numbers are getting more back where they should be with what medications she is taking. I haven't heard back on everything yet but should later today on the rest of her regular labs.

In the middle of the night, Katia's stools turned to pure watery stools. This was unexpected as it seemed she was improving. We sent off another specimen to have it checked for improvement or to see if the infection is worsening. There is some concern this could be GVHD but she is already on treatment for that basically if it is. I still believe this runny stool is being caused by infection AND by the medicines she is on to actually clear up the infection. By the WBC count, it appears to me, there is still infection with something. Katia's normal WBC range is around the 4's.

Hopefully things can clear up and Katia can begin the new Study Treatment of the Pentostatin. It is still very unclear how she would have gotten the current stool infection she has but the main thing is to get it cleared up.

Katia is keeping all of us quite busy around here due to her steroids. Either she is hungry, upset or hungry again:) I think we have all grown quiet familiar with all of this though. At the same time, she gets very loving and is so thankful for us taking care of her. She definitely knows how to say thank you and that she loves you.

I will add to the labs later today with the IGG count.

Thank you so much for your prayers:)


Love, Tracy






July 6, 2005 12:12 PM

I have two people that I would like to ask you to pray for and to visit their guestbook. They are both listed above in the prayer requests, one is new.

Addie Marie was diagnosed with Glioblastoma in 9/04. She has since lost her sight and now it appears there is nothing more the doctors can do to fight her cancer. Her family is praying for a miracle.

Chris, has been listed in the prayer request for quite sometime as she has been fighting stomach cancer. She has been having a lot of pain and treatments and I think she could really use some encouragment via her guestbook. I received and email that she really loves hearing from others:)

Katia is sitting here watching TV while I type. She has become quite puffy from the steroids again and her tushy is not so good. Therefore, she is not up and about, voluntarily, too much. She goes back to clinic tomorrow and we will re-test her stools to see if the new infection, Aeromonas hydrophila is improving with the Omnicef. Also, I am eager to see if her counts have fixed themselves somewhat, especially the WBC and the LYMPH count. With her treatments, her LYMPH count should be going down not up? So, please pray that goes well.

It appears Florida will be having its first Hurricane visitor this coming weekend. We are watching it. Katia of course is looking forward to using her flashlights. We however see things differently. We have gotten so much rain recently, flooding is a concern as well as the other damage that happens from all the winds. We will see what happens. My dad is due to leave on Sunday via airplane so that may change depending on weather changes.

I appreciate your thoughts and prayers for Sharayah and Tatiana as well. Tatiana is eager to get to Shriners and be "fixed". I am eager to get her feeling better. Sharayah is strong and healthy. They are both eager for school to start again. They really like school. Katia will be enrolled this year in Kindergarten. She will either do homeschooling or be tutored though. I haven't decided yet how I want to handle that. I have homeschooled Sharayah and Tatiana in the past. They were actually being homeschooled when Katia was diagnosed back in April 2002. I like homeschooling but I just want to make sure that I can put the amount of time into that I need to. Katia wants me to be her teacher:)

Well, the girls and grandpa are gone right now, Myron is at work and Katia wants her one on one time with me:) She has gotten very used to having me all to herself due to all her time in the hospital and RMH. This time last year we were eagerly praying to come home. July 27th will be one year since that big homecoming day!!

Thanks for your prayers:)


Love, Tracy







July 5, 2005 6:10 PM

Hello:) Did you see the news above? Thanks for your votes.

I am sorry I am updating so late today (I say that a lot don't I?)

Katia hasn't been feeling too well. She is having a lot of "tushy" pain and bowel movements throughout the day and night. It seems she has another infection, Aeromonas hydrophila in her stool now so she started on a new medication for that this morning. She was put on Omnicef and hopefully by Thursday (when we go to clinic) a new stool sample will show the medicine is working.

Katia is sitting here as I type and she says she is upset that her "butt" hurts. She gets to use the real word:)

Not much else is going on. I went to the doctor today so the day got dragged out and I feel like I am behind.

Again, I want to thank you for keeping up with Katia and our family. Thank you for all of your prayers. You know, through everything, we always feel we are not alone.

Love, Tracy








July 4, 2005 1:00 PM


Happy Independence Day:)

We are just happy to be home this year for Independence Day. Last year, we were at RMH and we took Katia out to see the Fireworks closeby at the St. Pete Pier.

Please pray for our friend, Mark D. as his family recieved news that aren't good.

Also, please keep Heidi in your prayers. Her condition continues to worsen.



Love, The Solomon Family


****************

July 3, 2005 12:53 AM

Yes, it is in the middle of the night:)

I didn't want to not update so here I am. All is okay here, about the same. Katia is getting quite puffy, it seems overnite, from the steroids again and she is QUITE THE HANDFUL as you may guess. Always hungry, easy to upset, easier to get angry and doesn't get the word "NO" at all. We are all used to this due to quite a bit of past experience so we deal with her. The motto here is (to all of us) "Grin and deal with it."

Of course she is gaining weight and her blood pressure is rising but all in all, I think she is doing okay. She had a few days of "the runs" but that seems to be getting a bit better. She still has urgent trips to the bathroom every half hour at least but they are becoming better I think.

Myron's parents leave tomorrow to we have been quite busy getting some stuff together, writing letters, getting pictures ect. for family back home. My dad leaves next Sunday. It is going to really seem quiet around here. We have had a nice time with all of them here. I think Myron's mom has caused me to gain a few extra pounds though but they were very well worth it:)

Quite a few people have asked how Tatiana's back is doing. We really haven't had much to update other than it was getting worse, especially with her recent growth spurt. She is going to start to Shriners here in Tampa on the 15th and she is very much looking forward to seeing what they can do to help her. I am eager to find out the cause behind all of this but it has been quite a bit worse these last few months. Some days are very bad. Please pray for her as she really isn't the "doctor going" type of person that Katia is turning out to be. Tatiana is however wanting to feel better. She is Katia's main little playmate so Katia feels bad when Tatiana feels bad. She always know when Tatiana's back hurts by the way she is playing. Katia is very in tuned with how others feel and she hates anyone to feel sad or sick.

Well, it is late. Although I am a night-owl, my eyes aren't and they have basically said good night ahead of me. So excuse any typos or things that don't make sense:)

Please keep all of our friends in your prayers.

Love, Tracy


PS Thank you for all the comments on "Questions". We have read a lot of the comments to Myron's parents. I was glad to get it playing on the www.ladybugkatia.com page. Also, any orders for books and CDs that have recently come in are going out soon:)

I will try to update the pictures tomorrow:)







July 1, 2005 12:57

Katie B. passed away yesterday morning at 7AM. Katie had been fighting leukemia AML. She received platelets which ended up being infected. Katie's body couldn't fight the infection. Please pray for her family.

I will update more later. I just found this out and I know so many of you have followed her journey.

Love, Tracy







June 30, 2005 2:54 PM


Can you believe tomorrow begins July!!! Wow, this year is flying by in so many ways.

I always try to think positive but today I was thinking, July was that month I had picked that I just knew Katia would be free as a bird, going places, swimming, no broviac, etc. Well we aren't there yet but I also know that we are very lucky to have Katia where she is, with us and home. We have almost been home for one year other than a few short hospital stays. We came home July 27, 2004 to a big big homecoming celebration and that day will live in our minds forever and ever. We are so grateful for all of the people that have touched our lives and have shared in our love and concern for Katia. We have been going through this for a little over 3 years now and although this would have been thought of to be a very negative experience, we have had many positives during this last 3 years. I would have never thought that but then God provides people like you that are so uplifting.

I received an email from one of Katia's fans today. That is how she signed her email. Anyway, to sum it up, she said she has followed Katia for the last 2 years almost. She bought Katia's "Ladybug and the Dragon" (Katia's Story) books about 2 months ago. She read the book totally through that night. Since then, she has passed it to her family members (some via the mail) and they have each passed this book around. I thought that was so sweet!! Since reading the book, she registered as a marrow donor and one of her nieces has registered to donate her upcoming baby's umbilical cord. Note: If you are interested in learning more about doing this yourself or passing the information onto others, you can find out how HERE. The page is full of information along with a number to donate your baby's umbilical cord even if there isn't a cord storage facility in your area. This can be done FREE OF CHARGE. 1-800-869-8608. I have that number stored in my cell phone in case someone ask me while I am out.

Thank you so much for all of your comments on the "Questions" Song posted on the www.ladybugkatia.com site. We LOVE to hear your comments.

Again, thank you so much for your care and prayers!! They are so helpful especially during these recent stressful times and the upcoming new treatment plans.

Love, Tracy








June 29, 2005 11:30 AM
Listen to "Questions"


We love to hear your comments:)



Good morning:)

Sorry about the lack of update yesterday. As you can see from the pictures, we went to the park:) We had a very nice, very quick trip. We just beat the rain. Florida's weather is getting more tropical each day.

Katia is doing okay. She still feels bad quite a bit of the time but she can be amused and made happy. She really enjoyed the park. On the way there, she said she just wanted to go back home and sleep but once we got there, she lit up!!! She had a really good time and got to get outdoors for a bit:)

We had a little picnic, hike and pictures and home.

Well, I am working on adding the "Questions" Song to the www.ladybugkatia.com site so keep an "ear" out for it when you sign on there. It may take me a bit due to interuptions:)

Katia sends a big hello. She says to let you know she got a babydoll yesterday with a bottle that the milk goes away when you tip it upside down. She is very amused by that doll:)



Love, Tracy


*****************

June 27, 2005 1:52 PM
WBC 9.4? (not sure why it is up again)
HGB 11.7
PLT 293
ANC 2900

Today's visit went well, for the most part. I am a bit concerned by a few elevated numbers. One, being the WBC back up again. Although this is not out of the normal range (4.1-12.0), it high for Katia and usually shows a problem or an upcoming problem? I am not going to read too far into this though.

The other count I am concerned about is one I keep up with but I don't post. The Lymphocyte count. Katia usually stays between 1.7-2.4 It has gotten up to 4.0 in the past but today it was 6.1. I don't know. A little red flag went up in me but this could be explained by changing her medicines around, the fact she has been sick, the GVHD and other ideas. I just don't like when things get out of "Katia's normals". I am used to things going up and down but they stay within a range I am used to.

The other thing that concerns me is her WBC is up there but her ANC isn't. Sounds like a lot but it could just all be something small. This is just the way my mind works. So pray it is something very simple and that she is still headed toward this new treatment for the GVHD maybe later next week.

We don't go to clinic on Monday due to the July 4th holidays. Well, I think I have rambled on far more than enough. You know me, I am going to do some research:)


Also, I would like to mention a special family on here and something they are trying to do. Angel Katja's family has registered for a yard makeover in their local community. You can vote to help them when by visiting the Voting Website You would go to CLICK HERE to vote and then they are the 4th yard down. If you look closely at the picture, you will see Angel Katja's Memorial Bench. They are hoping by telling her story on the show (if they win), it will raise needed awareness. We followed Katja's journey for quite sometime and this family is quite special to us as you can imagine. Angel Katja's picture is on the front of the "Questions" CD with the words, "Gone too soon..." Thanks for going by and voting for their yard:)

Love, Tracy






June 25, 2005 7:00 PM

Well, I guess I spoke too soon. Katia has needed medicine twice due to pain and she just doesn't feel well. She has had some runny stools also.

I called her doctor and this may be caused by the Augmentin so we may change it tomorrow if this persist. Katia isn't happy. We had planned on trying to go to a park but for now, we have to lay low. We will see how she feels tomorrow.

She has not moved from the sofa except to go to another chair or something. I think she is pretty well down for the night. She is drinking well and eating okay so that is good. She just looks drained and bored really.

Thank you for your prayers:)

Love, Tracy


PS Thanks for your prayers for Bailee (fl/bailee). It seems she is doing much much better:)







June 25, 2005 1:45 PM

Please keep Carter F. and his family in your prayers. It seems his cancer is once again progressing and he will be starting over with chemo treatments.

Other than being cranky, Katia's day is going better today. Although she has some pain, she isn't needing pain medicine yet today so that is an improvement. She is very touchy but we will blame that on the oral steroids. All she wants to eat is Macaroni and Cheese. Not just any Mac & Cheese but the little toddler Bernstein Bears Macaroni and Cheese with the hotdogs. She likes that brand the best and it doesn't bother her mouth or lips. Whatever keeps her happy:)

Thank you so much for following, caring and praying for Katia and all of those in the prayer request and "Katia's Friends".

Love, Tracy









June 24, 2005 10:30 PM
Second update today

Jerry Update:






Myron Solomon (KSF), Carol Gomez (KSF), Jerry Gomez, Patricia Chaves (KSF), Scott Ulm (KSF), and Victor Penna (KSF)



Jerry left today for Seatle to prepare for his transplant. Please keep him in your prayers.

JERRY'S UPDATES


Love, Tracy





June 24, 2005 5:47 PM

Hello:)

Katia really hasn't been feeling well since last night with her eye. We just feel so bad for her as she seems to be just adding to her list of aches and pains. She really does try to be cheery though as much as possible. Her right eye (the one with the tumor behind it) has just been bothering her with sharp pains and the light is bothering it. This seems to come and go. The last few times we have had it checked, it looks to be fine. She had radiation to that eye and the tumor had shrunk but couldn't be removed. The tumor is wrapped around the optic nerve. Our worry is that the tumor regrow and cause too much pressure on the optic nerve, therefore her sight could be at jeopardy in that eye. I just ask you pray for her eye.

Her tushy has been bothering her more and more it seems too and she really doesn't like to take the pain medicine all the time. First, it taste bad and secondly, it makes her groggy. If it bothers her bad enough, she ask for medicine. Other than that, it is pretty much up to me. As a parent, I just hate to see her in pain but I also don't want her to miss out on these days. As long as the pain comes and goes, I let her be. She is spending most of her time though on the sofa with her brown shirt, pillow and blankies. I hope to see her up and about more, especially with her starting back on the oral steroids.

Thank you so much for the responses about the
"Ladybug and the Dragon Books (Katia's Story)and
the "Questions" CD

. We still have more available. Right now they are taking less than a week to get out:)

Sharayah and Tatiana have been staying quite busy with the grandparents. Soon the grandparents will all be heading back to their homes so we are enjoying our time with them while they are here.

Well, I better go. Katia pretty much wants me attached to her side 24 hours a day. When she is like that, I know she doesn't feel well. The worse she feels, the more clingy she gets, even if she doesn't tell me she feels bad.

Thank you SO MUCH for your prayers and Get Well cards:)

Love, Tracy



**************

June 23, 2005 6:20 PM
Second update today

I just wanted to come back and let you know there is a photo album of the Girl of the Year Photos to view. There is also the picture right above the Journal Entries from that evening:)

Love, Tracy






June 23, 2005 11:30 AM

Good morning:)

Ms. Katia is feeling better today. She is in a very happy mood today. It is nice to see that.

She did have her strep test come back positive for Group G Strep so she is taking an antibiotic for that. Her throat isn't bothering her as much but they just want to make sure that the infection is cleared up before we start the new treatment. She is also on Day 2 now of taking the oral steroids. I think all of this puts us heading in the right direction. You know how you just sometimes get the feeling you are on the right track? That is how I feel right now.

I always tell people I have faith in Katia's doctors and that is a true blessing. I couldn't imagine going through all of this without a trust in Katia's doctors. I appreciate that they let me be involved as much as I am and they always respect my questions and opinion.

Well, today we are catching up around here with some cleaning and linens and such so I better get back to doing my part in all of this. I love days of thorough house cleaning:)

Love, Tracy









June 22, 2005 8:31 PM
WBC 4.6 (Better)
HGB 11.3 (a bit low)
PLT 238
ANC 2100

Today's clinic visit went well. We did not do the IV steroids as they just aren't working so we are canceling out the last 2 doses. Today, she was started back on Oral Steroids to prepare her for the new treatment. We should see a change in the GVHD just with that but she has to have another treatment to keep it that way as she has proven, stop the steroids and the GVHD returns. She just can't stay on the oral steroids for long as it has a lot of bad side effects which she already experiences due to the long amount of time she has already been on them so much in the past. Our hope is to get things moving along and this new treatment, solve the problem for a long time!!!

Katia is happy and feeling better today from her cold. She made sure to announce that right off when we got to clinic. Last visit she had her nose swabbed, throat swabbed, a tushy check, etc. She didn't want any of that today so she was like, "I FEEL BETTER!" They were happy to hear that:) We are happy to see that. See how prayers work!!

I am looking forward to this new treatment. I know Katia will get her little puffy face back but hopefully her muscles will stay in good shape and her legs won't be too effected again. Prayers help and I have a good feeling God will get Katia through this with very few side effects:)

Well, it is late and I am sorry it took me so long to update today. Things have been busy around here.

Please continue to pray for Bailee, Heidi and all of the other families needing prayers. Also keep Kody and his family in your prayers. Thank you:)


Love, Tracy






June 21, 2005 12:58 PM

Good day:)

I would like to say Katia is feeling better but she isn't yet. She did eat dinner last night and breakfast this morning so that should help her build up and be stronger:)

I got her some lollipops yesterday that were SUPPOSED to taste good and make her throat feel better. She let me know right off they tasted like very bad medicine. I guess that would be a great invention if it really taste like candy. So, Grammie tried it and she agreed, they tasted very bad! So conventional medicines it is:)

Thank you so much for all of your prayers. They do help in more ways than you can imagine.

Also, a small note. I have sent out some emails but I also want to post it on here, two things.

First, the graphics in the guestbook are very nice and colorful and Katia and I both enjoy them. BUT, they are definitely slowing down the guestbooks. The smaller ones are fine but the larger ones need to be sized down. I can look at them and tell people really spend time on making them and personalizing them and they really are nice to see. I just know that dial-up users sometime have trouble and it really uses a lot of the server space for Caringbridge.

Another thing that I have been confronted with lately and I know probably others have is Paypal emails. If you use paypal, you probably get emails. To be on the safe side, if they are EVER asking you to update your account or billing information (E-bay too) don't ever do it from that email. Delete the email and go to your actual account by going through the Paypal, Ebay, or other account sites. Even if the email seems to have a link to the Paypal or other sites, it is a huge risk to your personal identity information. I usually just delete the email after just reading the subject line and go to the actual site. I figure I can go to my account information and find out if there is a problem or a need for an update. Just to be safe. I would hate to hear of any of you running into these types of problems so I always believe in passing the information. I have had problems with emails from Paypal, Ebay, Credit Card or even my paid websites. There are a lot of scams out there and they seem to find a way in to just about anything. The best thing you can do is only deal with the direct site links and never give information via emails. Hope that helps.

Well, Katia sends a sniffly hello. The ladybug will be feeling better soon. It appears we need to have her feeling better and no infections to start the new treatment so we are looking at maybe starting it in about 3 weeks or so. It does sound promising:)

Love, Tracy








June 20, 2005 7:00 PM
WBC 8.4
HGB 11.7
PLT 287
ANC 5300


We just got back from clinic! What a long day.

Katia really felt pretty bad today when we were headed to clinic and it just kept going downhill. She didn't want to talk or drink, her throat hurt. She had a runny nose, rash on her face and she just felt puny.

Her counts show something is going on, probably a viral infection of some sort so we swabbed her nose and throat (she hates that), took some blood tests for labs and had a chest x-ray done.

Then she was plugged in to the IVIG around 1:00 PM. She does seem to feel somewhat better tonight but she is quite whiney and pale. If she gets any more pale, I need to call. She always gets pale after the steroid doses but she didn't have that today? I know she just feels bad though. She has a cold and I hate that. She gets so miserable and they really can get her quite sick. So, just pray this cold passes and doesn't cause any big problems.

We go back Thursday for the steroid dose. They wanted the labs back first to see if anything grows from the nose, throat and blood before they do anything to lessen her counts.

Thank you so much for following Katia and for your prayers. I know I say that a lot but I don't feel I can say it enough.

I will be back tomorrow:) I am tired.

Love, Tracy




***************************

June 18, 2005 2:45 PM
This is an added prayer request. The update is below...

This is from Bailee's Page. They need your prayers.

Bailee is in intensive care right now, in stable condition, Her heart stopped beating in my arms right after a treatment for the Red Cell problem, and right now they are not sure what happened, the good thing is that she is stable. She had a good night, and is resting. She is in the best possible hands right now. Mike is here with me.

Please pray very hard for her recovery,

Robin


Please keep them in your prayers that they figure out the cause and this doesn't happen again.

Love, Tracy







June 18, 2005 1:18 PM

Hello today:)

This day, 19 years ago, I was on the island where I met Myron:) Boy how time flies!!

Thank you for your prayers for Katia. She really isn't feeling too well today. It is that mean little tushy of hers. She is mad at it right now. It just causes her so much pain and keeps her from being able to play. She did have Sitz Bath today. It really didn't seem to help. We have been mainly sponge bathing her as the water seems to be really irritating her skin and causing her to peel even more. But, I wanted to see if that would be helpful. It wasn't. But, she did have fun.

We have clinic on Monday so she will be there most of the day for the IVIG transfusion and we will talk about her new treatment for the GVHD. I really really hope we can get something going that will get this under control.

Also, I ask you keep Jerry and his family in your prayers. Recently they found his marrow match but right now they are having some problems with that. I am not going to go too much into it but just please pray and I will keep you posted. He has a site on the Katia Solomon Foundation site where we will regularly post updates as they come in. The Gomez Family appreciates your prayers and concern.

Well, I better finish up. Katia is hungry and she is pretty clingy right now since she hurts. Thank you so much for dropping by:)

Love, Tracy






June 17, 2005 2:30 PM

Hello:)

I would like to first ask you for your prayers. A new family that had been brought to our attention just lost their son yesterday. He had just gone through transplant. This comes as quite a shock as he was doing well. The Katia Solomon Foundation has been able to reach out to a few families as well as help fund Marrow/Blood Drives. We, of course, want to be able to do much more. There are a few families in need right now which we want to be able to help. As you can imagine, with the amount of recent drives we have been participating with and preparing for this upcoming Festival tomorrow, we need help. This foundation is a very important part of our lives which we spend quite a bit of our time with. We do not do this alone. We have a great group of people on our Board that spend a great deal of their time working drives, coming up with fundraising ideas, etc. They too have families and full time jobs.

I know that many of you share our same concerns. You have shown your love to Katia in so many ways!! I would like to say ********THANK YOU!!********* for all of your prayers, cards, letters, emails, guestbook entries and so many other participations.

If you could imagine the shock of losing a child, it is just unimaginable. At the same time, this recent family is from Columbia and would like to bury their son in Columbia. This is quite costly as you can imagine. If you would like to be a part of helping this family or other families through the foundation, please visit the Katia Solomon Foundation to learn more. While there, click on the links at the top of the page to see how we are involved and some of the other families we have been able to reach out to. Your help is greatly appreciated and so very needed. Thank you.

Katia is doing well as can be today. Her tushy is not feeling very good, quite bad actually. We are looking into a Research Study as Katia's next treatment for the GVHD. It is a Phase II Study of Pentostatin for the treatment of high-risk or refractory chronic GVHD in children.

We are still reading into it but I think we are going to go ahead with the study. Of course there are quite a few risk and side effects but, at the same time, GVHD that isn't controlled can cause many many concerns and health risks.

Please pray as we make this decision. We are going to sit down and talk with Katia's doctors about this. They do know of the study.

Katia is definitely enjoying all the spoiling that is going on with her grandparents being here. For one, Grammie will cook just about anything Katia asked for and, take my word, she is a GREAT cook:) This Father's Day will be the first, in a very long time, that Myron and I both will have our dads in town. We plan to make it a special day:)

Love, Tracy

PS Here is the recent News Release that was done to announce Jerry Gomez had found a match.Bay News 9 6/15/05 Jerry's Match









June 16, 2005 9:20 AM

After updating the prayer request yesterday, it seems Jacob's page (Jacob D. above) had an updated added with news that just isn't good. The following is a portion of this update...

"It is with a heavy heart and many tears that I tell you that Jacob's scan results were not good. Five new tumors were identified - the main one lying right behind his port against his artery. We are flying out tomorrow morning and should be at Sloan by noon. Jacob is scheduled for surgery first thing Friday morning. We are all going to NY and my mom and Donnie's mom are coming, too. We are so thankful that they are coming because we desperately need the support."

Please keep this family in your prayers as they face another huge surgery and as Jacob's cancer is proving to be so aggressive. I am sure Jacob and Family would love to hear from you as they could really use the encouragement and prayers.

I will be back later with a "Katia Update". Thank you for checking in. Ms. Katia is still sleeping...


Love, Tracy







June 15, 2005 11:22 AM PRAYER REQUEST UPDATED

Good morning:)

Things have been quite busy around here but I wanted to update and change out the front page picture with this one. She really liked the "Alex" mask from Madagascar. We are waiting for that to come out on DVD:)

The buzz around here right now with Sharayah and Tatiana is the upcoming "Harry Potter" release. It is amazing how kids (and adults) look so forward to those books.

Katia is doing okay. She had quite a day yesterday with mood swings and being hyper and then her blood sugar rose up in the afternoon. It got around 197 but that is due to the steroid doses she is receiving. This morning is was 110 when she woke up so I feel much better about that number. I do stay in touch with her doctors so everything is always monitored. That puts my mind at ease:)

Myron's parents are enjoying their stay and Katia is being quite the little charmer. I am glad, during this visit, she is up and around. She looks much better than she did the last time they saw her. She has definitely come a long long way.

I am very proud of her (I am not sure I have said that before-LOL) at how well she has handled herself with all that is going on. I am sure it is a lot for a 5 year old to deal with.

She does have to get the 5 hour IVIG transfusion this coming Monday as her numbers were too low to go without it. So with that and the rest of the visit, we are looking at about a 6 hour visit or more. I always plan for more so it is a nice surprise when we finish earlier:) Reverse psychology I guess.

As far as the next plan of action for the GVHD? Not sure yet.

Also, as far as the Books, CDs, and Bracelets, that have recently been ordered (through yesterday), they go out in today's mail. We are always very eager to hear comments back about the book and CD. We love reading the comments in the guestbook. I read some of them to Myron's mom last night too. Thank you for your messages:) They are always so uplifting but especially on days that aren't going so well or Katia doesn't fel good. I just know that a lot of people are not only following her journey but also love her and pray for her. As her Mommy, that means the world to me!

Hopefully Florida is sharing its sunshine with a lot of you by now and you are enjoying a sunny summer:)

Thanks for checking in.

Love, Tracy

PS Remember, those of you that are local, we have the Festival de la Sangre going on this Saturday. The information is on the Katia Solomon Foundation Site under "Current Events". Hope to see you out there:)



*************

June 13, 2005 3:10 PM

WBC 4.9
HGB 11.5
PLT 264
ANC 2000
IGG 443

Well, first I will let you know that Myron's parents are here safe and sound. Katia waited up till about 10:30 last night until they got in. She did take "a little rest" but she woke back up.

This morning started off with clinic and Katia not really feeling too good. I know she was tired but her "tushy" has been giving her a lot of pain, her mouth isn't doing well again and she has these painful sores on her fingers. I didn't know if they were GVHD (graft vs. host disease) related but they come in stages. They look like a blister under the skin first, then they get on top of the skin, seem to rupture and then peel and heal. They hurt during the first few stages. The doctor doesn't believe it is GVHD related. Also the areas on the front of her knees (and now her elbows) or the little area on the back of her leg, he doesn't feel is GVHD related or it would have responded to the ointment we were using.

Also, it seems the IV steroid treatment isn't getting the GVHD under control in her mouth or around her eyes so we are back at square one. There are a few more treatment options. Two are other drug infusions and another is photopherisis which is a blood treatment where they run her blood through a machine, treat it and then put it back in her. It would take about 4 days a week, 5 hours or so a treatment. How long that would last? Not sure.

I wasn't very happy to hear that but I knew it was coming. I can tell the treatment she is on now with the IV steroid and CellCept just isn't doing the trick. We have done 6 out of the planned 8 treatments of the IV steroid and she has been back on the CellCept for 2 months.

Right now, she is covered up and laying on the sofa. She is happy but sore. She just had some pain medicine which should get her up and going again for the rest of the evening hopefully.

I am not sure where her IGG level (immune system count) stands as I don't have those results back yet so I will probably come update when I know that or another idea for treatment. As for now, we just wait.

Well, I finally got some new pictures up here after quite a bit of procrastination (sp). I apologize for the wait but hopefully it won't be so long before the next change of pictures. I will include some with the grandparents:) I am sure once Katia is feeling a bit better, she will be very willing to get some pictures with everyone.

Thank you for all of your prayers. I haven't been able to visit pages so much lately as things have just been busy with CDs, books, packaging and this upcoming Festival with Florida Blood Services in St. Pete. There is more information on that at the Katia Solomon Foundation website. Hopefully some of you locals can make it out there.

Thank you so much for all of your interest and comments on Books and CDs. We really love reading them and Katia is glad people like her singing. I got to hear it on the way to clinic today as she was singing her songs and TV commercials. She always loves to sing along with Daddy on the CD also. It makes my heart so happy to hear her sing:)

Love, Tracy








June 12, 2005 5:42 PM

Hello:)

This is a note from Katia. I think my mommy really needs to get some new pics up on this page:) I am going to try really hard to get her to sit down tomorrow, after I go to my clinic, and put some new pictures up here. I may have to twist her arm!

My Grammie and PaPa are about to get here in a few hours so I am happy and waiting. My Grammie makes AWESOME pancakes and lots of other food. With a pouty lip like mine, I think I will keep her busy with some of my favorite treats of hers.

Well, I better get away from this computer before my mommy sees that I can type. Then I will be the busy one all day!

Love, Katia:)
LOL







June 11, 2005 12:12 PM

Good day:)

What a few rainy days we have had here. Another Hurricane Season is upon us again so we are preparing a little ahead of time this year. Yesterday I got lanterns and oil for the lanterns. Those were unfindable last year once things started. I felt good to at least get those out of the way.

Katia is doing well. We are looking forward to Myron's parents arriving tomorrow. That will put my dad here and Myron's parents so we should get some good "Grandparent" pictures! Myron's parents haven't seen Katia since just a few days after her transplant so they will be happy to see her up and about. Right now she is watching a movie with her sisters. She had another little "writing on the walls" incident today but she promises those days are now behind her:) This time she started writing a story on the wall... not a long story but a story that doesn't want to be removed from the wall. It is a stubborn set of marks and lines.

I want to share with you two newspaper articles about a little boy named Dylan. By reading the articles you can learn about his life. He passed away a couple a days ago. He really made quite an impact in his few years here. He was 13 years old.



St. Pete Times Article on Dylan, June 9, 2005



St. Pete Times Article on Dylan, June 10, 2005




Again, thank you so much for your comments about Katia's book and the "Questions" CD. They are so appreciated. I told Katia that someone said she sings like an angel... you should have seen her smile:)

Love, Tracy






June 10, 2005 11:00 AM

First, thank you so much for all the comments about the "Ladybug and the Dragon" book and the "Questions" CD in the guestbook. Karen, your guestbook entry made me get all teary eyed. I am so glad to be able to somehow "share" Katia with all of you. She is a doll and very inspirational to us, her family. I hope the book shares that. The CD? Well, Katia and I listen to it as we go to and from clinic. Myron's love is the inspiration for those songs and I love to hear Katia's little voice. That is something I will always treasure. She really had fun singing in the studio:)

I am sorry for the lack of update yesterday. We have just been busy planning for the upcoming Festival. You can find out more about it on the Katia Solomon Foundation Site under "Current Events". Katia and I hope to be out there for part of the day so those of you that are local, drop by for some good food. Myron will be performing out there and we hope to have a lot of people join the marrow registry that day. Everytime one person joins the registry, another life has a chance to be saved. I have recently had a few emails of people on the registry being called that they are a match for someone. That is so great!!! I love to hear about matches:)

Well, I better close this up. I have some books, CDs and bracelets to package up for the mail tomorrow. Everything ordered through this afternoon will go into tomorrow's mail so you get it right away:)

Again, thank you so much for your comments! We love to read them:)

Love, Tracy




*******

June 8, 2005 2:32 PM

Good day:)

I am sorry I never got back yesterday but we are working on an upcoming Festival for June 18th. More information for the festival will be available on the Katia Solomon Foundation Site by the end of the day for those of you that are local.

Katia is doing well. She is having quite a temper problem today but that is expected with all the steroids she is getting. Poor thing. I feel bad for her. Her crying gives her headaches and a sore throat.

Her IGG levels were 553 the other day which means we get to skip the 5 hour transfusion this week:) VERY GOOD!!

I want to thank each of you for taking time each day to check on Katia. I am honored that so many people love my little baby. So many of you ask about Myron and the girls and I am just touched that you care so much. I would like to ask that you pray for our family. Things have just been very hectic with Katia's appointments, upcoming events and planning, finances, and just so much more. I would not trade being home for anything in the world though and I am thankful each morning as I wake up here and know we are home:) Thank you so much for ordering the "Questions" CDs, "Ladybug Club" Bracelets, and the "Ladybug and the Dragon" books. I am so glad to hear that some of you have already gotten your CD in the mail and are enjoying them. Katia does sing cute, right? I was very proud of her for getting that done. Sharayah and Tatiana to a bang up job on their part as well. You won't hear me on the CD as it wouldn't be enjoyable but I do participate with the design of the CD label and jacket. I am better at that sort of thing and leave the singing up to Myron and the girls:)

Lots of love,

Tracy










June 7, 2005 11:42 AM

Emma Grace passed away yesterday afternoon. Please pray for her family and friends as she will be very missed. She fought a very brave battle and so many of us followed her journal and learned so much from her story. "Fly free sweet little Emma."

Love, Tracy







June 6, 2005 1:45 PM

WBC 5.0
HGB 12.4
PLT 305
ANC 2200
IGG 553

We are back:) All went well at clinic. I am still waiting for some of her counts to come in. The IGG is what determines if she needs the IVIG transfusion (5 hours).

We did dose 5 of 8 of the steroids IV. She does fine with that. She was getting a bit impatient so you can just imagine 5 hour transfusions...not too fun.

Also, all the CDs, Bracelets and books that have been ordered through yesterday are on their way to the post office:) Quick, huh? We are hoping to get orders out within a week of receiving them. Someone asked who does all the packaging and such. Well that would be us. It is a family thing to get those in the mail.

Katia wants her "Ladybug Club" Bracelets all over the world. Which, in looking through past orders, they are getting to that point. Also, someone asked about putting the new song on the website? Well we are thinking about it but for now I am keeping down my bandwith limits to save money. I will in the long run. The "Questions" CD features a few kids on the cover that I have followed on here. I wanted to make mention of this. There is Angel Casie, Angel Jalen, Angel Katja, Jerry Gomez and of course Katia. The other pictures include different things that just make us ask ourselves, "Why?" There are pictures of war, hunger, soldiers, strikes, abandonment, vigils, a funeral, etc. There are so many things in life which we will never fully understand. That is where the title, "Questions" comes from.

On the inner part of the CD cover, there are pictures of Katia, Sharayah and Tatiana at the studio, Myron at the studio and information about the song. Plus, there is a picture of "Wise Soul of the Sun" which has participated in this song and "Gift of Life" with his inspired word in rap. A junior highschool choir does the chorus and they do a fantastic job.

I get a lot of emails each day, maybe around 180-200 or so. Most of them are either prayer request, updated information on people I follow, intro to new sites but a lot are thanks for keeping up Katia's site and giving inspiration. I have to say that comes from each of you, though. I get inspired by you. I get inspired by Katia. I refuse to let cancer take over our lives. We have decided to instead do all we can do to make a difference in any small way we have the opportunity to. Katia has taught us this lesson. She always finds something to laugh at or smile at. Even when things are just no fair or no fun, she smiles (maybe after a few tears).

There are people being diagnosed with cancer each day. That is sad but it is true. Our hope with the"Ladybug and the Dragon" Book (Katia's story) is to let people see how this changes your life. Not just the patient but everyone around the patient. In Katia's story, she is the Ladybug (of course) and the Dragon is leukemia! We don't like the dragon. He isn't going to win in this book and he isn't going to beat Katia. Katia is going to be the dragon slayer!

I appreciate being able to come on this journal and share my thoughts, concerns, thanks and appreciation. I appreciate your guestbook entries, your emails, your letters, etc. It is easy for me to love Katia. She is my baby:) I thank YOU for loving Katia too!!

Love, Tracy







June 5, 2005 3:00 PM

First, today is National Cancer Survivor Day!!! We are glad to be able to celebrate this with Katia, at home:)

It is also the 2nd day of the All Children's Hospital Telethon so if you would like to call in a pledge, you can call 1-800-270-8642. You can do it in honor of Katia (a survivor) if you would like. We are watching and listening to all the pledges that come in:)

There was a reunion going on for the oncology patients today at the hospital but Katia really didn't seem up to going so I don't want to push it with her and then have her feel bad and get sick. She has enjoyed watching the telethon and seeing her doctors and nurses do interviews.

Katia is doing good today. She has her complaints and pains but, for the most part, today is a good day. We go to clinic in the morning for more IV Steroids even though this dose hasn't seemed to have worn off yet (moodiness). She has had quite an appetite the last few days but nowhere near what it used to be when the steroids were by mouth instead of IV.

Please continue to pray for the above prayer request. In checking on them, they still are in need of your prayers. There are so many in need of prayers. If I listed them all, the page would never be able to load. Our prayer is always for a complete cure of cancers and blood disorders as well as so many other medical concerns finding a cure.

Thank you for the orders coming in for the "Questions" CDs, "Ladybug and the Dragon" Books (Katia's Story) and the "Ladybug Club" Bracelets. It is our hope to spread Katia's story and raise awareness to as many people as possible. You have been a great help in doing this. THANK YOU:)

Love, Tracy


****************


June 4, 2005 4:00 PM

Good day:)

The days of the week get so mixed up when the kids are home for summer. All day I have thought it is Friday.

Katia is doing decently well. She is having headaches so she has needed pain medicine for those. But, other than that she is happy and chatty:)

Her eyes appear to be getting worse again? They looked good the day after her steroid dose and basically stayed okay for about 2 more days. Her inner cheek looks completely healed though and her tongue is showing improvement. Her lips? Well they look like they hurt but the sores are more surface now than being so deep.

I look forward to the day when her medicine counter is cleared off because she is healed and she doesn't need so many medicines. I am very grateful for the fact that she does have medicines to help her though. I can't imagine what this would have been like before a lot of these medicines.

Please pray for another little girl. I am waiting till I hear back from her parents before I put much information on here but she was diagnosed with leukemia AML at 5 months old and now she is a little over 1 year old. She just relapsed and is now in need of a transplant. I will share more as I learn more but I am sure her family would love to know more people are praying for her.

Love, Tracy







June 3, 2005 5:00 PM

See the bracelet special above:) There are only 55 available right now for that. They are made and ready for shipping.

Katia just took about a 2 hour nap so she should be feeling good for the evening. It is 5:00 PM and no pain meds were needed all day. That is a first for a long time!

If you haven't seen the other updates today, this is the third today:)

Love, Tracy





June 3, 2005 1:00 PM Second update today....

First, I want to mention that today is two years since sweet Angel Jalen (fl/jalen) became an Angel. I am sure his family would appreciate your prayers today as they plan to do a balloon release at 3:08 PM EST.

Secondly, the first batch of "Questions" CDs should be going out in the next few days as well as the recent book and bracelet orders:) I can't wait to hear your comments on "Questions" and Katia's singing debut. This is the song she performed at the Man and Lady of the year event for the Leukemia and Lymphoma Society a couple of weeks back.

She actually went outside for a bit today and rode her little tricycle. She came back in a few minutes later worn out BUT she was happy that she got outside. Thanks Karen for the sun jacket:)

As I type, they (Sharayah, Tatiana and Katia) are playing some car racing game on TV. All I can say is I hope this isn't their idea of learning how to drive. Too fast!

Well, I just wanted to make a quick update. I need to check on a few sites. Thank you for stopping in:)

Love, Tracy







June 3, 2005 9:30 AM

Prayer Request:





Jake O.


Please pray for Jake. Jake was diagnosed June 1, 2004 with Hepatoblastoma - Stage IV. You can read more about his history at his website but Jake is not doing well right now and the family is asking everyone to please pray and ask others to pray.



I will be back later with an update:)

Love, Tracy





June 2, 2005 12:23 PM

I cannot believe how fast this year is going by!!! This time last year, we were still at Ronald McDonald House and the time just seemed to move slowly along. This year, it is just zooming by!!

Right now, Katia is playing with Tatiana in her castle and Sharayah is making "Ladybug Club" Bracelets. I so much enjoy looking around the house and seeing everyone moving along, doing their thing.

Katia was walking around the house last night basically going back and forth between Myron and I and the girls. It was nice to see her walking from room to room. I remember thinking about that during all that time in the hospital and RMH when she was basically stuck in one room. I longed for the day when she would be able to freely roam around. Well, now she can. She also has quite a nice selection of handprints on the sliding glass door leading out to the porch:)

I know so many of you have followed Katia's story since the beginning of this website and others have read even more in the "Ladybug and the Dragon" Book so you know how much Katia has not only been through but how much we have learned through all of this. One of the biggest things I think I have learned is patience. I don't mean I am the most patient person on earth (by no means) but I mean when things seem to be moving slowly along with Katia's health or we run into bumps in the road, I know God is in control. Katia just has this peace about her and I get comfort from her peace. Sometimes she just looks at me in a way that is like an elder giving me a lesson.

Let me share a bit with you about the new song, "Questions". First of all life gives us many things that we will never understand. I mean daily, we run into problems or situations that we just don't have the answers for. It goes along with the cliche, "Life is not always easy." That is a definite.

Katia opens the song with the chorus,

" I know in life, there's a deeper meaning...
I know in time, it will all be clear...
But for now, let us pray for healing...
Find a way to make things better here..."

She sings it with no music and no back up and it just sounds so sweet and pure. Then the song comes in with the music, beat and the rest of everything.

During the day, when things are quiet or when we are waiting for something at clinic, I ask her to sing her part of the song. I love hearing her sing. She does it each time with such sincerity. Over the past 3 years, Katia has gone through a lot of things that just wouldn't seem "fair" but I don't think she really sees it that way. Katia was only 2 when she was diagnosed so, for the most part to her, this is "normal" life. I am grateful for her outlook. I really don't have to argue or plead with her to take her medicines or go to the doctor. Even if she has an eye appointment (which she hates!), she knows she just has to do it and then we will be done. Is it going to hurt? Well sometimes but she knows that.

That is what I think this song is about. We don't always have the understanding or answers as to WHY things are the way they are. BUT, there are sometimes things we can do to help and make things better. Even if they aren't making things better for us, they may improve things for others.

I just wanted to take a bit to share that. I thank you for not only following Katia's journey but also for keeping her in your prayers. We all appreciate the love others have shown Katia and our family. It really means so much to us. THANK YOU:)

Love, Tracy











June 1, 2005 1:10 PM

WBC 5.4
HGB 12.1
PLT 297
ANC 2300
IGG 640's

As you can see, Katia's counts look good:) Everything but one count was in the appropriate ranges so we are good with her "report card".

She had her 4th of 8 steroid dose transfused yesterday and she did fine with it. Today? Well, let's just say, she is not a happy camper at all! These steroid doses get to her for about 3 days and just make her into a unhappy and crying little girl. We know what is causing it and she even knows why but it doesn't make it any easier. We try to just let her get over things and understand that it is out of her control.

Right now, she is playing on the back porch and not really wanting to deal with anybody but me. That is part of the reason I have gotten so bad about updating and checking on other sites. I am pretty well "on call" with her around the clock. Hopefully when these steroid treatments are behind her, we will get our sweet, happy and playful little Katia back:)

Her weight was good and her mouth (the cheek) seems to be improving inside. That was nice to see. Maybe just maybe this is slowly working. I guess this is where the importance of patience steps in. We are half way through. The idea is that by the end of these treatments, we will be able to stop the steroids and her other immunosuppressant drugs will step in and keep the GVHD under control. (Sorry for any typos here but I am typing fast)

The girls are enjoying their summer break. Especially the part about not having to be up so early. I enjoy having them home. So many have been asking about Myron's shoulder. It is about 90 percent back to function and doesn't cause much pain at all, so we consider the surgery a success:) Thank you for your concern and prayers.

Thank you for all the "Questions" CD and Ladybug and the Dragon Book Orders, you will be very happy with both.

Well, Katia is calling.

Love, Tracy




*******************


May 30, 2005 2:30PM

Hello:)

The new CD, "Questions" is available. Click the link above to learn more.

Tomorrow is clinic so I will update following her visit. She will get her 4th of 8 IV steroid dose and hopefully they see some improvement in her mouth. Me? I don't see much but I do think her inner cheek looks improved. Her tushy is not doing very well but medication is keeping her pain under control.

The girls are keeping Katia quite entertained today:) I love when they are home for the summer.

Love, Tracy








May 29, 2005 4:45 PM

Good day:)

First, I have to share with you something very good. Katia has been feeling quite well yesterday and today. Thank you for your prayers and voicemails and guestbook messages. You really are such a help!!!

I am updating pictures as soon as I am done with this entry. I have made it a point that I am not removing myself from this computer until they are updated:)

My dad made it in safely last night and Katia has been catching him up on things around here. He just saw the Girl of the Year pics and some movies we have been making. He has heard the new song and he likes it:)

The new song releases this coming week so keep an eye on the www.ladybugkatia.com page for more information on how to order.

So, let me go update those pics. Katia isn't happy because someone said she has germs? I guess I should go straighten out this mess but FIRST, pictures:)


Love, Tracy







May 28, 2005 5:43 PM

Hello:)

Sorry for the lack of update. Things here are moving along about the same. Since Monday is a holiday, we have clinic on Tuesday. I am anxious as Katia has been having quite a few "tushy problems" but other than that, I don't think we should be in for any surprises.

I need to check some other websites but please continue to pray for the prayer request above.

Love, Tracy



PS I will try my hardest to change out pictures tomorrow:)









May 27, 2005 7:30 AM

I will update later and change out the pictures but I wanted to post this early on.

Prayer Request:

Queen Maddy (ca/queenmaddy)

Please pray for little Maddy. She has been going through treatment for leukemia AML, had a transplant back in February 2004 and is now in need of another transplant. They have a cord match they will be using and her transplant is scheduled for June 14th. Please keep Maddy and her family in your prayers.

If you haven't had the chance to stop by Katia's Newest Site please check it out. This is where her book, bracelets, and so forth are and also how she got her "Ladybug" name. There is also a LOT of information on the page. You may want to bookmark it as it is updated like this one.

Love, Tracy






May 26, 2005 10:00 AM

Hello:)

Sorry about the lack of update yesterday. Katia has been quite a handful it seems. It is like having a two year old going through the "terrible twos" which none of my girls seemed to go through. One minute Katia is thrilled and loves me more than anything, the next she is saying, "You don't love me, you don't like me!" and it just goes and goes from there until the next "love spell" comes on. It doesn't seem to be so bad in the evenings though.

I think I am putting this together though. What throws her off seems to be when things change or get out of the normal routine. She is fine as long as her typical day (me all to herself) is going on but since Sharayah has been having half days this week with the end of school approaching (today), that is making things off schedule. Plus, we are handing over the files for printing the CDs and trying to finish off a few other projects, so my time gets more used than normal. Katia is used to me doing a certain daily routine but that is not the case right now. Usually she can help or at least follow me around but the last week has just been out of that routine. When she has finally had enough, she falls asleep. That would normally be a good thing BUT I don't like her falling asleep after she has been upset or if she is doing it as an escape. I feel bad. She does wake up in a better mood though.

Her eating? Well that has slowed down quite a bit due to her tongue. The numbing stuff is messing up her taste. Her tongue bleeds most of the time which I think she is used to but the taste is all messed up from the different medicines and washes she is doing. She does it though because she doesn't like the pain. Her lips are still quite messed up and her tushy (not too good). All in all, I do believe the GVHD is running its course and will hopefully, some day, just show a dramatic change! This child has just had enough of all of it right now. Yesterday, I told her to take her morning medicines. She normally is eager to show me how good she can do (there are 8 pills, two mouth washes, eye cream and one liquid medicine) all of them. She just sat there playing with the pills in the little cup. I asked her, "Are you going to surprise me?" She said, "They don't work anymore." That broke my heart. So, we took each pill out one by one and I told her what they are for. They aren't magic and some of them do things that we just don't feel them doing. Some are to keep other things from going wrong and others are to keep her knew blood happy and fighting away leukemia. We did skip one of the mouth washes and did it a few hours later. It is the one that is supposed to making her tongue heal and her cheeks heal. So, that is the one she figured isn't working and didn't want to take it. Now, do I let a 5 year old rule her medicine? Of course not. But, I do think she should be able to somehow express herself. She has been through so much, she is not a typical 5 year old. I knew she would come around because she is proud that she does do her medicines. So as soon as I had started doing something and she was watching me, she just went in and looked on the medicine counter. I asked her what she was looking for. She wanted to find the mouthwash which I hadn't even mixed up. I knew what she was after so we mixed it up and she got it out of the way. She may not think it is working but she just wanted to get it done.

Of course we go through a lot of these same things in the afternoon and then the evening when it is time for medicines again but there were no other issues for the rest of the day.

You see that smile in the pictures? Katia's smile can really just make anyone smile. I can be having a pretty bad day (more often than usual) and she flashes that little smile. I feel like, "How can I be down if she can be smiling?" That is why I love her in her little princess gowns and pretty dresses. She is my little princess because she rules my heart in so many ways. Katia shows me a lot and I know I have a lot to learn about life. Like, "Don't sweat the small stuff" (Easier said than done) and so on.

So, that is what was going on around here yesterday. In the evening, our dryer decided to just not spin anymore. We found out the belt is broken so we are going to put on a new one today. I can't go a day without doing laundry. Five people make a lot of laundry. I couldn't imagine if I had 3 boys instead of 3 girls. I know boys must go through more clothes than girls. Anyway, I think my dryer just wanted a mini vacation:)

Yesterday Katia and I took on cleaning out and organizing my closet and drawers. She was pretty helpful at pointing out the mess I was making all over my room. Then when it was all done and cleaned up she clapped and said, "Good job!" I was about to get rid of a shirt which is not much to look at but it is very comfortable. It is an oversized green, soft zip up shirt ith long sleeves.

Anyway you know how she is about my old brown shirt? Well, it seems the green one has found a permanant place in our house too. She said it is the best shirt for her to lay on when I am wearing it. It is soft like a big bath towel so it is hanging back up in the closet:)

Well, I should get a move on. I am sure today will be better than yesterday. No school after today.

My dad is coming in on Saturday for about 6 weeks and Myron's parents are going to be coming in for a visit in mid-June. So, we are going to have the grandparents around for part of the summer (all at the same time). I will definitely take advantage of that and get some good pictures. It isn't often we have my dad and Myron's parents here at the same time. Last time that happened, Katia and I were living at the hospital and it was transplant time. I think their trips only overlapped by about 2 days or so.

Also, we are trying to work on getting the back yard back to being more "Katia friendly" so she can get back out there. I am trying to locate and get one of those sun protecting summer jackets so she can keep out of the sun as much as possible.

Have a good day:)

Love, Tracy


PS Thank you for the guestbook messages. Katia and I read them together, Myron reads them when he gets home and if you look, you can see Tatiana and one of her friends signed the guestbook from school. Her best friend, Eleanor, is moving away when school ends so Tatiana is going to be quite upset when she gets home today. A lot of Sharayah's friends were seniors so they are off to college so she has been pretty quiet lately too. Sharayah graduates in 2007. Oh for those of you who want to know if she drives? Not yet. We are waiting till her 17th birthday at least. There are just more reasons than one for this but Tampa has not been the safest place to drive lately. She doesn't have any place to go that Myron and I can't take her so we just limit the risk. She is our first born:)


Okay, enough babbling...

Love, Tracy (again)









May 24, 2005 10:30 AM

Good morning:)

Katia is not having a very good morning. She is more moody than she has ever been right now. I mean we have had our moments but this... nothing close. Please pray for her to have a calm day. I can't imagine how she really feels inside with the amount of steroids she is on but I know she isn't happy when she is crying. She has to feel like she has no control over how she feels. The IV steroids, for the most part, have proved to have far less harsh side effects but today, I think I will have to say, she is not happy.

Continue your prayers for Dakota, it seems they may be able to leave Israel and return back to the states soon if his health remains stable. I am sure they are missing their home and family.

Also, pray for Bailee. They have been gone from Florida for quite some time! It would be great if they could get home soon and do their follow ups here.

And for Katie B. They have so many uncertainties right now and far as further treatment hopes and plans.

Thank you:)

Love, Tracy








May 23, 2005 6:47 PM
WBC 6.3
HGB 12.5
PLT 265
ANC 3100


Sorry I am so late:) I say that a lot now don't I? Well, clinic went well. She had her 3rd of 8 IV steroid treatments and she does fine with them. A little moody, but hey, I expect that.

Sharayah and Tatiana are studying for final exams (I should say, they need prayers) and school is out for them on Thursday. I am glad. Things seem to go smoother during the summer and holidays. It has always been that way for us.

I talked to one of Katia's doctors today about Katia's current condition, progress, etc. She did say one thing that made me feel better. I agree. With Katia's chronic GVHD and the fact it hasn't gotten really out of hand, it seems her body is doing well. As each month passes, so does the possibility of a relapse. She still has a long way to go but we are thankful actually for where we are at. With a cord transplant and Katia's type of progressive leukemia, we really have to give her 5-10 years to say she is "cured". Although she runs a lot of risk of other things because of different chemos and radiations, I am praying for smoother sailing for Ms. Katia. She has proven she is one tough cookie and she likes to do things her way. I think she also likes having to make her doctors continue to research on her behalf. She can't be a "boring or text book case" by any means. That just wouldn't be KATIA.

As we drove home today, listening to Judy Boucher on the radio, I just looked at Katia and thought how graceful God has been. In day to day life, I sometimes stray away from that and tend to worry but today, I was just happy to be driving back across that bridge, with MY KATIA:) She was smiling and wearing sunglasses and just looking cute as a bug!

Well, dinner doesn't cook itself. Although I don't understand how in the year of 2005 it doesn't, I guess I should get back to it:)

Thanks for dropping in and checking on Ms. Katia.

Also, please continue to pray for Katie B., Emma Grace, Emma B, Heidi, Daniel G., Dakota H., Kody Bear, and so many others. So many are in need of prayers and miracles.

I do have a miracle to share with you and I wanted to leave you with something very positive!!!

Jerry Gomez has his match!!! There are still some medical tests for the donor to go through and the fact they need to get Jerry into remission but the match was searched for over months and this is a great finding!!!! We are so happy and his family is so grateful!!! Thank you for your prayers!!

Love, Tracy




*******************

May 22, 2005 6:50 PM

Hello:)

Sorry about missing yesterday. I have felt like a sludge lately for some reason. Today was going by and I thought, "Okay, Tracy... move on!" I am not used to being this way. So, you know what I did to get back on track? Vacume!! It worked I think:) Usually on Saturdays and Sundays, Sharayah vacumes but today, the house got vacumed twice.

Katia is pretty much in the same mood as me. She hasn't been too active. She is pretty well watching TV for the most part of the day and playing on the sofa. Maybe I should get her a vacume:) Okay now I am babbling.

Anyway, Myron took the girls to go see Star Wars. They are all really into that movie and since Katia can't go, me and her are home. She is making me tea with her little tea set. It is a little porcelain set with saucers, cups, etc and they are white with ladybugs on each piece. Very cute and she really loves them. This weekend she opened up some mail that has been waiting and one of them had the cutest little gardening set and gloves in it. So, I think I am going to let her do a little herb garden in pots (I don't think that is against doctor orders?). She thought the gardening set was just SO cute.

We both appreciate each of you so much for checking up on Katia and our "home lives". It really means so much when I meet people or hear from people that follow the website. I hope this site will have a positive effect on many people and always have information and ideas.

We are about to start gearing up for the Leukemia and Lymphoma Society's Light the Night. I can't believe how fast this year is going!! School is out for the girls this Thursday and then they will be home for about 9 weeks:) They are always eager for summer to get here but, when school time starts approaching, the are eager to get back. Tatiana will be in 7th grade and Sharayah will be in 11th grade. Katia will start kindergarten (homeschooling) this fall also. She is eager. She likes school books and learning.

So, I guess that is about all for now. This will probably be a pretty busy summer with upcoming visits from my dad and Myron's parents. They all live overseas.

Have a great Monday:) I will update when we get back from clinic tomorrow. We have our regular visit and the IV steroid dose. I haven't noticed much improvement over the last few days but maybe that is because I see her all the time. Pray all goes well.

What are your plans for the summer?

Mine is to get more active with walking maybe and doing some exercise. We will see how far that gets. I would also like to get the kids to the zoo once or twice. Another big goal, learn to relax a bit more. I have been getting stressed out a bit too easy lately and I am really going to work on this. Please pray for me on that:)

Well, Katia says to say hi and to tell you she is watching TV with her brown shirt keeping her warm. THE "Brown Shirt". I can't believe how attached she is to that shirt:)


Love, Tracy








May 20, 2005 7:53 PM
WBC 7.5
HGB 12.4
PLT 305
ANC 3000


What a long day.....

Katia and I got home from clinic close to 6:00 PM. She slept most of the time we were there which was good. The infusion goes about 5 hours. Her infusion went just fine after a few pre-meds were given to cut back and yucky reactions. She is right now just finishing dinner and eating apple pie:)

I have updated the pics with some of the pics from last night. I really thought they would come out better but it was really dark and everything moved along pretty fast.

I do have to share with you a few things. First, Katia had an absolutely fabulous time and she made sure everyone knew it. She was such a little ham. She was smiling and waving and bowing while she was up on stage. She sang her part of the song just as I would have wished. Myron and the girls performance (which I was very nervous about) was great. They got a standing ovation and people were really enjoying the song and clapping along. They performed "Questions" but Myron opened up with a small part from "Leave Her Alone". It was just so touching, the WHOLE NIGHT! To be there was just emotional in so many ways. I think the best part was seeing Katia, up on stage, just smiling and being her little self. She looked so good and so healthy and I just reflected on what she has gone through and how much she has inspired me.

Everyone was so nice and so happy to see Katia. She really "ate up" the attention and compliments! She was very excited to get to wear her pretty dress and shoes and the little tiara stayed on most of the night. She did finally take it off near the end. She loved getting her "Girl of the Year" sash. I was really amazed at how she handled herself (no outburst) through the whole night. I am sure she was getting tired but that word is not allowed in her vocabulary:) If someone asked if she was getting tired, she would quickly respond, "I am not tired" and then tell me they were saying she was tired. It was cute.

She had never even been to downtown Tampa so she loved to see all the big buildings and the street decorations. She even pointed out a big "slinky" that had been sculpted in front of one of the downtown banks.

All in all, we had a wonderful evening, met some very loving and compassionate people. I think the total raised for the Leukemia and Lymphoma Society was over $180,000.00!!!!

Hopefully we can get some of the pictures that the photographer took because we just didn't have a very good "picture-taking night". If I get some, I will share them on the site.

I want to get some pictures of Katia in her dress and tiara out in the yard or something. The grass is so green and I am sure Katia won't mind putting her dress and shoes on again:)

Love, Tracy











May 20, 2005 9:00 AM

What fun!!!! We had an awesome time last night and Katia did so well. She smiled and enjoyed herself. The performance of "Questions" was great! I am so proud of Myron and the girls:)

I will share more later as well as pictures. Katia and I are off to clinic for her 5 hour infusion of IVIG. Pray all goes well:)

Katia will be talking about last night for a long time! She really felt and looked like an absolute princess and I am so proud of her for all she has done. We love you guys!!

Love, Tracy









May 19, 2005 10:30 AM

Good morning:)

Well, tonight is the Leukemia and Lymphoma Gala! Katia is very much looking forward to putting on her dress and shoes. She has a yellow formal dress and little matching shoes:) She is going to be a little princess for the night. She even has little tiara if she will keep it on:)

Myron and all three of the girls will be performing the newest song, "Questions". I am so nervous for them but I know they will do a great job. Sharayah and Tatiana will be in formals too and Myron will be in a tux:)

YES, I have to wear a dress to this too. A formal. It is nice though to get dressed up. I am just not a dress person really but it will be fun. I can't wait to see everyone and see how the night goes. Tonight they will be announcing the Man and Woman of the Year and Katia (Girl of the Year) along with Jack (Boy of the Year) will be handing out awards. One of the candidates for Woman of the Year is Heather Russell. She was treated at All Children's so our fingers are crossed for her:)

I will put pictures up tomorrow from the Gala.

Okay, someone asked is Katia "allowed" to be doing this? Well, her doctor does know about it. Although Katia has not been released to do this, this is an honor and we are just taking all the precautions we possibly can. I am really glad she can participate in this as I am sure it will live her mind for quite sometime, as well as all of our minds. In many ways, this is more than an honor but a big milestone and blessing in this journey. This time last year, we were at the Ronald McDonald House not knowing what the future held for Katia. Tonight, we will be celebrating with the Leukemia and Lymphoma Society who does SO MUCH research and fund raisers and helps to give us a lot of hope for a future with Katia. We appreciate each and everything they do and what they stand for.

So, keep us in your prayers. Pray that all will go well, Katia will do well and that the night will be full of happiness and hope:)

Love, Tracy








May 18, 2005 1:30 PM

Hello:)

Ms. Katia seems to be feeling better today. Her biggest problem at the moment is her tongue. It is pretty red and irritated. She has her happy moments though and I am grateful she is like that.

I have updated the prayer request above. Katie B. has 85 percent blasts in her most recent marrow check. I am not sure what the plan is now.

Another little boy (no website) we have been keeping up with just passed away today. The Katia Solomon Foundation is trying to help this family out with final expenses as this is just a very bad time for them. If you would like to be a part of this effort, please email me.

You know, over the last 3 years, we have learned so much but I think one big thing I have learned is to appreciate each day and not worry about WHY we have to go through certain adversities but what can we do to make not only our journey not as difficult but others' journeys also. I find myself praying a lot more than I ever did before but not only for needs and requests but also for thanks. Even simple things like a good parking spot:) Really though, I look at Katia each day and even with her problems, she is our miracle! Thank you, God.

Love, Tracy








May 17, 2005 10:50 AM

Good morning:)
First, thank you for stopping by.

As I am typing, Katia is sitting here drawing. I watch her and just wish there could be some gauge on her that shows me how she is doing. She doesn't look pale today which is great! Her eyes haven't bothered her at all this morning which is super! I have learned to not take one moment for granted. I sometimes wonder how I would be if we hadn't been faced with so much concerning Katia. Would I still notice everything little thing she does? Would I still truly listen to her words? Would I watch her playing and love each moment like I am making a mental scrapbook? I hope so.

I have a horrible memory. I can't remember what I did on Friday BUT I do put things into my mental scrapbook daily (maybe that is why my brain's file cabinet is so full). I feel like a computer sometimes that needs to download my files to a CD and put them away. I think that is why I like taking pictures so much. I wish I could take more home movies but I am definitely a picture person. I don't like posed shots. I like people just being themselves for the most part. I think Kody's Mom, Kim, and myself keep the digital photo world spinning sometimes:) With all of my kids, I have always kept photo albums and I take a lot of pictures. Now I don't print the pictures though. I just put them on CD. I wish digital cameras had been out when Sharayah was a baby.

Sharayah and Tatiana are turning out to be picture takers too. Especially Tatiana. She loves taking pictures! Myron keeps his camera on him at all times, right next to his cellphone:) I wish so much I would have had my camera with me in Walmart when I ran into the "Ladybug Club Members". That would have been awesome!

I am looking forward to Friday's clinic. I want to see Katia's labs. We will be there for a while on Friday so she is going to take a few things to do. I just pray everything will start clicking into place with her treatments. If not, then we will have to start working on a new "cocktail of medicines" to try.

I want to ask your prayers for a little boy and his family. I have mentioned him on here before. His name is Joshua. He is not doing so well right now and I know his family could really use your prayers. He went through transplant not too long ago, a little over a month now. I know times are very stressful for them right now as he is in ICU. If you would like to help out, along with the Katia Solomon Foundation, here is how you can help. Anything purchased through www.ladybugkatia.com right now, for the remainder of this week, the proceeds will go towards a donation to Joshua and his family. I am sure this family would very much appreciate your prayers and we would really like to do something to help them out. So, thank you for anything you can do.

Well, Ms. Katia has fallen asleep while I was typing this. I will be back a bit later today to update some of the prayer requests.

Love, Tracy


********************


May 16, 2005 3:22 PM
WBC 4.8
HGB 12.1
PLT 255
ANC 1700
IGG 443


We are back:)
Katia did well today. I know she gets bored there but she always handles it okay, while we are at clinic.

She got her next IV steroid dose and we discussed her current situations with her eyes, mouth, tushy, etc. I am thinking the eyelids, tushy and one of her cheeks has improved. The part of her mouth that I agree is GVHD is definitely improving. My prayer is that the white patch in her cheek will improve this week and prove that it is GVHD and not something more.

Her eyes? Not sure. She has had to take pain meds this morning before clinic and then again shortly after we got home for her mouth pain. So, because of that, her eyes haven't had much of a chance to give her trouble. She isn't rubbing them at all but she does keep closing them and squeezing them. I am not sure if they hurt and she doesn't say anything since she fears eyedrops or if maybe they aren't hurting as bad. I hate that she tries to hold back telling me she is in pain but she really does understand what the treatment would be and she tries to figure out what is worse to her. She really hates the Tylenol with Codeine BUT even she knows it works very well for her. I mean 15 minutes after a dose, goodbye pain!

If you can see her counts have dropped. Her ANC (one kind of immune count) went from 2400 down to 1700. I am assuming this is due to the steroids again. It hasn't been that low since February. But, all her counts dropped, each one. They are all still within the normal ranges but some of them are barely there, like her white blood cells. I am still waiting to hear about the IGG levels which is another, more detailed immune count. It had been in the 600's then dropped into the 500's and I just don't want to see that drop lower.

Other than that, I count our blessings that, while I type, Katia is plopped comfortably on the sofa watching OOBI! I am still very grateful to have her home. I am even more grateful when she has toys out and about. That means she is active and playing. That just warms my heart. All of us like to see Katia happy, playing and laughing!

Oh, thank you so much for all the phone calls!! I am amazed how many people have been leaving Katia voicemail messages. She is really getting a kick out of this. I can't believe my 5 year old is getting voicemail:) I have left the number right above the journals. If it says the mailbox is full, I try to empty it a few times a day. It only holds 20 messages at a time I think. THANK YOU:)

Love, Tracy







May 16, 2005 9:00 AM

We are off to clinic. Please pray for Katia though. She has really been having a lot of pain with her eyes since last night. She is on pain meds which takes it away but as soon as they wear off, it comes right back. She says it feels like needles poking both her eyes and she doesn't want to open them. Since it is in both eyes, I don't think it is tumor activity from the old tumor but I hate to see her in pain and I have no idea what it could be.

I will be back later:)

Love, Tracy









May 15, 2005 2:00 PM

Good day:)

All is okay here. I am sorry if I have you worried. The Leukemia and Lymphoma Man and Woman of the Year Gala is this coming week so we are trying to prepare for it. Myron is performing along with the girls plus we are trying to get Katia into a pretty dress for the occasion as well as the girls. We all have to be dressed up. I am NOT a dress person, really. I am very casual. Myron will be in a tux.

Katia is about the same. Tomorrow, we have clinic and will have the next IV steroid dose. She is looking forward to going to clinic. She wants to wear a skirt she has on today. Plus she wants to wear 2 little ponytails on the top of her head:) Yes, it is long enough for 2 little ponytails! I will have to take a picture.

So, that is what we have been up to. It is pretty hot these last few days which actually feels good as long as I don't have to be outside long. I am not really a "sun person". Funny, I live in Florida:)

Well, I will update after clinic.

Love, Tracy









May 13, 2005 10:00 AM

Prayer request updated some. Please keep Emma Grace, Jacob D., and Dakota in your prayers. Dakota has taken a turn for the worse, Emma Grace has improved a bit and Jacob D. is having major surgery today to remove new tumors.

I will be back later today and will check to see how these kids are doing throughout the day.

Katia is about the same. She is dressed as a princess today:) Since she asked me yesterday NOT to call her doctors, I didn't. I EMAILED them:) There is always a way around. Anyway, he said it may take 2 weeks or more to really see changes and if this is working so... we pray and wait.

Love, Tracy







May 12, 2005 12:14 PM

ADD ON: Emma Grace and Dakota H. really need your prayers right now.

**************

First, Katia is LOVING the voicemails for her:) She has gotten hugs sent from so many people and gotten to hear different kids call in and talk to her. She has even gotten a few hugs and barks from dogs:) This is neat. PLUS, I have gotten messages and I get to hear the voices that go along with names I see ALL THE TIME in the guestbook. I wish I had thought of this sooner.

I have put the number and such right above the journal entries so I will keep it there. Since Katia doesn't really get to go places and meet people, this is the next best thing. Thank you for all your messages. She has received well over 70 since I put it on here. WOW!

As far as Katia's progress? Well her eyes appear to be improving but her mouth is worse. I am not sure that both are GVHD related but we will see. The sore she has in her cheek (that white patch that was in the picture-journal history) has also appeared now on her tongue. It started off as just a small irratiation and now it is the same thing. I am trying to give that IV Steroid dose from Monday at least a week get in there and help improve things. The times she has done the oral steroids, the GVHD started looking better almost instantly. That is why I am not so sure this is GVHD in her mouth. We will see. I pray this treatment is the answer though and the mouth, tushy and eyes totally clear up. That would just be AWESOME!

Her blood pressure has done fine with the higher steroid dose which is good. That was a concern. It has gone up but it isn't high enough to treat really. We will get the next IV Steroid dose on Monday and each Monday following. It takes about an hour to transfuse.

Well, that is about all for now. I actually have some more cute pictures that I have already uploaded to the computer so I will change them out in a day or so.

Thanks so much for checking in and for all the guestbook entries and phone messages. There's a lot of love here:)

Love, Tracy









May 11, 2005 1:52 PM

Prayer requests have been updated. I still have some more to go through.

Katia is LOVING her phone messages!!! I wish I had known about this before. I think it is a great spirit-picker-upper:)

I enjoy hearing them too:)

I will be back later with an update but I wanted to get the prayer requests posted.

To leave Katia a message,

Dail 1-800-MY-YAHOO

Choose the choice to leave a message for someone.

When it ask for your 10 digit ID, it is (on your phone dial)L-A-D-Y-B-U-G-H-U-G

That is all:)


Love, Tracy



*****************

May 10, 2005 4:20 PM

Well today seems to be better than yesterday:) So, that is good.

Last night was a long evening as Katia didn't feel good. Her blood pressure was up and she was pretty pale looking. Her tongue was really bothering her. She started the Tylenol with Codeine and also a Lidocaine Solution to swish with. That numbs the tongue but it also makes things taste funny or bad or have no taste at all. She hated the mouthwash the first time but once she realized what it would do, she ask for it now.

One of the guestbook entries said something about Mineral Oil since the Codeine will constipate Katia. That is a good point. Katia is however on Mineral Oil daily already so she should be okay. I do like input.

Pictures? Well things have just been HECTIC these last few days but I promise you, I will get them up here as soon as I get them off my camera. Isn't that sad? It used to be that I would have to go have them developed and now I just have to plug in, upload and walaahhh, pictures! I haven't done that yet? Not yet, but I will:) I will make Myron stay behind me to get it done. We have just been really trying to finish off this CD and have made a few changes (which I think will be a good thing).

You want to leave a message that Katia can LISTEN to? Well here is a free way to do it. I am sure she will love to hear from you.

You dial
(1-800-MY-YAHOO)
and then when it ask you the 10 digit number, you dial
L-A-D-Y-B-U-G-H-U-G
which is 523-928-4484. She even recorded her own name:)

Anyway, I thought that was cute when I saw that. It was one of those lovely spam mails:)

Katia's appetite is back FULL FORCE which means eating, eating and more eating. I went on the donut and pie run as well as getting her other MUST HAVES for her while on steroids. Right now, she is eating Mac and Cheese:)

I have to share this story with you.

I was in Walmart yesterday, Super Walmart, and I kind of heard a lady and a couple of girls whispering under their breath and pointing at me. Okay, if I was paranoid, I wouldn't have been to happy but I figured they had seen me on a news story. Then the youngest girl said, "That has to be her, look at the hat!". I had on my white ladybug hat. So, they come right up to me and say, "You must be Katia's Mom!!!!" After they found out they were right, they show me their arms and say (basically all together), "We are in the LADYBUG CLUB!!" By now a few others are looking at us. I thought it was just priceless and I really didn't care what anybody else thought:) I stood there, in the bread isle, chatting for about 30 minutes and I have to say, they have great memories. They have kept up with Katia since right before her relapse. They were from Wisconsin and down here to go to Disney. Of course, I didn't have Katia with me as she basically remains on "Lock-Down" but they sent her a hello and a hug through me.

As soon as I got home, I couldn't wait to tell her. I just thought that was so neat. Not only did they know of her but they were in her Ladybug Club! There have been a few other people that keep up with Katia that have run into others wearing the Ladybug Club Bracelets. I think that is so neat. I mean I don't ever expect these bracelets to be like the Lance Armstrong ones but it is nice to know they are all over the nation and the world. That is a very special feeling to a mom, to know that so many people pray for and love her little baby. THANK YOU:)


Love, Tracy










May 9, 2005 3:00 PM

WBC 6.3
HGB 12.4
PLT 298
ANC 2300

We are back:) All of Katia's counts look well. She likes getting her "good report card!"

We did stay a little late today. Due to the condition of Katia's mouth, tushy, and other areas with GVHD, we did an IV dose of steroids. Hopefully, by doing this weekly for a while, this will help get her GVHD back into a reasonable level. Whatever works, we are willing to try. So, that will mean the hunger and moods are back but, since it is IV form, she shouldn't get her puffy face back. I really have a feeling this may work.

Around Katia's finger tips and nails, the skin is peeling off and it looks pretty painful. She says it doesn't hurt unless she tries to pick a piece off. It seems this may or may not be GVHD related but one way we will find out is to see if it improves with the steroids. She has had peeling here and there before but this is pretty bad and deep peeling and it leaves her pretty open to infections. She doesn't play outside or anything but we just need to make sure she keeps her hands clean (which we already do) and that anything her hands come in contact with is clean (which is already done). I just really really pray this weekly treatment of IV steroids will be the solution to this ongoing GVHD issue and that her tongue and mouth and her little tushy will feel better.

The other concern was the white patch inside her cheek.



The picture above is not Katia's mouth but this is a picture of what it looks like. This has been there since January when the GVHD flared up and she was hospitalized. It is believed to be GVHD as well but that is not 100 percent sure. I had worried about it being Oral Lichen Planus which could develop into quite a problem. The other concern is that there is abnormal cell growth that could become malignant. So, if it doesn't seem to start improving then it may require a Brush Biopsy. I would just like to see it also clear up with this IV steroid treatments. It has caused me alot of worry over these past months and I would like to know it is healing.

All in all, I am just really praying that there will be improvement over the next week, before the next treatment. I have been doing a lot of reading and research and not a whole lot of sleeping lately. I just always want to know we are on top of Katia's treatment and that we don't let something slide by without getting caught or thought through.

The doctor also changed her pain medicine to Tylenol with Codeine. Hopefully this will stay in effect longer so Katia can feel better. She is laying on the sofa right now. She really wants to play but her tushy is hurting.

You know, I use the word "tushy" so much, I am going to forget how to talk to an adult:)

Well, I have a few things to get done around here. My sister is graduating from nursing school today and I wasn't able to make her graduation. I am very proud of her as it wasn't easy for her to go back to school. She has 4 young children ages 13 down to 4. "I am proud of you, Donna."


Thank you for your prayers. Also, thank you for all of you ordering the "Ladybug and the Dragon" book. They are getting shipped out right away. I enjoy reading your comments. I like that it is easy reading and has all the colored pictures in it. The author/publisher, Rick, did an excellent job and really had his heart into this project.

Love, Tracy







May 9,2005 7:00 AM

I hope each of you had a very nice Mother's Day.

We are off to clinic this morning so I will update more later but I wanted to thank each of you for your Mother's Day wishes.

Myron and the girls gave me a good breakfast (pancakes, eggs and bacon) and we spent most of the day just kind of goofing around, talking and playing Yahtzee. I got my favorite present!! Handmade cards:) Each of the girls gave me a card and Katia had drawn me a picture. It was her and I playing in the rain under a big, pretty yellow sun and a ladybug flying in the air:) Maybe I can scan it in for you. I also got a very comfy pajama set (which I am still in at the moment).

A goal today? Changing the site pictures:) I will try to get on that when we return from clinic. Pray all goes well. Katia's mouth is still her biggest complaint. Next, her tushy and third, her eyes are still irritated.

Please pray for all of our friends that are going through treatments, set backs or losses. I was especially thinking of those Moms who would be spending their first Mother's Day without their child. I cannot imagine.

Thank you for your prayers and for stopping by here to check on Katia. I will udpate after clinic:)

Love, Tracy







May 7, 2005 9:47 AM

Good morning:)

Some good news to share is it seems Katia's pain isn't so often right now. That is great! She actually said something about it yesterday that she didn't hurt so much. That made my heart feel good. I am hoping it means the problems are improving and not just pain being masked by medicines. Pray things are working and her GVHD is clearing up. I really don't want to have to change treatments again on her as I feel like changing so often is also part of the problem.

Well, the newest CD is coming along. It is down to just getting the CD printed and then it should be available. It is a slow process at some points, but in the long run, it is always worth it. I just can't wait for people to HEAR it!! Katia's little singing debut:)

We have also been quite busy with The Katia Solomon Foundation. There have been quite a few drives recently and we are in the process of turning the Foundation into a 501 (c)(3) which means everything with the Foundation is completely seperated from our family or Katia. It has been this way for quite some time now but now it will just all be more organized and run differently. I must say, running a foundation is a lot of work and I never knew how much was involved. BUT, we are glad to be able to do it. We definitely appreciate our board members and all they do. Like us, they also have their own lives and families but we all feel very strongly about what we do and what we want to accomplish in the near future. We have been able to do drives and help a few families (more about that will be coming to the KSF website) and we just want to be able to do more of each. The KSF website will hopefully be getting a "new look" soon also and be a lot easier to navigate through.

I am looking forward to tomorrow, being Mother's Day:) We don't do anything BIG but the girls and Myron always make me feel like a QUEEN:) I am just glad, this year, WE ARE HOME!!!

Happy Mother's Day to each of you:)


Love, Tracy




***************

May 5, 2005 1:28 PM

First, I want to wish all you MOMS out there, HAPPY MOTHER'S DAY!!! I hope it is as extra special for you as I am sure my family will make it for me. Katia has been practicing her "song" for the last 2 weeks at least and is about to burst to sing it to me:)

Before I had children, I never knew how special Mother's Day would be to me. I was raised by my father. In school, I would make him Mother's Day cards and such and the teachers would always help me make them just right. Now looking back, I can't imagine how hard it must have been to raise my sister and I. We were just one year apart which meant we were both two year olds at the same time, toddlers at the same time, teenagers at the same time and married almost at the same time. Now we are both mothers. My sister has four children and I have my three. Time sure does fly!!!

Some may ask, where was my mom? Well my mother left when I was a few months old and my sister was just over a year. She moved up north. She was later remarried and I have 3 more siblings by that marriage. Two half-sisters and one half-brother. I do stay in touch with my mom and half-siblings. I love my mother. She safely brought me into this world and gave me some good genes:)

When I think of Mother's Day, I think of Myron's Mom. What a wonderful mother and a great example to me. From the first time I met her, she has treated me like her daughter. For those of you who have the "Ladybug and the Dragon" book you know the whole "sappy little story" of how Myron and I met. Anyway, Myron's mom has been there for me in far more ways than any Mother-in-law. She has just been such a great mom to all 6 of her sons and, by her example, has taught me so much and given me so much. It is one thing to lead by direction but far different to lead by example. Everyone that knows Myron's Mom, LOVES her dearly.

"Happy Mother's Day, Ma"!

When I was very young, maybe 11 or 12, I decided my goal in life was to be a good mom. I wanted to be home for them, pick them up from school if they were sick, go to the doctors with them, cook for them, etc. Although I am not Ms. Cleaver (from Leave it to Beaver for those of you not quite the age to know of Ms. Cleaver), I am grateful that God has not only blessed me with three beautiful daughters but He has also allowed me to be able to stay home. It has not been an easy task, financially but Myron and I have always agreed that we would do whatever it took so I could stay home. It just seemed very right for me. Not everyone can do that and I know not everyone would want to do that (I understand that also...) but I really enjoy being home.

When I had Sharayah, I used to read every book on parenting and schooling and just whatever I could get my hands on. I just wanted to do everything "right". When I had Tatiana, things changed. Two young girls, books don't seem to explain things the way they actually happen. I found out very quickly that each day was going to be different and an adventure. Then when Katia came around, Sharayah was 11 and Tatiana was 7, I felt quite "out of practice" at taking care of a baby. Katia was the "Family Baby". We all took care of her and played with her, fed her and just were happy to have our new little addition. It continues to be like that daily. With Katia's illness, each of us step in and do our parts. I don't know what I would do without the support of my family. Each day does not run like a well oiled machine though. We do have our days... Some days seem more like Nanny 911:) Reality sinks in when I step back and realize we have a TEENAGE daughter, a MIDDLE SCHOOL daughter and a daughter that thinks (knows) our house revolves around her happiness. But, all in all, I am grateful. I am grateful to be spending THIS Mother's Day, again, with all 3 of my daughters.

Mother's Day 2002, Katia had just been diagnosed and Myron's mom and I had a "Cafeteria Meal" in the hospital cafeteria. All in all, it was special and I was grateful for her company.

Mother's Day 2003, things seemed to be going well. Katia had been off treatments for 8 months, continued to be in remission, was growing her little curls all back and things felt somewhat "normal".

Mother's Day 2004, Katia was 3 months out of transplant and we had just moved over to the Ronald McDonald House. Although things were very touch and go with Katia's condition, we were just grateful to be out of the hospital after spending over 8 months in there. We had a nice day at the Ronald McDonald House just being a family:)

Mother's Day 2005? I guess I will have to fill that in on Monday:)

So, to each of you, have a Happy Mother's Day:)

Love, Tracy








May 4, 2005 2:50 PM

Good day:)

I am back:)

Although there have been no dramatic changes or turn of events, I feel better. Why? Prayer.

You know things get to the point, it seems like everytime one turns around, there is going to be something else to face. We all have that.

It just seems so many things were going on. After Christine's accident, I think I began to feel a bit of panic. Although, each day is filled with uncertainties when it comes to Katia, it just seemed to build up to a point of really troubling me.

Myron had been working quite closely with Rafael and his family for some time now. There was a language barrier and financial issues as well as their need to find Rafael a match. Rafael's passing came as quite a shock. We are actually making a type of "tribute page" for Rafael which will tell you more about his life, his family and have some pictures.

These things, along with others, just added up for me and I needed to sort through them.

It also seems that Katia is bouncing back and forth with this GVHD, two steps forward, one step back, one step forward, two steps back. I have tried to hold on to give the meds time to work but they just don't seem to be working. Seeing her struggle, tears my heart apart. So, I have been doing quite a bit of research and praying and just by doing that, I feel a bit better and more ready to discuss my ideas with her doctors.

Katia of course has an awesome attitude toward things. She does what she is asked to do as far as taking her medicines, eating her meals, etc. She is waiting for her medicines to "work". In the time that she doesn't hurt, she is just as happy as can be. She really amazes me at how she can just bounce out of things and back into her little playful self. I admire that strength in her.

I want to thank each of you for ALL you do. I don't know if you realize what you do for Katia, our family, but especially me. You really do raise my spirits and do so much for me just by allowing me to share my thoughts, concerns, worries, joys, etc. I can't wait to share the big "Katia Milestones" with each of you like going to school, report cards, graduations, weddings, etc. Won't that be super!!

Well, I am supposed to be getting some Mac and Cheese together for Katia and she hears me typing:)

Duty calls.

Love, Tracy


PS Thank you:)






May 3, 2005 6:48 PM

This was emailed to me from someone who found this on Ashley and Ryan's site. They are a brother and sister both battling cancer. Their mother, Robin, wrote this. I wanted to share this with you as it really hit home when I read it.

Katia is doing okay. Basically things are the same. It doesn't seem the medicine is doing much for the GVHD so she is still going through her same symptoms and pains.

She is okay as long as she is on her pain medicine. Right now she is a "bunny" with her yellow ears on.


This is what I wanted to share with you:



WHAT IT'S LIKE TO HAVE A CHILD WITH CANCER...

Picture your child sitting in the middle of the street Picture yourself in your home watching your child From the window. Everything inside you wants to reach out and save them but you can’t get out, all you can do is watch and pray that God is watching over them You see them fall and cry for you to make it all better But you can’t get to them, they can see you and see your tears And maybe hear your voice through all their tears. You pray God will keep them safe. You hear a car in the distance, but never know how far away it is, some days it seems really close other days even closer. You know that at an moment that car may come and change your world all over again, in a split second you can be back to were you were when this all started or worse yet, the fight may be over. Some days you start to feel a little more “safe” and back up from that window, walk over to the coach and sit down, when just then you hear that car again and in a second you are one with that window again, all those fears you tried so hard to put aside are back, more intense this time, feeling guilty for having let your guard down. It makes leaving that window the next time that much harder. We want to keep them close at all times for fear of the unthinkable. At night when you leave their side to go to bed, you take one more quick peek at them to make sure all is well. You lay in your bed hoping to see them tomorrow, not wanting that day to end, for as hard as it was that day they are here with you, and tomorrow is filled with the unknown, every day, night after night these are our fears. We are exhausted in every way. Our prayers from one night would fill God’s book a million times over. All you can do is pray to God to spare them, let them be safe.
From that window you see the fear in their eyes, their hopes of the future, such a small child sitting their all alone, surrounded by love, but alone ,fighting so hard, not wanting to let you down, for they are very smart, they know our sorrows. Seeing your child sit there ,wanting to help with all your might, But knowing in the end its them and their bodies that must do all the work, so much to ask of such a little person.
You’d never let your child sit there in the street, knowing that they could be taken from you at any moment, you would not just sit there and stare at them and pray to God to save them, you’d pick them up, wrap your arms around them and hold them forever, keeping them safe.
Yet that is what us parents of children with cancer are asked to do every day. Let them sit there and watch and wait and pray, pray hard.
Yes, I believe in God, but that doesn’t stop my mother instincts to want to do something to help them. How do we put everything we learned as parents aside, and simply hand it all over to God? How is it decided which child shall live and which child will pass on? Why is it that some children struggle so very hard and win their battle only to have it it return with much more vengeance? Why do some children sail right through their treamtent and then die suddenly? How are we to make sence of any of this? With each clinic appt. brings the possiblity of a relapse, no matter how great they look or how wonderful they feel. If only we could judge their health by the way they look on the outside. We are suppose to protect them, to keep them safe from harm, who said cancer could make all the calls? I never agreed to that, I am their mother and I will fight for them, with every ounce of my being.

Cancer may be calling the shots, but it will not win this game, not with my children, not with any of our children, we are so very weak, but so very strong, this bravery we have we get from our children, our little heroes, fighting every day with all their might…
Pray for them…………



**This was emailed to me from someone who saw it on Ashley and Ryan's site. They are a brother and sister both battling cancer. Their mom Robin wrote the entry on their page.

Love, Tracy


PS I will be back in full force soon. Thank you for your emails and entries.


******************

May 1, 2005 10:30 PM

I added a new prayer request above for Jacob D. He has been on here before and things seemed to be getting back to some kind of "normal" for him. He started having a pain in his side, went in for an x-ray (which was clear) and a CT SCAN. It comes back with a 9mm nodule in his right lung. What is it? They aren't sure yet. It could be scar tissue but the doctor does feel this is a tumor. Please pray for them that, in this case, the doctor is wrong.

This has just been a difficult last few days with so much going on. I can't seem to get Christine out of my mind. I mean she had fought so so hard. She was the definition of strength and just so sweet. Alhtough she has been fighting for her life, she accidently hit her life and everything just suddenly changed. Christine has done so much in her short life and she could never be forgotten. So many people were touched by this young girl's life.

Now, those of you that know me, know I am already a pretty protective (okay sometimes overly protective parent). I have always been that way since the day I gave birth to Sharayah in 1988. I try to keep everything clean and tidy so that sickness and accidents can be as avoided as possible. Still, Katia was diagnosed with leukemia 3 years ago.

We have lived our "new lives" in the hopes of making things as "normal" as can be for Katia, as well as Sharayah and Tatiana. Since Katia has never participated in Day Care or school, she really was only used to being around her family so THIS is normal to her. That I am thankful for.

Katia has gone through all sorts of different procedures, medicines, sicknesses and life-threatening moments that I don't think I could raise my "guards" any higher.

What scares me is Christine's family was the same way. This scares me. I can't help but to be scared. I have never been one to let fear run me or my family. That seems to have changed right now and I am trying to unchange it.

This weekend, I have not been able to get this out of my mind. I mean I don't want to fear all the "what if's" and follow Katia around like I don't trust her abilities. I want her to grow and become independent. I want her to become a more active, eager to try new things, and happy little girl. All I can do is pray for God's mercy and protection. One thing we have definitely learned through all of this is that prayers aren't always answered in the way we want. The reasonings are not always understandable. I just wish there were like a "Safe Card" we could have to make sure certain things just go our way. I mean, for any of our children.

I worry as much about Sharayah and Tatiana as much as I do Katia. The difference is, with Katia, I know more what to specifically worry about. With Sharayah and Tatiana, it is like everyone's life. Things can suddenly change, for the good or bad, at any given time.

I say all of this to say one thing. I don't like to worry, I mean overly worry. We all worry but this is that kind of worry that is just exausting and the kind that just seems to drain your emotional backbone. I DO have a lot of faith in God. What I lack sometimes is faith in myself at handling what He gives us. It is always said that God will not give you more than you can handle. But today, I thought, "That isn't true." The truth is "God will never give us more than we can handle WITH GOD AT OUR SIDE."

Thank you for all of your prayers for Katia's health, progress, tushy problems, happiness, and just everything. Thank you for all your "HUGS". They really do make me smile and her chuckle. Thank you for taking your time each day to do these things. Your time is valuable. I know this. I appreciate you.

Please pray for all Caringbridge families, any family facing tragedies, difficult decisions, etc. There are so many prayers needed. So many.



Love, Tracy














May 1, 2005 3:41 PM

Please keep Christine's family in your prayers today as they are having her services. I am sure they will have a beautiful service for Christine and all of those celebrating her life.

Also, not so long ago I told you about another person, Rafael, who was looking for a transplant match. He also had leukemia AML. This morning he passed away at All Children's. Myron went to meet with his family as we have been working with them recently on fund raisers and just trying to help them in any way we could. They were Spanish speaking and from South Florida. What a sweet family and what a sweet young man. This came as a shock to the family today. Please keep them in your prayers also as they have many things to sort out over these next few days and their lives to go on with in the absence of their son.

Love, Tracy








April 29, 2005 7:39 PM

Good evening.

I have come here a few times today to update but then something takes me away. These last few days have just seemed to be so emotionally draining.

I look at Katia and I just thank God for her. I thank God for allowing Sharayah and Tatiana to be healthy. Tatiana is set to meet with a neurologist on the 24th of May (long wait) for her back. Her back pain has just not gone away and the orthopedic doctor wanted her to see a neurologist. Tatiana puts up with a lot before she will give in and say she has a problem so we know she really doesn't feel well when she complains. I just wish kids never had to feel pain.

Katia has been having "one of those days". She has been pretty cranky. She has been very hard to keep happy today. She gets the point she doesn't know what she wants (but she is a girl so that is pretty normal). She has spent more of today having "break downs" than being happy. I know a lot has to do with her medicines and just her being worn down and tired. I look forward to a day when she can just go have a wonderful day doing normal things. Some day:)

For now, she wants to watch a movie and hopefully that will settle her down for the night. Please pray for everyone going through losses of family members, treatments, and just everything. Pray for the families of Alexia F. and Christine C. as they are planning the services for their daughters. Please pray for the families having to go through tough medical decisions when there are no promises either way.

Thank you for being such an uplifting part of our family and our days. I can definitely say, Caringbridge has been such a positive part of my days especially. You allow me to share my thoughts and you continue to check on and pray for our little Katia. We appreciate you.

I will really try to come back with a much more positive update next time. I promise:)

Love, Tracy








April 28, 2005 11:25 AM

Katia is asleep with 4 of her blankies, and I don't even know how many stuffed animals, on my bed right now. She comes in there every morning for her "rest time". I just sat and looked at her for a bit this morning. When I look at her, I see a miracle.

People that have known me, before Katia was diangosed, know that I am a pretty tough cookie. I can handle just about anything thrown my way. I thought so at least.

When Katia was diagnosed, my world changed. My inner being changed. I found out I wasn't as solid as I thought. Not just because of Katia but because we weren't the only ones going through this. There were so many families ahead of us and others yet to walk through the doors of "diangosis". There are many many ugly and terminal illnesses out there. I would have never known about most of them had we not been thrown into this. That is what it feels like. It feels like, one day, life as you know it is just snatched away and tossed into a trashcan like a brown bag of garbage. Your new, unplanned and definately unwanted life is then handed to you with no explinations or directions on how to live suddenly. Even if you were determined you would some day face this new life, there would be NO WAY to prepare yourself, your family or your sick loved one for this. No way.

When we stayed in the hospital for all those months, I never got used to it. I lived with it but I never could get used to waking up morning after morning surrounded by, I don't want to say dismay, but just uncertainty. As good as one person may be doing in the morning, everything can totally change by afternoon and we all knew it.

I wished so many times we would have been the last family ever to be hit with the news our child had cancer. I wished this drug would come forward and become an immunization against CANCER! All of it! Not just some types but that it would wipe that word off the face of the globe. Where is that d*^rug? People are waiting for it.

I have never asked "Why me?" or "Why us?" because we have never been alone in this. I have never felt like nobody understood or knew what we were going through. I can honestly say that. We were surrounded by too many who completely understood what we were going through because they were going through the same thing. Why them?

I keep up with a lot of families. I don't know how many but I know my daily routine is not complete without checking on others and praying for others. I don't always leave messages in the guestbooks (I wish I could each time) but I do read the updates and go to the photo albums and pray.

There are some very known Wish Organizations that grant wishes to terminally ill children. You can wish for a trip to meet a star or go to Disney or just about anything. It is great to see kids get their wishes granted. They are so eager to go and so happy and I see so many pictures on websites with the biggest and most sincere smiles. It warms my heart.

I wish there wasn't a need for Wish Organizations. I think they are great, don't get me wrong. I just wish for a cure to be found. I wish Children's Hospitals to some day just be there for broken arms and day surgeries. I wish families weren't torn apart by illness or tragedy.

The hardest thing in all of this is the uncertainty and the fact that all control is basically taken away from a parent. It is our duty to make our kids feel better and give them the medicine they need. When we were looking for Katia's Bone Marrow Match, I literally felt the absence of control. This was in someone else's hands. Someone that didn't even know Katia. Maybe someone that didn't even know what a person's marrow can be used for or a baby's umbilical cord could be used to save a life. When Katia's match was found, I knew it was a miracle. I wished right then and there that nobody else would ever ever have to wait for a match to be found. We knew Katia could have relapsed during that time, her health could have failed any afternoon and just taken the possibility of a transplant away. We knew that time was not on our side and that each day we were playing against the odds.

But, she is here with us. She is sleeping so pretty right now. She is happy. We are happy. She has her problems BUT it could be far worse.

Last night, when I learned that Christine had passed, I again asked, "Why?" She was supposed to be walking the "Survivor Lap" in the Relay for Life Walk this weekend.

All we can do is keeping going through each day and hoping and praying for miracles, research and involvement from everyone. There are many organizations out there doing research and looking for cures. I really believe there are a lot of miracles on the horizon for cancer and blood disorders. I hope so.

Katia's visit yesterday? We are looking into her urine cultures but the belief is this is just another GVHD flare up. Katia's doctor and I believe her GVHD has shown some improvement since Saturday and are just keeping a close eye on her symptoms. We aren't making any medicine changes at this time. I told Katia last night to just let me know when she hurts. She knows I can't make the pain go away but I don't want her to hold it in because that isn't right. It is amazing what a hug can do for her but it does make her feel better. At least I feel I still have some "MOMMY POWER" with her. When she is asleep, I hear her whine sometimes but for the most part, she is comfy and cozy so I let her sleep. She looks so cute and I don't want to disturb her.

Thank you for checking in on Katia and for praying for the prayer requests. I know there are a lot of people in need of prayer. Prayers make such a difference in ways we don't even know.

I am sorry to have been so long winded. But, hey you know me. I get a cup of coffee ready before I sit down to type so I guess readers should do the same;)


Love, Tracy










April 27, 2005 8:55 PM

Please pray for the family of Christine C. She passed away this afternoon after a very very courageous battle with cancer. Her family rallied beside her each step of the way.

I will update on Katia's visit in tomorrow's entry. Thank you for your prayers.

Love, Tracy


******************

April 27, 2005 10:55 AM

We are on our way out to clinic right now. Katia just isn't feeling great and her urine is giving her a lot of problems again plus it appears she has some type of a urinary tract infection again or yeast infection of some sort. Of course she is eager to go to clinic so she can feel better. At least she is willing to always go.

We had a lot of fun yesterday afternoon. She was playing well and laughing and just being herself. It was so nice to see that. Later in the afternoon and into the evening, she just started not feeling well. But, of course, in between any pain she was having, she was smiling and loving and just her happy self. Katia amazes me:)

Love, Tracy









April 26, 2005 1:51PM

First, please continue to pray for Christine in the hospital. My heart just goes out to them and I am just praying so hard that she will quickly recover from this.

Also, keep Jerry and your family in your prayers. Thank you so much for all of you that have registered as Marrow Donors in the past or now. You are helping to save lives.

We are watching Oobi, ALL DAY!! It is about a 20 minute episode that is on repeat.... Whatever keeps Katia happy. She is feeling better today. The idea of preventing her aches and pains from coming up seems to be working and I wish I had thought of it earlier. To me, her mouth seems to look like it is improving slightly so I hope this medicine is starting to work. The other side of Katia (the tushy) isn't showing much signs of improvement yet.

We also have a new shipment of the "Ladybug and the Dragon" books. Katia says we have to put them in the mail:) So, they will go out as soon as they are ordered. Katia has a ladybug stamp she is eager to use on outgoing mail:) She is my little helper. She has moved a few things to "better places" that I have been looking for. The thing is, she doesn't remember where she is relocating things... Plus she has a new "Katia's Things" bag that she is collecting things to fill it up and carry it around. Sometimes, generally all the time, these aren't her things so I try to catch the bag and get my stuff out of it.

I am just glad she is up and active:)

Well, I have babbled on enough.

Thank you for your prayers and support.

Love, Tracy








April 25, 2005 2:13 PM

Right now, Katia is going around here with her magic wand making everything "pretty" and singing. She is feeling pretty good right now. I started giving her the pain medicine around the clock (every 6 hours) instead of waiting for her to start hurting and then give it to her. She is happy to be feeling better. Hopefully things will kick in with her other meds and the problem with the GVHD will start clearing up as well as the added sores causing her so much pain. I just hate seeing her hurt BUT right now, she is happy:)

The picture at the top of the page (her looking out the window) was taken while she was actually pretty deep in thought. She didn't even see me take the picture and I took it a few times. I don't know what she was thinking but I know a lot runs through that mind that most 5 year olds don't think about. Katia is quite amazing in the way she deals with things and one way is thinking things through. I think she really tries to withdrawl and make things better with positive thinking. If something is wrong with me, it really helps me to just take a moment to myself and reflect and pray. I think she does the same thing.

Also, the bracelet and CD orders were shipped out today. So, for all of you getting your new "Ladybug Club Bracelets", welcome to the LADYBUG CLUB!!! We love seeing members signing in the guestbook. It is neat to Katia to have her little club:) Well, actually I guess it isn't so little anymore.

Please continue to pray for Christine and her family. I hate to see them going through this right now. What an awesome family! Please continue to pray for Bailee that she can come back to Tampa soon, from New York. Thank you for all of your prayers.

Also, I would love to hear from anyone who has ideas as to what I could add onto this page to make it better and more informative. I will see what I can do:)
tracy@ladybugkatia.com

Love, Tracy



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April 24, 2005 1:00 PM

First please pray for our friend, Christine C. Here is a small part from their journal update.

"Saturday night update:

Christine remains in critical condition in the ICU. David is with her for the next few hours so I could be with Katie. Thank God Grandma and Grandpa are in town staying with us. Small blessings everywhere!

They did the surgery last night to remove the blood vessel / swelling that was from the hematoma.
The biggest challenge she is facing right now are: low blood pressure, being on a ventilator, left pupil is dialated and unresponsive and infection. They think the pupils are due to the pressure of the swelling on her optic nerves. She responds to touch but is unable at this time to communicate with us. The nurses and staff are wonderful to her and our family. She is clearly in the best hands right now. Please continue to pray that she is able to recover quickly. We are not given a prognoses, just a lot of "time will tell". They are concerned that given the previous trauma to the brain with radiation and chemos that she is a high risk.
I will update after we meet with the neuro team tomorrow.
Thank you for the wonderful support! With our friends and church praying, we certainly are stronger for it!
Love, Cathy"

Things can happen so suddenly and it is so scary. Please keep Christine and her family in your prayers. I had no idea of this when we were there yesterday.

Katia's visit to ER went quickly. They did the tests they wanted to take and her doctor believes this is still just GVHD. We are REALLY praying her medicines will click into working.

Katia slept with us last night and it took her a good while to fall asleep. Her "tushy" was just really giving her grief and the pain medicine causes her to itch. I gave her Benedryl for the itching and that causes her pee to burn more so... she is just really tired of feeling bad. I count my blessings in many ways as I KNOW things could be worse. I never want to seem ungrateful for how well Katia IS doing. We are. We just hate to see her hurting in any way.

There are two families I would also like to ask you to pray for. I will share more about them later. One is about to undergo transplant for leukemia AML. The other just went through transplant for another genetic disorder. Him and his brother needed transplants. I will share more about them later as they need the prayers and support during this time. Neither has websites.

Well, Katia is all dressed up in her blue princess gown and wants to do a magic trick of some sort for me:) I should cut this short.

Please pray for Christine that she can recover from this fall to her head and the brain surgery. Please pray for her comfort and her parents as it is a very stressful time. Please pray for all of our friends that are going through treatments and / or recovering from treatments. Also please pray for those families that have lost their loved ones.

Love, Tracy








April 23, 2005 10:58 AM
Prayer request have been updated.

We are going to go in to see the doctor today. Katia needs to have her mouth tested to make sure it is only GVHD and not a flare up of something else going on.

The blood blister on her lip did pop last night so her lip looks better without that there. It was a big black blister and I figured it was going to pop as it started bleeding last night.

Katia has been pretty sleep lately but I really can't tell if it is being brought on by her pain meds or just being worn down from feeling bad.

Hopefully, by going in today we will find something to start treating and get her feeling better. Thank you for all of your prayers in the guestbook and just your ongoing concern. That warms our hearts more than you will ever know.

Love, Tracy

PS This is not a planned admit, we are just going through the ER to have the tests run. We should be right back home:)




April 22, 2005 11:42 AM

Sorry about no update yesterday. I guess I just really didn't have much good to share. Sometimes I feel like I drag down this page but Katia just hasn't felt well. I tell myself over and over that things could be worse but that really doesn't help when Katia is screaming because she hurts. That just breaks my heart. As a mom, I will never be able to accept Katia in pain.

Katia's mouth just looks so painful. I didn't even looked inside yesterday to see what her cheeks and tongue looks like because her lips just are so sore looking with big sores, red with blood. I feel so so bad for her.

Same thing with her "tushy". I didn't even bug her to look at it yesterday. She is on Mineral Oil and her bowels are nice and soft and shouldn't cause her pain but when she went yesterday, she was screaming so hard she was turning blue trying to hold her breath. She WANTS to feel better so bad and we want her to feel better. I know that as we try things, we have to allow time to see if it is going to work but I just wish the FIRST thing we tried is what worked.

I want to thank you for your prayers. I know we are all praying for Katia's pain to go away and the GVHD to be cured but our prayers don't always get answered in the way we want. I can tell you that prayers help. Katia can play 10 minutes after facing that much pain. She isn't up and about but she is happily playing with some toys while she is sitting on the sofa watching movies. I remember when we were in the hospital day in and day out, I thought, "This would be so much better if she could just spend this time in her home, even if it is on the sofa or the porch swing." Well here she is, on the sofa. Things could be worse by her having to be admitted for this. I don't know what this will turn into as far as admits and treatment and how to treat her pain, but I do know we are grateful (so is she) that she is home today.

Yesterday, I tried to spend as much time, right next to her as possible. She did tell me, "You didn't vacume today." Is that my daughter or what! So, I did vacume and straighten up and wipe down the kitchen and bathrooms. That is a must in my day.

I enjoy spending time with Katia. She is very appreciative of so many things that I learn from her ways. We were watching some of the past news interviews yesterday, when we were searching for her marrow match. I get so teary eyed and she keeps asking, "What is wrong." She doesn't quite understand "tears of happiness" yet but I am just so grateful that she is here with us due to someone's unselfish generosity.

The other day, Myron got her "The Incredibles" and we watched it yesterday. She said something about wanting to be like a Super Hero. She is:)

Well, I get choked up too easy these days...

Love, Tracy









April 20, 2005 12:46 PM

When I signed on just now, Katia says, "We need a new picture!" Okay, so I will get to that in a bit:)

I am kind of in a fog today because I was literally up all night. Don't you hate those nights that you just can't sleep? I get things on my mind and it is all I could do to not jump up and start researching some ideas:) I did TRY to sleep.

Katia is doing pretty well today. She did get up to see Oobi. For those of you who don't know what Oobi is, it is a show on Noggin Channel. Oobi is a hand with eyes. Literally they are just people's hands with plastic eyes stuck on them and they talk and sing, etc. She is VERY amused by them and for a while, Sharayah and Tatiana were very amused as well. When I was little, the shows I LOVED were Sesame Street (always a classic) and Romper Room. I loved learning:)

Well, I promised Katia to watch Oobi with her and she owns me today. I said the whole day would be hers. So, I have stayed away from the computer (for the most part) and pretty well slacked on housework today.

Katia's mouth is still quite irritated and she pretty much refuses to take medicine for it saying it isn't working anyway. Please pray this lineup of medicines will kick into action this week so she will feel better and we won't have to change medicines again. Two other ideas are Thalidomide or a process called Photopheresis. I have to say, I learn a lot through Katia's treatments and concerns that come up.

Well, I started this nearly an hour ago so I better finish up:) I keep getting up and down to do things and I am going to lose my entry.

Thank you for your prayers. Thank you for checking on Katia.

Love, Tracy



April 19, 2005 6:30PM

Good day:)

Katia's day didn't start until 1:30 PM!!! She slept and slept and slept. Tomorrow she says she won't sleep so much because she missed Oobi (show on Noggin Channel) so she has to be up for that. Sleeping is good for her though:)

The rest of the results from Katia's clinic visit came in last night, except the final urine. Her immune count has gone from 657 down to 580? Not sure what to think about that as it should be going up. A good thing is her Creatinine Clearance test came back showing good kidney functions although she only had 260cc worth to hand in over 24 hours. She is drinking quite a bit so hopefully it will start flushing out. I do think the urine culture will come back positive though.

Let's see, what else? Not much else to speak of. I have just been tying up a few lose ends on some projects around here. It is nice to finish things off. I am not someone who can be idle for long.

Well, dinner is calling:) Myron is making spaghetti tonight so Katia is on the extremely happy side about that!

I also want to share with you this link about Jerry, it is a news story that explains things with his treatment and where he stands right now. It shows family footage and is a good segment. We are so praying for a match for Jerry as his time is sadly running out.

Jerry's News Segment



Love, Tracy





April 18, 2005 2:50 PM
WBC 5.8
HGB 13.0
PLT 250
ANC 3600

The appointment went well and Katia was happy to hand in her 24 hours worth of urine (on ice) to the clinic. We will hear back from that sometime over the next few days I guess. Haven't had to do that for quite a while. We also handed in another urine test to check for urinary infections or anything. Something is up so hopefully this will give the answer.

We have gone up in the amount of her pain med and basically left everything else the same (for GVHD) to give it a bit more time to work. Hopefully it will. If not, there are a few more ideas. We did see why Katia's bottom is so sore (poor thing) and hopefully this will get better as the medicines more get into her system. Her mouth looks quite red and irritated and her lips look quite bad also. Katia's eyes have stayed about the same with flaring up and looking better sometimes. I really hope the mix of meds she is on right now will do the job and take care of Katia. I do want to stress, it could be a lot worse than this. Katia hurts and has GVHD but at least it isn't showing that it is into any of her internal organs. We want her to get better but we also count our blessings.

Good news is her hearing is good and she had a lot of fun taking the tests:)

Her "report card" (labs) looked good today. I am more concerned when things start bouncing around even if they are staying the "normal" ranges, but they haven't been doing that for the most part. Her ANC count easily fluctuates and isn't really something we can go by. We more go by the counts of her T-cells and B-cells and will check that every so often to see how her immune system is building. When they feel she is ready, she will have to redo her immunizations since she has none due to bone marrow transplant. She doesn't have any of the immunizations she had from birth. They are gone as well as any antibodies she herself built up through colds and other illnesses. That is why it is more to look into than just her counts.

We told Katia's doctor she had a Happy Meal (stopped there since we love to see her reaction) and then we explained to her that it hadn't been cooked and was still in a frozen state:) Katia looked like she was in trouble. But, she is happy her doctor "put more strawberries in her strawberry medicine" (upped the dose of her pain meds). That was her main concern today. She is tired of hurting and when your tushy hurts, things are just miserable!

Well, when we have clinic, I have a lot to catch up on when I get home. You know, as my kids say, "With my OCD, I have to have everything in order..." Aren't they funny? One of them will turn out like me. Right? I hope so:)

Love, Tracy




************

April 17, 2005 10:30 PM

Sorry I am so late. This has just been a long day, at the end of a long weekend...

We seem to have so many things going on right now and are trying to catch up and get ready for upcoming drives and (well I won't go on).

Katia is doing okay. She is pretty puffy looking and I noticed today that she is hardly peeing. We have been collecting her urine all day for the Creatine Clearance test and I would say I have less than 1/10 of what she should be peeing over a day. She started at 7:45 AM and then didn't do anything again until I made her around 3PM and that was just a few little drops. She is saying it hurts so... I don't know. But, she is puffy.

Tomorrow, I know we are going to be making some more medicine changes for her GVHD, pain and itching. She just hasn't been a happy little camper right now. Please pray we can get her back on track.

I will update as soon as I get home tomorrow with her labs. I am praying they are all still in order.

Thank you so much for keeping this family in your prayers. I am sorry I haven't gotten around to any other sites today. I am just finishing a project here and then I am going to CRASH:)

Love, Tracy








April 16, 2005 2:41 PM

Today is a day like no other!

Right now, Ms. Katia is licking her little chops. Guess what she had today?



That is right!!!

No we haven't been released to do this. There has been no changes in her restrictions. How did this happen?

Well, we went to a drive today (well I did) and one of our newest friends, Melanie, who helped get this drive together with Beef O Brady's HOOKED KATIA UP!!! The food inside the Happy Meal Box was frozen, having never been cooked at McDonalds yet (nothing against the wonderful McDonald Restaurant!) so we just had to come home, "NUKE IT" as we say and there it was, a Happy Meal! Two toys inside! Chicken Nuggets and French Fries all in a nice little Happy Meal Box!

We have done our share of Chicken Nuggets around here. Myron has even gone the extra mile of getting the little nugget boxes from McDonalds but this was ACTUALLY MCDONALD FOOD!

Right now, Katia is playing with her new little dog and cat friends in the Happy Meal Box.

The Beef O Brady Pancake Breakfast was to raise money for the Breast Cancer Three Day Walk and the National Marrow Donor Program and the Katia Solomon Foundation hosted the drive. If you would like to help these drives continue (right now we are holding a few a week), please visit The Katia Solomon Foundation to see how you can make a donation. Each drive has to be funded and we want to keep them going. This is not a large Foundation. It is run all on a volunteer basis by our family and some very dear friends. Each person that registers is another opportunity to save a life, like Katia's. Please help us continue these drives by visiting the KSF site. Every donation, no matter how small, helps us to continue. Every donation goes directly into further helping.

The drive today brought 53 new people to the registry in just 3 hours. Such great people. I met another family out there who has a daughter battling Stage 4 Neuroblastoma. What an awesome family and little girl, Sydney. She is 8 and battling Stage 4 Neuroblastoma. I am sure she would love you to visither and leave her a message:) Her parents both registered as Marrow Donors today.

Jerry still does not have his match. I will update on his condition at the beginning of the week when I know more. By you coming here, you are already helping so much in so many different ways. Number one, you are following a cancer survivor's story and learning about her everyday life and treatment. So many of you pass on this website to others. I know many of you who have registered as marrow donor, regularly give blood and platelets, donate to research and drives, help with the Treasure Box and just so much more. If you don't already have Katia's Ladybug Club Bracelet or the Ladybug and the Dragon book they are great ways to share Katia's story with others and therefore bring much needed awareness to this fight and how others can really help save lives.

Thank you:)

Love, Tracy















April 15, 2005 3:40 PM

If you haven't read last night's update, you can find out what this day signifies by reading the entry.

Katia has not been having a good day to day, not at all. She is unusually clingy to me. Her bottom is really bothering her more and more as well as her mouth. She doesn't like her pain medicine anymore because she says it doesn't work. She is also having problems blood in her stools which I think is something happening (not to be grose) but during the bowel movement itself. She is pretty miserable right now and has been all morning and day.

She is doing her mouthwashes hoping they will help her tongue and mouth. She is so willing to try anything right now. I have one mouthwash, that she has done the last few days, that used to would basically numb her mouth back during transplant. It isn't doing anything for her either.

She is mad and she doesn't want me to have to take her in but she is upset that she does her medicines and she still hurts. She really tries so hard to act like she doesn't but then she just burst into tears. I can tell, by looking at her, when she is in pain because her chest is bigger like she is holding her breath.

She is pretty much trying to sit on the sofa, covered up and watch TV for the most part of today. That does seem to ease her mind. I have never seen someone with such a strong will as Katia. She will ask me for hugs to make her feel better or kisses. I am more than happy to give them but I wish I was doing it for different reasons. Somehow, hugs and kisses do make her feel better.

So, please just pray for her to be able to stay away from so much pain. She goes to clinic on Monday for her regular labs and a hearing test (which she is looking forward to). Plus we will hand in the urine from her 24 hour Creatinine Clearance test and, since her urine is also burning her, a seperate urine specimen.

Tomorrow, I am planning to participate in a Marrow/blood drive at Beef O' Brady's so hopefully a lot of people will register:)

Thank you for your prayers:)

Love, Tracy







April 14, 2005 8:41 PM

Three years ago today, we had quite a lot on mind about Katia. We were in Tampa General fighting Menengitis. At the time, we didn't know if it was viral or bacterial plus Katia was recovering from an embolism on the tumor in her right eye. She had been from doctor to doctor, everyone poking and probing at her. We felt hopeless and just lost. It was our first nights in the hospital (little did we know). Katia had been battling the tumor in her eye since January and we were looking at having final surgeries in the weeks to come and have that behind us.

April 15, 2002 around 1PM we got the worse news we could have never imagined! I knew it was bad when they came in the room, a few doctors and asked if I wanted to sit down. I was getting pretty known at that hospital as one NOT to sit. I paced back and forth in Katia's room. Myron had taken Sharayah on an errand and one of my friends was with me. When they told me, I held myself together and asked what was next? What do we do? Then I had to call Myron.

Katia was in an ambulance to All Children's almost immediately. Katia and I in the ambulance, Myron behind in the car and Sharayah and Tatiana on their way to my sisters. I get tears just typing this as I knew on our way over that bridge to St. Pete, our life would never be the same and we were NOT promised the luxury we thought we had of watching Katia grow up. My heart was sinking and I knew I couldn't fall apart, not then. When?

I had never been on the cancer ward of a hospital. I had seen them on TV but when we walked up there, my heart sank, knowing we belonged there. I knew enough about leukemia to know there was going to be a lot of drugs, a lot of tests and no promises coming our way, coming Katia's way. Our 2 year old baby was about to face a nightmare nobody should have to face.

One thing I noticed right off was other kids and some were even smiling. That gave me assurance. I have met some wonderful, absolutely the most courageous people on that floor! I have met people I will never forget even though they are no longer with us. I can remember the look of the hallways, the smell of 2SW (it was clean) and the looks on the nurses faces as they rolled Katia toward her room. I never could have imagined what the last 3 years would have brought us but I have learned so much. I have found such warm and loving people. I have found a faith I didn't know I had. I have found a true appreciation for the mornings, the afternoons and each night. I have learned what sacrifice is that some things can't be sacrificed. I have learned that you can't sacrifice family for material goods and you have to sacrifice your time to others. Even when you think things are at their worst, it is worst for someone else.

I have learned (well I knew but I know it more) that I married the exact person God wanted me to marry. I could not imagine going through this without Myron. I also learned that my older girls could be very responsible and a great support to Katia and myself. I learned I could lean on them when I needed to. I learned my true friendships. I learned so much in a couple of days that I thought my head would pop!

I learned that by sharing my thoughts and fears with others, I would not only gain but be of help. Trust, me I gain from this journaling. I have learned so much. In all of this, I have learned more from Katia than I think she could possibly learn from me in 100 years! I learned gave birth to an Angel from God and He blessed us with her. Katia is 98 percent Angel and, well the other 2 percent? That is our little secret:)

Sorry to go on and on but as you can see this has been an emotional roller coaster. As much as I would love to get off the ride, I am grateful for what I have learned and for all of those I have met. I am grateful God has given us the opportunity to reach out to others and to educate our communities.

I am grateful to have Katia tugging on my shirt asking for pie as I type this:)

Love, Tracy








April 14, 2005 11:17

New pictures finally:)

I will be back later but I wanted to get those posted:)

Love, Tracy



April 13, 2005 12:23 PM

Good day:)

I am glad everyone is enjoying the different songs linked to play. You can also now hear "Rain" by going to the "Leave Her Alone" link. I know alot of you have been able to hear small parts of it but this is the whole song.

I am about to go through a lot of the prayer links and see what I need to update but please keep Rachel H. in your prayers. There are so many things going on with her and decisions to be made about her treatments. My heart goes out to this family right now.

I have a lot of updating to do. There have just been so many things going on lately but I promise I will get to it:)

Katia is pretty clingy today so I am typing this with her hanging on my arm... I am going to keep this short so I can get her taken care of. I really think Katia is going to be a doctor some day and she is going to be one of the BEST! She has such a good heart and she hasn't given up on the idea of someday helping other kids.

I want to also thank each of you that has sent "treasures" for the Treasure Box. There has been such a good assortment of stuff to come in here. I try to divide things up for girls and boys and different age groups and make each bag sent a good mix of things. I do know it is making smiles:)

Well, Katia wants her Mac & Cheese so I better run. Tummy is grumbling.

Love, Tracy




**************


April 12, 2005 7:00 PM

First, I want to say thank you to my sweet neighbor/friend who gave me a gift certificate for a massage. Do you know when she gave it to me? My birthday in AUGUST!! Well, I just was able to use it and OH MY GOSH!!! That was super! My back has been so bad, along with my neck, arms, and just about every piece of me. This was just fantastic and I think she worked out all the kinks! I am amazed at the gift some people have for making others feel so much better. I don't say much about how I feel on here, I leave this page to things about Katia. But, I just had to say this because I get emails asking how am I doing, feeling and I so much appreciate your caring and your prayers. Anne, thank you!!!

Do you remember that lovely chair I slept in for 8 months? (Not that I am complaining-I liked my chair) Well, I have to say it isn't that friendly on the back. I guess for the most part, being in it for a few days at a time wouldn't be bad but...
You know? The last time we were admitted, in February, I curled up in the bed and went right to sleep. Katia was all happy that I got to sleep in "my chair" so I guess that is the best way to look at it.

Katia is doing well. I think she has a UTI coming back that she is trying to not tell me about. She used to take Cipro twice a day to help those stay away but then we went to once a day. She is going to do a kidney function test for this coming clinic visit so I think I need to bottle up an extra bit of urine for a urine culture.

Her bottom and mouth? Well this morning they seemed worse but right now, they seem to be okay. Her mouth looks bad but she isn't complaining that it hurts. I can usually tell by how she eats her dinner and that is coming up.

I need to go check some email and finish up a few things. We are working on getting this song and its cover complete in the coming week. I CAN'T WAIT FOR IT TO BE AVAILABLE!! It sounds so great!! Katia is very pleased to hear herself:) Sharayah and Tatiana have a part in it too. No hints but it is really great:) I can say that because I didn't have anything to do with the singing. I can brag about them and the others that are featured on the song. GREAT:)

Well, that is all for now. I know I said I have something to share with you but I am waiting for the final word:)

Love, Tracy







April 11, 2005 6:56 PM

Sorry I am so late today. I just have felt worn out. I did go out and do a little (nothing hard) yard work today. I think the sun just really got to me. Then we had a complete meltdown today (by we, I mean Katia) because she couldn't find the "brown shirt". It was beginning to stress me out because I really didn't know what could have happened to it. Well, you will be happy to know, it was located. It had been made into the bed when the bed was made. The only reason I even thought to look there was I had done that once with my keys years ago and was about to miss work when I flopped on my bed to sulk and low and behold, there they were right under my hand!!

Katia is still having quite a bit of bottom pain which I thought would be lessening by now but we will hold out for a few more days to see if it will improve. Her mouth still looks the same also. She is tired of me looking at it because she says it is sore to open her mouth. She tells her new pill (the one we hope will fix the GVHD) to fix her "tushy".

We have some upcoming drives that we are working on. Hopefully many people will register and we are so hoping and praying for Jerry to find his match either by our drives or other drives going on. If you aren't part of the National Marrow Donor Registry please join. Without a transplant, Jerry doesn't have much time left and his family really needs him. He is such an awesome person and there are so many others, like him, that are waiting for their match to join the registry. You can either call 1-800-Marrow-2 and tell them you are interested in joining or by going through your local blood services office.

For those of you who have kept up with Katie B., you know she was awaiting a match for transplant while she was in remission. Well, she relapsed while waiting. Now, I am not sure what their treatment plans are. She is on her Wish Trip to Disney right now. When Katia relapsed in August 2003, she quickly regained her remission but then there was the wait for the match. If she had relapsed while waiting, due to the agressiveness of her cancer, there wouldn't have been more that could be done. Thankful, she held her remission and we found a match in December 2003. I cannot tell you how nervous I was during the search for a match.

Well, I better close this out. My computer has been acting "strange" today. Do you remember the days of writing journals in books, actually putting a stamp on a letter and having to pick up the phone to talk to friends and family?

Also, I have been after Katia about getting a new picture up there:) Maybe she needs to hear it from you to let me take a picture of something other than the top or back of her head.

I do have some news to share with you in the next few days but I want to have the final word on it first. Hint: It is not another little Solomon:)

Love, Tracy


PS Have you heard the "Rain" song? If not, you can email me for the link:)






April 10, 2005 8:40 PM

I thought I would share this with you so you know about one of the songs on the "Rain" Album. I wanted to share with you a little about the LOVE in this album.

I can't think of the exact night as there have been many like this. Myron had come to the hospital with Sharayah and Tatiana and Katia was just miserable!! No matter what we did, it didn't seem to make her feel better. She would try to cheer up, as she always did, so she could play with her sisters and love on daddy:)

Myron was just so heartbroken when he left there because Katia was just so sore and unhappy and she really didn't understand why, nor did we for that matter. Cancer treatment is supposed to help you but for the most part, it just makes you feel so bad that it is hard to understand how it is supposed to help, especially to a Toddler.

So, Myron came home and wrote this song. I wanted to share it with you. This is one of the songs on the "Rain" album.

"Leave Her Alone"
By Myron


Love, Tracy







April 10, 2005 1:30 PM

Good day:)

Well today, I am trying to catch up on a few things. I feel so much better when things are "in order". Katia is doing well. That medicine (CellCept) has not gone into effect yet and we are waiting for it to help her mouth and bottom. She, however, is in a good mood. She is good about telling me when she hurts and that she needs her "Strawberry Medicine" (Roxicodone). She hasn't been trying to hide pain from me so that is good. There are certain things she won't eat because of her mouth but she is holding on to her weight. Although the steroids aren't good to be on, I am glad she has picked up some weight while on them. It just makes her look better and not so frail and breakable. She has a skirt on today and she was posing in my mirrow and said, "My legs look pretty!" I had to agree. They have nice little muscles on them:)

I can't believe the end of another school year is around the corner now. The girls get report cards on Monday and then they only have this last grading period to finish out.

Last night, we got to go to the Annual Joe Perillo Golf Tournament and it was so nice to see some people that I haven't seen for 2 years. Katia was the honorary beneficiary 2 years ago. Last year, we were at the Ronald McDonald House and didn't get to attend. This year I was just so grateful because of all Katia has been through. It was like a milestone of time that has passed. I look at Katia and I see a miracle!!

Love, Tracy

PS There are only a limited few of the "Rain" Album left.









April 9, 2005 11:57 AM

"Today..is the tomorrow
You worried about..yesterday"

I like that saying:)

Love, Tracy



*******************

April 8, 2005 (add on to today's update below)

A few people have asked about putting Katia Solomon Foundation on their websites. Here is the information to do so.







**If you would like to post a Katia Solomon Foundation banner to put on your site (there are a few to chose from), Click Here. I will send you the link and it would not take up any of your site's bandwith space. This would help us to reach more people.**



Thank you:)








April 8, 2005 12:54 PM


I am working on getting back on schedule so I am here earlier today:)

Please see the prayer request above for some changes that have been made. Benjamin has earned his angel wings. I know so many of us prayed for a miracle with Benjamin and his parents and family must miss him so very very much.

I answered an email this morning about "How does my heart let me keep up with so many sick children?" Well, I have one of those children and I appreciate so much people keeping up with Katia. I know prayers give us strength each day and that God has worked miracles with Katia. I also learn from each person that I follow. I learn about love, compassion, endurance, fight, courage, faith, family, prayers, loyalty, and so much more. I think that everyone comes into our life for a reason. Whether it be through our day to day lives, the Internet, a Prayer Request at church, someone on the news, etc. Before Katia was diagnosed, I had compassion toward illness and disease but I didn't realize how it changed a person's life and their family's life so much. Now I do. Because of this, that is why I felt the need to not only follow other people but to share their fight with those coming to Katia's page. These, and so many others, are such courageous and brave fighters. I look at Katia and think, "Do I have that kind of fight in me?" I see her go through so much and still smile most of the time. I see her get so happy over such little triumphs and events. As a parent, I want to show Katia the WORLD!!! As a child, she is showing me the world and there is to love and appreciate within the world.


So, does it break my heart to follow these other children and adults via the Internet and Caringbridge? Does it break my heart to see other patients and families in the hospital fighting for their lives? Yes, over and over but I think it also strengthens me. I also get to see a lot of miracles and triumphs. I get to see a lot of people finish treatments, grow their hair back and go on with life. I see so much compassion from "strangers" and so many medical treatments being researched and proving advancements. My life has definitely changed BUT in both bad and good ways. I could not imagine going through this alone and I don't have to. I don't think anyone should. Life is not easy whether you are battling disease or not. Life is full of ups and downs. I think through all of this I have learned to have a lot more faith in God, the goodness of others, and prayer.

Thank you for being a part of these experiences. Thank you to all of those who have passed Katia's story and website along. Thank you so much for being there for Katia and our family through the bad times as well as the good times. You have continued to check on her through the hardest of times and the times of simple day to day living. I appreciate that. WE appreciate that.

Love, Tracy:)




**********************

April 7, 2005 1:30 PM

Sorry for no update yesterday. Things just got busy. Katia's bottom (she says to call it her "tushy") has been giving her quite a few problems. Nothing external, all internal. But very sore nonetheless.

She did start the CellCept yesterday and changed the way she takes her Acyclovir twice a day. She is quite happy with the new pills. One is blue and the other is orange and green. She takes her pills very well. I think she has about 12-14 pills per day (depending on what day of the week it is) plus her liquid medicines. She has also started doing her mouthwash better (holding it in for almost a minute). I have to say, Katia makes it easy to take care of her.

Other than her tushy and her mouth, she is doing okay. She is still sleeping about 12 hours a day but she needs that and plays well when she is up:)

Thank you so much for checking on her and I am so sorry I didn't update yesterday. I thought about it last night. Well, she needs help with something:)

Love, Tracy








April 5, 2005 2:20 PM

Good day:)

First, I have to say thank you for all the wonderful comments on "Katia's Song". Let me give you a brief history on it. Myron was writing that song when Katia relapsed in August 2003. He completed and produced it in October 2003. At first it was released as a single album with the "Thank You" song on the same CD. We handed out a lot of the copies for free at the Marrow Drives we were holding to try to find Katia a marrow match. The song was played on a few radio stations which brought a lot of people out to the drives. That "Katia Song" as well as the "Thank You" song is on the "Rain" album. At this time, there are only a limited amount of these albums still available. The album has 12 songs.

This album, of course, is Katia's favorite music so we listen to it anytime we are going to and from clinic. It has brought her a lot of peace during the times daddy couldn't be at the hospital and we definitely believe music is healing.

How is Ms. Katia today? Well she is kind of cranky but mainly due to her mouth. As far as Katia's weight right now, we are quite happy with her weight. Remember she had gotten down to 26 pounds not too long ago and since she was put back on steroids, she has gotten up to 34 pounds. She will be weaned off her steroids again starting in about 3 to 4 weeks. What will her weight do? Well, we don't know but she will most likely lose some again. I have gotten quite a few emails about Katia's weight. So, I will just answer it here. Some children are just "small". Tatiana was one of those kids. She still is basically. If Katia was just petite and small, that would be okay but she does need to be able to maintain a certain weight (at least around 30 pounds) to be able to take all the medicine she has to take and it not destroy her stomach and body. When Katia was diagnosed and then again when she relapsed, she weighed around the same as she does right now, mind you this was at the ages of 2 and 3. That weight helped her to withstand the chemo and treatments and the fact she would go through times of nausea and not eating. It gave her a small amount of weight she could lose without it being such a bad thing. She didn't eat or drink, at all, from September 2003 to March 2004 but she was getting IV nutrients during that time, TPN and Lipids. During all of this time, she also maintained her weight, quite well actually. So, the important reason for Katia to maintain her weight is to be able to continue her medicines and treatments without it doing more damage to her body. One thing people say that is quite true is one thing that is harder on the body than cancer, is cancer treatment. Katia is still on quite a few medicines each day which, we hope, with time will diminish.

I always appreciate questions. I think questions help us to learn and understand. I ask so many questions, you would think I am a journalist:) If I don't have an answer for something, I am more than willing to say, "I don't know" but I will definitely research it and find the answer if possible. "Half of knowledge is knowing where to find it." My kids would probably roll their eyes at that since there here it so much.

Well, it seems that Katia will start the CellCept tomorrow. I just talked to the pharmacy and it had to be ordered (I expected that) so it should come in tomorrow. I really really pray this will work and Katia's mouth and bottom pain will go away. Thank you for all your prayers and for following the prayer request above.

Love, Tracy











April 4, 2005 6:42 PM
WBC 5.9
HGB 13.0
PLT 272
ANC 2900
Weight 15.1kg. (33 pounds)
Height 95.6 (3ft 1 inch)

We also looked up all her info from August 2003 today to see how much she has grown since then. Well... hardly any. She was 93.7 centimeters back then which is 3 feet tall. She has had quite a bit of chemo, spinal chemo, brain and spinal radiation but she looks different. She just doesn't look so much like a "baby" anymore although she is still the same size as she was when she was 3. That is okay. It makes it easy to pick her up:)

Did I not update yesterday? HUM?

I have also updated SOME of the prayer request today but I haven't gotten too much done as today was quite busy.

We went to clinic and got home around 3PM. She had a Dacluzimab Infusion today (didn't know about that) and then we had an EKG and an ECHO done of her heart. I haven't heard anything but I think everything looked okay by what I saw on the screen. It just made for a long day but that is okay. She is home and I am happy with that:)

We also will be starting CellCept which is another immunosupressant. She was on this after transplant but it was discontinued because it was thought to be holding back her marrow from producing. It will probably knock her counts down but we are hoping this will be the answer for the GVHD and will start to wean her from steroids in about 3 to 4 weeks, depending on how she responds. Her mouth is really bad right now so we are going to try to get her to do a mouthwash. She usually just gets it rubbed around in her mouth but she is willing to try to hold it in (it taste nasty). Her bottom pain? GVHD. It appears it has gone down her intestinal track and such and caused irritation so hopefully this will help her mouth, eyes and bottom. She had some more GVHD on her neck today also but that wasn't bothering her. It will take about 3 weeks for the Cellcept to start working so right now, we wait.

You know? It could be a lot worse than this. I am grateful there is no GVHD in her stomach, liver, kidneys, heart, etc. When you have a bone marrow transplant, it affects all your body, all your organs, etc. Katia could be a lot worse than she is and each day with her is already a gift and we know that. We are grateful to God for each day and we are grateful to the doctors for their ongoing care and study into her changing needs. I have said many times before but Katia goes to a great hospital and has awesome doctors, nurses and hospital staff to always take care of her. We are very blessed with everyone there.

We also got to see Kelly M. today. Hopefully she will be able to come home tomorrow and start a new round of chemo and feeding plan with her new feeding tube. She looked really good.

Bailee and her mom had a very rough weekend due to the loss of some patients around them. That is so hard and something you can never get used to. I always try to think about the fact that each person loves their child just like we love ours. Age doesn't make a difference, the disease and prognosis doesn't make a difference. Everyone is fighting to live equally. So, please pray for Bailee and Robyn's emotions right now.

Well, it is late and I am sorry this update took so long. I really thought I updated yesterday but I didn't feel well and I guess I didn't?

Myron participated in a big Italian Festival yesterday and Saturday. He was one of the judges for their "Italian Idol". He said everyone sung very well. There are so many talented people.

Thank you for all your compliments on "Katia's Song". The "Rain" Album for purchase. It has the "Katia Song" as well as 11 other songs. "Rain", "Come on Back to Me", "Follow Me", "Thank You", "Lady in Red", "America Song" and more.

Well I better get to some emails and finish dinner. Can you tell? I am a multi-tasker:)

Love, Tracy









April 2, 2005 6:01 PM

Well, I thought of something:) I think a lot!!

Anyway, I got to thinking of how much I miss the Prayer Request being on Katia's page as it is very important to me to keep those active and keep people praying for others like people pray for Katia SO, I thought, I can put the prayer request but just not link them to be clicked on. That way we are "meeting half way".

So, the prayer request are back above:)

Love, Tracy



April 2, 2005 3:15 PM

I have been watching the news constantly it seems over these last few weeks. As I type this, Pope John Paul II has just passed, 9:37 PM Rome time at the age of 84. What a tremendous and caring person. Over the last few days they have given so much history on the Pope along with an outpouring of prayers, respect and honor.

As our world changes and people pass, it makes each day seem so much more. I was listening to Nancy Reagan being interviewed last night about the passing of Ronald Reagan and the gravely ill condition of the Pope. Larry King asked her something about how it made her feel to see so many people around her passing as she herself gets older. She said it makes her appreciate each day and see how we should make each day count. I am not wording that word for word (I wish I had that type of memory) but something to that effect.

That is very true. None of us know what tomorrow will bring but we each have been given the GIFT of today. All of us can't be heroes and icons in society but we can each make a difference, no matter how small or big it may be, it is a difference.

The Pope passed as I was signing on here to update so I will leave the update for tomorrow or later on tonight.

There is something Katia and I put together for each of you in "not so warm weather" from us here in the Florida Sunshine. We wanted to somehow share this with you. You can scroll up the site until you see our gift:)

Love, Tracy and Katia




















**********

April 1, 2005 4:35 PM
2nd update today...


I know that many of you follow what is going on with The Katia Solomon Foundation. We have had a few recent drives and we have quite a bit more coming up. Please visitThe Katia Solomon Fondation Page to see some recent changes that have been going on in keeping these drives going.

If you have any other questions, please feel free to E-Mail me.

Thank you so much. If you would like to post this on your sites, you have my permission or if you would like a Katia Solomon Foundation banner to put on your site, you can email me about that also. I will send you the link and it would not take up any of your site's bandwith space.

Thank you so much.

Love, Tracy

PS Is anyone having trouble pulling up the Katia Solomon Foundation Page? Please let me know. I don't know if there is a server problem or something I need to fix.









April 1, 2005 11:00 AM (I am adding new pics to the Photo Album links too- see bottom of web page)

Where is this year going? I can't believe it is already April!! Pretty soon, school will be out for the summer here, it will be fall, Thanksgiving and then Christmas!

I don't remember time passing this fast when I was younger.

Katia is still asleep!! She should be growing by leaps and bounds with all the sleep she is currently getting. It makes the house so quiet. I even went and bugged her a little bit but she just wanted to sleep. She did get up earlier and have her breakfast and medicine but she said she wasn't ready to wake up and play yet. So, she crawled back into bed, brown shirt and all, and went back to sleep.

I have the news on and am listening to the information about the Pope. These last few weeks have just been full of so much heartache on the news here in Florida. We had the Jessica Lunsford disappearance, Terry Schiavo and now the Pope. Someone asked the other day about how close the hospice center, that Terry Schiavo was at, to us. Well it is actually over by the hospital, which is about 45 minutes from us. I am not usually one to watch the news or read the paper. I do catch up with the news online however. There are so many things in the news that just point at the need for us to live each day in appreciation. Each day is a gift in our lives and we can make each day count somehow.

The friends I got to see the other night, they get to keep up with our family through the website. Somebody asked if I had been in communication. Yes, I have kept up with both via email. They are the kind of friends that you can just pick up where you left off with though. It was great to see them! One of them is a teacher up north. Through her keeping up with Katia's page, she noticed one of the prayer request and realized it was the brother of one of her students. What a small world! There have been a few different times that links have crossed with people I know actually meeting or knowing someone I keep up with via their website.

Please keep our friends in your prayers. If you have questions about people you used to follow via Katia's links, please E-Mail me and I will get back with you within 24 hours.

Thank you for your ongoing prayers. Also there will be a special promotional offer on the "Ladybug and the Dragon" books (listed above the journals with the bracelets). That should be up and going by noon. It will be a limited time offer while the supplies last. This is a way you can share Katia's story and the need for Marrow Donors with those that don't have Internet Connection or just to give to your friends and family.

I told Katia last night that we HAVE to work on getting some new pictures to put on her site so later today, I will change some out with fresh new pictures I hope:)

Love, Tracy








March 31, 2005 5:07 PM

Okay, I am feeling better today:) I just have some of those dumpy days when I get a little over consumed with things going on and my inability to just "fix things".

Katia is having a "sour day". She just isn't happy no matter what she is doing really so I am letting this day pass and not really say too much about it to her. I guess she has her days too. She has been "relaxing" alot and watching TV today. She did do some "school work" but she wasn't into as much today as yesterday so we cut it short. She does well at listening though and following directions so that is good.

I was so surprised last night when a friend I haven't seen for 8 years called and said she was in town. They moved out of state 8 years ago. Not only did I get to see her but I also got to see a mutual friend of both of ours that I hadn't seen since before Katia relapsed. It was fantastic!!! That definitely made yesterday better:)

Please keep our friends in your prayers as well as a new one, Molly G. She is fighting cancer and just lost her daddy on the 29th. Heartbreaking and sudden, there was an accident with the subway on his way to work.

Thank you so much for all your HUGS and guestbook entries. That alone is like a miracle cure for us. The way I got to know so many others on Caringbridge was via the guestbook. People would sign and leave their links. I have far less time it seems than I used to but I still try to get by pages and "meet" others. My heart goes out to the families that are going through tragedies and fights for life. It breaks my heart as I never realized, before Katia was diagnosed, just how many people were out there fighting cancer, blood diseases and so many other disorders I knew nothing about. Although I don't get to the guestbooks as much as I used to, I still pray each day, a few times, for everyone out there. I pray some day there won't be a need for so many websites due to cures and success stories.

Thank you for your PRAYERS. God sends each of us into eachother's lives.

Love, Tracy









March 30, 2005 3:30 PM

Hello:)

I don't have a whole lot of time right now but the day is slipping by. Please pray for Katia as she is having a LOT of "bottom issues" again. My thinking is this too may be GVHD related with her digestive system. I am not sure why it is suddenly giving her so many problems.

I am looking forward to trying a new treatment plan right now to try to ease Katia of her pain and these GVHD issues. It is so hard to sit and watch her hurting and just wanting to lay down and "take it easy" or "relax herself" all the time. Don't get me wrong. She does play on and off and she has a very good attitude through this but she is just so tired of being so sore and taking pain medicine or having creams applied. She says she "just wants to feel better so she can play and not have ouches". That just breaks my heart and is very hard to sit and watch.

Nobody in our family likes to see Katia sick, but hurting really tears us all up. I picked up Sharayah from school yesterday and told her about Katia's mouth and the GVHD again and all the sores and I could see it just really upset Sharayah to know that is why Katia's eating had changed and she didn't want to take her gummy vitamins. Her mouth was sore and she just didn't want to say anything. Katia likes to be happy and feel good for our sake too. She is so loving and doesn't want to cause us any stress so she thinks if she doesn't say anything, she is accomplishing that. When I do medicate her or put cream where she hurts, she always says, "Thank you, Mommy for taking good care of me." She is so loving that is can be overwhelming sometimes to try to just keep moving forward without breaking down in front of her. I always try to keep on a cheerful face with her even if my heart doesn't feel that way. That is all I can do for her and love her and take care of her. I have learned I can't make this disease go away. That is in God's hands and He put Katia in our care because He knew we would be able to take care of her and keep her happy. That is what each day is about in Katia's care.

Well, I don't want to depress anyone or make you think I am at my breaking point. I am not. I am a pretty tough little cookie too so I just ask that you continue your prayers and pray that Katia won't hurt.

Love, Tracy




*****************

March 29, 2005 4:20 PM (see Jerry's update above)
(2nd update today)

It seems Katia's mouth has really flared up again with more GVHD (Graft vs. Host Disease). This has been so bothersome to her the last few days but I thought it was her gums and didn't look until today when she really started complaining and when I looked in there, it is all on her cheeks, the bottom and sides and tips of her tongue. I called her doctor so we are going to have to change things around again to try to treat this. She already has an idea of what to do next. So that is good. She goes in on Monday for her next labs and probably will start the changes as of then.

She really hasn't eaten too well today because her mouth hurts. I started her back on 2 mouthwashes we have used in the past and hopefully that will help the pain issue. I hate to see her not eat. Since the steroids don't seem to be working, we will probably be weaning those and starting her back on a drug she had been on just following her transplant. I will let you know.

I like to share things on here because, like Katia, people run into problems and it really helps to be able to see how things are handled, what works for one and not another, etc. That is one of the main reasons I put her medical treatments, labs and health on here, in hopes it will help someone else because it has helped me to read other peoples' ideas and thoughts.

That is all I wanted to add. Also, the bracelet orders coming in will be going out immediately. They are already together and ready to package and mail:)

Thank you for your "hugs" and prayers.

Love, Tracy









March 29, 2005 1:50 PM

Good afternoon:) As I type, Katia is right here. She has been sleeping a lot these last few days. This cold really has run her down so she needs her extra rest. She wants me to tell you she had a good Easter:) I love seeing her get toys out and playing with them. I know it sounds dumb but I do like picking up after Katia. It means she is up and about and being active. She is still working on standing on one foot and she wants to jump better but I see improvement each week with her abilities. She has a HORRIBLE cough right now which is driving her crazy but as soon as she stops coughing, she goes back to playing and talking to herself or her toys.

There is a special on the "Ladybug Club" bracelets right now. It will last until the supplies I have run out right now. I am also working on the next auction project (well I guess I am not working on it if I am on the computer but you get the idea).

Please continue to keep our friends in your prayers. I say a prayer for our friends throughout the days and their families. I also pray for you and your families. Everyone needs prayer for something:)

I ask that you continue your prayers for our family. There is so much we want to be able to do with The Katia Solomon Foundation but we need to raise funds to keep things going. We do have a few upcoming drives we are working on. Drives save lives:) As we work on the new album or as we have worked on the "Katia Song" and the "Rain" album in the past, we do all of this with the hopes of raising awareness. Those hopes in so many ways have become realities. I can definitely say we spread the word and we pray that those we talk to will reach out and talk to others. I know so many of you pass on what you read here as well as what you learn on other sites. I appreciate that very much. Remember how I once said that if 5 people would tell 5 more people about the need to donate blood and platelets and register as marrow donors. And then those 5 people would tell 5 more people, etc? Well, it would be like spreading a great rumor! This would be a fact that would save lives. I wish I could just give away bracelets and brochures to everyone or pass out CDs and hold drives everyday, everywhere but we can't. We are working on growing everyday and reaching out to more and more people. The Katia Solomon Foundation was founded for a particular purpose of education and expanding the registry and helping other families. That is the center of our days and discussions. Thank you for allowing us to spread the word through you. So many of you have emailed me or signed the guestbook with your personal stories of sharing the information about the registry or umbilical cord donation and some of you have even been called on as a marrow match! I wish I had been working on this goal all my life, but I just didn't know about the need. Now that I do, it is the drive in my day.

Well, I promised Katia I would go out there and watch her play in her castle. Plus I need get back to my "auction project".

Oh, also if you are interested in one of the "Ladybug and the Dragon" books, please email me and I will let you know how you can get one. I am glad so many of you have already enjoyed yours.

Love, Tracy







March 28, 2005 9:18PM (second entry today, well 3 counting Myron's)

Good evening. I bet all of you think, "Wow, she must talk a lot since she types so much." Basically, yes:)

I have just been checking on some kids and I also did earlier today (I missed yesterday and I felt so incomplete). I would like to ask you to pray for a few. Lauren is not feeling well at all and she is feeling pretty down. Also, Angel Casie's family is really missing her so much. She was diagnosed Easter 2003 so this weekend was very difficult. I would like for you to pray for those raising money for the Relay for Life run. It is for such a great cause. I ask you to pray for Benjamin's family as he slowly is losing his health. There are just so many. I was reading someone's page who recently lost their child, Angel Hayley. They brought out such a good point in their entry. They know the pain of losing a child but God CHOSE to give His Son. I think that is so insightful and full of love and grace to bring that point out. I really had to read that a few times today. Angel Cheyenne and Angel Michaela are so missed. Cheyenne used to hide the Easter baskets each year so her family could find them. Michaela was just a jewel so full of love. Oh, there are so many more. I have learned so much by all the families that have opened up their hearts and share their stories. There is so much to learn from others.

I have learned to appreciate smaller things in life and enjoy each and every moment. I am not saying I walk around in bliss all day long (not quite) but I do think I "see" so much more than I used to and I form a lot of memories in my mind. Since I forget things so easily:) I am glad that I have this journal and I am glad that I can share some of those memories and thoughts with each of you.

I appreciate those of you that check in on Katia and love her so much. Our family is reading that book "A Purpose Driven Life" and it is teaching so much each day. There are a few quotes I would like to share.

"If you want your life to have impact, focus it."

"If you can't get it all done, it means you're trying to do more than God intended for you to do (or, possibly that you're watching too much television)."

I got this book back when we were living at the hospital but I wanted to wait until I could really read it. I think it worked out for the best because now we can all read it together and discuss it. I love discussions:)

Well, that is what I wanted to share with you.

Thank you:)

Love, Tracy






March 28, 2005 (My entry is below)

From Myron:)

Hello everyone, it's Daddy Bug.

Just wanted to say hello and hope that everyone had a super Easter Holiday.

To me Easter is very special, it is certainly a time of miracles and hope.

I am daily reminded of God's goodness just by looking at Katia, however on Easter I am especially thankful for God's Love.

We have been busy trying to find ways to continue to build the Katia Solomon Foundation, it is certainly a humungeous task, filled with lots of challanges, but I know that our purpose is defined, real, and there is no other direction but forward.

Thank you for all that you contribute, and please continue to hold us up in your prayers.

I am excited about the new song I am working on, you will all soon see the labor of love that it is. I sure hope that you will like it.

The girls and I had a blessed Easter day. Again, this time last year was a little more stressful, but filled with the love that comes from God and so many like you who have taught us a new meaning of life. We count our blessings and are so happy to be home this year.

Today is a very special day! Today is my Dad's birthday!

Happy Birthday Pa! May God keep his hand on you always and bring you health. You are and have always been the best father any man could ask for and I love you dearly.

He has not been feeling too well lately and I am always concerned. It is so difficult to be so far away from those you love... Please pray for his and my Mom's continued well being.

Well, know that I am daily motivated by your support and your continued encouragement and blessed to count you as friends.

God bless, and look forward to chatting at you later..

Luv, Myron




March 28, 2005 2:19 PM
Day 417 Post Transplant

First of all, I hope each of you had a wonderful Easter. This time last year we were in the hospital so this year was just great to be home:)

We did our little Easter egg hunt the day before (and I am sure we will be continuing them through the next few weeks-orange egg still isn’t found) and even hard boiled the eggs the night before.

On Easter morning we colored the eggs and we have another little tradition. We take the time to write each other family member a letter about what they mean to us and how much we love them. It is a really great thing to sit down and read all these. A lot of tears, tissues, and laughing. The notes are then put away for safe keeping to treasure!

This year, Katia dictated her notes to Tatiana, me and Myron to Sharayah and then her note to Sharayah was dictated to Tatiana. Instead of Easter Baskets, I made them little gift bags with toiletries that I knew they would enjoy and needed. Then I put a picture, in a frame, for each of them. For Sharayah-a picture of the two of us at the park, Tatiana-a picture of the two of us at the park, Katia-a picture of her and I at the park and for Myron-a family picture of all of us in a frame that says FAMILY. You can tell I am the sentimental one:)

Myron worked in the morning and during the day but we did our note exchange when he came home. Katia was joining right in with the hugs and tears. She felt like such a part of things and understood it much more this time than last. She really enjoys hearing her letters read and watching our expressions as we hear her letter to each of us. Then she jumps up to give a hug:)
In the evening, we watched that movie, “The Five People You Meet in Heaven” and which was a really great movie. I want to read the book. If you haven’t seen the movie it is great!

Today, the girls are still out of school so Katia is soaking up the added play time and attention. She will be sad to see them return to school tomorrow but summer will be here very soon (end of May) and she can have them all day again!!

Well, I better get this posted. It is really windy here today so I need to go pick up a few things in the yard.

Have a GREAT DAY!

Love, Tracy




***************************



March 26, 2005 11:53 AM

Good morning:)

I was just going through the Favorite Photos and other albums (which can be run as a slideshow) and it is nice having them all in one place:) I had fun putting that together.

I would like to ask your prayers for a friend of ours, Kelly M. She has really been having a very difficult time. She has a rare spinal column tumor and has been in a lot of pain lately. It seems with the treatments she has been through, the tumor has continued to grow and they are now worried about it spreading. She is currently in the hospital to start new treatment and to have a feeding tube put in. She has lost a lot of weight and needs help with feeding and being able to take her medicines. She is such a sweet girl with a very loving family. It is so hard on them to sit and watch their, once very active little girl, in the hospital in so much pain and under so many treatments.

On some very good news, Emma Grace's recently biopsy shows no neuroblastoma cells!!! I loved reading that!

Elli's recent eye test shows the tumor in her eye has shrunk and is gone!! Elli just had transplant on February 4th and is home and feeling well. Her sister was her match. Before transplant they found out that one eye's retina had been destroyed leaving that eye blind. Then right before treatment, they learned there was another tumor in the opposite eye threatening her sight. Now she is home and doing well and that tumor is gone!

How is Katia today? Well, other than being very very sensitive and moody, she is doing okay. She has been playing around with a cold and it has hit her full force. It isn't like her to be so moody while she is doing the things she loves (PLAYING) but she is. I hate to see her like that because I know she hates to have meltdowns and that is what they are like. She is fine one minute and the next minute miserable. Her steroid dose hasn't been changed. I do think she is having headaches right now by the way she is acting. She won't usually say anything unless they get really bad or if her right eye starts having pains. She doesn't want anymore medicine. I don't blame her. I do try to get through to her that she always has to be totally honest with me even if it means something she doesn't like. She is pretty good about doing that:)

Sharayah and Tatiana are enjoying spring break. There really hasn't been much to do but to be home but we are used to that:) Katia keeps Tatiana very busy playing, playing and more playing.

I want to thank everyone that has sent boxes for the Treasure Box!! Thank you, thank you, thank you! I want you to know that you really help to make some very deserving kids very happy. Thank you:)

Also, please keep Jerry's family in your prayers. He comes home tomorrow from Seattle, after learning his cancer has now spread to his bone marrow. Tomorrow is Easter, they have 3 small children (triplets) and it will be very hard to keep things on a positive note that they would like to for their family. It is a hard blow to them but we are all praying that a NEW treatment will be the RIGHT treatment for Jerry and in this time, a marrow match will finally be found for him. He really needs a match.

Thank you for checking on Katia and for all of your prayers for her, our family, others going through treatments, pain or the lost of a family member. Thank you for being so special.

Love, Tracy









March 25, 2005 7:50 PM

Remember the FAVORITE PHOTOS question:) Here they are!!! I was trying to do another Zeocast Slide show but I was never going to get it done so I wanted to get them together. This link will stay below in the 3 favorite links area at the very bottom of the page:)

Love, Tracy





March 25, 2005 12:39 PM

Happy Good Friday:)

First, I have a prayer request. For those of you that have been following the story of Jerry Gomez, he went to Seattle to begin treatment to first try to get his lymphoma into remission and then, since he doesn't have a marrow match, try to use his own marrow for a transplant. Well, during testing of his marrow, it now shows he has cancer in his marrow too. This appears to be a secondary cancer. I don't have any further information other than now he is being sent back home. We are doing everything we can to try to hold as many drives as possible right now, because like Jerry, so many people DESPERATELY need a match to be found to save their life. If you aren't a registered marrow donor, please call 1-800-MARROW-2 to find out how you can register in your area. You can go to The Katia Solomon Foundation Page to find out more information about the marrow donation process and the great need for donating newborn's umbilical cords. A cord has given Katia a second chance at life. These are normally thrown away following delivery but it has been discovered they are full of life-saving stem cells. If you are expecting, planning on having a baby or know someone who is, please call 1-800-MARROW-2 to find out how to donated the umbilical cord.

On to Katia news. Katia is still feeling under the weather BUT the cream on her eyes for the GVHD seems to be showing some improvement which we really pray it will continue to clear this up. Hair loss? Seems to be about the same but like I said, she seems to be growing new hair at the same time. We are still keeping her steroid dose the same as well as her FK506 dose.

Thank you so much for all the guest book entries about how this page has touched your life. I read them and it just makes me want to hug Katia;) I like to do that anyway. She is very squeezable especially now that she has gained a little weight:) You can send Katia hugs with the above Hug Counter:) I think that is such a cute idea whoever came up with that idea. One page, shows over 200,000 hugs! WOW!

Also, I want to say for those of you that have been following Elli D. that had transplant February 4th, she is not only doing well and home but if you remember she had lost the site in one of her eyes due to the retina being damaged and the other eye was found out to have a tumor in it right before transplant. Well, they did the follow up test and the tumor has not only shrunk but it is GONE! That just made my day to read that!

Thank you for all of your prayers for Katia and Katia's friends. Prayers not only help through testing and treatments but also help the families emotionally. I can vouch for that!

Well, that is about all right now.

For me? I am feeling pretty good today. Someone said something about me spring cleaning yesterday when I don't feel well? I think I actually clean more the worse I feel. I don't know but to me, it is therapeutic. I like to stay busy. So, thank you for your prayers concerning me.

Have a great day and a Happy Easter weekend.

Love, Tracy








March 24, 2005 12:45 PM

First, I must ask that you pray for Kody's family. His little Niece and her father were in a bad car accident. Please pray for them and drop by their page for updates. We love you K's:)


Hello:)

Yes, Katia has been chosen for the Leukemia and Lymphoma Society's Girl of the Year 2005. This is a great honor for her to be this area's Girl of the Year:) The little Boy of the year is also 5 and has been battling leukemia ALL. There will be a Gala of celebration in May for them as well as for the Man and Woman of the year who are now campaigning to win. Guess who one of them are? Heather Russell!!! She is also from ACH and is such a great young lady!!! She used to come visit Katia and Casie during transplant time and she is so sweet:) Go HEATHER!!!

As far as Katia, she is kind of under the weather still and is taking a nap. Today she was supposed to have had spinal chemo which was cancelled, thank goodness. If she had gone in there at all sick, it would have really knocked her down so we always know that God is in control. Katia just feels yucky right now with a stuffy nose and cough. Hopefully fever will stay away but her heartrate is up which a lot of time means a fever is on the way so please pray it stays away so she doesn't have to go in.

As you can see from the pictures in the photo album, we already had a small Easter egg hunt. Katia missed doing this last year so she is making up for lost time. Her fondest memory of moving to the new house (Jan 2003) was actually a back porch Easter egg hunt. So, when she relapsed in August 2003, we took that home video to the hospital and she had quite a few egg hunts in her room and with her Child Life Specialist and Physical Therapist:) So, now she can do her egg hunt on her back porch. The funny thing is Tatiana hid the eggs, two of each color, and nobody could find one of the orange ones! It still hasn't been found so I am sure some jelly beans are going rotten somewhere! Katia only likes the yellow eggs and the yellow jelly beans. That is her "color" and she is really big on wearing yellow right now! I can't say she doesn't know what she wants:)

Sharayah and Tatiana are staying pretty busy over their spring break playing with Katia. She is big big big on playing right now which is nice to see. I know Sharayah and Tatiana probably get tired of playing games and barbies and all of Katia's made up games, BUT they do it:)

Myron has been working on the newest song and it is coming along great. This song features KATIA and she did so good with her recording. Sharayah and Tatiana have a part in this song and there is a choir in the song and so much more. I could go on and on but I will let you know when it is done. I am so proud of my family:)

Well, that is about it for now. Oh, all the "Ladybug Club" bracelets, hats, etc. go out in the mail this afternoon. They are packaged and ready.

I love to see the guestbook entries with the "PROUD MEMBER OF THE LADYBUG CLUB" signatures:) That is just great:)
"Sharing Hope on the Wings of a Ladybug".

Well, spring break means some SPRING CLEANING:)

So, I better get busy.

Love, Tracy











March 22, 2005 (second entry today)
11:28 PM

I know it is late but things are just getting quiet around here. It has been a long day.

Katia is doing okay but she has been so short tempered today and whiney and very clingy to me. The only time she is like that is when she really doesn't feel well. I know she is very upset about her hair. Her eyes are the reddest they have been for quite sometime and she sees it. I think she is just getting tired of waiting for them to get better again. That is why I haven't really updated the pictures. I do have a suprise to put up here on Thursday so I will do it with a picture:) No, Katia didn't dye her hair purple or get the Poodle she really really wants. But, I think you will be happy for her. I know I am!

I haven't felt well the last week or so. I don't say much on here because I don't like people to worry about me. I have just not felt well, short of breath mainly. Not all the time, just when I get busy. My blood sugar level has been dropping lower than normal and more often also. But, yesterday when I woke up around 4AM in a LOT of pain, suddenly. By the symptoms, I automatically figured it was a UTI and I knew I had a doctor appointment scheduled for today to follow up from last week's visit. So I thought, let me just stick this out and wait. WOW! Not good. Just to say the pain got worse and then it was my abdomen, really bad in a few spots and I just really had to lay low.

Today I had my appointment and yes, UTI. So, they gave me this one dose pill (I can't believe I didn't write down the name but I was in pain!) and said it would take a day or so to work. Not working yet... All that I have gained from it is a bad headache, fuzzy brain and dizzy. All side effects of the pill I assume.

I usually save this page for Katia's happenings but I figured I would share that with you so you know why I have been sorta slacking on photos and such. At least it doesn't take my "long-winded" entries away:)

I have been in bed almost all day and Katia has been checking on me and stays with me a LOT. She wants to take care of me.

Funny story. Katia went and asked Tatiana for a napkin tonight for me. Tatiana brought it to me and Katia burst out in tears (yes, she still has a lot of outburst). She said, "I wanted to give it to mommy!" She wants to do everything for me. She is so sweet and very appreciative when I do anything for her.

The fun of all of this is that I have been put on the Atkins Diet in hopes it will help with my blood sugar. That was last week and I must say, it seems to be working:) Although I desperately miss bread, rice, pasta, cereal, oh so much!!! I miss alot of things. I am sticking to it even though I have slipped twice I think.

So, please pray for me that I feel better and pray for Katia that she can feel better, happier and her outburst will minimize. We all feel so bad for her when she gets SO upset. If someone looks at her "that way", she burst into tears saying they are mad at her. She doesn't want me out of her site so she is usually either ON me, with me or going back and forth to me. She has been playing more with her toys and stuff and I want to see that continue.

Well, thank you for letting me ramble:) Some things never change, right.

If you didn't read today's earlier update, please do. (It is kinda long too though so you may want to use the bathroom, grab a drink...)

Love, Tracy






March 22, 2005 2:19 PM

Well, let me update on Ms. Katia. Her eyes are VERY red today and irritated but hopefully that new ointment will start to help:) She really wants her face to look better. She is 5 and cares about her looks more now. It wasn't this way when she was first diagnosed at 2 years old.

Her hair? Still the same. But amazingly, it looks like it is falling out and growing at the same time? Maybe new growth is pushing out old growth like trees with their leaves. It is Spring. Hopefully this will start improving to though.

She has been feeling well other than her broviac is really bothering her so she is getting pain medicine two times a day right now and benedryl two times a day. It seems to help her not to rub at it and scratch it. She has a "Boo Boo Bunny" which you put an icepack in his back and where you lay it, you feel better:) She uses that for her broviac too. It was bleeding yesterday so I dressed it more securely and put medicine on the incision area. It was quite red and irritated at clinic but it didn't look infected.

As for what else? Well, all these Caringbridge issues are really taking a great deal of my time. Not so much Caringbridge themselves, but other things. I think all of us Caringbridge users and Caringbridge know we have a good thing going here but there are just some changes that needed to be made and it is causing a lot of "stirring around". It seems right now, there are more questions than answers.

We have always wanted to share Katia's story and Caringbridge has been a wonderful way of doing this. At the same time, people have emailed (once I started the prayer request) asking to be added or to be added in the links section, which I have happily done. I know how much "networking" has helped me meet others. I met most of the kids I keep up with via links or through the links left behind in guestbooks. It seems not all people have good motives when they visit the links or the links have gotten spread around to a lot more sites. I think most people have done this wanting to help and become more of a "community".

I know a lot of people come and check on Katia everyday and I have always wanted people to know that although Katia is priceless to us, there are many others going through what we are and many who have lost their loved ones.

So, if I have ever had a prayer request up here or your link in a drop down menu that you didn't want (almost all were emailed to me asking to be put there by the person themself or a family member) then please, E-Mail Me and let me know. I don't ever want to think that I have been a part of any "problem" going on.

I get a lot of emails (which I appreciate) about how much Katia's page has helped people and let them meet so many others. I have received emails about people registering as marrow donors or finding out they were a match for someone. I have recieved so many emails about how Katia's story has taught people to appreciate their lives and their family more.

Due to everything going on with Caringbridge, could I ask you to do a favor? Can you share the way Katia's page has positively touched your life. I would like to share that in the guestbook so please just leave a message in the guestbook. You know I always love hearing from you but this way, others and Caringbridge can see how this page has helped.

Thank you so much:)

Love, Tracy




March 22, 2005 7:20 AM

I know there have been a lot of changes to the page recently. If you have any questions, you can E-Mail Me and I will get back with you ASAP.

I will be back later about Katia.

Have a good day:)

Love, Tracy






March 21, 2005 4:12 PM

WBC 4.8
HGB 13.3
PLT 249
ANC 2500
Weight 15.6 kg (34 pounds)
Height 93 cm (3 feet tall!!)

Clinic went well:)

We talked and, between both of Katia's transplant doctors, it is decided to stop the spinal chemo treatments so we will not have the upcoming one this week or any others after that. That is good:) Made Katia very happy. I have mixed feelings about it but I definitely have faith in Katia's doctors which is a GREAT thing to have!!! I know they did quite a bit of research before making that decision.

Okay, Katia's hair. Well the cause really isn't known but since it is flaking AND falling out, they want us to try T-Gel on it once a day for a week, then a few times a week, then once a week. There isn't any promises that this will work but I feel good trying something. Katia is pleading with me not to let her hair fall out and with each dropping piece, she is getting more and more upset about it. Katia isn't big on getting her hair washed but since we are trying "Magic Shampoo" she is willing to try. We did it this afternoon one time already.

Okay, the eyes. We are going to try another ointment, Protopic (Tacrolimus Topical). This is actually the same thing as the FK506 (Tacrolimus) her Immunosuppressent Drug (we call it her Wonder Woman Medicine). In the same way FK506 holds back GVHD inside her body, the hope is this will hold it back around her eyes. That is my understanding:)

As far as her brittle nails and the lines in her nails, for it to be showing up now really reflects her health back in December or January (since nails take a while to grow). We really can't think of the cause but she was sick and admitted back then right before Christmas for fevers and such.

At this time, we aren't going to wean anymore on her Prednisone (Steroid) or her FK506.

All in all it was a good visit.

Katia's weight is 15.6 and her height is 95cm. She was 93cm back in June 2004 and 14.4 kg. So, she is above that at least.

Other than that, I think that is a lot, not much else. I am going to go through some pictures and see if I can change out what is on here:) That would be nice, huh:) It has been a while.

Also, we are working on a little project which I will let you know when it is done.

Love, Tracy







***************************


You can help the March of Dimes







Are you in my club? YOU CAN BE


Katia's "Ladybug Club Bracelets"
Are you in "The Ladybug Club"? Join today with one of these bracelets. Katia would love to have you as a member!!! Please specify if it is for a child or adult:)








*HUGS* TOTAL!
Give Katia more *HUGS*
Get hugs of your own








********************************




March 20, 2005 12:18 PM

Good day:)

I know there is a lot of "buzz" going on about Caringbridge making everyone remove links from their pages to other people's pages. It has been a sudden change and it has upset a lot of people. A lot of people found Katia either via links on other sites or the links to her site I left in other people's guestbooks. So, I want to remind people that there are links in guestbooks, left by the page authors themselves. I know it is nice to have a long list of links, that is easy to access, right on the page. That is the way I checked up on people was via Katia's pulldown menus and prayer request. If I went to someone's page and saw a link, I would at least drop by the page and read about the patient. I didn't always sign guestbooks (I don't get to do that as often as I did before). I have learned so much from others and the only way I got connected to so many others is via links. I personally am not one that likes a lot of change but this is something I had to do so I just have to. I appreciate so much Caringbridge. I have to say, the service is great, the ease of updating the page, signing on anywhere, etc. is just all great!

I know a lot of people don't know how to leave their link in someone's guestbook but you can also just type out the address and it can be copied and pasted so someone can visit you back:)

Sometimes, so much energy is spent on people starting pages that are false and it really hurts the Caringbridge Family we have created here. Right now a lot of the energy is on these links. I guess all of this shows just how strong the "Caringbridge Family" is. When I say "Caringbridge Family" that doesn't just mean people that have a Caringbridge Page but also those that have independent sites or other addresses, that have gotten involved here checking on Caringbridge Kids.

I have tried to find a way to keep the drop down menus and prayer request available by using the Katia's~Friends link. It is actually easier for me to add to and update without the threat of messing up all the HTML coding I have on Katia's Caringbridge Site. If your page isn't listed in the drop downs and you would like it to be, please Contact ME and I will get it on there.

I know many of you have kept up with Billy G. via Katia's prayer request. His dad has also started a great site for links via banners. You can go to it clicking on this link below.











So, although things have changed, there are other ideas. I hope it will all come together to make something even better than before. If you have any ideas, please share them with me by >A HREF="MAILTO:tmsol87@aol.com">Contacting ME and I will definitely read your idea:)

As far as Katia, I am getting pretty concerned about her hair loss. Now, her scalp is very flaky and crusty and her hair is falling out even more. There are no bald patches but it is getting quite thin, especially on the top, then the sides. She realizes it because it is getting in her mouth or her eyes as it falls down. Her eyes are again getting redder and redder. She keeps getting these GVHD rashes on her cheeks, neck and some on her back. Her nails (both hands and feet) are very brittle and rough, with lines in them. This just came about yesterday mainly. I am afraid to even clip her fingernails right now because they look sore and brittle.

We have an appointment in the morning. I talked to one of her doctors and both of the doctors have been talking about some changes in Katia's upcoming treatments and her medicines. I am not sure of it all yet as we will discuss it tomorrow. I have done as much research as I possibly can and it ends up with the same thing. GVHD known as Graft vs. Host Disease is also known as Graft vs. Leukemia. Although some of it is a good thing as the body might be fighting of leukemia cells, it can also be the body trying to just attack the new marrow. It isn't always a good thing to completely halt GVHD but nor can you let it get out of hand as it can be fatal.

Back when we heard Katia had to have a transplant, the year date following transplant was a HUGE goal to me. I know a person is no where near "Out of the woods" at that time, but usually things have calmed way down, they aren't on as much medicine and a little bit of the fear of relapse diminishes. I can speak for myself and so many other families out there. The fear is definitely still there for not only relapse but these other complications. Katia is eating well and walking around much better than she was months back. She takes a lot more medicines than I thought she would at this point but it has come down some. Although, I am grateful I still know that we can't let our guards down. Boy do I want to!!! I don't want to have to worry so much about her getting a cold or some small type of infection. But we do. That is just our life right now and more than I am worried, I am grateful we still have these concerns. I know many parents that don't have their little ones to worry over any more or give medicines to anymore. When I start getting down, I think of the numbers of families that don't have their loved ones with them. They would love to be able to just hug them or give them their medicines, change their bandages or go to a clinic visit and get a "report card".

I am sorry this has been such a long entry. I should have told you to get some coffee or a drink at the beginning but I didn't know it would be this long. Thank you for letting me babble:) I will be back after clinic tomorrow to let you know what changes we are going to do and what they say about her hair, scalp, nails and eyes.


Love, tracy

PS Katia's bottom seems to have improved some. She isn't up and about as much. She likes to be sitting on the soft sofa or a bed but at least it isn't making her cry. That is another issue to be brought up tomorrow. She is going to be mad when I say the B-U-T-T word.








March 19, 2005 12:25 PM

Good day:) Hope you are having a good weekend.

As I type, Myron is at the drives (he is going to one and then over to the next). I am supposed to try to meet him at the second one (Tampa location) if all is well with Katia. She has been having a couple of problems the last 2 days. Her main was is serious "bottom pain". It was REALLY bothering her yesterday so I "treated it" and gave her pain medicine. Today, I let her soak in a little bit of warm water in the tub and again treated it and gave her medicine. She has had numerous problems with tearing in the area but it looks a little worse than that. She is already fretting going to clinic on Monday now because she knows we have to tell the doctor.

Another problem is she is losing hair again? I know GVHD of the scalp can cause this but her head looks pretty clear. She picked some off her shirt a few minutes ago and brought it to me saying medicine is making it fall out. She really likes her hair and it broke her heart to lose it all when she relapsed back in August 2003. She is scared it will all fall out again. She doesn't even want me to brush it now.

We will work around it. All of us work hard to always make her feel great and happy:)

Let's see. I had something else to put in here but I forgot now. They say everytime you have a child, your IQ drops so I have had 3. I never used to have to write reminder notes but now I do:) Oh, well. I will just stock up on Post-Its:)

Thank you so much for always checking on Ms. Katia (aka Ladybug). I just gave her a few thousand hugs today and told her how much I love her! I showed her the hug counter and said to imagine a whole pile of people hugging her at the same time. She thought that was funny.

So, I will check back later. Remember, please keep Kody in your prayers.

Love, Tracy


*********************

March 18, 2005 11:24 PM
Please pray for Kody. He was rushed to the hospital due to seizures.
Love, Tracy





March 18, 2005 11:43 AM

Hello all:)

A few things this morning that I need to point out. There has been an issue brought up with Caringbridge about links to other people's pages so therefore, I (along with many others) are having to remove these links from our Caringbridge sites. That means the drop down menus and Prayer Request Links. But, I have established a new location for this. Please bookmark this site so you can keep up with our dear friends and those needing prayers.

This link will be available at the bottom of this page via "Katia's ~ Friends Link"



Caringbridge is also working on some type of a Grand Listing of all the sites of those authors that give permission to be listed. Caringbridge is a great service, which does not charge us users. They don't want to be caught in the middle of privacy problems, and many other concerns that have been happening, like false sites.

That is all I am going to say on this other than the fact that if you would like to help Caringbridge continue this free service, you can do so here. Help Caringbridge Continue to Grow. You can make a donation in honor of Katia to show her page is making a difference in the overall Caringbridge Community. Every donation helps no matter how large or small:)

As far as Katia today, well she is again quite red. Especially the GVHD around her eyes. It has again flared up. Tomorrow she is supposed to wean down to 5mg of Prednisone every other day which would be great. I am not sure if this will be possible or if we will be risking a complete flare up like last time. Remember she is again due for her spinal chemo on the 24th which usually takes any small problem and makes it big! So, I am going to call and talk to the doctor before I wean down anything. She has not been weaned any further on her FK506 (ImmunoSuppressant Drug) because of all of this either. A little GVHD is not a bad thing but a flare up can get so bad, it could be fatal. We have to find a very secure middle with these medicines and her body.

As you can see above, Katia Solomon Foundation is hosting 2 drives tomorrow. The information is there if you click on the link above about the Press Release. It would be great if locals that are not yet registered, would drop by. Many people are depending on the growth of the National Donor Marrow Registry. The Katia Solomon Foundation needs help to keep moving forward. We are doing many things right now with commercials, brochures, and drives and we would like to be able to do much more. Thank you for your help.

I have had many people email me saying they use their "Ladybug Club Bracelets" as a way of sharing information on how others can register on the Marrow Registry!! That just makes me so happy! It is our hope that the registry can grow from a little over 6 million (beginning of 2004) to 10 million by the end of 2005! Wouldn't that be a great increase? With every 300,000 people that register, the hopes of a certain person finding a match, greatly increases. So tell everyone you know.

Well, that is about it for now. I have a few things to do before the drive tomorrow and I need to make some phone calls about Katia and what we are going to do with her meds. Thank you so much for all of your continued prayers for Katia. She has many ongoing things which we don't dwell on so much, here on the page, but the prayers bring her through each day. They also help give us the needed boost to get through each day, if you know what I mean. We could never do this alone.

Love, Tracy




FOR IMMEDIATE PRESS RELEASE


March 17, 2005





Florida Blood Services Marrow Donor Program Increases Donor Recruitment
To Help Patients in Need of a Bone Marrow Transplant







Jerry Gomez (pictured here with his wife and 3 children)is in desperate need of a marrow match to save his life.





(St. Petersburg, FL: 3/17/05) - Thanks to the miracle of medicine and the gift of a stranger, patients with potentially life-threatening blood diseases such as Leukemia have been saved through a marrow or blood stem cell transplant. But thousands more are hoping to find that one special person who matches them to facilitate a vitally needed bone marrow transplant. Many of these patients in need also reside in the Tampa Bay. However, they all anxiously await a donor match to be found on the National Marrow Donor Program (NMDP) registry to help give them a second chance at life.




Florida Blood Services is southwest Florida’s local donor center for the NMDP which is headquartered in Minneapolis, Minnesota. Bay area residents can help save lives and increase a patient’s chance at life by signing up for the NMDP registry when they donate blood or attend a marrow donor registration drive.
Generally, healthy people age 17 or older, who weigh at least 110 pounds, can be blood donors. Donors choosing to register with the NMDP registry must be age 18-60. Identification is required prior to donation. Please call 1-800-68-BLOOD Ext. 2110 for further information or visit an upcoming community drive below:








Saturday, 3/19/05 (10:00 am - 3:00 pm)
Katia Solomon Foundation

Community Marrow Donor Drive

Suncoast Ford

10821 US HWY 19 North

Hudson, FL



Saturday, 3/19/05 (10:00 am – 3:00 pm)

Katia Solomon Foundation

Community Marrow Donor Drive

Nature’s Harvest Market

1021 North MacDill Avenue

Tampa, FL













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Happy St. Patricks Day!!
Day 406 Post Transplant

It is a rainy rainy day here!!! I absolutely love the rain if I don't have to go outside in. Katia loves the rain also. She really likes the way it sounds on the roof of the back porch. Beautiful!!

I am supposed to be taking it a little easy today so I plan to do that. I am still feeling pretty lousy sometimes during the day and at other times, I get a spurt of energy. I have another appointment next week. I had a chest x-ray done Tuesday and haven't heard anything back so I will take it that no news is good news:)

Katia is definitely getting more into "playing" so she spends a lot of her day talking to herself. She is still getting that redness on her arms, cheeks, and eyes. Her palms and the soles of her feet have been fine. I am curious as to what her counts are doing. I hope her platelets have gone up this next visit and not down. I expect things to jump up and down as long as it doesn't stay as a trend on going down.

Her next spinal chemo is scheduled for the 24th and she has some other test coming up this Monday. She will have the PFT, ECHO, EKG, and some other things I can't remember. Those will be done on the 21st or the 24th depending on when they are fit in. Her appetite is still hanging in there but today was the first day of the wean down to 5mg. I am curious what this will do to the GVHD. Pray that it will stay away:) That would be perfect!

Well that is about it for now. There was something else I wanted to say but I forget what it is.

Please remember to check the prayer request. I have been adding some here and there as well as a few new links on the page. Enjoy your St. Patrick's Day and I hope you wore green:) I am all in green!! Of course, when I was growing up, nobody could ever pinch me:) I have green eyes!

Love, Tracy








March 16, 2005 5:50 PM

Good evening:)

I am slipping at these updates. Sorry this so late. I will be better tomorrow.

Things here are good. We were pretty busy today trying to get some things caught up and then we went out on the porch part of the afternoon. THAT IS MY FAVORITE THING TO DO! I love the back porch. The back yard needs quite a bit of touching up but it would be my second favorite place to be. I said something the other day about Katia not being to the beach yet. She has seen the BAY as we drive over Tampa Bay everytime we go to clinic. She just hasn't been to the beach, where you can look out and see only water to the horizon. I know that sounds funny, living in Florida and all, but we will get her out there sometime. TRUST ME, we will take pictures:)

I like the outdoors and I really believe Katia likes going outside and on the porch so much because of being confined for so long. She still can't go anywhere except home and clinic but being home is so much better than the hospital so we are happy.

We pretty well just lie low most of the time. At least we are pretty much okay with being around the house. We would really like to get the yard all fixed up (the back yard) so there are no bushes and too much stuff out there. I don't want to have to worry about bugs and wasp or flowers that could cause allergies. It seems so dusty out there right now (although it has rained the last few days).

Anyway, there are a lot of things I would like to see done but still only so much energy and 24 hours in a day.

I have been pretty much out of energy lately so I am also trying to rest up a bit and not be such a busy-body (yeah right). Anyway, I will be back tomorrow:)

Thanks for all of your prayers and well wishes. I do have to say when I don't feel well, my family definitely takes care of me:)

Love, Tracy







March 15, 2005 6:25 PM

Good evening:)

Sorry I am so late getting around to this today. I am going to just be short and sweet as I have felt pretty under the weather most of today.

Katia is doing well. She is turning into quite a busy-body right now which is nice to see. It seems more the way a 5 year old should be. Spring Break is coming up so Katia will be VERY happy to have Sharayah and Tatiana around during the days.

I will be back more tomorrow. I didn't want anyone worried that something was wrong with Ms. Katia:)

Love, Tracy







March 14, 2005 2:22 PM

Hello there:)

Sorry I didn't get here yesterday. I just got busy and all the sudden, the day was gone! Where did it go?

Well, Katia is doing well. Her appetite has definitely not as much as last week. She isn't even anxious for breakfast in the morning, although she will eat whatever you give her. So, this is the point I wish it would stay.

She is due to wean down her steroids this week but her eyes are all red again and she keeps getting rashes here and there. I am not sure what we will do yet. That will be decided before we do wean though. Last week we held off. I think we will hold off again.

I added a new prayer request above for another little girl fighting luekemia AML. Too many people get diagnosed with these diseases. It is sad when you know another family is going through this.

That is about all for now.

Thank you so much for all the "favorite picture" responses!!! It is fun digging through the old files and looking for the favorites. I think right now, I have about 60 pics:)

Love, Tracy

PS Please visit the newest Katia Solomon Foundation Site on ways you can possibly be a part of helping the foundation grow and be able to do so much more.



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March 12, 2005 9:45 PM

Better late than never I guess:)

I just notice, 1 1/2 million hits!! Can you believe that! Amazing. Thank YOU:)

Today was a nice day. Not a whole lot going on. There is a surprise in the works for Katia from some good friends of ours. I can't share it yet until it is done but we are getting closer:)

I have gotten over 100 responses (mainly via email) for the favorite pic question. There are some definite favorites that keep being said. So far the biggest one is Katia laying across the sofa August 2003. That is just a couple weeks before relapse. She looks so perfect and healthy in that picture. I remember that like it was yesterday. Her labs were all PERFECT at that time, they were even the day before she relapsed. We were enjoying being in the house, having the backyard and the great days of summer!!

I am really hoping that Katia can have her broviac removed by June so she can have another nice summer just being Katia:) All she wants when she gets her broviac out is to swim. We don't have a pool but I can get her a little kid pool. She really enjoyed that before she relapsed. Loves the water! Katia has never seen the ocean yet. We want to take her out to the beach soon, in the evening, just to see the ocean, where the water never ends, all the way to the horizon.

I have been going through home movies, old pictures and just have enjoyed looking back over the years. Tonight we watched a video when Tatiana was 10 months old, so CUTE (what happened:) LOL)

Somewhere around her is all Sharayah's old home movies. They are packed in their own box because they were on VHS and then we changed to C-VHS. Someday, we will go digital!

We all enjoyed watching the home movies. Katia is a little older than what Sharayah was in the movies we were watching tonight. There is a big difference between them but Katia has been through so much and then a lot of other things, she hasn't been around. Man, could Sharayah talk! I mean really talk and answer questions. We were easy parents to please:) I think we had a lot more time on our hands back then too. We would video tape every few days.

Katia has been doing well. She will hopefully wean more on her steroids this coming week. The rash is still coming and going on her cheek, hands and feet but we will see. She is due to have her spinal chemo near the end of this month. We have delayed it a bit for a few reasons and then her last spinal chemo would be near the end of April. As much as I look forward to it being done, I know then, Katia's body will once again be on its own to stay cancer free. Last time, that lasted 11 months after her last dose of chemo. This time she has not only her new blood that is different but also the tumor in her eye hadn't been radiated before, now it has. I have faith she will surpass and move ahead:)

Well, keep letting me know those favorite pics. I am thinking this is going to be a great collage that I may want to somehow print and frame:) I am enjoying digging up your favorite pictures:)

OH, does anyone have a good copy (digital) of that Turkey pic? If you remember, those got lost and all I had was the collage which the pic was small in. Let me know or just email it to me:) I would love to have that in a good quality size for the collage and for myself. That was one of my all time favorites too:)

Well, that is all for now.

Katia's hug counter is over 20,000 too:) Unbelievable! I can't wait till she can sit down and read this site and fully understand all the guestbook entries and LOVE, pure LOVE!

Love, Tracy








March 11, 2005 11:30 AM

Good morning:)

Ms. Katia is doing just fine with her head. She has promised no more clowing around. I think she is basically "padded" by all of us around here. We are pretty much on the over protective side, all of us, Sharayah and Tatiana included. Katia is never alone so she really can't work her way into too many accidents. In so many ways, although she is 5, she is like a 2 or 3 year old so we really keep an eye on her.

This morning she asked me for pancakes and said she would love me forever IF I made them? I looked at her and she chuckled this belly laugh and said, "I always love you forever this big (made a big heart with her arms over her head), but I really want 5 pancakes:)" Of course, she got her 5 pancakes! Who could turn her face down?

Anyway, right now she is playing and singing with a preschool game and she is singing along with all the songs. Myron is working on a new song in the studio in the evenings and guess who is going to be making her musical debut? That's right! Ms. Katia:)

Tatiana helped with a song quite some time back when she was about 7 years old and it turned out really cute. Now it is Katia's turn. She knows her part very well:)

I will probably be back later today but I wanted to jump on here and remind you that today is the last day for the PONCHOS listed above and for those of you that haven't seen it, with each poncho comes a "Ladybug Club Bracelet" plus part of the proceeds go the family of Michael D. They don't know we are doing this yet and I would like to get a decent amount of donations for their family. They are going through so much right now that no family should have to face. I have followed Michael's journey for quite some time. If you would just like to help their family in some way, you can add to these donations via The Katia Solomon Fund, please just make a note it is for MICHAEL.

Also, there is only 6 hours left in the "Hat Auction" listed above. So drop by and place your bid. Proceeds go to KSF which helps us do more drives, informational brochures, etc.

Someone had placed a note in the guestbook about one of their favorite "Past Pics of Katia" so I thought.... what a great idea! So, here is what I want to do. In the guestbook, put what your favorite pic was (maybe an idea of when it was) and I will gather up those ideas and make a collage of pictures for the site:) How is that idea! I know I have a TON of favorite pics which I use as my screen saver. I think there are 633 family/Katia pictures in my screensaver program right now and I continue to add more:) So post your favorite "Past Pics of Katia" and I will hop on that some time next week:)

Love, Tracy









March 10, 2005 10:40 AM

Good morning:)

As I type, Katia is playing with the letter magnets on the fridge. It is amazing how much fun she has with those things every day!

Last night, she gave us a scare. She was goofing around in the living room and fell and hit her head on the table, the back of her head. There was no crying. I was getting something done in my room and when I turned around she was just standing there a little teary eyed. I asked her what was wrong and she said she hit her head. She didn't even seem like it was bothering her but that she felt she should just tell me. About that time, Myron walks in and she tells him. He asked her where and she showed him. When he put his hand there, it was bleeding, quite a bit.

It ends up that she punctured a small hole, like a pencil or a stick had poked in. It took about 45 minutes to stop the bleeding but she seemed okay. It was bedtime and of course, I didn't want her to fall asleep quite yet so we stayed up and watched TV for a bit. Her head was wrapped (look like an injured soldier) to keep pressure on the bleeding area. Finally she said she was all better, I took off the bandage and no more bleeding. Today she is just fine. Since she has hair now, you can't really see anything and it is hard to even find the area. I put antibiotic cream on it last night and today and she said, "You are a good doctor, it is better." Isn't she sweet. Of course I gave it the final touch of a good mommy doctor and kissed it:)

She scares me because something so simple can really hurt her. I don't like to pin her down but I also don't want her to get hurt and have to go to the hospital. That would just really upset her. If she gets sick or hurt and we have to go in, she says, "This isn't good, this is just not good!" That is what she kept saying when she was breaking out in the last rash or getting the last fever. She was getting warmer and she was getting mad at her body for getting a fever. I don't blame her.

Well, aside from that. I think I will let her relax today:) No cleaning. Day off:) For the both of us!

I am going to go check on a few sites:)

Love, Tracy

PS Don't forget the hat auction above. It ends today or tomorrow. I think tomorrow. They are really colorful and cute!








March 9, 2005 8:20 PM
New pictures up:)



March 9, 2005 1:30 PM

Good day:)

Katia and I are taking a break from "cleaning" right now so I figure I should update. We decided to go out and clean the back porch up, straighten it up and such. It turned into cleaning EVERYTHING on the porch. It had gotten dusty over the last few days. I think I have Katia too trained to spot dust. Anyway, we are done. She likes to help me (which usually means pointing out what I miss-I pity her kids).

Well, aside from that, what else has changed? We decided not to go down on her steroids this week just to be on the safe side with her hands and feet. She does seem to be edging away from being hungry 24 hours a day so it seems we are at a level of steroids that is doing its job without so many side effects as far as her appetite, blood pressure and such. No more temper either:)

We haven't baked our Easter cookies. I didn't get them yet. I am trying to stretch it out further to the weekend. A household only needs so many sweets around... some of us don't need the extra pounds.

It has been very rainy or windy these last few days and today it has turned out cold here. That is a good time to get some things inside caught up. As soon as Spring gets here, we have a lot of yardwork to do. A LOT! All last year, some bushes have just grown out of control and the backyard really needs some fixing up. The fence in the back came down with the hurricane and is basically standing on its own right now (that is the neighbor's fence) and most of the grass seems to have died. We have about 3 or 4 trees to dig up because they just got damaged beyond repair. Seeing that this is a household of 1 man and 4 girls, yardwork isn't our "strong" area. Go figure:) But, the house stays clean:)

I haven't really done too much checking up but I will update on a few of the prayer request right here.

It seems Bailee is improving with each day but her ears are very plugged up right now and we know, from experience with Katia, that can be such a downfall. It cuts off communication and being able to watch TV for amusement and escape.

Benjamin is having quite a few symptoms appear recently that is setting him back.

Elli is hoping to escape this coming week!! She is just over a month out of transplant and has engrafted:)

Daniel G. has an infection in his abdominal area causing him quite a bit of pain.

Emma still needs constant prayers for her breathing to not be such a task for her body. Her lungs have a lot of healing to do.

Thank you for continuing your prayers for Katia and all of our friends.

(((((((((((((((HUG)))))))))))))) You help miracles happen!

Love, Tracy

PS Please remember the Avon special, the hat auction and of course, the PONCHOS. Each thing helps KSF help others.

Also, I am working on an update about Jerry Gomez so I will post that today sometime. We do have an upcoming Blood/Marrow Drive in Hyde Park on the 19th of this month.











March 8, 2005 3:40 PM

Good day:)

We made mini chocolate chip cookies yesterday and today they are all gone... HMMMMMMMMMM

Okay, no pointing fingers:)

Today, Katia has pretty much been just "attached at the hip" so WE have been updating a few things on the computer, working on some KSF brochures and watching the Bambi video. I don't think Katia had seen this movie until a few weeks ago and now it just plays all day. When the video pops out, she pushes it right back in.

She wants to make Easter Cookies, which if you remember was a very fond memory of hers the whole time she was hospitalized last year. Although she wasn't hospitalized until August 2003 (4 months after Easter), her biggest memory was Easter Cookies and the EasterEgg Hunt. So, it is nearing that time again. She is SO happy! She keeps asking me if Walmart has the cookies (we don't do things from scratch) and I told her, they are there now so next time I go, COOKIES! I am so happy to be able to make more memories.

People ask me have I ever feared losing Katia? Many many times. We have definitely faced that fear way more than we let on to people. There have been extreme amounts of time. Everyday is a precious day and very much appreciated and enjoyed. Recently, there have been a few kids who have either relapsed or become sick from other effects of transplant and have since passed away. A few of those were further along than Katia and in better health then Katia, almost back to their "normal lives". We know there are no guarantees. WE don't live each day that way but we do know how each day counts. Each day is a miracle given to us. I do feel God has BIG plans for Katia so I look forward to that. I think I would go crazy if I thought about all the "What if's" so I chose to live each day and when the next one arrives, live that day.

I have a book that I started when Katia was diagnosed. In that book, people used to sign that would visit Katia or the nurses and such would sign. Even Sharayah, Tatiana, Myron and myself. We would write notes to Katia, for her to read when she was bigger and know how much we loved her. This was before I started this website.

In this book, I made a list of the many kids I have met along the way and I have added to this list up until I misplaced the book during Katia's transplant. As people passed away in this book, I would put a red cross next to their name. I used this book as a reference for prayer. The other day, Sharayah located this book while looking for something else. Before I had misplaced it, nearly 25 percent of the names (maybe more) had crosses. Now 67 of the 134 names, have crosses. Not all of these are patients dealing with Cancer but they are all either cancer or blood related diseases. This is a fight many people are fighting. Recently, it seems doctors and researchers are finding more and more ideas for cures. I just pray these cures come about very very soon. Too many losses.

I didn't mean to come here and be down. It was just something that was on my mind. I do have very high hopes for Katia and many others. I follow a lot of people's websites. I don't get by as often as I would like or sign guestbooks as often as I used to. One thing I take away from visiting so many sites is an insight into so many lives. I also find hope in people's recoveries, years of remission and new ideas of treatments. At the same time, I see people lose their loved ones. I cannot imagine being in their shoes. I do not want to know that pain. I don't want anyone else to know that pain. My prayers are for the doctors and researchers to find cures that are readily available.

If you are checking this website, I know your heart is in the same place as mine. I know you care. I know you want a cure to be found. I know your heart goes out to the people fighting illnesses and diseases. I am thankful you are in our lives. THANK YOU:)

Love, Tracy







March 7, 2005 1:21 PM (Prayer Request added and updated)
WBC 4.6
HGB 12.2
PLT 197
ANC 2000
No Lung Function Test done


Good day:)

Well, we are back from clinic. All went well but for some reason, on the way home, the Lung test came to my mind and it wasn't done. I am not sure if it wasn't gotten together in time or if we all literally forgot about it. Katia keeps my mind pretty occupied when I get to clinic and when we got there, we noticed red bumps on her hands, in the palms and the soles of her feet (usually means a flare of GVHD). So that was my concern when the nurses and doctor came in.

I am not sure why there would be a flare up since she is on steroids but we are going to keep an eye on it for the next 2 days and before we wean down the steroids any more, figure out what we should do.

Katia then had her Dacluzimab transfusion today which always goes smoothly over 45 minutes. As you can see her platelets dropped from 255 to 197? Her WBC came down from 7.5 to 4.6 (that I am more comfortable with for Katia). The platelets, I am not sure. A lot of these weird labs can be because of the steroids and other treatments she is on. So, we will just see how she does and what her next labs say.

Katia's eyes are still red but not as bad and her mouth has almost totally healed now!! That is a good thing at least:) I am glad to see that is getting cleared up.

We talked about her next spinal chemo and we want to see what happens with her skin right now and plan on two weeks waiting to do it. I tend to agree. That is just something that will cause smaller problems to grow and new problems to arise. She worries me when she starts feeling so sickly.

Her weight? Well on February 16 (right before we started the steroids) she was 13.3 kg. Today she is 15.3 kg. So, she has definitely gained weight. Around the house, we weight her (in kilograms) and near the end of the day (after she has packed it all in) she is usually right around 16kg. She is in her "medium size" clothing right now. We have things divided into 3 sizes. Her smallest, medium and the large ones when she is retaining a lot of liquid in her belly. What that happens, it is like her neck disappears and she is just a head on a body with small legs. That is when she has so much trouble with losing her breath. I really feel it is due to extra weight and the steroids.

Well, Katia has many plans for me this afternoon. For the most part, I am giving my day to her. We are going to bake cookies and she wants to trace her hands and cut them out. Where does she come up with her ideas?

Also, if you haven't noticed, please look at the Ponchos. I really want to be able to help out Michael's family so $5 from each poncho goes to them and also you get a free "Ladybug Club Bracelet" with each poncho. These are VERY NICE, WELL MADE ponchos that are made with a high quality fabric. You must email me if you are interested so I can tell you what colors are available. These are children's sizes. So, email me before you pay and I will let you know what is available.

Love, Tracy

PS Like Avon? See the special at the top of Katia's website. Proceeds go to KSF.



March 6, 2005 3:22 PM

Good day:)

Today is a nice day so I took Katia and the girls out to feed some ducks. When we got there, some other people were walking up with some bread and Katia thought the ducks wouldn't want to come see us. WAS SHE WRONG!!! We got all the ducks, pigeons and every flying bird around! They were all over the place. Needless to say, about 10 minutes later we were out of bread and came home:)

Katia had fun and Sharayah and Tatiana always like feeding the ducks, too.

Not a whole lot going on here today. I am pretty much trying to keep Katia on a more normal eating routine. Granted, it is a lot more often than the average person but I don't want her upset all the time either. She has done well today.

Well, I will update when we are done at clinic tomorrow. Pray first that she will do the lung function test and that it will turn out fine:)

I am pretty confident her labs will look good. I was looking back over her old labs and the day before she relapsed in August 2003, her labs were all perfect! Nothing out of the normal range. I don't really go with lab results on much more than just that, lab results. I am always glad to see a good platelet count and hemoglobin count but ultimately with Katia, it is all what is going on inside her.

Her next spinal chemo will probably be early next week so that most likely means some sickness coming up. She only has 2 more to go so that will be good. Although right now, we feel very confident with her spinal fluid due to her getting the chemo. So, when it is done, you are on your own.

Thank you so much for checking on us:)

Katia sends a "Hello this big" (she has her arms open wiiiiiiiiiiide!)

Love, Tracy






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March 5, 2005 3:30 PM

Please see the Poncho section above as there have been some changes on the Ponchos that are left.

Katia is doing well today. She is eating well and I must say, her vocabulary improves as she tries to talk me into giving her this and that, especially donuts. She has learned to plea with me quite well.

Also, an update on Ann, the woman who fell at Thursday's event. She ended up breaking her hand, not her wrist and did not require any surgery. I am so thankful for this. I will see her on Monday when we go to clinic. I still feel so bad for her.

I want to thank so many of you that are spreading the word about Marrow Donation. I have heard from quite a few people recently and I am glad to see that so many hearts are into such a good cause. There was an entry in the guestbook where someone gave their "Ladybug Club" bracelet away after sharing Katia's story. I have gotten a few emails where people pass their bracelet on to someone else and that just really touches my heart. Thank you:) I wish EVERYONE could be in the Ladybug Club but I also know supplies are limited. I wish they grew on trees all over the world:) That would be nice!

Today, Sharayah and Tatiana are drawing pictures with Katia (when she isn't eating). Mainly we are trying to keep her mind off of food. The funny thing is how she can bring the subject of food into any activity and explain exactly where, in her great big belly, she can still fit more food. She isn't easy to tell "no" to for a couple of reasons. One is she loses her mind over it and the other is because we feel bad for her. She certainly doesn't look like the same Katia as last week though.

Well, it seems there is a "food crisis" going on that I need to resolve so I better sum this up. She is standing in the kitchen watching the timer (it is set for more food) and waiting for it to beep.

Please also pray for the lung function tests on Monday. I hate hearing her short of breath although I truly believe it is due to her added girth:)

Love, Tracy







March 4, 2005 12:18 PM

Katia is one eating machine right now!!! That is the best way to sum her up. She doesn't stop. She is so puffy and her tummy is so big that she worries us. She is short of breath and just craves more and more. We don't give her something each time she ask or she would pop. I am really looking forward to the wean although I know it will have its withdrawl and she won't want to eat. I told Myron, I should video her now scarfing down a big bowl of Mac & Cheese so I can show it to her when we are wanting her to just take at least 2 bites.

On Monday, Katia will go in for a transfusion of the Dacluzimab and also do a lung function test. We hope she will be able to do the test as it requires following directions and she is pretty young to carry this test through. Her doctor and I both believe she should be able to do it though. It is the test of taking deep breaths, holding them in and then blowing as hard as she can into a tube to measure her lung function. She has had to use the little device before when she had the fungus in her lungs so she is ready to "play" with the device again. How good is she at holding her breath? We will see:)

I would be much more worried about Katia if she still was unable to walk still or inactive but through all of this, she is remaining decently active although she has to slow down due to her being short on breath.

One thing for sure, Katia is a happy baby right now! She is a chatterbox and all full of smiles most of the day. We all love to see that! She is so loving and lovable! I have to say, Katia must give me a 100 kisses a day, literally:) She is forever kissing my hand, my arm, my cheeks, whatever. If I sit next to her, or anywhere for that matter, she comes right up and snuggles up to me and kisses me and hugs me:) I play a game with her that we will be sitting somewhere and then I get up and move. She follows wherever I go. If Katia could go to stores, I don't think she would be the child to wonder away from me. She is attached at the hip:)

I have promised her to bake cookies this weekend with her so she is eagerly waiting for Saturday morning.

Also, we are still doing the "Treasure Box Toy Drive" and we really need toys. We have gotten a lot of stuffed animals. We are very low on toys. What we look for is things like "Party Favor Items", activity books, crayons, packs of cars, inexpensive DVDs, CD's, Cassette Tapes, Handheld Games, Puzzles, WaterColor Sets, Hats, Barbie Dolls and clothes, Playsets, Colored Pens and pencils, etc. These things go to kids from maybe 6 months old to 19 years old. They are very very appreciated.

We are also trying to get together portable CD players to either give to the kids or loan to the kids on the floor. They don't have these available to them.

As a parent, having LIVED on that floor for months and months and spending so much time there, I know that the other parents as well as the staff really like to see these kids happy. They go through so much and have so much expected of them to do that they really deserve happiness and breaks. These children are very easy to please and bring a smile to their face. They know they are battling for their lives and they do this with grace and honor. I am amazed. Me personally, I think I would be hiding under my bed when my medicine came in or different treatments were scheduled. I can't imagine having my blood pressure and temperature just being taken every 4 hours around the clock. That would get annoying. But, they do it:)

So, if you could be a part of this, it would be greatly appreciated.

One thing we have learned through all of this is we will do whatever we can to make this situation better for the patients and their families. There is so much we want to do but we know we are only capable of so much. A lot has to do with how well The Katia Solomon Foundation does with fundraising. Right now, that hasn't been too great but we do have some plans for upcoming fundraisers. Until then, we try to do more with different types of donations. We very much appreciate your help. We really do. I wish words could describe that but I don't know the words. ((((((((((((HUGS))))))))))))))))))))

Well, I better sum this up. Katia is hungry:) When we spoke at the Walmart/Sam's Club event yesterday, I told them how much she eats. I should have told them that I end up having to visit their store every other day. I am waiting for them to start greeting me by name.

Please continue your prayers for Katia and all the patients fighting illnesses. Please continue to pray for our family as well as all the other family. Please continue to pray for KSF that we can accomplish more of our goals in the coming months.

Enjoy your weekend, hug your family:) Have fun!!

Love, Tracy









March 3, 2005 1:30 PM

Hello:)

Today, we had a chance to go speak at the hospital with some fabulous people!! The Walmart and Sam's Club Associates. These two organizations raise a LOT of money for All Children's Hospital and the Children's Miracle Network. They have raised over 6 million dollars for All Children's Hospital in St. Pete.

We weren't there for very long but while we there, they showed some of the Telethon Footage from their 2004 Telethon of different families and Katia's story. They showed the past interviews with our family and then we did an updated interview today.

I remember last year's lucheon with the Walmart and Sam's Club associates. It was around this same time. We didn't attend it but I was walking back from the Ronald McDonald House which takes me through the parking lot of this building where these events take place and there were just people everywhere!!! They were very excited and as soon as I could, I had to find out who they were. Well, if you have ever been to Walmart first thing in the morning (yes, I have) you hear them do a Walmart Cheer every morning. This is a very enthusiastic group of people and they put their hearts and effort into organizing fund raisers. Last year they present ACH with over $700,000.

Well, while there we got to meet Mary from the Bachelor. Remember Myron met Byron last month at the post office. She was there to speak about Walmart's Contributions to ACH and to applaud their efforts. Mary is a very sweet person. Katia recognized her right away because Katia stays up late enough to watch TV with me when I get to see the shows I record and things finally settle down at night. Well, The Bachelor is one of those shows we watch:) Katia always thought Mary was very pretty so I think she really got a kick out of meeting her.

Did we take pictures you ask? OF COURSE:)

So, here they are as well as the one with Myron and Byron. I will add them here so they can go over to the Journal History area. I have a few more pictures of some "friends of Myron's" but I will add them later. You won't believe some of the other people Myron has recently seen:)






With all the excitement from today, Katia's belly is bugging her right now so she wants some soup. It is cold here today (well Florida kind of cold) so soup sounds nice to me too.

Also, I have a prayer request. While we were at the hospital today, Katia had a little "accident" so our friend, Ann Miller, who is one of the hospital's PR people and a good friend to us over the last few years, was helping me replace Katia's pants with a little skirt we made out of some very colorful scarfs (the theme today was a Cruise Ship Theme). Well, Ann went to go get one of the scarfs and she fell. I haven't heard an update but it seems she broke her wrist. I feel so bad about this because she was in the process of helping us when she fell. Ann has been such a sweet person to us and has always gone out of her way to come see us during admits and is just a good friend. Please pray they can get her arm set without surgery and that she will heal quickly. I will call and check on her in a bit. Sorry, Ann:)

Love, Tracy






******

March 2, 2005 (second update today)
6:00 PM

Here is one of them.


James (in need of a miracle)
James is a 7 1/2 year old boy that has been suffering with Wilms Tumor since March 2003. They have gotten him in remission several times and it keeps coming back. He had a stem cell transplant recently, and had been doing well. However, they had found out that the cancer is back again. The doctors have told them they did not think there was much else that they could do for him. They are trying chemo
again;however, they do not think it is going to help much. He has had a caringbridge page since September 2004 and has had about 62 visitors. Let's give his family a WARM CARINGBRIDGE welcome and a lot of encouragement. Miracles do happen.



I am just on here adding some prayer request and checking on some kids. Also all orders through today for Ladybug Bracelets and Totebags are to the post office:) I have to thank Myron for getting things shipped right out!!!

Katia is out on the back porch with Tatiana playing in the castle. I love hearing her scream and laugh:) Not so sure my neighbors do but... they understand.

Love, Tracy






March 2, 2005 3:43 PM

Good day:)

Katia and I have been watching old home movies over the last 2 days which she LOVES but it gives me mixed emotions. It is like living over everything again. She gets mad when she sees her hair falling out or if she is crying in the movie (she always says she must have been hungry if she was crying).

We have watched all the way through October 2002 so far. We started at the January 26, 2000 tape of the day she was born. The quality of the filming is not as good as I thought it was but I am thankful we have been filming and can look back on all the good times, not so good times and the times we are so thankful for. Of course, Sharayah and Tatiana get embarrased anytime they see themselves (through awkward ages) or hear themselves talk but I think they were very very cute:) What happened? LOL, Just joking:)

I do have to say through everything, Katia has been filled with love and laughter. We have been so blessed with her attitude through all of this.

How is she doing currently? Well, she is hungry all the time. She will say her belly hurts (and it is rock hard) but she has to eat more because she has room left for just one more thing. She can point right to where that empty spot is. She is something else.

Yesterday, I updated a lot of the prayer request but I ask for you to pray for a few people we know of that really need bone marrow matches now. They don't have time to wait. Two are here local, Jerry and Rafael and one is not local, Jaysen. All three desperately need a match. I will update on Jerry in the next few days. He had a pretty big appointment yesterday to talk about further treatments. Right now, Katia is watching a home video that she is 2 in and it is right before I started this Caringbridge page. We are walking around outside looking at the ducks by the apartments we used to live in. She could barely talk but she still had that look of determination when she was trying to get her point across. She is mad because the ducks don't want to play with her, they want to go back in the water. Katia was doing so good around this time, was in remission, had completed chemo treatment but right around the corner was a huge scare of our life! It was when she hit the 107.8 fever and ended up in the ER not breathing. I think that really hit home with me when I saw that we really couldn't let down our guard. That scared me more than anything in my life (well to that point). I think of other families that are just starting this journey and I wish no more people would ever have to face anything like this. No child, adult or family should have to face that fear.

Okay, on to a better scene now:) In the movie, Katia and Myron are right where they love, playing the keyboard together and singing and dancing. I like those scenes:) Our family loves to spend time together, relaxing or having simple fun. I see that a lot in these videos and I am so thankful Sharayah and Tatiana have been that way. It is truly helpful going through all of this.

I love home videos:)

Love, Tracy







March 1, 2005 10:27 AM (Prayer request updated)

Good morning:)

As I type, Katia is having a fabulous time watching Sesame Street and trying to sing along with songs. I used to love that show when I was little (long long time ago).

For those of you that have recently ordered the "Ladybug Club Bracelets" or the "Sharing Hope on the Wings of a Ladybug Tote Bags" they are in the mail. While supplies last, we will get them right out to you:) We are working on another idea for the upcoming SpringTime so keep an eye out. I put the mail that needs to go out in a big Ronald McDonald House ToteBag and Katia loves dropping it off in the bag once I get it into the envelopes and addressed. I tell you, this is a family activity. We really love doing these projects so help to keep us busy busy:)

On another note, please pray for the family of Angel Chris Becker. He passed away, after a long and courageous fight with neuroblastoma yesterday. He was also a patient at All Children's Hospital but had also traveled to New York for more treatments. We always heard about him but never actually met him at the hospital. He was actually re-admitted the day we last left the hospital. I am sure he is going to be so so missed. I just recently discovered his website.

As a parent of a child with cancer, this is one thing you wish you didn't have in common with so many others. But, when you are on the oncology floor at the hospital, it becomes your whole world. Suddenly you are in the middle of something you only knew from TV or stories of others.

Myron and I were talking yesterday about some of our goals (and the goals of the members of our board) for The Katia Solomon Foundation and a few of them seem simple but are proving to be much more difficult than you would imagine.

One, that EVERYONE would know what the National Marrow Registry is and how to be a part of it. It should be as well known, at least, as how you can become an organ donor.

Second, that anytime a person donated blood, they would be asked and given the opportunity to register as a marrow donor.

Thirdly (this is so important!), that all OBGYN doctors would direct their patients to information on how to save/donate their baby's umbilical cord. This is not information that is easy to come by and when you do get the information, it has proven to be very difficult, and sometimes expensive, to follow through. Umbilical cords, for the most part are thrown away because either parents don't know why and how to donate or because it is too expensive. This is how Katia's life has been saved, a cord!! Something that is so full of stem cells and life that is typically thrown away. When I gave birth to Katia in 2000, I never heard about cord donation. It was new still so I can understand that. But, now, it should be very well understood by all doctors, hospitals, parents-to-be, etc. If you are out and about and see a woman who is expecting, share this with them. Someone's life saving miracle could be their baby's cord. They may look at you like you are nuts but someone talked to the lady that donated Katia's and I would just love to be able to give them and the mom that donated this cord a HUGE HUG!!! Right now, the best information I can give you for someone is for them to call 1-800-MARROW-2 to find out more information for their area. If you have one of the "Ladybug Club Bracelets" you can show someone that and share Katia's story. I think sharing actual stories, really helps put things into a perspective that is easier to understand.

Myron and I have a speaking engagement on Thursday with a large group of people. We will share Katia's story with anyone who will listen and ask them to do the same. We aren't really shy at all and we know it can save lives.

If you would like to help us, please go to The Katia Solomon Foundation website and see where help is needed. Keep the Foundation in your prayers that it can grow and flourish and reach out to many many more people. We have found that most people we talk to are more than willing to register but they either didn't know about the need or they didn't know how to register. Cost is also a big thing as there is normally a fee to register as a marrow donor. We try to raise money to overcome these fees at the drives we participate in and it is our goal to overturn that fee someday, or at least be a part of doing so.

Thank you for letting me share that with you. That is what was on my mind when I went to sleep and when I woke up.

Please continue to pray for the families listed above in the prayer request section or pulldown menus. There are so so many others that aren't listed. There will be a cure someday.

Love,Tracy











February 28, 2005 12:31PM
WBC 7.5
HGB 11.3
PLT 255
ANC 4500
IgG Level-560


We are home from clinic. All went well. Ms. Katia was a chatterbox the whole way there, the whole time there and then slept the whole way home:)

Her counts all looked good, she looked good and she is up to 14.4kg. She is finally peeing quite well, really well actually so I think alot of the weight from water has drained although I am sure there is still more there. She actually peed RIGHT BEFORE she got on the scale:)

I am waiting for some other labs to come in regarding her immune levels but I don't think they will be low enough for a transfusion. I hope not. That is the 5 hour transfusion.

As far as her skin, it is looking a lot better and so are her eyes 80 percent of the time. They still flare up for no given reason and then they will look better at other times. Maybe it is just that the steroids are getting in there? She is now at 15mg every other day and on Thursday she will go down to 10mg every other day. The food cravings are at every 15 minutes!! That is good for the most part:)

Her mouth, to me, is about the same as it was last week. Due to the fact her skin and eyes are back to being clear all the time yet, I am still going to let it go that it is GVHD BUT if it continues to be there and not go away, I am going to push my thoughts more on that. I don't want to put Katia through anymore pain of a biopsy on her cheek but I also want to make sure we are covering all the basis and know what we are treating for sure. I look at her lab counts and just think there is something brewing because although the numbers look good, they aren't normal "Katia numbers" so... I am going to see what happens and pray that things will just fall back in line.

What is Katia up to today? Well, right now she is parked in front of the TV watching "Ice Age" and eating a Tortilla (I think she actually grabbed two). She said, "Oh, this is the way to relax!" She is funny:)

She got a new Build a Bear in the mail yesterday and she has just been loving that little bear. Its name is Ladybug. Over the years of Katia's treatments, she has received some very nice presents and letters and of course, tons of cards! Katia definitely enjoys her mail, but, as a parent, I enjoy seeing her so happy. Katia has never been greedy or pushy and she just really does have a huge heart of gold. As a family, we like to see her happy and hear her laugh. That is medicine to all of us and just makes us sigh, and build up strength to continue. It reminds us what so much of this is for. I don't know how we would have faced all of this without the words of encouragment and the genuine good hearts of each of you. I look at that page counter (at the bottom of the page) and I am just shocked that nearly 1 1/2 MILLION hits have come across this page. I just know that Katia is touching lives and I am grateful for that. I don't know so much how to put that into words (I know you find that hard to believe) but I am very grateful that so many people love our little Katia. You are happy when she is happy. You hurt when she hurts. You cheer when she gets good news and you cry when she gets bad news. God bless you. God bless each of you:)

((((((((((((((HUG))))))))))))))))


Love, Tracy

PS Please say a prayer request for a little boy going into surgery today for his brain. The family is playing this will be a cure for problems he has been having. Doctors are worried this may just be uncovering a problem with tumors. Please pray this is his cure. There is no further information. Thank you:)











February 27, 2005 11:57 AM

A little add on. The "Ladybug Club Bracelets" ordered last night and this morning are also packed and ready for shipment tomorrow:)

Are we getting quicker or what!! We have 37 new members!!!

Love, Tracy and KATIA





February 27, 2005 10:04 AM

It is a rainy rainy day here.

I had told Katia we could go outside a bit if it wasn't sunny but I didn't picture this... Sorry Katia.

She wants to do something and she needs to get out of the house a bit but I think she will have to wait till our trip to clinic tomorrow.

She is getting quite puffy and last night it became quite concerning to me as she was having to catch her breath more often. I weighed her and she is 15.8kg. That is up from 13.3 the other day. That is quite a bit of weight gain so she may be retaining too much fluid and need some help getting that water off. I am going to bring that up tomorrow at clinic, although I am sure they will notice the puffiness and weight as soon as they see her.

Well, I will be back a bit later for more but I figured I would update about her weight and such. I need to take her blood pressure right now.

Love, Tracy






February 26, 2005 2:07 PM


Katia's "Ladybug Club Bracelets"
Are you in "The Ladybug Club"? Join today with one of these bracelets. Katia would love to have you as a member!!! Please specify if it is for a child or adult:)



All the bracelets that have been ordered through this morning, are ready to mail Monday so keep an eye out for yours:)

Katia loves to see her "Ladybug Club" mail going out. I haven't counted how many members there are but I know there are over 200 so far. What a great thing!!

Katia is doing okay today. Between eating, she is playing with Tatiana. She is getting quite puffy again in her face. I will probably put some new pics on here tomorrow or maybe just add one into the journal update. She isn't shy about the puffiness because to her she is just getting bigger and stronger like we have been telling her to do. She is very proud of everything she is eating and the fact she is gaining weight.

I am curious as to what her counts are (we go in on Monday) and how the steroids are affecting her body inside. She normally runs into a few problems here and there with her counts, her bones and just the wearing down on different organs. She does get out of breath very easy so I do look forward to the weaning of the steroids. The mouth sores (mainly on one side) are still the same so I am going to ask about the oral surgeons doing a biopsy to get a definite answer on what we are dealing with there. To me it still seems like we are dealing with the Oral Lichen Planus maybe.

I don't know.

Thank you so much for always checking on Ms. Katia and our family. I know I always say that but I ALWAYS mean that:)

Katia just came in to give me a kiss and tell me she loves me. That just really makes my days!!! She likes to watch me update and she wanted to show me her big belly:) It is big!

Well, I better close this out. My computer keeps acting up like it wants to shut off and I would hate to lose my update. We all know how fun that is...

Love, Tracy
PS Are you a Ladybug Club Member:)







February 25, 2005 1:04 PM

Good day:)

First an update on Ms. Katia. Her eyes are about the same today but we are doing the steroid cream on her eyes 2 times a day now instead of once so I am hoping they will clear up over the weekend. That would be really nice.

We have weaned her steroids from 15 mg a day to 10 mg a day. She is an eating machine right now and is also getting quite puffy again in her face and belly. Hopefully she won't get too puffy or have too many side effects from the Prednisone but the appetite is a welcome thing:) She is also eating heatlhier foods more often and not so many donuts or pie:) That is good. When she has this kind of appetite, I can bribe her to the foods I want her to have more of and reward her with some of the food she wants more of. Is that devious or what? But it works!!

For those of you that haven't clicked on the Ladybug Club Braclets link, I want you to know that they are $10 with NO Shipping and Handling. As long as I have the beads and string (which I do right now), they will be shipped right out (usually following the weekend) so hurry while supplies last. For those of you that do have them, we are glad to have you in THE LADYBUG CLUB!! I think it is so neat when I see those in the guestbook entries. It is a great club with a great reason.

I always tell people that if each of us would tell 5 people and they would tell 5 people, etc. about the need and the simplicity to register as a marrow donor, the registry would grow by at least a million by 2006. Wouldn't that be super!!!

It is a rainy day here which is needed. The ground was getting pretty dry. I know those of you that have inches of snow outside can't imagine the dry ground. I am definitely someone that appreciates living in Florida:)

Katia says, "Isn't today beautiful?" She loves to hear the rain. She isn't able or really wanting to be outdoors so much but she likes the relaxation the rain seems to bring.

It is nice that the weekend is coming up. The weeks stay so busy with the other girls that Katia doesn't really get to spend time with them. Does it seem kids have much more homework these days? When I was in school, I had about an hour a day and some days I had a project to work on but now it seems like they get home so late and have so much homework to do. Sharayah and Tatiana are both very good about getting right on their homework (my rule) and getting it out of the way. They are very self motivated for the most part. I am proud of my girls:)

Well, Katia wants to go out on the back porch and watch the rain. Of course she wants to take a snack out there. She hasn't been playing in her castle too much because she gets so winded out so easily right now. She has to catch her breath more often trying to crawl around in there.

Also, a prayer request for Katia. She is losing more hair and it is thinning out and becoming more noticable. She is concerned by this as are we. Just pray it will stop falling out and she will keep her pretty little curls. It is upsetting her right now. She asked me was she on any bad medicine right now (meaning chemo) that is causing this and I told her no. I told her it was due to the GVHD on her skin and it should stop soon.

I think that is all for now. I may be back later because my brain isn't working too well right now and I am sure I have forgotten something:)

Love, Tracy







February 24, 2005 1:00 PM

Good morning.

As I type, Katia is coloring pictures. She is doing such a pretty job and is so happy she can

draw more of what she wants now. She tells me what she wants to draw and then WALAH (however you spell that) it is there. She is so happy with herself:) I like to see her content with herself.

Her eyes are definitely not doing too good right now. They are very red, not dry it scaley but very red. I am not sure what is going on with them. I ask them if they bother her and she just brushes me off. I think they do. She is on 15 mg of Prednisone per day, dropped to 10 mg yesterday. It seemed to be working and still seems to be improving the areas in her mouth, but now the last 2 days, her eyes have been getting redder and redder around them covering most of the lids and under her eyes. On each eye, under it, there is a white patch within all the redness. I am confused. It is not something I am going to rush her in for but I don't think we are totally on track with the treatment. I have never really seen this before but that is the way Katia has been all along, she follows her own set of problems. Just please pray that we can pinpoint this problem and get it treated and cleared up. I had really hoped the Prednisone would be the answer.

On to another topic.

The Katia Solomon Foundation. I know most of you that have been following Katia's story, remember when this was started back in November 2003, while we were searching for a match for transplant. This foundation was not just started for Katia, although it did help us a lot while we were in the hospital and Myron was out of work. We met a lot of people as we tried to figure out how to do bone marrow drives
easier and how to clear up problems that arose. We figured that once we had gone through a lot of the hassle, why make others go through the same thing so we have kept many of the things
going. There is a boy at All Children's right now in desperate need of a match for transplant. He also has leukemia AML and it has proven to be very aggressive. His family lives about 3 hours away from the hospital so they make many long trips back and forth. Another thing is they don't speak English. Myron is always willing to help explain things, ask questions and both of us do all we can do to step in and "be there" for them. It isn't always easy for a parent to discuss things with a doctor because we don't always even know the question we are wanting to ask to get the answer we seek. Having already been through so much of what they are going through and will go through, we have an understanding and are able to explain things in a way they will understand.

Myron is currently at a Part Time status at his work, which is definitely a financial burden and struggle (less money in and cost of Part Time status health insurance goes up) for us BUT at the same time, the extra day off allows him another day to work on the Foundation, go to meetings, set up drives, and just many countless things it takes to keep this Foundation going. I have said many times before that we are never bored around here. We definitely are always working on
projects, ideas, organization, ect. Our whole family is involved in this foundation and trying to figure out ways to make this grow and become the help we want it to become. Myron's hope is to be able to establish this foundation to the point he can go to work for it full time. He is very good at what he does with the Foundation, which is so much more than I could possibly put to words. We believe this is what he is meant to be doing and it is not only very needed but very
fulfilling work that truly makes a difference.

The Foundation is financially not on its own by any means. We are turning it into a 501 (c)(3) and also going through our first real tax season... A lot of you know what that all means but it means a lot of financial obligations that must be met and a lot of stress just to sum it up. It gets overwhelming at times but then when a family comes forward that needs exactly what the
foundation offers and hopes to offer in the future, we get our sails full of wind again and just keep on pushing forward. This is something we can't back out of because the going gets tough.

Our family enjoys time together and this is something we can all be involved in as well as the other families we work with. We have a great group of dedicated people working with us to try to make the Foundation all it can be. All of us have our hearts set on what this can truly do.

How can you help?

Well, first of all by spreading the word about what we are trying to do. Also, by checking in with the Katia Solomon Foundation Website to
see the current activities and needs. Every donation truly helps move the foundation forward. Another way of helping is through the Bracelets, Totebags, Ponchos and other fundraisers we run on the site. Those can be found above the journal entries or by going directly to the Sharing Hope on the Wings of a Ladybug Website.

During telethons, they always say the large amount of small donations is what does the most.

More information on this can be found on the KSF site.

Katia is the reason we started the foundation but there are THOUSANDS of reasons why we keep it going. Our family never planned to be faced with cancer, no family does but there are many many families affected now and the sad thing is there will be more tomorrow and the next day. Every opportunity we get to talk to others about this, we do. We have found that most people are willing to help and to register as marrow donors but they not only didn't know they could help, they didn't know where the help was needed.

Someone asked what I enjoy doing most? Well, I would have to say I definitely enjoy quality time with my family. I feel that is a gift from God and that has been made more clear to me over these last 3 years. I also know that when my time on this earth is done, I want to know that I left something behind that is honorable and helpful. When people hear "Katia" I don't want them to picture a little child laying in the hospital but I want them to picture a child that has changed our lives and many lives forever by the way she faced a journey, a hard journey, and went through each day with the attitude of just doing what she had to do and keep a smile on her face. I want
them to see the love that literally fills her life and her heart.

Love, Tracy





February 23, 2005 12:03 PM

Good day:)


Katia has a BIG appetite now!!! It is the center of her whole day. Big change from 2 weeks ago. She is now up to about 13.6 kg which is good. I really have to watch WHAT she eats and HOW MUCH she eats of junk food but she is pretty decent about eating what is given to her, as long as donuts are promised some way along the line:)

Someone in the guestbook said they couldn't see Katia's ladybug bracelet at the park? It is there, just up under her sleeves I suppose. Katia never takes hers off but she does do something cute, not all the time anymore. She puts it on one arm when she wakes up and the other arm when she is going to bed at night. I am not sure what started this but she still does it most of the time. She will put on other bracelets but the ladybug bracelet always stays there:)

Katia's eyes are looking a bit better today so I think the little bit of sun the other day is to blame for the flare up. No more sun!

Also, the prescription was worked out, at least for this month. I called, the pharmacy called and got nowhere. The doctor called and, all fixed:) So, that is good. Thank you for your prayers on that. I tell you prayers work. Not always exactly the way we may ask, but in some way. These days I find myself asking for a lot of miracles for some of our Caringbridge families. I also pray for peace for the families and for a show of support for them by their friends and families and complete strangers.

There is a link above for Jaysen who is pretty much going through a struggle for life each day on his own. I could not imagine going through THIS alone much less to be the one fighting for life alone. So many of you have gone over to his site and left words of encouragment in his comment section. Thank you. I wish there was more that could be done but encouragment from strangers is something that can really lift spirits. He is unable to yet find a match for transplant.

Also, our friend Jerry Gomez is still hoping to find a match. For those of you in the local area, you may see some Katia Solomon Foundation along with Florida Blood Services commercials asking people to come to some upcoming drives we are helping to host. If you are local, please come out. The next one is at University Mall on February 26th. It will be next to the Burlington Coat Factory from 12:00-7:00 PM. If you aren't local, please contact 1-800-MARROW-2 for a drive near you. This is a number to memorize because for anyone you run into wanting to register as a marrow donor or donate their babies umbilical cord, this is the number to give them for anywhere nationwide.

Also, you can Click Here for more information on the Ponchos above. There are only a few left. Please email me to place an order and I will let you know how. Proceeds go to The Katia Solomon Foundation.

Well I am being asked for more food. I feel like a waitress right now:)

Love, Tracy

PS Katia wants to tell you, "I like my donuts".

PSS Please visit the Sharing Hope on the Wings of Ladybug Website to see the projects we are working on. "A family that prays together, stays together."
"A family that works together, grows together."



February 22, 2005 12:48 PM

I never got to updating yesterday because I was trying to fix the pictures for the photo album page:) There are a lot of pics over there because we had a super wonderful time!!! It was so nice to get out and do something and the day was just beautiful!!! Everyone had a great time just walking around the park, playing, taking pictures (of course) and having a picnic:)

Katia is doing well. Her eyes have worsened a bit today? Not too sure why but hopefully they will clear back up again. We are supposed to wean some tomorrow but I need to check with the doctor first before I go down to the first weaning dose.

Right now she is playing a Blue's Clue Game and doing quite well so I have a bit of time to update.

I am also working on an upcoming auction so I will let you know when that is up and going.

I have been getting a bit of a run around with Katia's insurance on getting one of her prescriptions filled and it is becoming quite a headache. This is the prescription that she has been on since the fungus in her lungs and we don't need that coming back. I always try to deal with them a few days before we run out but now we are coming down to the last day here and it still isn't approved. I had a partial fill and that is running out. Please pray this gets straightened out.

Yesterday was such a nice day for our family. It just gave us a chance to get out of the house for a bit and "be free" for a while. That is not so easy to come by as we still follow so many rules and restrictions with Katia but at the same time, we want her to be able to play and have fun and also we want Sharayah and Tatiana to be able to get out and have some fresh air. Katia has a problem with the sun due to GVHD and the steroids but yesterday, was just perfect and basically spent 90 percent of the time in the shade.

Thank you for checking on us and I am sorry if I had anyone worried due to a lack of update yesterday.

Please remember all of our friends in your prayers and of course, little Katia:)

Love, Tracy







*****




February 20, 2005 3:30 PM

Hello from the Solomon household:)

Today is pretty quiet here (other than a few outburst from Katia). When I am not home, this is one of the main things I miss about home. I miss our atmosphere around here. For the most part, it is relaxing and I appreciate that. Sharayah and Tatiana are older so they aren't running around or anything but instead they are quite good at amusing Katia.




Right now, Sharayah is making "Ladybug Club Bracelets" and Tatiana and Katia are playing with toys. If you are interested in buying a bulk of the Ladybug Club Bracelets" (like 5 or more), please email me and I will discount them for you. We want as many people as possible wearing these bracelets and sharing Katia's story as well as passing the word about registering as a marrow donor. Even if you yourself don't qualify as a marrow donor (due to health or age), I appreciate that you pass the word on. Plus, the "Sharing Hope on the Wings of a Ladybug Personalized Tote Bags" make a great conversation starter and they are nice strong bags for hauling your stuff to and from school or around town.

Jerry's family is still hoping he will locate a match. Jerry is the one who's story is above the journal entries with the pic of him family. If you haven't had the opportunity to watch the recent news stories, they tell Jerry's story and how our two families have combined to spread the word even more.

Katia was trying to do some "artwork" today but she ended up getting flustered with herself because she kept going out of the lines. I like it better when it is more "original" but she likes it all just so. Gotta love the steroids.

Her eyes, although still dry and flaky, pretty much are clearing up. I went to look at her mouth but she said it would be better to look at it tomorrow:) So, I will wait. She is definitely gaining some weight. First of all, she is retaining water and we realized about 6:00 PM yesterday that she hadn't had any pee all day!!! I made her go. Weight gain with steroids can be tricky with extra sugar and fluid retention so we have to keep an eye on what she does eat. She is just stuck on her donuts and pies!! The most recent donuts are low in sugar and she doesn't know the difference:)

Well, I guess that is about it for now. Please pray for Katia's health and the steroids that they will clear up the problem without causing extra concerns. Also for our family with some other struggles going on. I also ask that you pray for those on the prayer request and many others that aren't. I start out each morning checking on sites (as I know many of you do) and I make sure to check, if possible, throughout the day and before bedtime. It is routine to me and also lets me appreciate each day more. I learn alot from the lives I have followed and I cherish many memories and stories of those that have passed. This is the bulk of our family's day now. I never knew it would be but I guess nobody really knows what tomorrow holds.

Love, Tracy





February 19, 2005 10:00 AM (new photos)

Well I will start off with some good news:)

Katia's eyes are clearing up:) We are so glad for this as it was very concerning to us how much worse they would get and what it could do to her eyes and vision. Her mouth is also showing some progress but slowly. It was pretty flared up and infected in there in some ways.

How is Katia's moods? Well, not too bad really. She isn't bursting out so much like she did last time around but she is eating a lot more. I am very glad to see that and am sure she will put on a few pounds. Her favorite? DONUT HOLES and MINI DONUTS. Her second favorite? APPLE PIE! She eats her regular meals better too. The only downside to this part is she will be weaned off these steroids in April and probably go through the same things again not wanting to eat. That is all part of the ups and downs of steroids. Our prayer is she will stay healthy this time. Last time she got sick with vomitting and runny stools and that just took more weight off her.

We look at this as literally one day at a time. Other than that, it gets overwhelming.

We are hoping to get out to the Cars for Cancer drive today for a half hour or so. It depends on Katia right now though. The other day, she suddenly became pale so we will see how the day leads us. Sharayah made her pancakes this morning and she has had some donuts. Right now she is back and forth in the house and looking good. What happens is she will just stop and crawl up on the sofa and say, "I need a rest" and go to sleep. If she can't do that, she just looks drained but if she can sleep for 30 minutes or so, she looks a lot better and ready to go again. All of this is due to the medications she has to take. It is just a lot on her body and some of them, she has been on for so long already. We are trying to wean her off Cipro right now. Instead of two a day, she is taking one a day. Last time we took her off, her urine started burning again and she ended up with a bad UTI. So we are going to do this slower this time.

Okay, I better close this up before I mess up the site. Katia is all over me right now wanting me to put batteries in some Walkie Talkies. They are broken but she thinks they need batteries. This is when the temper flares is when something doesn't work for her. Usually I can ease the news on her so she can get her attention somewhere else.

Let me tell you something cute though. When we went to the health fair the other day (with my sister), Katia got a stress ball. Anytime I tell her "NO" to something (yes, I do tell her NO), she squeezes the ball. It is cute but it really does help her temper:) Steroids should come with a selection of stress balls for the child and parents, for that matter, anyone that has to be around them.

Love, Tracy









February 18, 2005 11:50 AM

Good morning:)

Katia is feeling somewhat better today. She doesn't look as pale but she isn't really at all active today. She is plopped down on the sofa watching Benji along with Tatiana who is home sick also. Don't worry, Katia keeps her distance from anyone who feels bad and I am a cleaning maniac so... she should be okay:)

I have an important prayer request that I added above but I want to put it here also. This guy could really use some encouragement and a lot of prayers.


Jaysen (In need of a miracle)
Jaysen is 22 years old and has leukemia AML. He is in desperate need of a bone marrow match and a transplant or his doctors fear he will only have a few more weeks. He is 6 feet tall and down to about 100 pounds. He spends a lot of time alone in the hospital and could really use some words of encouragement. He has recently started a Caringbridge Site also but his Blog site has all the updates and his history. You can leave a comment by clicking "comment" after the journal update or you can just leave the comment in the guestbook of the caringbridge site. I think he is trying to blend the two sites together. Please keep Jaysen in your prayers and leave messages for him. No one should have to got through this but especially alone.


I appreciate if you would drop by and just let him know his new little Ladybug friend sent you:) If you feel you don't know what to say, just say that. It is okay to let people know you are there for them but you really don't know what to say. There are many times that things are going on with someone and I hesitate to leave an entry because I am at a lost for words (yes I do get to a lost of words at times). I just will let them know that I wanted them to know I came by and I am thinking of them and praying for them.

Well, I have a million and one things to do right now and I want to check on some sites. My day started out cleaning out our pantry because I just keep knocking things over and spilling things. It feels so much better to have it all cleaned out and organized:)

Also, Katia and Julianna Banana (who many of you keep up with) exchanged their bracelets and even though they live far far away from eachother, they are close in heart. We really do mean when we say, "We are all in this together". Here is a picture of Katia with her special "PINK WISH BRACELET" and Julianna with "Katia's Ladybug Club Bracelet". Thanks Julianna!!!

Katia the Ladybug and Julianna Banana? Are these girls full of personality or what?! Katia will be in Julianna's THE BANANA BRACELET PINK WALL OF FAME (tomorrow) page wearing Julianna's bracelet:)

I will be back later today because I have more updating to do but I should go tend to my 2 youngest:)


Love, Tracy








February 17, 2005 2:00 PM (YOU CAN VIEW THE RECENT NEW STORIES ABOVE-THEY HAVE VIDEO)

Just a small update. Katia is still feeling quite puny and pale. Please pray for her energy level to come up and that pretty little smile to light back up. I hate when she feels bad and there is really nothing I can do. She is still having loose stools but no fevers, so that is good.

Love, Tracy






February 17, 2005 9:20 AM

Good morning.

We had a rough start to bedtime last night. Katia was sitting at the table to eat dinner and said she felt bad.

She decided she wanted to go to bed (at 7:00 PM-not like her) so she layed down and about 10 minutes later started throwing up and throwing up and throwing up. She felt really bad and kept saying she just wanted to feel better. Then loose stools started and she had about 3 of those in about an hour. I decided to give her some Ativan and it basically all came to a stop. She still felt bad but nothing was coming out. She fell asleep. She was moving around a lot, all night long like she felt bad until about 4:30 this morning. She woke up and asked for breakfast:)

She feels good today and even got herself dressed and is walking around here with a stethescope hanging around her neck, a purse on her shoulder and sunglasses on (she loves sunglasses).

I am watching the Health Watch News Story on Bay News 9 as I type and I really hope people will see this, go to be a registered donor and many many people will find the match they are looking for because of these drives. I wish people were told about this registry when the got their drivers license or had their yearly physicals. I think most people would be more than willing to register. Today this story will aire, every hour at 23 minutes past the hour.

A reminder also for local people that may not be on the registry. There is a drive going on at the HCC Dale
Mabry Campus on Saturday, February 19th. We plan to be out there for a bit that day just to encourage people. This is being done in honor and memory of Casie Snow who passed away last year after her battle with leukemia AML. Casie and Katia (although years apart in age) had become good friends and I also became very close to Casie and her parents. She was so full of life, always smiling and a pleasure to talk to a spend time with:) She is so missed. Casie wanted these drives to go on so others wouldn't have to wait for a match to be found.

Today, at HCC, there is a health fair going on. There is a group of nurses out there, about to graduate, handing out information and answering questions. One of those nurses is my sister:) She decided to get into nursing while Katia was fighting for her life. She is scheduled to graduate this May from HCC's Nursing program. Her project for today's fair? Bone Marrow Transplants. I am very proud of her for going through this nursing program. My sister has 4 children ranging in age from 4 up to 12 years old. This hasn't been an easy tasks but she is almost there:)

Well, I better go find out what Ms. Katia is up to. She is being a doctor to everything in the house. Toys, her
kitchen, the sofa, etc. So far, my house checks out to be healthy:)

Katia has received a few packages in the mail lately and she loves getting mail!! I am usually much better about getting back with people to let them know their package arrived but lately things have just been hectic with Katia not feeling well or me trying to research her problems. I think 95 percent of what I do online is research and check on other sites of people struggling through illnesses. The other five percent?

Well that has to be fixing the glitches on my computer! I think each day there is some freeze up or virus problem or just something. As much as I love technology, it can be very irritating at times! Since you are reading this on a computer, I know you know what I mean. My favorite? When my computer totally freezes and just stares at me!! Encyclopedias never used to do that, did they:)

Love, Tracy






February 16, 2005 2:12 PM
WBC 7.6
HGB 11.8
PLT 297
ANC 2200



We are home from clinic:) Today's counts look good. The hemoglobin has come back up so that was nice to see and her platelets are stable which is a good thing also:)

The concern has been Katia's skin and eyes. The skin doesn't look too bad, rashes come up here and there.

But, her eyes look very bad at times and just bad at others. The plan is to do Prednisone. She started today and will hopefully plan to wean April sometime depending on how quickly she responds and how her eyes and skin look. I think that was the right thing to do. As much as we didn't want to have to put her body through prednisone again, I think and they think it is necessary.

Also, Katia is on Calcium supplements now due to her bones. Prednisone and other things she has been through weaken her bones so she is on a supplement for that.

The FK506 (immunosuppresent drug) level was high so we are going down on the morning dose on that.

All of this hopefully will get her moving in the right direction and keep her out of further harm's way.

Also, it means I need to update her Medications List and organize the new schedule. I have a color coded sheet of all her medicines which makes it much easier for me, the clinic and her doctors. It shows the drug, dosage, times taken, wean schedules, discontinued medicines and her monthly IV doses.

The sores in her mouth? Well, we are going to continue on the same regimen and give it more of a chance to work and also see what the steroids do for that. They believe the eyes, skin and mouth are all GVHD related.

Okay, that is enough medicine and clinic talk. To answer a few questions... Yes, Myron does always have his camera with him. It is in a little pouch on his belt, like a cell phone. Very prepared Daddy for any moment:) Plus, you never know who you will run into!

Also, the links to the news stories are above in the schedule. Today's with Jerry Gomez turned out very nicely on TV. His story is very touching and I really hope it will urge immediate attention to the continuing need of people to go register as a marrow donor. Also for more information on Umbilical Cord and Marrow Donation, you can visit either the Katia Solomon Foundation Website or the Cord and Marrow Donation Information Site I am working on. Both have a link to all the upcoming drives you can participate in by donating blood products and/or registering as a donor. Florida Blood Services is CRITICALLY low on blood supplies and really needs to have people make it a regular part of their routine to donate blood and blood products like platelets. So many people rely on this and it can, at any time, be any of us.

Also, we are really trying to have a good drive for the "Treasure Box". There is more information above the journal about this but it is made up of party favor type toys or just small toys that would make young children through teenagers happy after they have gone through different treatments, a lot of times painful. You can mail "Treasure Box" items to:

The Katia Solomon Foundation
PO BOX 22375
Tampa, FL 33622
Attn: Treasure Box

Toys or donations are very appreciated. I know how happy it makes these children to get these toys after something that has made them sore or upset. Katia kept her eye on that box through any procedure! She wanted her toy:)

Well, speaking of Katia, I need to go read to her some. We are trying to read to her more but she is also going to be getting Speech Therapy pretty soon. They are trying to work that out either in St. Pete or local but she needs to be able to communicate and express herself better. She has outburst when she isn't understood and I don't blame her. Hopefully she will handle this Prednisone this time with not too many emotional downfalls and temper outburst. If you have ever had a kid on Prednisone (or adult for that matter), you know what I mean. It can get quite scary sometimes, especially at 2:30 AM.











February 15, 2005 5:06 PM

First, for those of you local, there is a news story on Katia with Univision (Spanish TV) tonight at 6PM.

They came by the house today to update on her progress and she showed them her castle and played inside with daddy for a bit. I don't think this will be able to be linked for those of you not local. On Brighthouse, it is channel 8 UNIVISION. Hopefully you can catch it:)

Katia has been doing okay today. The rash on her face comes and goes, mainly on her cheeks and her eyes redden on and off sometimes more than others.

She has been eating well though so I think her weight should be improving. I may try to stick her on the scale in the morning but we also have clinic tomorrow so I may just wait and be surprised.

I am curious as to what her counts are tomorrow and also what her doctors say about what is going on with her.

How many of you out there watch The Bachelor on ABC? Well, Myron ran into Byron, the latest Bachelor at the post office. He picked, Mary, who is from Tampa so they live around here. Check out the photo album of the picture of Myron with Byron, the Bachelor.

Well, there is so much going on with Caringbridge kids and so many other people and families that I can't
sum it up in today's update. All I can ask is to please pray for all of them. It is heartbreaking right now and
very hard to hear of so many passing away, relapsing or having so many critical illnesses arise. It definitely keeps us more on our toes with Katia and it does make us nervous. I just pray for comfort in the fact that Katia is doing well.

Love, Tracy



******************



****CURRENT INFORMATION****


We have another drive going on for the TREASURE BOX toys. If you would like to participate, you can learn how to on the Katia Solomon Foundation site. Thanks so much.

Drive at HCC Dale Mabry Campus for Marrow and blood. February 19, 2005. Please join us out there:)






title="HUGS">


*HUGS* TOTAL!
Give Katia more *HUGS*
Get hugs of your own
clear="all">


href="http://katiasolomonfund.org/SharingHopeLadybugs.htm">

Katia's Personalized Ladybug ToteBag (click picture) Katia would love you send you a personalized Ladybug Totebag. Your name (please include the name with your order) will be put on a special bag just for you.
...







Want to be in the Katia's Ladybug Club?
Click picture to join while supplies last...



BAY NEWS 9 SCHEDULE FOR HEALTH WATCH COVERAGE FEBRUARY 15, 16, 17
HEALTH WATCH PLAYS AT 0:23 MINUTES PAST THE HOUR EVERY HOUR ON BAY NEWS 9 Schedule February 15th: Health
Watch
Update on a young girl (Katia) who underwent a bone marrow transplant.

February 16th: Health Watch
Tampa man in desperate need of a bone marrow transplant.

February 17th: Health Watch
Two families unite to save their lives and yours.



February 17, 2005 9:20 AM

Good morning.

We had a rough start to bedtime last night. Katia was sitting at the table to eat dinner and said she felt bad.

She decided she wanted to go to bed (at 7:00 PM-not like her) so she layed down and about 10 minutes later started throwing up and throwing up and throwing up. She felt really bad and kept saying she just wanted to feel better. Then loose stools started and she had about 3 of those in about an hour. I decided to give her some Ativan and it basically all came to a stop. She still felt bad but nothing was coming out. She fell asleep. She was moving around a lot, all night long like she felt bad until about 4:30 this morning. She woke up and asked for breakfast:)

She feels good today and even got herself dressed and is walking around here with a stethescope hanging around her neck, a purse on her shoulder and sunglasses on (she loves sunglasses).

I am watching the Health Watch News Story on Bay News 9 as I type and I really hope people will see this, go to be a registered donor and many many people will find the match they are looking for because of these drives. I wish people were told about this registry when the got their drivers license or had their yearly physicals. I think most people would be more than willing to register. Today this story will aire, every hour at 23 minutes past the hour.

A reminder also for local people that may not be on the registry. There is a drive going on at the HCC Dale
Mabry Campus on Saturday, February 19th. We plan to be out there for a bit that day just to encourage people. This is being done in honor and memory of Casie Snow who passed away last year after her battle with leukemia AML. Casie and Katia (although years
apart in age) had become good friends and I also became very close to Casie and her parents. She was so full of life, always smiling and a pleasure to talk to a spend time with:) She is so missed. Casie wanted these drives to go on so others wouldn't have to wait for a match to be found.

Today, at HCC, there is a health fair going on. There is a group of nurses out there, about to graduate, handing out information and answering questions. One of those nurses is my sister:) She decided to get into nursing while Katia was fighting for her life. She is scheduled to graduate this May from HCC's Nursing program. Her project for today's fair? Bone Marrow Transplants. I am very proud of her for going through this nursing program. My sister has 4 children ranging in age from 4 up to 12 years old. This hasn't been an easy tasks but she is almost there:)

Well, I better go find out what Ms. Katia is up to. She is being a doctor to everything in the house. Toys, her
kitchen, the sofa, etc. So far, my house checks out to be healthy:)

Katia has received a few packages in the mail lately and she loves getting mail!! I am usually much better

about getting back with people to let them know their package arrived but lately things have just been hectic with Katia not feeling well or me trying to research her problems. I think 95 percent of what I do online is research and check on other sites of people struggling through illnesses. The other five percent?

Well that has to be fixing the glitches on my computer! I think each day there is some freeze up or virus problem or just something. As much as I love technology, it can be very irritating at times! Since you are reading this on a computer, I know you know what I mean. My favorite? When my computer totally freezes and just stares at me!! Encyclopedias never used to do that, did they:)

Love, Tracy






February 16, 2005 2:12 PM
WBC 7.6
HGB 11.8
PLT 297
ANC 2200



We are home from clinic:) Today's counts look good. The hemoglobin has come back up so that was nice to see and her platelets are stable which is a good thing also:)

The concern has been Katia's skin and eyes. The skin doesn't look too bad, rashes come up here and there.

But, her eyes look very bad at times and just bad at others. The plan is to do Prednisone. She started today and will hopefully plan to wean April sometime depending on how quickly she responds and how her eyes and skin look. I think that was the right thing to do. As much as we didn't want to have to put her body through prednisone again, I think and they think it is necessary.

Also, Katia is on Calcium supplements now due to her bones. Prednisone and other things she has been through weaken her bones so she is on a supplement for that.

The FK506 (immunosuppresent drug) level was high so we are going down on the morning dose on that.

All of this hopefully will get her moving in the right direction and keep her out of further harm's way.

Also, it means I need to update her Medications List and organize the new schedule. I have a color coded sheet of all her medicines which makes it much easier for me, the clinic and her doctors. It shows the drug, dosage, times taken, wean schedules, discontinued medicines and her monthly IV doses.

The sores in her mouth? Well, we are going to continue on the same regimen and give it more of a chance to work and also see what the steroids do for that. They believe the eyes, skin and mouth are all GVHD related.

Okay, that is enough medicine and clinic talk. To answer a few questions... Yes, Myron does always have his camera with him. It is in a little pouch on his belt, like a cell phone. Very prepared Daddy for any
moment:) Plus, you never know who you will run into!

Also, the links to the news stories are above in the schedule. Today's with Jerry Gomez turned out very nicely on TV. His story is very touching and I really hope it will urge immediate attention to the continuing need of people to go register as a marrow donor. Also for more information on Umbilical Cord and Marrow Donation, you can visit either the Katia Solomon Foundation Website or the Cord and Marrow Donation Information Site I am working on. Both have a link to all the upcoming drives you can participate in
by donating blood products and/or registering as a donor. Florida Blood Services is CRITICALLY low on blood supplies and really needs to have people make it a regular part of their routine to donate blood and blood products like platelets. So many people rely on this and it can, at any time, be any of us.

Also, we are really trying to have a good drive for the "Treasure Box". There is more information above the journal about this but it is made up of party favor type toys or just small toys that would make young children through teenagers happy after they have gone through different treatments, a lot of times painful. You can mail "Treasure Box" items to:

The Katia Solomon Foundation
PO BOX 22375
Tampa, FL 33622
Attn: Treasure Box

Toys or donations are very appreciated. I know how happy it makes these children to get these toys after something that has made them sore or upset. Katia kept her eye on that box through any procedure! She wanted her toy:)

Well, speaking of Katia, I need to go read to her some. We are trying to read to her more but she is also going to be getting Speech Therapy pretty soon. They are trying to work that out either in St. Pete or local but she needs to be able to communicate and express herself better. She has outburst when she isn't understood and I don't blame her. Hopefully she will handle this Prednisone this time with not too many emotional downfalls and temper outburst. If you have ever had a kid on Prednisone (or adult for that matter), you know what I mean. It can get quite scary sometimes, especially at 2:30 AM.











February 15, 2005 5:06 PM

First, for those of you local, there is a news story on Katia with Univision (Spanish TV) tonight at 6PM.

They came by the house today to update on her progress and she showed them her castle and played inside with daddy for a bit. I don't think this will be able to be linked for those of you not local. On Brighthouse, it is channel 8 UNIVISION. Hopefully you can catch it:)

Katia has been doing okay today. The rash on her face comes and goes, mainly on her cheeks and her eyes redden on and off sometimes more than others.

She has been eating well though so I think her weight should be improving. I may try to stick her on the scale in the morning but we also have clinic tomorrow so I may just wait and be surprised.

I am curious as to what her counts are tomorrow and also what her doctors say about what is going on with her.

How many of you out there watch The Bachelor on ABC? Well, Myron ran into Byron, the latest Bachelor at the post office. He picked, Mary, who is from Tampa so they live around here. Check out the photo album of the picture of Myron with Byron, the Bachelor.

Well, there is so much going on with Caringbridge kids and so many other people and families that I can't
sum it up in today's update. All I can ask is to please pray for all of them. It is heartbreaking right now and
very hard to hear of so many passing away, relapsing or having so many critical illnesses arise. It definitely keeps us more on our toes with Katia and it does make us nervous. I just pray for comfort in the fact that Katia is doing well.

Love, Tracy



*******



****CURRENT INFORMATION****


We have another drive going on for the TREASURE BOX toys. If you would like to participate, you can learn how to on the Katia Solomon Fund site. Thanks so much.

Drive at HCC Dale Mabry Campus for Marrow and blood. February 19, 2005. Please join us out there:)








*HUGS* TOTAL!
Give Katia more *HUGS*

Get hugs of your own





Katia's Personalized Ladybug ToteBag (click picture)


Katia would love you send you a personalized Ladybug Totebag. Your name (please include the name with your order) will be put on a special bag just for you.
...







Want to be in the Katia's Ladybug Club?
Click picture to join while supplies last...



BAY NEWS 9 SCHEDULE FOR HEALTH WATCH COVERAGE FEBRUARY 15, 16, 17
HEALTH WATCH PLAYS AT 0:23 MINUTES PAST THE HOUR EVERY HOUR ON BAY NEWS 9

Schedule February 15th: Health Watch Update on a young girl (Katia) who underwent a bone marrow transplant.

February 16th: Health Watch
Tampa man in desperate need of a bone marrow transplant.

February 17th: Health Watch
Two families unite to save their lives and yours.



February 17, 2005 9:20 AM

Good morning.

We had a rough start to bedtime last night. Katia was sitting at the table to eat dinner and said she felt bad. She decided she wanted to go to bed (at 7:00 PM-not like her) so she layed down and about 10 minutes later started throwing up and throwing up and throwing up. She felt really bad and kept saying she just wanted to feel better. Then loose stools started and she had about 3 of those in about an hour. I decided to give her some Ativan and it basically all came to a stop. She still felt bad but nothing was coming out. She fell asleep. She was moving around a lot, all night long like she felt bad until about 4:30 this morning. She woke up and asked for breakfast:)

She feels good today and even got herself dressed and is walking around here with a stethescope hanging around her neck, a purse on her shoulder and sunglasses on (she loves sunglasses).

I am watching the Health Watch News Story on Bay News 9 as I type and I really hope people will see this, go to be a registered donor and many many people will find the match they are looking for because of these drives. I wish people were told about this registry when the got their drivers license or had their yearly physicals. I think most people would be more than willing to register. Today this story will aire, every hour at 23 minutes past the hour.

A reminder also for local people that may not be on the registry. There is a drive going on at the HCC Dale Mabry Campus on Saturday, February 19th. We plan to be out there for a bit that day just to encourage people. This is being done in honor and memory of Katia Solomon Foundation Website or the Cord and Marrow Donation Information Site I am working on. Both have a link to all the upcoming drives you can participate in by donating blood products and/or registering as a donor. Florida Blood Services is CRITICALLY low on blood supplies and really needs to have people make it a regular part of their routine to donate blood and blood products like platelets. So many people rely on this and it can, at any time, be any of us.

Also, we are really trying to have a good drive for the "Treasure Box". There is more information above the journal about this but it is made up of party favor type toys or just small toys that would make young children through teenagers happy after they have gone through different treatments, a lot of times painful. You can mail "Treasure Box" items to:

The Katia Solomon Foundation
PO BOX 22375
Tampa, FL 33622
Attn: Treasure Box

Toys or donations are very appreciated. I know how happy it makes these children to get these toys after something that has made them sore or upset. Katia kept her eye on that box through any procedure! She wanted her toy:)

Well, speaking of Katia, I need to go read to her some. We are trying to read to her more but she is also going to be getting Speech Therapy pretty soon. They are trying to work that out either in St. Pete or local but she needs to be able to communicate and express herself better. She has outburst when she isn't understood and I don't blame her. Hopefully she will handle this Prednisone this time with not too many emotional downfalls and temper outburst. If you have ever had a kid on Prednisone (or adult for that matter), you know what I mean. It can get quite scary sometimes, especially at 2:30 AM.











February 15, 2005 5:06 PM

First, for those of you local, there is a news story on Katia with Univision (Spanish TV) tonight at 6PM. They came by the house today to update on her progress and she showed them her castle and played inside with daddy for a bit. I don't think this will be able to be linked for those of you not local. On Brighthouse, it is channel 8 UNIVISION. Hopefully you can catch it:)

Katia has been doing okay today. The rash on her face comes and goes, mainly on her cheeks and her eyes redden on and off sometimes more than others.

She has been eating well though so I think her weight should be improving. I may try to stick her on the scale in the morning but we also have clinic tomorrow so I may just wait and be surprised.

I am curious as to what her counts are tomorrow and also what her doctors say about what is going on with her.

How many of you out there watch The Bachelor on ABC? Well, Myron ran into Byron, the latest Bachelor at the post office. He picked, Mary, who is from Tampa so they live around here. Check out the photo album of the picture of Myron with Byron, the Bachelor.

Well, there is so much going on with Caringbridge kids and so many other people and families that I can't sum it up in today's update. All I can ask is to please pray for all of them. It is heartbreaking right now and very hard to hear of so many passing away, relapsing or having so many critical illnesses arise. It definitely keeps us more on our toes with Katia and it does make us nervous. I just pray for comfort in the fact that Katia is doing well.

Love, Tracy



********


February 15, 2005 12:00 PM

Just a quick note to let locals know there is a HEALTH WATCH running on Bay News 9 today, February 15, through February 17th on Katia and Jerry Gomez. It is a 3 part series so it will be different each day from what I understand. I will put what links I can on here for those not local. They will be above in the schedule.


Love, Tracy

PS I will be back later to update on Katia's day. The rash is still coming and going on her face especially.



February 14, 2005 PRAYER REQUEST...


Emma B.(In need of a miracle)
Emma was diangosed with leukemia AML in February 2003. In December, she went through a bone marrow transplant in December 2003. Now she has been having a lot of lung problems. As of FEBRUARY 2005 Emma is struggling to breath. Please pray for her to overcome this, get out of the ICU and back home.



Bailee
Bailee has been fighting leukemia ALL and recently had a transplant. She has been away from home (Florida) and being treated in New York. She recently had scans done which showed a lesion on her brain caused by the EBV virus. Since this, she has been on a medication to treat her. Tomorrow, she will be having a repeat scan done and the prayer is the lesion is gone or greatly improved. I know she really wants to come home!!!






February 14, 2005 3:00 PM
HAPPY VALENTINES DAY:)

It seems the rash is coming back. It is on her face, arms, some on her back and I haven't really checked the rest of her out as she is just determined she is not going back to the hospital. She doesn't have any fevers. The sores in her mouth or worsening back to the way they were on Tuesday so...

We have an appointment on Wedesnday so if this continues the way it is, maybe it will be a little more clear of what is wrong with her. I can't really think of much more tests to run, other than the oral surgeon testing the sores in her mouth and maybe that will have something to do with the skin.

I have a lot of patience for a lot of things but when I don't know what is causing Katia problems, that really gets to me.

At the same time all of this is going on, daily life goes on and I am just trying to catch up on the house, bills, and just general daily things. I miss the feeling of relaxation that things are going smoothly. I don't mean that all is well in our part of the world but I mean that Katia's health is stable. I really want to get to the point of her not fearing that something will go on leading her right back to the hospital. She felt warm last night and hesitated to tell me because she thought it was a fever. Although she did feel warm to me too, her temperature was fine.

Somehow I feel the Cefepime (antibiotic used in the hospital this last stay) covered up the problem but didn't take care of it.

Right now, she looks at her skin or looks at her face in the mirrow and says, "Oh no, this isn't good, this isn't good..." She is frusterated as much as I am.

Okay, I will try to perk up here some. I can't let this drag me down because I always remind myself, things could be worse, much worse.

I want to thank you for your Ladybug Club Bracelet Orders and let you know they are out in the mail. Generally I am trying to get them out the day you order them or a day or two after. I want the process to speed up:) We actually have a newborn baby in the club now. Isn't that sweet? We made her an itsy bitsy little Ladybug Club Bracelet.

Also, I have been working on a page to better explain Umbilical Cord and Marrow Donation so you may want to check it out. I am trying to make this much easier to understand on how the whole process works for both the donor and the recipient.

Thank you for your prayers.

Katia is bringing me a bunch of books and piling me up so I think she wants a story read to her. It helps keep her mind off of checking the rash on her skin.

Love, Tracy










February 13, 2005 (Prayer Request Updated)

WE ARE HOME!!! The doctors came in and said we were able to go home and we didn't wait around:)

My thought is that we weren't really accomplishing much and we can just keep an eye on her at home. She is due to go back to clinic on Wednesday and her regular doctors will be back in town. They were kept informed of everything going on so they know about all of it. The doctors filling in for them were very thorough and always willing to listen so I very much appreciate them. The happiest they saw Katia was when they said she could go home! Then she smiled.

I wanted to post pictures from the hospital but I forgot the USB cable to upload them so I am a little late but that is okay. These will soon be replaced pics of her at home:)

She is very happy to be home. She is drained but happy. I think she will definitely eat better here. She has been taken off dairy products for now to see if that helps with the lose stools so we will hope this works. Her medicines were adjusted because of the GVHD of the skin results. Now it is just wait and see but it is so much more comfortable to do that from home. Katia always seems to thrive at home.

Thank you so much for your prayers!



Love, Tracy

PS There are pictures in the photo ablum that show an example of GVHD. Her hand looks better now and her eyes aren't as pink looking. This way you can see what we were dealing with and what a flare up looks like. Hopefully this will stay away without steroids.





February 13, 2005 9:37 AM

WBC 5.53
HGB 9.9
PLT 274
ANC 1493

Good morning:) Long long night...

Katia for some reason just couldn't sleep. I think she just wants to get out of here.

Her runny stools have seemed to slow up, only one today so far so that is good.

Her skin has remained the same since last night and she has been of her antibiotics for about 24 hours now. I would say she is stable.

I am still not sure about the last few lab results but for the most part, everything is negative except the GVHD of the skin, the blood in the stool, and one C-diff is still pending.

I am hoping to get out today or tomorrow, I am really hoping today;)

I will be back with more later. Pray her skin stays clear and the runny stools will stop. She is off dairy products for a bit.

Love, Tracy


PS Her weight last night was 13.0 (the day before it was 12.9) That is good that it didn't drop down more:)






February 12, 2005 10:51 PM

Well, not a lot changed during today. Katia had quite a few lose stools earlier in the day but then they have stopped for the last 5 or 6 hours now. I really hope that is the end of the lose stools. She had a hard time with it and is just worn out and pretty pale looking. She did have fun with Sharayah and Tatiana today when Myron brought them over here:) She was happy and laughing!

The answer on the steroids is no. Right now they think it would cause more damage than good. I am looking at her and tending to agree with them. I see she is improving without the steroids and I would really hate to put her and her body through that. We are going to keep a close eye on her skin and her stools.

What are they going to do if the lose stools continue? Well we have sent off every lab we can think of and other than C-Diff (which is still pending) the others are negative for everything except blood. The first C-Diff lab they sent off also came back negative but a new sample was sent when the stool became so watery.

Tonight she went potty and was really crying over her pee burning. That is the first time in a long time this has happened.

I really want to get Katia home if we can. I know being in the hospital brings her down more both physically and emotionally. We would always do whatever we need to do for Katia's sake though so we just want to make sure everything is checked.

The rash could have been caused by a number of things like her chemo and such but the concern is that her eyes were acting up before the chemo and we feel it is all somehow connected. Call it parental instincts but Myron and I both agree on that.

Please just pray for Katia and her doctors, and us of course. I always pray the doctors will check out everything they need to and problems will be caught at the right time. I pray for our family because it is just emotionally, physically and financially exausting. When things seem to be slowing down and we get into a routine at home, something seems to come up. I do believe that as problems arise, God gives us the needed strength to deal with situations and the needed help to see our family through. He has proven that time and time again. I can definitely say my FAITH has improved through all of this, in many ways. I have also learned a GREAT deal of patience:)

Well, I am exausted and before I make a ton of typos, I better get some sleep. Katia is sleeping. She is squirming around quite a bit and I don't know if she is dreaming or hurting but I wanted to wait to see if she was really ASLEEP or "resting". Sometimes she jumps up and says, "I was just resting my eyes, I'm not tired."

Well, I should go "rest my eyes".

Love, Tracy






******************************

February 12, 2005 10:27 AM

WBC 4.88 (good)
HGB 9.9 (dropping)
PLT 273 (good)
ANC 1513

I am back and hopefully with less typos today. I will try:)

First, the good news. Katia is 99 percent donor cells in her marrow which is right where we want her to be! I still haven't gotten the final report of the absence of leukemia cells in her marrow but I am pretty assured there are none. They have had long enough to determine that by now so I am sure a final report is on its way:)

Our night went reasonably well. Katia is still having runny stools here and there and they are sending them for more cultures. Some of them show blood, that we can see and others I don't see any but there are traces found in there. Katia has basically come to the conclusion that she doesn't want to eat because it is going to make her poop so we are playing with a food playset now hoping that will change her mind:) She really can't afford to lose weight especially since we don't know what treatments she is going to need.

The thought right now is to go ahead and put her back on prednisone and then go from there. Since her skin cleared up they think it may be GVHD but also something else causing the rash that we saw. GVHD could be hiding on the skin and really not showing itself but showing in the biopsy. I really think alot of times, we find out things ahead of time with Katia because of something else and it has proven over and over to keep her safe. We try to stay a step ahead with her and not let things wait to get out of control.

Katia is out of bed and has been walking around her room so she doesn't get too weak in here. Right now she is sitting in a big chair playing with a food set and feeding a babydoll.

I am a little concerned about the dropping in her hemoglobin (HGB) which was just 11.9 the other day and is now 9.9. I am not sure what is causing that to drop. She doesn't seem to be losing that much in her stools so we are checking on some other viruses today.

Once they find out the problems, the treatments should be able to be done outpatient and just checking her levels and progress in clinic. We just want her stabalized before she leaves here so the runny stools are going to have to stop. She hasn't had a fever now for 2 days.

I watch these pediatric nurses around here and I know they really have a difficult job. Dealing with sick children is not easy but they also have to deal with the parents of these children and, to put it nicely, that can just be really difficult. They do so well with their jobs and show so much care and compassion and tons of patience! I always appreciate the way everyone deals with us in the hospital. I mean everyone. The doctors, nurses, staff, cafeteria workers, cleaning staff, etc. Everything really seems to just be done. They are always willing to step in if we have a problem and fix it. Having a good team working with Katia gives us reassurance.

I will be back later.

Love, Tracy





February 11, 2005 9:50 PM

First, it seems like I am very full of typos today. Sorry:) I fixed the blood counts below.

I have received a lot of emails about my "level of concern" and my thoughts on all of this going on with the GVHD so let me tell you what I know and what I think (mind you I am not a doctor).

At this point I am very concerned. I am mainly concerned with the idea of GVHD being able to get totally out of control so quickly. I am glad though that we are in the hospital right now and the correct labs have been getting run and looked at. I think I would be a mess if I didn't trust those taking care of Katia and I do:)

I am one to always research things before starting new treatments, or reoccuring treatments. I am not totally sure what is going on with Katia's "runny diapers" and what is causing them. My guess? Well I suspect GVHD may have something to do with that also. This of course would be treatable but it is something that can (if GVHD) get out of hand very fast, sometimes even while on treatment. Everything Katia goes through with illness and medicines makes it harder for her body to grow stronger, for her to gain weight and to progress in the direction she needs to be progressing. On Wednesday Katia weighed 13.2, on Thursday, 13.4. I was very happy to see this. Now with the runny diapers, she is down to 12.9 in 24 hours. She is eating decently well and drinking so I think it is just more is coming out than is going in at this point. She doesn't need to lose weight.

All the time I am reminded of how blessed we are to have Katia doing as well as she is. I thank God each morning, throughout the day and each night. When I am up here on the floor, I see people going through the same thing, some just starting treatments. I meet people and I hear their stories and we aren't in this alone. Normally that would be a good thing but with this, I wish nobody else had to go through this. It totally changes your life in a lot of different ways.

Like I have said in the past, that is why I started this page. I wanted to share Katia's journey with people. I wanted to put a face with a disease, an actually walk through a day, month, year and so on in her life. I wanted to share the way this affects our family and those around us. Mostly I want to share what I learn through others and through my own experiences.

Sometimes this journal gets very long winded and I hope nobody's eyes are getting messed up because of my many words. I appreciate your taking this journey with us and for your prayers and dedication.

If I make any typos, I am sorry. My mind is pretty occupied. I appreciate those being pointed out especially when I am saying February is November and Katia's HGB is 3.65 instead of 10.4.

Love, Tracy










February 11, 2005 6:30 PM
Second update today...

Earlier when I updated, I had put November instead of February (oops, long day).

Well, one of the stool tests are back and has not shown any bacterial or viral growths but does show blood in the stool. That was from the green stool we sent I think.

The other thing back is the skin biopsy and it does show GVHD but somehow most of the rash has gone away which is weird so we are going to keep an eye out. Something with the fever and such could have set it off and now it is just hiding while she is on the antibiotics, not sure. There are no definite answers when it comes to this.

My concern is the runny stools and the blood in the stool could be pointing to GVHD of the gut so I want to make sure we cross all our "t's" and dot all our "i's" and that we don't turn our back on something and not treat something brewing that could not only become more obvious but also life threatening.

We hate to put her back on steroids if it isn't necessary but at the same time, we don't want to avoid treatment because of concern of the side effects. GVHD can really suddenly flare if left untreated.

Katia's eyes, although not as red, are still irritated with flaky skin on the lids, puffiness and slight redness. The only thing that has improved is the red coloration of her skin and the rash itself. Her eyes are uncomfortable to her and look sore.

Today she got out of bed for a while and daddy dressed her up in some princess shoes and jewelry. She walked around some and they danced (she always falls asleep dancing with daddy). We noticed while she was up and walking, the redness started coming back some and the eyes worsened?

I try to put all of this together and come up with an answer but I am not able to do that with this. There are just a lot of unanswered questions right now.

The other issue is the sores in her cheeks. They aren't any better or worse but they haven't been dealt with. I was hoping the oral surgeon would be able to get to her and take a sample to biopsy but it is Friday now and we haven't seen them. Now they aren't around till Monday.

If Katia shows improvement and the runny diapers stop, she may be able to go home tomorrow or Sunday. Is that good or bad? Well that depends on what is going on and what the decisions are to treat her. I would rather try to treat her for something that I think is going on and not put it off until it flares up and we end up right back in here in a much worse situation.

So just pray that answers will be found and the right treatments will be started.

Thank you:)

Love, Tracy








February (oops-I had November) 11, 2005 3:20 PM

WBC 4.29
HGB 10.4 (earlier typo) 3.65 was HCT
PLT 279
ANC 2102

The counts are much more in their normal ranges so the antibiotics must be doing something for Katia.

Her rash looks like it is clearing up which is actually leaving a question mark on getting answers on what caused it? Katia still has rash on parts of her that come and go so I am concerned the antibiotic is holding it off and when the antibiotic is discontinued, we will face the same problem. I am not trying to sound pesimistic but I am concerned as to something going on that we are missing. There have been a lot of labs drawn but nothing has finalized yet on any of them. They take a few days each to get back.

She had more runny diapers (almost completely watered) during the night and in the morning. The last one was around noon today. Her belly gets sore and then she has a bad diaper. It sounds like it could be c-diff again but there is also the concern of GVHD causing this problem too.

Right now she just ordered lunch so I am going to try to get her to eat. We changed rooms today and Katia keeps me pretty busy in the hospital but I didn't want to put off updating the page for much longer. I know you are praying.

My prayer request is that there is a definite answer found and treatment started. I definitely have a fear when it comes to GVHD because sometimes it wants to hide and do damage while it isn't being treated. This is a big downfall with transplant patients that can cause a lot of problems. I have my feelings on this and I do have to say, her doctors respect my input so that is greatly appreciated.

Thank you for your prayers and for checking up on our dear Katia:)

Our family appreciates you very much. Myron has had to miss work these last couple of days due to being back and forth here so... pray for that too. That is always hard on us. I know anybody can understand that. So, please pray for the financial side of this. Because we have felt that so much, that is why we want to be able to reach out to others and have a good established foundation to be able to step up to the plate and help others.

Well, Katia wants her lunch:)

Love, Tracy

PS Thank you so much for the balloons that have been sent to Katia. It has added color and cheer for both of us:)

PSS (added at 5:11 PM)


Mark
Please pray for our friend Mark. Mark is a seven year old that has been battling cancer since he was 5, Wilms Tumor. They have just found out that his latest bone marrow biopsy shows Leukemia AML cells and now he will not only have to start over in treatment but will have a much harsher treatment. Mark has not had an easy go of all his past treatments so this will be a very hard fight for this little boy. His parents could really use encouragment also. Mark is treated in Tampa but at another hospital. We have met his father but I have never had the opportunity to meet Mark. I know he will love to hear from you though:)








February 10, 2005 11:14 PM

As I type, Katia is asleep:)
She did however experience quite a bit of stomach pains tonight and then had a very runny, watery diaper. She had wanted to eat but said her stomach was bothering her so she had IV benedryl. This didn't help.

This happened last night late and it ended up a runny and green stool but tonight's wasn't green but much more watery. I am not sure what is really going on with Katia but hopefully something will show up in the labs. For nothing to show up, doesn't answer the questions so we need an answer and a treatment. Without that, I think the problem would just come back and be worse.

There is still no word on her marrow results (any of them) and most of her labs taken yesterday aren't final yet. The stool tonight was also sent for labs.

So, I am going to call it a night and hopefully Katia will have a good night. She really needs the rest.

Thank you so much for your prayers, your messages and just caring so much.

Love, Tracy







February 10, 2005 4:00 PM

The skin biopsy is done but the mouth biopsy on the cheek isn't done. It couldn't be lined up to do at the same time and they didn't want to wait on the skin biopsy. Hopefully the other biopsy will be this afternoon or in the morning and we can get on track of what is wrong.

Katia isn't feeling so bad right now and hasn't had a fever since this morning so the antibiotics must be doing something to help her. She just ate a banana and some apple dumpling (2 bites). She doesn't want to lose weight. She is determined to get bigger no matter how she feels and she couldn't eat because of the biopsy until now so she was looking very forward to that banana.

I will be back if anything else comes up tonight.

Thank you so much for your prayers. I think they tremendously help, especially with our emotions and determination.

Love, Tracy







February 10, 2005 11:15 AM
Second update today...

WBC 7.33
HGB 10.9
PLT 273
ANC 4251

Well we are planning on doing both the skin and mouth biopsy at the same time with sedation. That is in the works right now to get it done in a bit.

Another concern (especially Katia's) is she is shedding hair on her pillow on the sudden.

Her face is getting redder and the rash is spreading. It basically covers most of her body now. I know they want to get this biopsy done ASAP so we can get treatment going for whatever it ends up being.

Another concern is other viruses? They are testing for those right now too. I am getting the feeling this isn't going to be a 2 or 3 day stay...

I will be back later.

Love, Tracy

PS No word on any marrow results from Tuesday yet.










February 10, 2005 7:20 AM
These counts are from the ER yesterday...

WBC 10.6
HGB 11.9
PLT 326
ANC 9116

By the counts I know something is up but not sure what. I don't have today's labs yet but I will be back.

Katia isn't happy and had a long night so today is going to be a spent trying to cheer her up. She does however have a skin biopsy to do today (which hurts and she hates it) and then a few new doctors to see. The things in her mouth also are of concern. I have my ideas of what I think it is, Oral Lichen Planus, which looks like what she has and sounds like what she has so hopefully that can be found out for sure which may mean another biopsy from inside her cheeks. She isn't going to be happy about that either. She had fevers throughout the night around the mid to high 38's and Tylenol seems to bring them down some but not all the way.

Katia does like to see her nurses, she feels at home here when she has the opportunity to see the people that she knows and loves so well. So, hopefully she will feel well and visit some today with them and the child life specialist (the toy people she calls them). I really want her to be content and happy because it really does help her to progress in the right direction. Her weight yesterday was 13.2 which is definitely showing improvement. I don't want her to get in here and get to the point of not wanting to eat. So pray that she will eat and be as content as possible.

The room looks so bare. I am so used to being here long term and having the room all colorful and decorated but it certainly looks more like a hospital room right now. Maybe she can draw some pictures to hang up today:)

Well, I better finish this up. The connection here comes and goes right now and I don't want to lose my update. I will be back later this morning with her labs and more news. Thank you for your prayers and kind words. Myron and I read over the guestbook together last night when he brought the girls over here.

Another thing is I looked at the board of names of kids admitted and they are mostly new kids. I hate to see new people having to start through this. My prayer is first that cancer will just stop and then also for a cure for those that have it, a quick and painless cure.

Love, Tracy








February 9, 2005 10:41

**********************Message from Myron*******************


Hello everyone! It's Daddybug.

It's been a few days since I said Hi, life certainly seems to be very hectic at times.

I noticed that both Katia's birthday and anniversary past and I did not post anything. Both events meant the world to me and were celebrated with lots of cheer.

We are certainly so thankful to God for his love, and for allowing Katia these tremendous milestones in her short life. She is such a wonderful baby, and she brings me such pride and a determination that allows me to face any adversity that life has to offer.

She is a constant reminder of God's goodness and a testimony to prayer and perseverance.

All this said, I sure do feel so tired, for her...

As you all know she is back in the hospital today with fever and rashes due most likely to graph vs host disease.

Katia had such a long day yesterday due to the marrow aspirate, spinal tap and chemo.

The last couple of weeks she has been so uncomfortable due to the skin irratation around her eyes, it just seems to be one attack after another! There just seems to be no rest for my weary little warrior..

She deals with these things so well, and although in pain or discomfort she just takes it, and looks forward to feeling better so she can play...

I know, I shouldn't complain... So many recently have been devastated with lost, relapses and many painful situations I pray never to expirience, I just feel so tired, for her...

My thoughts and prayers are constant for those families.

Days like this I wish my mom was near by..

Just venting everyone, I know God is in control, and we must continue to stay possitive.

Still working hard on projects for the Katia Solomon Foundation, we have a couple of drives planned for March and are countinously working on new fund raising ideas and talking to as many people as we can about the reality of these life treatening illnesses and how they can help.

Please remember how much you are loved and appreciated, your prayers and thoughts are what keeps us focus, so please don't ever stop.

Please pray for a short and productive stay at the hospital, and for strength for Tracy.

Know that you are in my daily prayers..

Thank you for listening...

Luv, Myron
Myron
Tampa, Fl USA - Wednesday, February 9, 2005 6:21 PM CST



February 9, 2005 4:29 PM

Well, we are back on our way to the hospital. Katia's fever has gotten up to 38.5 but also she has a rash now on her hands, back, arms, legs, etc that appears at GVHD.

I am not sure what the plan is but I will update more when I know more.

Pray we aren't in the ER long...

Love, Tracy


*********************************************************

February 9, 2005 10:08 AM
WBC 5.8
HGB 11.5
PLT 245
ANC 2300
All counts are in perfect range:)

Spinal Fluid is Leukemia Free!!! That is great news. The chemo there is working and Katia has good spinal fluid. That is always a huge concern to us since she originally had Leukemia in her spinal fluid and then she relapsed at 93 percent leukemia there back in August 2003 after just having a clean spinal check a few weeks before. This area has shown to be an agressive area of concern BUT it is clear:)

The rest of the results will come in day by day so I will post them.

She has been playing with fevers all night, up to 37.6 and 38.0 is a trip to the hospital. She seems cool right now so I think that was anesthesia, too early to be caused from the chemo. That takes about 48 hours to start up if it is going to.

Now the marrow?

Cell count of donor cells vs. Katia cells? We want it at 99 percent donor cells)
Leukemia free? (results in 2 days)
T-Cell count? (results in 10 days)
Strength and makeup of marrow (results in 7 days)

So keep this in your prayers:)

Also, please pray for Bailee this morning. This is a part of her mom's latest update... You can see her page for more.
"The report came in from the CT scan. Bailee has a lesion on her brain. I thought I was going to loose my mind. This means that the EBV virus has spread to the brain. The next plan of action is to do another boost of cells from Michael tomorrow in hopes that it will kick these other cells in into gear. This lesion is very small but the fact that it is there is very hard to hear. If these cells don’t work, we will begin chemo therapy again. Go Cells Fight!!"
Please pray and visit their guestbook. I am sure they could use encouragment. Baillee hadn't heard this when her mom updated. It is so hard to tell your child the fight gets harder when it is already so hard.

I will be back later today with any news. Pray these fevers will stay away. I am sure Katia would be very upset to have to be admitted again right now. She was scared last night and slept with us again. I asked her, "Why don't you want to sleep in your own bed?" She said, "Because you are my doctor here and I don't feel good. I will miss you and sleep is so long..." She went on and on and of course she doesn't have to beg to stay with me and Myron:) I just knew she didn't feel good and she is more comfortable at knowing I am checking on her all night. When her fever reached 37.6 (38.0 is a trip to the hospital) I thought about packing a bag. I just prayed instead. She is cool this morning:)

Love, Tracy







February 8, 2005 7:00 PM


Hello:)

Sorry this is so late. We left here at 7:15 AM and got home at 6:15PM. Long day. This morning was basically spent going to clinic and then waiting for O.R. so it was a lot of hurry up and wait with a very hungry Katia.

She went in for her procedure at 1:45 and then I got beeped just 15 minutes later which scared me that something was wrong. I just needed to sign another form because of a change they were doing. So, that was done. These things usually take about 30 minutes and an hour later we still hadn't heard anything. But, moments later, we were back with Katia.

She woke up on the grumpy, not feeling too well side but right now she is laying on my arm as I type this, watching me:)

I have no results yet. I should get some results tonight on the spinal fluid (she had her lumbar puncture and spinal chemo there) but that should be all good since she is still getting the chemo there. I tend to try not to worry about this part. The results to the bone marrow biopsy will take about 5-7 days, although I should get some preliminary results in the next 48 hours or so.

We were happy to be headed home shortly before 5PM and then when we got on the bridge back to Tampa, traffic stopped! I told Myron, "Well there are no helicopters so it can't be too bad." Moments later 1 - 2 then 3 helipcopters, that wasn't good. In total there was 5 helicopters at one time over looking a very bad accident. We didn't know what was going on so we called and found out what was on the news and found out it was a very very bad accident and a huge traffic backup. So, we turned off our car (which was running out of gas) and just waited. We found a few ways to keep Katia amused and not get upset but in the long run, it ended up being just the "Rain" CD to do the trick. That is her favorite thing to listen to, of course.

So, I came home tired, took a bath and I just want to call it a night.

Okay, the clinic visit. It has definitely been determined that the eyes are irritated by GVHD so we are going to try a steroid cream for a week and if that doesn't work either pill steroids again (Prednisone) or IV chemo (which I doubt we would go that route). Katia also has the sores in her mouth which have gotten worse so we are starting another mouth wash instead of what we have been using. Hopefully we can get her mouth and eyes to get better. Her eyes have been a very big concern to us and quite a bother to her. Oh, also there seems to be some GVHD on a spot of her scalp, where she has been complaining of headaches so we are going to try the cream there too.

All in all, it was a long day but we are thankful to still be able to go TO the hospital and return HOME:)

We went and visited with Elli's Mom and Elli is doing good on her day #4 following her transplant. Her sister was her match. Thank you for those of you who have been sending cards to Elli. I saw a lot of cards hanging in her room (same room Katia had) and her mom very much appreciates this.

I am tired so maybe I can think better tomorrow. Katia's labs also looked very good today but I will put the results up tomorrow. I don't have them in front of me.

Thank you for all your prayers, emails and entries. God bless you:)

Love, Tracy









February 7, 2005 9:00 PM

Sorry to be doing this update so late. Katia has kept me pretty busy today on the backporch and we just seemed to be going going going all day. I am a busybody:)

Tomorrow, we go to clinic first for her labs and then for the spinal chemo and aspiration around 10:00 AM.

This will be done in the O.R. and we pray that things go smoothly and she wakes up feeling well. She has had a concerning headache and bits of rash here and there. The rash comes and goes so I don't think it is GVHD related but I am not sure what could be causing it.

The headache, this has been going on a few days and is pretty persistant, especially if I comb her hair or bother her hair at all. I put hardly in pressure but it really does hurt her. I am hoping maybe she just bumped it or something that she doesn't remember doing.

Also, I would like to share with you something else. Someone I have followed for quite some time and posted a few silent prayer request for, passed away. For the sake of the family's privacy I just want you to please pray for this family that just lost their sweet little child. I cannot imagine, nor did I ever want to, them returning home without her. When I found this out last night, I had to just walk away from the computer and catch my breath. This has been one of the reasons I chose to stay away from the site today and just spend the day goofing with Katia as much as possible. I know she won't be feeling well tomorrow afternoon and I wanted her to have fun but I wanted to have fun with her. I am sure you will understand this.

So, please pray for tomorrow and for our friends that have lost their little one. "Baby, you will always be remembered as a jewel!"

Love, Tracy









February 6, 2005 11:35 AM
*I have had some emails saying the page is loading very slowly. Can you tell me how it loads for you?


As I type, Katia is in her castle with Tatiana:) She REALLY REALLY likes that castle!

Yesterday was a pretty relaxing day around here and that was such a "breath of fresh air" for us. I made a trip to the store for some food around here but then after that, it was pretty much a quiet day with the house opened up, airing out (I love those days) and the girls playing on the porch together.

I had thought about making a cake but then we have just gone through a week of sweets around here so that idea soon passed.

Today, Tatiana was filming Katia playing on the castle. Tatiana wants to be a movie director someday so I let her put her talents to use.

On February 19th, which is a Saturday, there will be a Blood/Marrow Drive in honor of Angel Casie. We are planning to go out there for a bit that day. It is a good day, if you are in the local area, to get out and either donate blood, which is very needed or register as a marrow donor. This will be free for you to do. Hopefully we will see some of you out there.

There are going to be some upcoming drives with The Katia Solomon Foundation also. I will post those dates and locations as I know them. You can always find current information on The Katia Solomon Foundation plans and drives by going to the Foundation's Website.

Please continue to pray for those in the request section and for all families going through times of need.

Oh, Katia is doing quite well with these warm eye compresses two times each day so I may step it up to 3 times each day. Is it working? Well, that is hard to say but she doesn't mind doing it so we will continue and see where it gets her eyes.

She has also been having headaches which she is describing as her "head burning" so please pray for that. As we approach Tuesday, I get butterflies in my stomach and quite anxious. It is always a time of hope and also worry. When Ben M. relapsed, he was 14 months post transplant for AML and my heart just sank. I know many of you understand when I say this but I follow quite a few kids and you really do have your heart hoping for the absolute best for each and everyone. This is a community of heroes as far as I am concerned and as I have said many times, we are all in this together. Those of you who have found your way here, even without a family member with Cancer, I am so thankful for you taking the time to visit and leave kind messages. THANK YOU SO VERY MUCH.

Love, Tracy

PS Please continue your prayers for the family of Stanton. This is just a time in their life no family should have to face.

PSS I just looked and realized my entry from yesterday is not there! I am not sure why that is so let me copy it back into here:) Sorry about that.



February 5, 2005

HAPPY ONE YEAR POST TRANSPLANT KATIA!!
WE ARE SO PROUD OF YOU SWEETIE!



Love, Mommy, Daddy, Sharayah and Tatiana:)


Extra Note:
First, we gave into Katia and gave her the castle on the night before:) You know how hard it is for a parent to hang onto something you KNOW your child is going to absolutely LOVE!!! So, we gave in and let her have it. BUT, she had to wait while we blew it up (by mouth)-just joking!

She was waiting with such anticipation watching it go up and up and look more and more like a castle.

When it was finally done, she got in with some hesitation as this feels very different for her. We reassured her that if she fell, it wouldn't hurt. So, finally she fell over on purpose and saw we were right:)

We have this on our back porch so it will stay clean and pretty and Katia will be able to use it no matter what the weather is like. Our livingroom, dining room and master bedroom all open up to the porch so we can keep a close eye on Katia and she never feels alone out there. That is why she likes the back porch so much.

Basically she is spending most of her day- IN THE CASTLE!! All the girls are playing in it, around it and just really having a lot of fun:)


Love, Tracy


*******

February 4, 2005 3:14PM
WBC 6.3
HGB 11.7
PLT 252
ANC 2300

Okay, first for the good news! Katia got a perfect report card today at clinic. All her labs were in the normal range. The last time that happened was in October and it has rarely happened since she has even been diagnosed and all her time in remission. So, she was very happy with that.

Also, when we got to clinic there was a lovely Candy Boquet with a balloon for her One Year Anniversary. She was super delighted! Thank you, Pam:) That was quite a surprise to find at clinic.

Okay on to the other news...

This is even better:)

Katia's eye exam shows things remain in good condition with her optic nerves and both eyes. Their feeling is now that the redness and patches around her eyes is just an unbalance with her immune system and hormones causing there to have been a build up of oil glands and bacteria around the eyes so we will treat that and hopefully this eye irritation will go away. The idea is not to add more medicines to her skin or by mouth but to try warm compresses as she will tolerate them (okay this will mean a lot of begging on my part) and see if that alone will start clearing them up. Katia is on antibiotics twice daily and has been for quite some time. She is also on daily (2x's daily) fungal medicines so in those areas she should be protected.

All in all, aside from the screaming through the different eye drops, the eye appointment went well and Katia should be proud of herself:)

Next week, Tuesday, is when she will have her spinal chemo and bone marrow aspiration. It is also at this time they will be checking the status of her remission and amount of donor cells. What are we praying for? Well first that she doesn't get fevers from the chemo again. Second that her body is cancer free in both her spinal fluid and marrow and thirdly that she is all donor cells still.

So, tomorrow is the BIG DAY! One year! I can't believe it. Katia knows there is some surprise in store but she doesn't know what yet. I can't wait to show her. I think parents get happier than the kids a lot of times when it comes to surprises.

Well, today is Elli's transplant day. Her sister is her donor so it is a big day for the whole family. Please pray this will be her cure.

Also, please pray for The Katia Solomon Foundation. We have a lot of things we are doing right now in hopes of getting the foundation growing. There are so many things we can do with the foundation for families and educational awareness but we really need to get more of a financial backing behind it.

Well, I better bring this to a close. Katia is playing Hide and Seek from me so I better go seek her:)

Love, Tracy






February 3, 2005 11:22 PM

All is okay today, I am sorry it is so late. We just had a busy day around here and I just got tied up. Katia was helping me and having fun organizing with me:)

Please pray tomorrow for her checkups with the clinic and the eye visits. Tonight (you see what time it is), she is still up and having some "pee problems" plus she doesn't even know she has an eye visit tomorrow. I am sure she isn't going to be happy. I wish I could just fill her days with happiness and glee but I can't.

I just pray all is okay with her eyes and her labs and that we can go into a quiet weekend.

Please visit the links above in the prayer section. Eleanor is having her transplant tomorrow and many more can also use your prayers.

Thank you so much for checking on Katia and keeping her health and happiness in your daily prayers. We are really looking forward to celebrating Katia, in a small way, as her one year anniversary!! I will share the pics with you of her surprise of course that day:)

She will be very delighted!

Love, Tracy

PS I will update after our appointments tomorrow:) Please pray.








February 2, 2005 4:26 PM


So, the groundhog saw his shadow? Well, the weather here is actually overcast, cool and a little gloomy. So, I guess we have 6 more weeks (I really feel bad for those of you who are covered in snow and such!)

Katia said, "Today looks like a day to not go outside." She is pretty smart I tell you:)

I have caught up on some emails, getting the recent auctions off to the mail and cleaning up my desk of clutter. If you can't tell by now, I can't stand when things are cluttered for me. I lose things way to easily.

Katia has been having a good day. She really really enjoyed coloring the auction books and making pictures to put with them. She has a new one she likes to draw, "Party Guy!" Of course she drew a ladybug in each book but then she drew other things too. She had a lot of fun and can't wait to do it again. How many times does a Mom let a child draw in a book with crayons?

Other than that, I let her help me clean off my desk (I am raising her to be JUST like me!). Her task was to put the trash in the trashcan. Of course, she had a fabulous time doing this!

Her appetite has definitely improved. She had 2 big bowls of Fruit Loops this morning then some dry ones in a cup. She has had 1 1/2 cheese sandwiches, her SlimFast, and some Chocolate Chip Muffins. She is working her way through another sandwich right now with Sharayah:) I really think when we go to clinic on Friday, she will have gained a bit more weight!

So, this Saturday is just a few days off. We are going to do something special for Katia but you will have to wait to see the pictures!!! She has no clue yet but she is going to really really like it I think:)

As we approach this one year mark, I can't help but to think back over this past year. We have lost so many wonderful friends and I know so many families out there aren't celebrating. I really try to look at Katia as a reflection of hope and I am happy for her. I pray so hard for not only more people to register as potential marrow donors and more people to donate their newborn's umbilical cord but also I pray for a CURE!!! A transplant is the only hope for a cure right now. It is just that, a hope. As each of you know, transplants have so many risk and extreme health changes involved. I pray that someone will just stumble upon something simple, something that is easy to come by and doesn't need years of research. I pray that no other family would have to go through this or losing a loved one to these horrible diseases. I have been looking through pictures of Katia over the years and through her times in the hospitals and it is hard to believe what her little body has been through. The fact she is smiling and happy makes it all worthwhile but I just pray others won't have to go through this. Our family never thought we would have one of our children go through this. My heart truly went out to those going through this. All of the sudden, it was US!

I have always tried to be one to make the best of a bad situation but I didn't see how that was possible with this. In the beginning, I had a lot of thinking to do and a lot of feelings to go through. In the beginning it was just so much to think about Katia and getting her through each day. But then I saw how many people were reaching out to her and our family and I thought, we can really make a difference by just opening up our lives and sharing Katia's story as it unfolds. That is when I decided to start this site.

I thought, "Let me really share what we are going through." I wanted to not only share the medical side of things and what Katia was facing but also our family, our other 2 daughters. I wanted to journal everything and hope that it would be a "light on" for many people. I wanted people to share the website with their family and coworkers, their friends, just whoever they came in contact with. I never imagined how many people would come to this site and show how much they truly care for Ms. Katia, our Ladybug!

Before Katia relapsed, we were already working with the the National Marrow Donor Program and Florida Blood Services. We already knew of many people needing transplants and the immediate need for more donors to register. We also saw the need to get into the Latin communities and share information about the ease of registering and the fact a match wasn't only to be found in family members, but anybody, in any part of the world could match with someone they never knew.

It was Myron who started to think about forming a foundation. We talked the other day about what is our favorite thing to be doing. Well I kind of forget what I said but I am one that enjoys the simple things and just quiet time with my family. I am pretty easy to please and I enjoy doing just what I am doing now with updating this site. Myron said he enjoys teaching. He enjoys talking to groups about the need for registering, giving blood and understanding how these diseases effect so many people. I was very proud to hear him say that. I mean I knew this about Myron. I know his heart is completely in this.

I am also very grateful when someone post in the guestbook how they have shared Katia's story or talked to others about registering. It just makes me smile because it is such a huge thing to do and could be saving lives.

Before Katia was diagnosed, Myron and I were in college studying Interactive Media which is video and audio productions as well as web design. I wasn't sure how we were going to use our "talents" but then Katia was diagnosed and we had to leave school before completing it (although our student loans didn't disappear). Well, we actually use everything we learned in school, plus a lot more, in our daily lives and with the foundation.

Sharayah and Tatiana have been witness to a lot of things which I am sure will give them strong characters. They have seen their parents go back to school (not easy with 3 children) and do well. They have not only seen but have been a part of a huge family crisis and have been there each step of the way as we face each day. They have seen so many people willing to help and do what they could to share Katia's story. They have seen the media reach out and share Katia's story, getting countless others involved. They have seen Katia go through tests after tests, take countless medications, have numerous spinals and bone marrow aspirations (unsedated) and just go through so much only to see her soon happy and smiling again.

I read on a site the other day that true joy comes with adversities and experience. That really rings true in our situation because we see things much more clearer than WE did before. We appreciate such small things that we don't look to the big things. Each day is a miracle and each night is a blessing.

Thank YOU for making this journey more bearable and for being a part of this miracle and thank YOU for sharing Katia's story.

Love, Tracy







February 1, 2005 5:00 PM

Hello there:)

I am sorry I am getting to this so late. It has been a busy day. I have more beads for bracelets now:) That means we will be doing some beading around here.

Today we are concerned about Katia. Her eyes are more red than ever. Yesterday they didn't seem to bad and we thought maybe they were improving but today, they just look sore and bad. So, she has an appointment at clinic on Friday for a transfusion and then we will go to the eye doctor from there (she hates that) for her eyes to be dilated and have a full exam. We really need to be sure nothing is going on inside her eyes that we don't know about. I think it has been about 8 months since her last eye appointment to check the insides of her eyes. Our other concern is possible fungus infection or something infected on the lens of the eyes. So, please pray that her eyes will clear up and this appointment doesn't show any new concerns. I really want her eyes to start improving but we have to find what is wrong so we know how to treat it.

Katia is doing much better with eating. Today she asked for Fruit Loops (of course there were none here). Whatever she is willing to eat, I am willing to go get. It is a good thing she isn't into caviar:)

Katia has also been sleeping on her own now. That is a great thing for everyone. I think it will give her more confidence in being a big girl:) She still likes me to call her my baby but she stresses she is a big girl.

I want to thank so many of you for checking on her over these last few years since I started this site. Some kids grow up on TV. Katia is growing up on her website. I look back at pictures 2 years ago and when she was just diagnosed. She was so small and acting like a typical two year old. Then this. She has accomplished and overcome so much adversity that it makes this Saturday all the more special. Katia is very admirable in the way she handles her daily routines and tasks. In so many ways, she is so beyond the age of 5.

She likes that picture at the top of the page:) She really feels quite special in those dresses. She has a blue one and a pink one and she just loves being all dolled up! I am glad she is feeling well enough to dress up again. I missed that!

Love, Tracy







January 31, 2005 1:44
Day 361
NEW PICTURES IN THE PHOTO ALBUM TOO:)


WBC 5.4
HGB 11.3
PLT 236
ANC 2100
WEIGHT FROM 12.6-12.9!!! (THAT IS 28 POUNDS)


All those numbers look good:) We almost had another perfect report card (remember we had one back on October 25, 2004.


Four more days...till our one year post-transplant anniversary on Saturday!!!

Todays clinic went well. We had a time with traffic this morning so it took an hour and a half to get there but we got there. Katia was all dressed in her "Doctor Scrubs" so she was eager to get into clinic and show the nurses!

This Saturday will be the BIG DAY!!! One year post transplant! Wow! I can't believe it. Every morning when I wake up I think back to "this time last year in the hospital..." and it just makes me appreciate each day all the more now! This time last year was quite nerve wracking. I was so anxious but yet so fearful. I didn't know what was going to happen to my little baby. I knew she was ready to fight and that gave me a lot of hope but I also knew things could go really well or really bad right away. I look at her now and I see her low weight and her red eyes but then I think of how her new blood has been flowing through her body for almost a year and how lucky we are that the person who donated their baby's cord gave Katia another chance at life. I think of how many people came forward trying to be a match for Katia or a match for anyone searching. I think of how many people came forward willing to share Katia's story and get the word out about Marrow Donation and the registry. I think of how many people sent cards and packages to bring us each day closer to getting out of the hospital while keeping Katia content while in there. I also can't believe that Katia was able to basically sit on that bed for over 8 months or be stuck in her room. I mean, she was 3 and then turned 4 in there. That is just amazing she sat still and behaved for so long. I think of all the medicines she has had and continues to take and she just does it, no questions asked. She gets upset with herself if she chokes on one or can't get it done. She doesn't understand that she really shouldn't have to be doing all that.

People ask how I spent so much time in the hospital without losing my mind? Well, it has to be one word, LOVE! The LOVE of God, the LOVE of family, the LOVE of friends, the LOVE of strangers, the LOVE of doctors and nurses, the LOVE of everyone. That is how we did it. Now, here we are today, at home. I used to think of all the pictures I could take around the house, in different rooms, outside etc. I knew in the back of my mind all the things I wanted to do and I just prayed that God would give us the chance to do all these things.

Of course, Katia is still under her medical restrictions but that is OKAY. She deals with it and we deal with it. When her body is ready, those restrictions will be lifted little by little. All in good time. She doesn't complain or whine about the things she can't do. She shows us the new things she can do LIKE, part of her ABC's, or touching her toes, or combing her pretty, curly hair:) I love running my fingers through her hair. It reminds me of a beautiful garden that has grown with love and care. You know what is funny? Katia has never had a haircut! She is 5 years old. I cut a bit of bangs off one time when she was 2 for her baby book and I did cut her hair while it was falling out BUT I mean she has never had a haircut because of length issues. She just keeps getting her baby hair back. Well this time, it is going to grow and grow:)

Someone asked me the other day what Katia's prognosis is. Well (talking about a 5 year survival rate) she is still around 40 percent. That takes a long time to go up each passing year. There are always risk but with each day, I look at Katia as a miracle, not a risk. Cancer is mean. It can always show its ugly face again. There can also be some very ugly side effects to the chemos, drugs, radiations and transplant. I would go crazy if that filled my mind. I try to look at each day as a way of making more memories. I feel blessed in that sense that God has shown me the little things to be content with.

I have some new pictures to post. So, let me get to that.

Oh, on the medical side... (we did go to clinic today). The eyes appear about the same but the lids aren't as flaky and itchy. There is some questionable area in Katia's mouth on her cheek. She does have GVHD in her mouth and is also being treated for that as well as her eyes BUT, this area is white and about the size of the end of my finger. It can either be GVHD, fungus, or an infection. Not really sure. We go back on Friday and they will take another look at it but we are continuing her anti-rejection medicines the same for now. She is also going to be scheduled for her next spinal chemo and bone marrow aspirate earlier next week. I pray that goes smoothly and we don't have the fevers and sickness again this time. It is that last time that started the weight loss, vomiting, fevers, etc and two hospital stays. We are working on a surprise for Katia on February 13th so I want her to feel good for that:)

So, let me post the pictures. I will probably change these pictures more often now as we are getting outside more and Katia is feeling better around the house. Her eyes bother her often so when they do, I don't use a flash so I can't really take pictures in the house until she feels better BUT she tells me when she is ready:)

Love, Tracy

PS Please pray for Lauren as they have just found out she has again relapsed. I was just emailed about it. I am sure she could use some encouragment.







January 30, 2005 1:36 PM

Wow, I never updated yesterday and that feels so weird to me. I am used to getting here to update every day.

First, I must say, the weather in Tampa is absolutely amazing today!!!! It is in the low 70's, the sun is out, there is a slight breeze and it is just beautiful.

Katia, Sharayah and I made baleadas (flour tortillas, refried beans, and cheese). Katia has fun making that sort of stuff and now they are making Fondue in the kitchen. Katia doesn't really care for chocolate much but she likes the sound of how the Fondue pot works. The house is all opened up and music is playing;) This is the way it should be!!

One of my friends drove down to see some family close by me so her boys and her dropped by here. It was a great surprise to see them. We have known each other all my life.

Tomorrow we have clinic first thing in the morning. I am glad because I have some concerns with the redness around Katia's eyes. The GVHD doesn't seem to really be improving and she has a another area of concern now around her mouth. I am not sure what it is but it seemed to be going away and now it is back again just a couple of days later. Usually everything clears up right before we arrive at clinic and I can't show them what I am talking about. Lately it hasn't been that way so hopefully we will get the bottom of this.

Last clinic visit, Katia weighed 12.6kg on their scale. She had on jeans and a shirt. So tomorrow, we will see what she weighs. She is wearing her "Doctor-in-Training" scrubs and her stethoscope:)

I have to say, Katia has had a good week of feeling well and seemingly eating well. I am glad to see that and I pray it will stay that way. She is due for spinal chemo and a bone marrow aspirate right now also so I am not sure when they will schedule the appointment for those. Usually we will go to clinic on Monday and if her counts are good, we schedule it for the end of the week.

Let's see, what else?

I want to thank you for visiting other sites that I post or have had posted in the past. The parents and children really appreciate it. A lot of the past prayer request have since earned their little angel wings and their parents are very much missing them. I ask that you always keep them in your prayers. I have never lost one of my children, but something I do know is a parent never wants their child to be forgotten. They like to hear the child's name or have people remember things about their child. These children and their parents go through so much over a long time or in a short time. People that keep up with Katia know how much of a roller coaster our lives are like. My heart so goes out to the parents that have gone through this and then, in the end, they have to say goodbye to their little one. I can't imagine a worse pain. No matter how a loved one is taken from us or how old the loved one is, it hurts. Please always remember to pray for them.

Someone asked me how do I keep up with so many families. Well, I don't keep up with so many on a day to day basis but over the period of a week or so, I do try to get around to a lot of the websites. When I go to their website, I pray for them. I read their update and see what their needs are, what is currently going on, etc. I don't always sign the guestbooks but I always do try to go by and check. A lot of the children (and adults) that I have kept up with that have since passed on, I try to visit those sites to see how the family parents seem to be coping. I know they don't post all their feelings but I just want to go by and see what they are saying. I pray for them and that God will give them some sort of peace. It is sometimes difficult to sign a guestbook or pray because we don't always know what to say. I just like to let them know I still remember their loved one and that they touched my life. I think we learn something from everyone in life we meet, no matter how we meet them. Do you know what I mean? Do you remember teachers or other students from school? Even those you really didn't deal with much? How about a doctor or nurse you have had in the past? I remember a lot of people (I am however horrible with names) that I have only met once. The people I check up online, I check up on often enough that I really know they make an indention in my heart and they will always be a part of me. Some of them are off treatment and no longer keep up their pages, some update rarely, some have passed on but their loved ones still check the page, etc. There are many angels that are on this earth and I am happy to say I have known a few. People that may think I don't remember them may not know that they affected my life.

A lot of you in the guestbook, I hear from you often enough that when I don't see you sign for a while, I pray you are okay. I appreciate those of you who have sent pictures for Katia's Caringbridge Neighborhood book. It is nice to put faces with names (and email addresses). I thank you for sharing your lives and your family with ours.

Well, I have babbled on long enough. See what happens when I don't update for a day...

Love, Tracy







January 28, 2005 12:43 PM

Good day (It was morning when I sat here to update but I went through emails first and...)

Katia is sitting here singing next to me. She makes up songs in her head and they can go on and on and on for quite a long time. She sort of tells stories in song.

I haven't weighed Katia but I think she is doing better. I want to wait and be surprised (hopefully in a good way) at her appointment on Monday. Her eyes still look about the same so I am not sure what we are doing is working. She has a few other areas of concern for the doctors to see on Monday also. Katia is really doing better with eating so I THINK she should be gaining some weight. She is definitely more energetic unlike a few weeks back.

I will change out the pictures either later today or tomorrow. I am still so happy she had such a good birthday. Let me take you back to her other birthdays. Her first birthday was great! She was healthy and happy and just as cute as a bug:) Her second birthday was shortly after she hit her head causing the eye to start swelling. She was going back and forth to her pediatrician pretty often because we knew something wasn't right. She felt fine but was beginning to have the appearance of a bulging eye and we were very concerned. Her third birthday was on SuperBowl Sunday and we had just moved into our house. The BUCS were in the Superbowl and WON! I mean that was just a great all around day! There was all sorts of fireworks and fire rackets and Katia just thought all that was for her. Katia was feeling well and looking well. Her 4th birthday was spent in the hospital, in her transplant room. She had been in the hospital for 5 months by this time and still had transplant to go through. We were happy to have found a match but very very nervous about her lungs and transplant by this time. She had been through so much already and expected to go through so much more. We had started The Katia Solomon Foundation and knew we were going through this to help raise awareness to a big need, signing up for the National Marrow Registry. We were amazed at Katia's ability to reach so many people and we knew we had to help others going through what we were and those that would go through this in the future-until a cure is found. Now, her 5th birthday was HOME! She has her "New Blood" and it seems to be doing very well in her. Katia is still on quite a few medicines which she takes 2-3 times a day with a good attitude. Katia still goes back and forth to clinic often but she does that with a good attitude. She still goes through testing and scans, etc. She does all of this with a good attitude. Katia is just an all around HERO to us and we look at her as an example of the best way to face a bad situation in life. God blessed us with Katia 5 years ago and through all these trials and scary times, He continues to show us how blessed we are. We have 3 wonderful girls, we have eachother (Myron and I) and we have God in control of everything. Although most people wouldn't look at our life and want to live it, we are thankful to God for giving us so many blessings in life and such great friendships throughout our life.

God bless.

Love, Tracy

PS I have added some new prayer request.


*******

February 4, 2005 3:14PM
WBC 6.3
HGB 11.7
PLT 252
ANC 2300

Okay, first for the good news! Katia got a perfect report card today at clinic. All her labs were in the normal range. The last time that happened was in October and it has rarely happened since she has even been diagnosed and all her time in remission. So, she was very happy with that.

Also, when we got to clinic there was a lovely Candy Boquet with a balloon for her One Year Anniversary. She was super delighted! Thank you, Pam:) That was quite a surprise to find at clinic.

Okay on to the other news...

This is even better:)

Katia's eye exam shows things remain in good condition with her optic nerves and both eyes. Their feeling is now that the redness and patches around her eyes is just an unbalance with her immune system and hormones causing there to have been a build up of oil glands and bacteria around the eyes so we will treat that and hopefully this eye irritation will go away. The idea is not to add more medicines to her skin or by mouth but to try warm compresses as she will tolerate them (okay this will mean a lot of begging on my part) and see if that alone will start clearing them up. Katia is on antibiotics twice daily and has been for quite some time. She is also on daily (2x's daily) fungal medicines so in those areas she should be protected.

All in all, aside from the screaming through the different eye drops, the eye appointment went well and Katia should be proud of herself:)

Next week, Tuesday, is when she will have her spinal chemo and bone marrow aspiration. It is also at this time they will be checking the status of her remission and amount of donor cells. What are we praying for? Well first that she doesn't get fevers from the chemo again. Second that her body is cancer free in both her spinal fluid and marrow and thirdly that she is all donor cells still.

So, tomorrow is the BIG DAY! One year! I can't believe it. Katia knows there is some surprise in store but she doesn't know what yet. I can't wait to show her. I think parents get happier than the kids a lot of times when it comes to surprises.

Well, today is Elli's transplant day. Her sister is her donor so it is a big day for the whole family. Please pray this will be her cure.

Also, please pray for The Katia Solomon Foundation. We have a lot of things we are doing right now in hopes of getting the foundation growing. There are so many things we can do with the foundation for families and educational awareness but we really need to get more of a financial backing behind it.

Well, I better bring this to a close. Katia is playing Hide and Seek from me so I better go seek her:)

Love, Tracy






February 3, 2005 11:22 PM

All is okay today, I am sorry it is so late. We just had a busy day around here and I just got tied up. Katia was helping me and having fun organizing with me:)

Please pray tomorrow for her checkups with the clinic and the eye visits. Tonight (you see what time it is), she is still up and having some "pee problems" plus she doesn't even know she has an eye visit tomorrow. I am sure she isn't going to be happy. I wish I could just fill her days with happiness and glee but I can't.

I just pray all is okay with her eyes and her labs and that we can go into a quiet weekend.

Please visit the links above in the prayer section. Eleanor is having her transplant tomorrow and many more can also use your prayers.

Thank you so much for checking on Katia and keeping her health and happiness in your daily prayers. We are really looking forward to celebrating Katia, in a small way, as her one year anniversary!! I will share the pics with you of her surprise of course that day:)

She will be very delighted!

Love, Tracy

PS I will update after our appointments tomorrow:) Please pray.








February 2, 2005 4:26 PM


So, the groundhog saw his shadow? Well, the weather here is actually overcast, cool and a little gloomy. So, I guess we have 6 more weeks (I really feel bad for those of you who are covered in snow and such!)

Katia said, "Today looks like a day to not go outside." She is pretty smart I tell you:)

I have caught up on some emails, getting the recent auctions off to the mail and cleaning up my desk of clutter. If you can't tell by now, I can't stand when things are cluttered for me. I lose things way to easily.

Katia has been having a good day. She really really enjoyed coloring the auction books and making pictures to put with them. She has a new one she likes to draw, "Party Guy!" Of course she drew a ladybug in each book but then she drew other things too. She had a lot of fun and can't wait to do it again. How many times does a Mom let a child draw in a book with crayons?

Other than that, I let her help me clean off my desk (I am raising her to be JUST like me!). Her task was to put the trash in the trashcan. Of course, she had a fabulous time doing this!

Her appetite has definitely improved. She had 2 big bowls of Fruit Loops this morning then some dry ones in a cup. She has had 1 1/2 cheese sandwiches, her SlimFast, and some Chocolate Chip Muffins. She is working her way through another sandwich right now with Sharayah:) I really think when we go to clinic on Friday, she will have gained a bit more weight!

So, this Saturday is just a few days off. We are going to do something special for Katia but you will have to wait to see the pictures!!! She has no clue yet but she is going to really really like it I think:)

As we approach this one year mark, I can't help but to think back over this past year. We have lost so many wonderful friends and I know so many families out there aren't celebrating. I really try to look at Katia as a reflection of hope and I am happy for her. I pray so hard for not only more people to register as potential marrow donors and more people to donate their newborn's umbilical cord but also I pray for a CURE!!! A transplant is the only hope for a cure right now. It is just that, a hope. As each of you know, transplants have so many risk and extreme health changes involved. I pray that someone will just stumble upon something simple, something that is easy to come by and doesn't need years of research. I pray that no other family would have to go through this or losing a loved one to these horrible diseases. I have been looking through pictures of Katia over the years and through her times in the hospitals and it is hard to believe what her little body has been through. The fact she is smiling and happy makes it all worthwhile but I just pray others won't have to go through this. Our family never thought we would have one of our children go through this. My heart truly went out to those going through this. All of the sudden, it was US!

I have always tried to be one to make the best of a bad situation but I didn't see how that was possible with this. In the beginning, I had a lot of thinking to do and a lot of feelings to go through. In the beginning it was just so much to think about Katia and getting her through each day. But then I saw how many people were reaching out to her and our family and I thought, we can really make a difference by just opening up our lives and sharing Katia's story as it unfolds. That is when I decided to start this site.

I thought, "Let me really share what we are going through." I wanted to not only share the medical side of things and what Katia was facing but also our family, our other 2 daughters. I wanted to journal everything and hope that it would be a "light on" for many people. I wanted people to share the website with their family and coworkers, their friends, just whoever they came in contact with. I never imagined how many people would come to this site and show how much they truly care for Ms. Katia, our Ladybug!

Before Katia relapsed, we were already working with the the National Marrow Donor Program and Florida Blood Services. We already knew of many people needing transplants and the immediate need for more donors to register. We also saw the need to get into the Latin communities and share information about the ease of registering and the fact a match wasn't only to be found in family members, but anybody, in any part of the world could match with someone they never knew.

It was Myron who started to think about forming a foundation. We talked the other day about what is our favorite thing to be doing. Well I kind of forget what I said but I am one that enjoys the simple things and just quiet time with my family. I am pretty easy to please and I enjoy doing just what I am doing now with updating this site. Myron said he enjoys teaching. He enjoys talking to groups about the need for registering, giving blood and understanding how these diseases effect so many people. I was very proud to hear him say that. I mean I knew this about Myron. I know his heart is completely in this.

I am also very grateful when someone post in the guestbook how they have shared Katia's story or talked to others about registering. It just makes me smile because it is such a huge thing to do and could be saving lives.

Before Katia was diagnosed, Myron and I were in college studying Interactive Media which is video and audio productions as well as web design. I wasn't sure how we were going to use our "talents" but then Katia was diagnosed and we had to leave school before completing it (although our student loans didn't disappear). Well, we actually use everything we learned in school, plus a lot more, in our daily lives and with the foundation.

Sharayah and Tatiana have been witness to a lot of things which I am sure will give them strong characters. They have seen their parents go back to school (not easy with 3 children) and do well. They have not only seen but have been a part of a huge family crisis and have been there each step of the way as we face each day. They have seen so many people willing to help and do what they could to share Katia's story. They have seen the media reach out and share Katia's story, getting countless others involved. They have seen Katia go through tests after tests, take countless medications, have numerous spinals and bone marrow aspirations (unsedated) and just go through so much only to see her soon happy and smiling again.

I read on a site the other day that true joy comes with adversities and experience. That really rings true in our situation because we see things much more clearer than WE did before. We appreciate such small things that we don't look to the big things. Each day is a miracle and each night is a blessing.

Thank YOU for making this journey more bearable and for being a part of this miracle and thank YOU for sharing Katia's story.

Love, Tracy







February 1, 2005 5:00 PM

Hello there:)

I am sorry I am getting to this so late. It has been a busy day. I have more beads for bracelets now:) That means we will be doing some beading around here.

Today we are concerned about Katia. Her eyes are more red than ever. Yesterday they didn't seem to bad and we thought maybe they were improving but today, they just look sore and bad. So, she has an appointment at clinic on Friday for a transfusion and then we will go to the eye doctor from there (she hates that) for her eyes to be dilated and have a full exam. We really need to be sure nothing is going on inside her eyes that we don't know about. I think it has been about 8 months since her last eye appointment to check the insides of her eyes. Our other concern is possible fungus infection or something infected on the lens of the eyes. So, please pray that her eyes will clear up and this appointment doesn't show any new concerns. I really want her eyes to start improving but we have to find what is wrong so we know how to treat it.

Katia is doing much better with eating. Today she asked for Fruit Loops (of course there were none here). Whatever she is willing to eat, I am willing to go get. It is a good thing she isn't into caviar:)

Katia has also been sleeping on her own now. That is a great thing for everyone. I think it will give her more confidence in being a big girl:) She still likes me to call her my baby but she stresses she is a big girl.

I want to thank so many of you for checking on her over these last few years since I started this site. Some kids grow up on TV. Katia is growing up on her website. I look back at pictures 2 years ago and when she was just diagnosed. She was so small and acting like a typical two year old. Then this. She has accomplished and overcome so much adversity that it makes this Saturday all the more special. Katia is very admirable in the way she handles her daily routines and tasks. In so many ways, she is so beyond the age of 5.

She likes that picture at the top of the page:) She really feels quite special in those dresses. She has a blue one and a pink one and she just loves being all dolled up! I am glad she is feeling well enough to dress up again. I missed that!

Love, Tracy







January 31, 2005 1:44
Day 361
NEW PICTURES IN THE PHOTO ALBUM TOO:)


WBC 5.4
HGB 11.3
PLT 236
ANC 2100
WEIGHT FROM 12.6-12.9!!! (THAT IS 28 POUNDS)


All those numbers look good:) We almost had another perfect report card (remember we had one back on October 25, 2004.


Four more days...till our one year post-transplant anniversary on Saturday!!!

Todays clinic went well. We had a time with traffic this morning so it took an hour and a half to get there but we got there. Katia was all dressed in her "Doctor Scrubs" so she was eager to get into clinic and show the nurses!

This Saturday will be the BIG DAY!!! One year post transplant! Wow! I can't believe it. Every morning when I wake up I think back to "this time last year in the hospital..." and it just makes me appreciate each day all the more now! This time last year was quite nerve wracking. I was so anxious but yet so fearful. I didn't know what was going to happen to my little baby. I knew she was ready to fight and that gave me a lot of hope but I also knew things could go really well or really bad right away. I look at her now and I see her low weight and her red eyes but then I think of how her new blood has been flowing through her body for almost a year and how lucky we are that the person who donated their baby's cord gave Katia another chance at life. I think of how many people came forward trying to be a match for Katia or a match for anyone searching. I think of how many people came forward willing to share Katia's story and get the word out about Marrow Donation and the registry. I think of how many people sent cards and packages to bring us each day closer to getting out of the hospital while keeping Katia content while in there. I also can't believe that Katia was able to basically sit on that bed for over 8 months or be stuck in her room. I mean, she was 3 and then turned 4 in there. That is just amazing she sat still and behaved for so long. I think of all the medicines she has had and continues to take and she just does it, no questions asked. She gets upset with herself if she chokes on one or can't get it done. She doesn't understand that she really shouldn't have to be doing all that.

People ask how I spent so much time in the hospital without losing my mind? Well, it has to be one word, LOVE! The LOVE of God, the LOVE of family, the LOVE of friends, the LOVE of strangers, the LOVE of doctors and nurses, the LOVE of everyone. That is how we did it. Now, here we are today, at home. I used to think of all the pictures I could take around the house, in different rooms, outside etc. I knew in the back of my mind all the things I wanted to do and I just prayed that God would give us the chance to do all these things.

Of course, Katia is still under her medical restrictions but that is OKAY. She deals with it and we deal with it. When her body is ready, those restrictions will be lifted little by little. All in good time. She doesn't complain or whine about the things she can't do. She shows us the new things she can do LIKE, part of her ABC's, or touching her toes, or combing her pretty, curly hair:) I love running my fingers through her hair. It reminds me of a beautiful garden that has grown with love and care. You know what is funny? Katia has never had a haircut! She is 5 years old. I cut a bit of bangs off one time when she was 2 for her baby book and I did cut her hair while it was falling out BUT I mean she has never had a haircut because of length issues. She just keeps getting her baby hair back. Well this time, it is going to grow and grow:)

Someone asked me the other day what Katia's prognosis is. Well (talking about a 5 year survival rate) she is still around 40 percent. That takes a long time to go up each passing year. There are always risk but with each day, I look at Katia as a miracle, not a risk. Cancer is mean. It can always show its ugly face again. There can also be some very ugly side effects to the chemos, drugs, radiations and transplant. I would go crazy if that filled my mind. I try to look at each day as a way of making more memories. I feel blessed in that sense that God has shown me the little things to be content with.

I have some new pictures to post. So, let me get to that.

Oh, on the medical side... (we did go to clinic today). The eyes appear about the same but the lids aren't as flaky and itchy. There is some questionable area in Katia's mouth on her cheek. She does have GVHD in her mouth and is also being treated for that as well as her eyes BUT, this area is white and about the size of the end of my finger. It can either be GVHD, fungus, or an infection. Not really sure. We go back on Friday and they will take another look at it but we are continuing her anti-rejection medicines the same for now. She is also going to be scheduled for her next spinal chemo and bone marrow aspirate earlier next week. I pray that goes smoothly and we don't have the fevers and sickness again this time. It is that last time that started the weight loss, vomiting, fevers, etc and two hospital stays. We are working on a surprise for Katia on February 13th so I want her to feel good for that:)

So, let me post the pictures. I will probably change these pictures more often now as we are getting outside more and Katia is feeling better around the house. Her eyes bother her often so when they do, I don't use a flash so I can't really take pictures in the house until she feels better BUT she tells me when she is ready:)

Love, Tracy

PS Please pray for Lauren as they have just found out she has again relapsed. I was just emailed about it. I am sure she could use some encouragment.







January 30, 2005 1:36 PM

Wow, I never updated yesterday and that feels so weird to me. I am used to getting here to update every day.

First, I must say, the weather in Tampa is absolutely amazing today!!!! It is in the low 70's, the sun is out, there is a slight breeze and it is just beautiful.

Katia, Sharayah and I made baleadas (flour tortillas, refried beans, and cheese). Katia has fun making that sort of stuff and now they are making Fondue in the kitchen. Katia doesn't really care for chocolate much but she likes the sound of how the Fondue pot works. The house is all opened up and music is playing;) This is the way it should be!!

One of my friends drove down to see some family close by me so her boys and her dropped by here. It was a great surprise to see them. We have known each other all my life.

Tomorrow we have clinic first thing in the morning. I am glad because I have some concerns with the redness around Katia's eyes. The GVHD doesn't seem to really be improving and she has a another area of concern now around her mouth. I am not sure what it is but it seemed to be going away and now it is back again just a couple of days later. Usually everything clears up right before we arrive at clinic and I can't show them what I am talking about. Lately it hasn't been that way so hopefully we will get the bottom of this.

Last clinic visit, Katia weighed 12.6kg on their scale. She had on jeans and a shirt. So tomorrow, we will see what she weighs. She is wearing her "Doctor-in-Training" scrubs and her stethoscope:)

I have to say, Katia has had a good week of feeling well and seemingly eating well. I am glad to see that and I pray it will stay that way. She is due for spinal chemo and a bone marrow aspirate right now also so I am not sure when they will schedule the appointment for those. Usually we will go to clinic on Monday and if her counts are good, we schedule it for the end of the week.

Let's see, what else?

I want to thank you for visiting other sites that I post or have had posted in the past. The parents and children really appreciate it. A lot of the past prayer request have since earned their little angel wings and their parents are very much missing them. I ask that you always keep them in your prayers. I have never lost one of my children, but something I do know is a parent never wants their child to be forgotten. They like to hear the child's name or have people remember things about their child. These children and their parents go through so much over a long time or in a short time. People that keep up with Katia know how much of a roller coaster our lives are like. My heart so goes out to the parents that have gone through this and then, in the end, they have to say goodbye to their little one. I can't imagine a worse pain. No matter how a loved one is taken from us or how old the loved one is, it hurts. Please always remember to pray for them.

Someone asked me how do I keep up with so many families. Well, I don't keep up with so many on a day to day basis but over the period of a week or so, I do try to get around to a lot of the websites. When I go to their website, I pray for them. I read their update and see what their needs are, what is currently going on, etc. I don't always sign the guestbooks but I always do try to go by and check. A lot of the children (and adults) that I have kept up with that have since passed on, I try to visit those sites to see how the family parents seem to be coping. I know they don't post all their feelings but I just want to go by and see what they are saying. I pray for them and that God will give them some sort of peace. It is sometimes difficult to sign a guestbook or pray because we don't always know what to say. I just like to let them know I still remember their loved one and that they touched my life. I think we learn something from everyone in life we meet, no matter how we meet them. Do you know what I mean? Do you remember teachers or other students from school? Even those you really didn't deal with much? How about a doctor or nurse you have had in the past? I remember a lot of people (I am however horrible with names) that I have only met once. The people I check up online, I check up on often enough that I really know they make an indention in my heart and they will always be a part of me. Some of them are off treatment and no longer keep up their pages, some update rarely, some have passed on but their loved ones still check the page, etc. There are many angels that are on this earth and I am happy to say I have known a few. People that may think I don't remember them may not know that they affected my life.

A lot of you in the guestbook, I hear from you often enough that when I don't see you sign for a while, I pray you are okay. I appreciate those of you who have sent pictures for Katia's Caringbridge Neighborhood book. It is nice to put faces with names (and email addresses). I thank you for sharing your lives and your family with ours.

Well, I have babbled on long enough. See what happens when I don't update for a day...

Love, Tracy







January 28, 2005 12:43 PM

Good day (It was morning when I sat here to update but I went through emails first and...)

Katia is sitting here singing next to me. She makes up songs in her head and they can go on and on and on for quite a long time. She sort of tells stories in song.

I haven't weighed Katia but I think she is doing better. I want to wait and be surprised (hopefully in a good way) at her appointment on Monday. Her eyes still look about the same so I am not sure what we are doing is working. She has a few other areas of concern for the doctors to see on Monday also. Katia is really doing better with eating so I THINK she should be gaining some weight. She is definitely more energetic unlike a few weeks back.

I will change out the pictures either later today or tomorrow. I am still so happy she had such a good birthday. Let me take you back to her other birthdays. Her first birthday was great! She was healthy and happy and just as cute as a bug:) Her second birthday was shortly after she hit her head causing the eye to start swelling. She was going back and forth to her pediatrician pretty often because we knew something wasn't right. She felt fine but was beginning to have the appearance of a bulging eye and we were very concerned. Her third birthday was on SuperBowl Sunday and we had just moved into our house. The BUCS were in the Superbowl and WON! I mean that was just a great all around day! There was all sorts of fireworks and fire rackets and Katia just thought all that was for her. Katia was feeling well and looking well. Her 4th birthday was spent in the hospital, in her transplant room. She had been in the hospital for 5 months by this time and still had transplant to go through. We were happy to have found a match but very very nervous about her lungs and transplant by this time. She had been through so much already and expected to go through so much more. We had started The Katia Solomon Foundation and knew we were going through this to help raise awareness to a big need, signing up for the National Marrow Registry. We were amazed at Katia's ability to reach so many people and we knew we had to help others going through what we were and those that would go through this in the future-until a cure is found. Now, her 5th birthday was HOME! She has her "New Blood" and it seems to be doing very well in her. Katia is still on quite a few medicines which she takes 2-3 times a day with a good attitude. Katia still goes back and forth to clinic often but she does that with a good attitude. She still goes through testing and scans, etc. She does all of this with a good attitude. Katia is just an all around HERO to us and we look at her as an example of the best way to face a bad situation in life. God blessed us with Katia 5 years ago and through all these trials and scary times, He continues to show us how blessed we are. We have 3 wonderful girls, we have eachother (Myron and I) and we have God in control of everything. Although most people wouldn't look at our life and want to live it, we are thankful to God for giving us so many blessings in life and such great friendships throughout our life.

God bless.

Love, Tracy

PS I have added some new prayer request.


**********


January 27, 2005 1:05 PM

What a great day yesterday!!!! We could not have asked for a better day with Katia. She felt good, she was in a good mood and she had a lot of fun. She is still bouncing around today and happy playing with her presents. Of course we took a lot of pictures so I am going to put some up now and maybe change them out more often over the next few days.

Katia received a lot of gifts in the mail and she really was eager to rip into them. Needless to say, she ripped into them like a 5 year old! She had help from her sisters of course. She was so happy to see some of the things she really really wanted. I remember that feeling of getting something I circle in a magazine or pointed out in a store. That is the best! She only got one thing of clothes (you know how kids don't really care for clothes) but it was the cutest little nursing scrubs "Doctor in Training" so she can't wait to wear that to clinic. She got lots of ladybug stuff, books, animals, a stool, etc. She received games for her Leapster and InterActive TV game. She just got so many things nad she was so thrilled for the full day and going...

I want to thank each of you for making this day special in a way only you could. The guestbook was just awesome to sit down and read and so many of you have shared your lives with us and in many ways, shared Katia's story with others. I look at Katia as just an inspiration to us and so many to live life to the fullest and in the process of living our lives, reach out to whoever we can reach out to.

Well, I am actually in the middle of doing some work so I better get the pictures posted and get on with it. My dad leaves this Sunday and I think one thing he has seen during his stay here, we aren't bored. We definitely keep busy and use every hour of our day:)

Thank you for everything and for just being a great group of friends!

Love, Tracy








January 26, 2005 6:45 PM
MESSAGE FROM DADDYBUG!!!

A quick note from DaddyBug,

Hello everyone! What a wonderful day we celebrate today! All day long I've been smiling and thanking God for allowing my beautiful ladybug to reach this tremendous milestone that is 5 years old.

Katia has taught this family, and so many others how to cherish every second, she has inspired her daddy to be the very best person he can be.

I had the opportunity the other day to speak with a popular Middle-Weight boxing champion. I shared with him the fight that my little baby has been battling for so long, and how she has become my hero, her fight for life more that demonstrates what a true champion is. He certainly agreed!

Thank you so much to all of you who are celebrating this day with us, your well wishes, your cards and gifts are so much appreciated, God Bless.

I want to say thank you in specific to Susan from Nova Scotia for your wonderful gesture on Katia's behalf. The fact that you shared a present with someone who needed their spirits lifted in honor of Katia's birthday represents the true meaning of love, and it is exactly what Katia's journey has taught us all.

I pray every day for Katia's full recovery, and together with the Katia Solomon Foundation we pray for a cure, and that many more will beat this horrible dragon that invades our lives.

Well, it's time to go back and play with my sweet birthday bug and company.

Thank you again for everything.

Luv, Myron








JANUARY 26, 2005


HAPPY 5TH BIRTHDAY KATIA!!!!


Today is the day!!!! I will be back in a bit and I am going to update some pictures BUT, I wanted to share two things with you:)

A Kiss for YOU!


A message to YOU!


We are having fun around here right now so I will be back later with more update:)

Love, Tracy

PS Thank you for all the messages, hugs, presents, birthday e-cards, etc!!! Katia is having a really great time today!!






January 25, 2005 9:18 PM

Well, we are on a countdown!!! Katia is walking around in circles by me right now singing and happy that she gets her presents tomorrow and she will be 5! Tonight she had some cupcakes. She asked for them with yellow icing so she got those:) She was so happy with that, I can't imagine her tomorrow. She is just singing here next to me right now. It is so cute!

She wants a lot of balloons, a picture with her and her presents to show the people that look at her website (I told you she is controlling more of this site now).

Tonight, she asked Myron for one of those bouncy things you get in and jump in. Not sure about that but we will see. It would be good exercise and I am sure they have reasonable ones that aren't too huge and easy to clean:) I think she is catching onto this asking for things. Mind you, we just had Christmas and then she learned about the wish list... A real girl at heart I guess. I still can't believe she is almost 5.

Well, I wanted to update before I went to bed. We were looking at her hugs and I realized I never really finished updating earlier. I am glad I added that hug counter, she gets a kick out of it because I hug her a bunch and say the computer says I had to give her a whole big amount of hugs!! I hug her a bunch anyways though. So, if you get a chance, you can hug her up for her birthday:)

Thank you for celebrating this with us. I will put some new video up here with her and her cake or something. Or maybe just her walking around this circle singing:)

Love, Tracy







January 25, 2005 12:51PM
355 Days Post Transplant:)


Well tomorrow is the day!!! Katia will be 5. Tomorrow will not be a HUGE party but it will be a great day and a HUGE milestone for Katia. We still keep things pretty quiet with her as far as going places or too many people around. Her plans are (and this is what will be of course), cupcakes with yellow icing and sparkles, chocolate cake (thanks Karen), lots of balloons, presents (thanks everyone for what you have sent), and good times with music and fun:) I will be back later for more of an update but I wanted you to know all is well here and we are looking forward to tomorrow:)

Love, Tracy






January 23, 2005 1:43 PM

New MOVIE of Katia singing, "Let me do the POM POM..."

Enjoy:)

Love, Tracy



January 22, 2005 6:20 PM

Hello from the Solomons.

Just a few more days till Katia's birthday:) It will be this Wednesday. Hopefully she will eat a lot of cupcakes, cake and cookies and put on some weight. She is getting very very excited about her birthday. Today, she sat with me a while at the computer and I showed her all the recent hugs and messages and I squeezed her with hugs with each message:) She enjoys that! She definitely loves LOVE:)

Today was a reasonably quiet day. She really isn't feeling the best yet and her broviac has been bothering her. Her eyes are still red and puffy. They did look better earlier today but then they got messed up looking again. I am hoping with the increase of her meds, they will look better by Monday or so.

Tomorrow is supposed to be cold here. When it is cold, I really don't let Katia play on the backporch because cold burns calories and she doesn't need that or to get sick right now. SO, we will keep her amused inside. Her 12 month old pants and panties are getting very slack on her but her weight seems to be about the same. Right now she is right around 12.5 kg. I told her when she gets to 13.5 kg, I will get her a nice surprise. I am not sure yet what that surprise will be but I will make sure it is something she will be very happy with and want to do the same thing again:)

Well, Katia wants spaghetti tonight (she likes that quite often and we just are adapting to eating it often) so Myron is in charge of dinner tonight:) I think we are helping to support Ragu and Prego Spaghetti Sauces.

Please see the prayer request above as some have been added, some have been updated and they all could use your prayers.

Thank you for checking in on us:)

Love, Tracy






January 21, 2005 11:02 AM

Good morning:)

Well, we are on our birthday countdown:)

There are 5 days to go.... I think Katia is getting happier and happier by the day!!! She wants cupcakes and cake and to open her presents. She wants us to sing the song (which she has made sure I know the words) and for us to all yell, "HAPPY BIRTHDAY!!!!" I don't think she has to worry about all of us being totally happy!!

I think we are looking forward to this just as much as she is. I will take plenty of pictures all throughout the day! We are also working on another delayed birthday surprise for her. It has something to do with someone every little kid loves!!! I will share more as I know more!

Also, the auction for the bracelets ended and I don't plan on having another one right now. If you would like to have one (or more) you can just email me and I will work with you via email. I think that is easier and much more cost efficient. I showed Katia the bids coming in on her Decorated Ladybug and the Dragon books. She had fun doing the one we did yesterday. I am going to get one done for me also:) I think they are going to be something definitely to Treasure because she puts so much effort and love into it. She really does try hard to do a very good job on whatever she does. The first book has a Ladybug Drawn in it with a "Rainbow Flower". It turned out very pretty. Each one will be different. For those that win, if you would like something (an idea of your own) drawn (that Katia is able to draw), then you can let me know. She is also quite good at writing a name from looking at it on another piece of paper so maybe she can put a "To:" name in the book also. Each book will come with a picture of her decorating that individual book along with another picture drawn for you to put up on a fridge, your work or anywhere you would like to display the picture.

I have a few prayer request for you. One is a silent prayer request for a very strong and courageous little girl and her family. They have been through so much, over the last year especially, and they could really use the prayers for strength, encouragment and for overall health.

Another is for Jerry's family (he doesn't have a website but I will keep this story updated so you know how to pray and how he is doing). He will be having to travel all the way to Seatle for his transplant. They are praying very hard to find a match and if not, they will have to do the next best type of transplant they can do, using his own cells.

Third, for our family. I know you pray for us already and we so much appreciate this. Katia's success can only be an answer to prayers. Prayers help her doctors know what to do, the medicines and treatments to work, Katia to have the strength to continue her fight, try to eat and take her medicines. Prayer has helped this family get through some very hard times. I can honestly say that God has sent some Angels our way to help our family when we really didn't see how things were going to straighten out. Without those Angels, I don't know where we would be. Through all of this with Katia and our times of having to rely purely on faith, God has shown us there are so many wonderful people in this world. Truly genuine people ready and willing to help and be there. People who check up on Katia, leave encouragine messages, share their life stories with us and pray for all of those we have listed and then more.

I feel so encouraged when I come to this site because I really think it brings out the best in so many people and there is just always so much encouragement to be found. I hope each of you will take the time to read other people's messages in the guestbook. They are truly amazing and uplifting. I find it so awesome how so many people, from all parts of the world and all walks of life have come together on this site. Amazing!!!

God has great plans for Katia. I think she is an Angel here on earth. Our family has been blessed with her in our lives. This 5th birthday means so much to us and I know to each of you.

There are little parts of Katia being shared all over the world from books to braclets, tote bags, little wooden art pieces that she painted, Katia's Original Art (remember those?), just so much! I have heard of two strangers striking up a conversation (I forget which state) because they each had something from the Ladybug herself. One had a tote bag and the other a bracelet. I thought that was so cool!!!

Well, Katia is working on something right now and is bogged down so I better run:)

Love, Tracy








January 20, 2005
WBC 5.0
HGB 11.4
PLT 252
ANC 2300

Today's clinic visit went okay. Katia did lose more weight (I kind of expected that). Since she does seem to be eating better and trying to eat better, we will let her continue. She goes back on Monday.

The redness around her eyes seems to be caused by GVHD (Graft vs. Host Disease) so we are going to go back up on one of her Immune Suppresent Drugs (FK506), treat with Cyclosporin Eye Drops twice a day and also do a treatment twice a day for the inside of her mouth which seems to have flared up with GVHD again also. Hopefully that will make Katia feel and look a lot better real soon.

We went by the eye doctor (Katia hates eye appointments) and the idea was to look in her eyes, check her tearing (not the emotional kind of tears) and check the lenses of her eyes. Well, the tearing test was a no go because Katia just cried and cried and if those tears get on the test strips, it doesn't work. Her eye doctor was able to look at the lenses of the eyes and wants to also see her back on Monday once the drops have been used and the other medicines have been changed. He noticed an eye lash that was poking into Katia's eye and thought he would do something nice and remove it for her. That wasn't going to happen at all. So the tear tests and the eye last were a no go.

As far as Katia's labs, her CBC looks good. We are hoping that some of her paleness and red patches will maybe be corrected by working with the GVHD. I am not sure but we will see. There have been a few problems going on with Katia over the last 10 days or so and we are trying to find the roots to all these problems and get her back to improving and moving forward.

Today's appointment was just kind of a lot of information and I forgot to find out about a few things but I will talk to her doctor later today. We checked her Immune levels and depending on that is whether Katia will get IVIG transfusion on Monday. That is over 5-6 hours so we like to plan for that appointment.

Her birthday is next Wednesday so hopefully we will be appointment free and she will be feeling well.

We didn't get to bake our cookies yesterday. Katia started not feeling up to it so we put it off till today. Right now she says she just wants to rest so we will see.

Thank you for checking in on us. I will keep you updated:)

Love, Tracy








January 19, 2005 9:50 AM

Katia is sitting here with me so she may have a few comments here. She is not in the best of moods right now because her broviac is really bothering her. I will be glad when this one is gone. She comes in here, when I am on the computer (not as often as some may think) and she likes looking over her Wish List. I think it is great being that age. She really gets tickled by it. She has already had some birthday packages arrived and she is trying to guess what is in each of them. I love this age for birthdays. They are SO into it!!! Christmas was very fun because she was so excited about everything this year. I am so glad she is home and able to be in her own house this year.

Last year, her birthday was celebrated at the hospital and the Leukemia and Lymphoma Society showed up with a BUNCH of cupcakes and balloons!! She had received quite a number of balloons for her birthday and a great present by the hospital!! You know what it was? A BROVIAC:) Yes, on her birthday last year, she had surgery. She wanted them to give her a broviac with birthday cakes on it. Well, that didn't happen but the broviac she had worked very well until this past October so it did its job.

I look at Katia, as she sits here beside me and I just reflect on this last year. We have all been through so much but Katia is a strong little girl that makes things much easier on our family. She is so loving but at the same time, so tough. She is so needing but at the same time, so giving. Right now, she is sitting here with her head on my arm telling me how much she loves me. This is Katia:) I love spending my days with her. I couldn't ask for anything more.

I thank you for sharing Katia's journey with us. A LOT of you have been around since I started this page and more and more people have joined Katia's journey. If you are new to her journey OR if you would just like to share (even those that have been here for the duration of this page) how you came across Katia's story, we love reading it and I know visitors to the page love reading eachother's entries. It is always nice to see how Katia has touched so many lives in so many ways. What differences her battles have made.

For me, it has taught me a great deal about patience. I still have a long way to go but I have learned a lot. It has also allowed me to meet so many wonderful people, quite a few who are no longer with us. I thought about that the other day. I have known or kept up with so many people who have now gone onto being Angels. I feel honored to have a part of their memories with me. I feel honored to have had the privilege of meeting them or learning about them. So many come to my mind as I type this. Did I ever think I would go through anything like this? No way. I don't think anyone facing this figured they would face this in their lives. We have learned that this can touch a family overnight and just turn their life upside down. From kids to adults, from healthy athletes to newborn babies, from parents to children, to siblings, and cousins. It can affect co-workers, officials in governement, just anyone at anytime. So really, we are all in this together. We are all out for one common goal, cure these diseases. Hold the hands of those facing these diseases. Pray for eachother.

Katia has taught me so much but also each person who I have come across, not just people fighting tragic diseases but also from those of you who follow Katia. I have learned from you, by your guestbook entries, emails, etc. I appreciate you. We all do. The Solomon Family is grateful for your love and friendship and your compassion.

Okay, what does Katia have to say, since her Mom just babbled on and on (I type fast). Okay, from Katia's mouth, through my fingers, to your eyes:)
"Hello, and I like to play with toys and on the back porch. Mommy is going to make cookies today and my birthday is making me five (she holds up her hand of fingers). I want to play on the computer today but I need to eat first."

That is my little buddy through the day and she is quite the conversationalist also:)

Well, I better get going now that she is awake. It is eating time, medicine time and PLAY TIME!

Love, Tracy




************

January 18, 2005 3:20 PM
2nd Update today....

This is the story I wanted to share with you.



JERRY’S STORY





Jerry Gomez was diagnosed with Indolent Non-Hodgkin’s Lymphoma in August of 1998. He and his wife Carol were in the middle of a whirlwind of joy raising their new family, a set of six-month-old triplets, Robert, Julia and Max at the time of his diagnosis.


Since then, Jerry has undergone numerous conventional and experimental treatments to keep the cancer in remission. These types of treatment are no longer effective in fighting the cancer. The next step that has to be taken to save Jerry’s life is a bone marrow transplant.


Jerry has four siblings, but none of them are a match for him. Thus far, all other family members who have been tested are not a match either. The International donor bank of over 8 million has not yielded a sufficient match either. So we are asking for the help of our friends, co-workers and community.


The fact is that over 25f people in need of a bone marrow transplant do not have a donor match. This percentage is even higher in the minority population. The f minority donors in the International Donor Registry is extremely low. In order to help save Jerry’s life, as well as others in need of a donor, please, please come to one of the donor drives (the list is the other attachment on this email) and become a part of the National Donor program. With a simple test, you can literally be a lifesaver!


With much love, and many thanks for your support, The Jerry Gomez Family



Note: From Tracy Solomon

I have met Jerry, Carol and their three wonderful children, now 6 years of age. Their family has done so much for us trying to raise awareness for Katia's need to get a marrow match and now they are in the same need. Katia was one of our three daughters that we want to see grow up as a healthy and beautiful adult. JERRY is a daddy to his 3 wonderful children and his very loving wife. They love and need their daddy/husband as much as our family loves and needs our baby/sister, Katia. Please help this wonderful family and, in the process of helping them, you may be saving the life of another person in need also.






******

January 18, 2005 2:00 PM

Good day:)

Wow, what a couple of busy days. But, that is a good thing:)

Yesterday, we spent most of the day working on Katia Solomon Foundation business. A lot is going on with the beginning of the new year and we have some upcoming drives and hopefully, fundraisers, we are planning. Some drives for sure which I will post closer to the time.

Plus I have a story I want to share on here, with you but I am waiting for a photo to put with it.

Today, Katia and I CLEANED, CLEANED, and then CLEANED some more. She loves helping me clean and she is actually quite helpful.

We enjoyed our long weekend with the girls home and they keep Katia very well entertained. Plus we were able to see some of our friends over the long weekend, which is very nice.

Things with Katia are about the same. Of course, her weight is our biggest concern. Her appetite was next to nothing yesterday and today it is not all that much better. I am concerned by it but it seems there isn't a whole lot we can do to pressure her into eating. We will see what the doctors say at her appointment on Thursday.

She has taken a liking to bananas and of course she is still into her dry cereals and muffins. It is just she eats so little of it once she has it. She fills up so quickly with just a bite or two.

I am sure you are praying for her and I just ask that your prayers continue. We will all see Katia through this:)

Thank you so much for all the hugs you are sending. I am not sure who feels better by it, me or Katia? I think we both are just in awe of how many hugs there are.

Well, I will be back. Sorry for no update yesterday but those days of just going, going and going happen and usually I can squeeze in a couple of minutes but yesterday, I was just exausted.

Love, Tracy

PS It is asked many times, "Why does Katia love Ladybugs so much?" Well, you can click that link to learn more.









January 17, 2005 6:48PM

Busy day...
All is okay...
Be back with more tomorrow:)

Love,Tracy







January 16, 2005 1:09PM

Good day:)

Things are okay here. Katia seems to look better today so I will be happy for that:) Her weight is still the same although she is eating BUT she isn't losing anymore so, I will be happy with that:)

Last night, we were goofing around, watching football and I took some cute little clips of the kids on my camera (video clips) so I am going to TRY to figure out how to post those?

Other than that, we are packaging the ToteBags and Ladybug Club Bracelets for mailing tomorrow. We stay pretty busy around here. Katia was going around with the Floor Sweeper, "cleaning house" so she is occupied and happy:)

Love, Tracy

PS Look at all those hugs coming in!!!

PSS
Let's see if these links work for the little videos of Katia and the girls:)

Katia Take Two

Sharayah and Tatiana "What's up Liberty Girlfriend?"

I am not sure how this will work. Whether you will have to upload it or it will just play? I am new to this:)








January 15, 2005 12:56PM
Day 345 Post Transplant:)


20 more days to our one year! February 5th:)

Right now, Sharayah and Tatiana are working with the "Ladybug Club Bracelets". Katia is out there laughing and laughing which is an awesome sound!

She looks puffy in the face and has some red patches around her eyes, nose and mouth? I think Katia's health will forever keep me on my toes and worried. She moves around a lot in the mornings cause she says later that her belly hurts but then she doesn't complain much about during the day. I don't know if it is better or if she is getting used to the pain. She also gets tired of me bugging her so she stays quiet about things. Her broviac is bothering her right now too, it has been for quite some time. I think the way this one was inserted is just going to bother her until she gets it out. The surface of her skin shows the broviac insertion area and it has never done that before. It may just be because she is so skinny right now. One thing for sure, her cheeks are always puffy looking so she looks good in her face. Her lips are pale most of the day but not all of the day and we really can't clue in on what makes them pale or pink. We feel like a bunch of Nancy Drews in this house. Remember that series?

Well, I guess I should get back to beading so we get these things out on Monday. Thank you so much for those of you who have donated to KSF for the Treasure Box. We got some cute things (party favor items) that will go over big in the Treasure Box. We will keep on getting things as long as we can and try to stock up for a bit if possible.

Please keep an eye on the Prayer Request daily as I try to add/update them as I can. If you know something that I don't know about them, please email me. Somedays, I am not able to check on everyone.

Love, Tracy

PS Someone set out a goal in the guestbook of 10,000 hugs (on the counter above) by Katia's birthday. We call them "squeezes" too:) Whatever we call them, she likes them!







January 14, 2005 2:25 PM

Good day:)

It is raining and gloomy here but I have a cute pic to share that will make you smile. Katia got a package of "goodies" in the mail and she just lit up!!! So, she wanted to hold all of it at once. I will put the pick up in a second. (In Photo Album)

Today is the last day for the Tote Bags sale on Ebay. If you haven't gotten one yet, they are extremely cute. We can add messages to them if you are giving them to someone else like a "Happy Birthday" message or something. So let me know. We will be getting the ones done, that have been ordered already, this weekend and out in the mail Monday. If you have order one and would like a little message added on the back of the back to more personalize it, let me know. I just kind of thought of this so the thought is "Hot off the press". These bags were donated and have come in to be very useful at a time when it is very needed. So, thank you for helping by ordering your bag.

Also, the "Ladybug Club" is growing each and every day so I am thinking about trying to find a way to tie all of it together and make it a bit more formal. At least more organized. If you haven't sent a pic with you and your Ladybug Bracelet, go ahead and do so (preferrably through email).

Okay, Katia news. Well she is still of concern to me. She just doesn't seem like herself. Don't get me wrong, she is happy and loving. She is TRYING to eat more. It is just her lips are still pale most of the time, her eyes are red around the edges and something just doesn't seem right with her. I am finding it very hard to find the source of the problem. Her labs have been looking fine (CBC labs). There was a trace of blood in her stool but the final report isn't back. It wasn't C-Difficile, Rotovirus (sp) or most of the other things they checked. I just feel like somehow, all of this is linked and we just aren't able to put our finger on the source of the problem. I didn't weigh her this morning before she ate so I have to wait until tomorrow now. Last night she ate quite a bit which was great! I worried she would get constipated or have belly problems but she held the food down and seemed to be okay. She did wake up SCREAMING this morning because her belly hurt but then she fell right back asleep. Today, she has seemed fine. Last night, she had 2 bananas, a bagel with cheese, some rice and ground meat and water. She held it all down. Today she has had 2 bananas, a bagel and cheese, a few bites of cereal and water throughout the day.

I will keep you updated throughout the weekend how she does. Due to some scheduling problems between our schedule and clinic, she will not go to clinic until next Thursday (20th), unless we see a need to go in earlier. Bone Marrow Transplant patients are only seen on Mondays and Thursdays and Monday is up in the air unless she HAS to go in.

Well, let me work on that photo. It will be up in just a bit:)

Love, Tracy

PS If you haven't seen the note above, we are doing another ToyDrive for the Treasure Box:)









January 13, 2005 9:19 AM

Good morning:)

Ms. Katia is still sleeping as I have some coffee, check email and update. She looks very very comfy right now:)

Let me tell you about that outfit she has on in the pic above. She received that Monster's Inc outfit in the mail while she was in for her last hospital stay during her very first treatments in 2002. She had scared us bad with a fever of 107.8 and then she stopped breathing. Two days after being admitted, she was running the halls, cancer free, and modeling for the camera with the nurses. I LOVED the little nursing scrubs (that is what these are). Anyway, she had basically outgrown them a few months later when she turned 3 years old (the picture in the border). She was too chubby, although the pants were always having to be cuffed up when they did fit.

The other day, I had to get some pants that wouldn't keep falling down so I got her some size "24 month" pants. I thought about this outfit and pulled it out to see if it fit Katia. It did. So she is back in it again. She LOVES to wear her little SCRUBS. In the picture above, she was supposed to be a doctor, then a nurse, and then when she put on the Sunglasses, she wasn't sure what to say she was so she soluted me:)

That is the story behind the picture.

Right now Katia is going up and down between 26-27 pounds. I told her the idea is to outgrow those Scrubs again (she doesn't see how that would be good) and to surprise her doctors with her weight "increase" when we go back in. Right now, on a good day, she will go in and be the same, hopefully not less. Katia really is trying to gain weight though. I am very proud of her. One day she is going to make a fabulous doctor because of all she has been through. She will be able to deal very well with her patients and have a heart for them and the situations they find themselves in.

Katia may be a wee small little girl about to turn 5 but she has a huge heart, a great mind, and a lot of experience in that little body:)

Love, Tracy

PS Look at the HUG counter above:)

Another PS
I have been emailed quite a bit about what Katia can/can't have for her birthday so I will answer it here. She and I sat down at Amazon.com and made a wish list of some things she wants. That is this generation's way of sitting down with a Sear's Catalog. There is a link (wish list) at the bottom of the page. Katia still isn't supposed to get stuffed animals, she is allowed to have books. She loves "Cool" shirts and such or dress up things. Katia is very easy to make happy. I guess you have realized that by now. Hopefully that helps some.
She will be Happy on her birthday no matter what because her biggest thing is that she gets cake with candles and that we sing her Happy Birthday. That is easy enough:) Thank you for asking though and thank you for keeping up with her. She is kinda "growing up online."









January 12, 2005 9:50 AM

Good morning:)

As I type, Katia is sitting here playing. She is getting really good on her Leapster and I am happy to see that. She used to get flustered because she wouldn't get something right but now, she is doing much better listening and following the directions.

Myron is home sick today. It seems he has a bug that is going around and his throat is messed up as well as a cold or something. Pray that it passes quickly.

Katia slept decently well last night but she does move around a lot. Either she is hot or cold or sore. Her broviac site looks better though. It is still bruised but not as bad, much better. Her belly was fine all night and today started out with a donut. Calories are what matter right now so I guess that was a good start to her day.

We are doing our morning cleanup around here but I just wanted to check in and update.

Thank you for ordering the Tote Bags and "Ladybug Club Bracelets" from the auction above. Wherever you live, you will have a piece of Katia there with you. Our original idea for the bags was to have her hand prints on them BUT she was not into that idea so we backed off. Maybe on something else some other time.

Love, Tracy


WishList


*******




January 11, 2005 8:40 PM
Second update today...

Well, today has been good but not pain free for Katia. She is having her belly pains. I don't think they last as long but they are still there.

However, she seems to have eaten more today than yesterday. I wouldn't say it was "Healthy Foods" but it was calories. This morning she had a bowl of mixed up cereals and milk. For lunch, she had one chicken nugget. This afternoon she had part of a cookie, part of a donut and some pretzels. Tonight she had some spaghetti. She does drink fine but no Slim Fast so she had to take her potassium meds today. She didn't take it yesterday but now she has missed her SlimFast for 2 1/2 days and that will bring down her Potassium count. One of these pills is the equivalent of maybe 3 bananas and also the potassium in Slim Fast is quite hi (an idea for those of you out there who have Potassium problems). Slim Fast has a lot of needed nutrients and I feel good when she drinks it. A comparison of Slim Fast and Ensure or Pediature, to me, is like comparing Bran Cereal to Total Bran Cereal. I have done a lot of comparing. Katia absolutely does not like the taste of Pediasure which I would think tasted better. Anyway, through a lot of trial and error, we have gotten a lot of her nutrients worked out in a way that she likes and doesn't react with any of her other medicines or health issues.

Let's see what else? I got to see one of my friends today that I grew up with. Well, I met her when I was around 11 years old I think. She lives in Germany now and since I had seen her, she had a little baby girl and is expecting another. I got to see her, her husband, her Mom and stepdad. OH! And the adorable little baby, Anslee! What a doll! She even let me hold her. Tomorrow will be little Anslee's 1st birthday. My friend, Marilib has lived in Germany for the past few years so I don't see her as often as I would like but she is one of those friends, when we get around eachother, it is like no time has passed. Good friends are great to have!

15 more days to Ms. Katia's birthday. I can't believe it is right around the corner. I don't like to get too eager for making plans because of course, we don't control too much of Katia's health yet BUT I am thinking we have a very good chance to be spending this birthday at home!! We picked out some things she is interested in (much easier than guessing) and she is already telling people she is going to be a "Full Hand" old. I knew she would like turning 5!!

Today, she was sitting with me on the back porch discussing her "lack of eating" and about the NG tube in her nose. She doesn't want one but she said if she HAD to have one, she wants the tape that holds it in place to be in the shape of a heart (like a little girl we keep up with). She also added that she will really really try to eat a lot and get bigger though. That is when she decided to eat the 1/2 of chocolate chip cookie we baked today. The other night at dinner, last night I think, she was eating (Myron was feeding her). She told Myron that she had a dream that she was eating and he was happy... Is she sweet or what! She really does thrive to make us happy and to get good report cards at her clinic visits. She knows how important her weight is.

Well, I have babbled enough. I need to get her ready for bed and, seeing that she just woke up from a nap, I have a feeling she will be keeping a late night. When she can't sleep, she likes to talk. It reminds me of us talking in the middle of the nights at the hospital. It is funny but I find it very easy to carry on a good conversation with Katia. I think I understand her words much more clearly than most people and she understands everything I say. I have never used baby talk with her so she is quick to pick up what I am saying and... you won't believe this, I TALK VERY FAST:)

Love, Tracy







January 11, 2005 8:30 AM
Day 341

I am so sorry I didn't get back here last night. I finally got to meet the man that helped Myron produce the album "Rain", David. He came over and was able to meet the rest of the family last night. VERY musically talented and a great and sincere person.

While he was here, we also got a phone call from Heather Piccininni. Remember she was the backup singer on "Katia's Song" and also one of the last 15 on American Idol this past season. Hopefully we can meet her soon and she can meet Katia also. Katia got on the phone and said hello to her. Myron accomplished quite a bit while we were in the hospital all those months but there are a lot of people I nor Katia have had a chance to meet. So many people did things to help us during the drives and get these albums together.

Katia is doing okay. She had no belly pains last night:) That was super! She was actually quite energetic and felt well. I haven't heard anything about any of the lab tests yet. So, I will be back with that. I just wanted to share this with you this morning that you see, your prayers work:)

Love, Tracy

PS I have updated prayer request above and added a few new ones.




January 10, 2005 11:02 AM

Good morning;)

Long night...

Katia's tummy started acting up about 11:00 PM and again around 3:00 AM. She took pain medicine around 3:30 AM and fell back asleep. When she used the bathroom in the night, I noticed her bowels were getting runny so I decided to get a sample this morning to take to clinic this afternoon. It seems there is some blood in them. Hopefully this will determine what her problem is. I think the problem should show up in the stool sample. That is just my gut feeling.

I just wanted to update this morning and let you know how things are going and to thank you for all your prayers and messages in the guestbook. It definitely does help the stress level and give comfort.

I will definitely be back later this afternoon to update you:)

Love, Tracy







January 9, 2005 (When am I going to learn the 2005?)
4:07 PM

Hello from the Solomon Household:)

Well, let's see, what should I start with?

I guess I will start with a concern of mine. Katia is having a lot of belly pain. Not all the time but when she does she just cries and cries and then usually wants to be left alone so she can sleep. She says sleeping makes it better. She wanted me to call her doctor so I did and discussed a few concerns with her.

Katia's appetite really hasn't improved much although she is trying to eat a little more, mainly because she REALLY wants to do a good job and get a good report from clinic. Since her belly is hurting, she isn't eating as much as she did 2 days ago though.

So, please pray for her belly pain to go away and for her appetite to increase. We are discussing either the NG Tube or the Megace at this point. Since Thursday, Katia has lost a pound (not going in the right direction). She is down to 27.3 pounds. That is after she ate 1/3 serving of her favorite "Beenie Weenies".

Thank you for visiting the auctions listed above. I am sure you will love the "Ladybug Club" Bracelets and the Personalized Ladybug Tote Bags. When ordering a ToteBag, please make sure you include the name you want on the ToteBag. Your name will be on it and followed with "is Sharing Hope on the Wings of a Ladybug". There is of course a ladybug and decorations on the bag as well. As far as the bracelets, the supplier I was using has run out, so after this auction ends, there may or not be another one and then that will probably be it for a while. I am looking around at some other alternatives though.

Let's see, what else? We have been quite busy around here today going through the garage. It does look better but there is still a long way to go. I try to get as much as possible into weather proof plastic storage containers. I was thankful for that during the hurricanes because that keeps them protected from water getting in on the garage floor. While Katia was sleeping, we went through quite a bit of bags and organized them into plastic bins. Yes, I am a busybody:)

Well, that is about it. I may update depending on how Katia is doing tonight. I am just praying her belly doesn't start hurting again tonight like last night and today. I feel so bad for her when she is in that type of pain and there is really nothing I can do.

Love, Tracy







January 8, 2005 2:27 PM

We are working on a really cute project and it will be available sometime today. They are going to be personalized totebags that will have the purchaser's name on it and of course something to do with Ladybugs:) They are turning out really cute. I will put the link up when they are ready.

Today is going well. Katia ate Life Cereal for breakfast and had 2 bowls of soup for lunch with part of a bagel. She is in good spirits today. I am so glad. She does have these little red areas on her cheeks and under her eyes but they just look like an allergy or something. She was painting earlier and I think maybe that had something to do with it. She looks like she is going to be taking a nap real soon.

She didn't want to go anywhere today so we have just been around here. We took down the Christmas trees today and organized a little bit in the garage (that place needs help). Katia likes to clean so she goes around moving things closer together on all the tables. She likes "straightening" and she loves to wipe things off with a cloth:) Can you tell she is mine?

Well, I mixed her a protein drink so I need to see that she drinks it. She said it tasted good.

THANK YOU so much for all of the advice and prayers and the HUGS:) Katia likes the hug counter thing on the page:)

Love, Tracy







January 7, 2005 (second update today)
9:00 PM


WOW!!! Do you see the hug counter? I told Katia she is getting "squeezed" from all over the place! I thought that was a cute idea so I had to put one there.

You wanna know something? Katia is VERY VERY VERY huggable!!! I love giving her hugs and she always will come up to me and hug my leg or if I am sitting down, just come give me hugs. She loves her mommy and it makes me feel good. If I am sitting on the floor, she will just come over and lay her head on my shoulder and put her arm around me. She is just very loving. That little girl has a heart of gold! So now you know all about Katia's hugs while you give her yours:)

Katia ate spaghetti tonight and was very proud of herself. She didn't eat a lot but she ate.

Let me answer some emails on here because they will clarify some stuff. The Marinol or Megace are definitely good ideas. If she starts dropping back down again, then that will probably be the first thing we try. We have discussed this with her doctor before. It does sound like a good solution and it may help. The other ideas are the different drinks like Ensure, Pediasure, or smoothies. Katia does drink SlimFast (usually 2 per day). That is how we have been able to stabalize her potassium and get her (as of today) off her potassium suppliment capsules. They also have 240 calories each drink and a lot of needed nutrients. They have more in them than most of the other drinks because they are meant to replace a meal instead of supplement a meal. She drinks the vanilla ones but she calls it "chocolate milk". She really likes her SlimFast. She has one after breakfast and usually another one at night before bed or during the night.

A big problem is that Katia lost most of her muscle after transplant and since she has no fat, she is just skin and bones right now. I am sure this takes away her energy. She adores "Crazy Bread" so we have gotten her garlic bread sticks. She seems to really like the Little Debbie Oatmeal cookies and will usually eat at least 1/2 of one. She likes the little packs of bite size Chocolate Chip Muffins that Entermanns makes. She loves cereals like Scooby Doo and Mudd Bugs. The problem is Katia isn't a typical almost 5 year old. I think if she was just a healthy child who hadn't already been through so much, she would sustain her weight on her diet but she is having to play catchup and at the same time, get exercise to build back some muscles.

I take a lot of pictures of Katia and since she has her pretty little cheeks, she doesn't look too skinny in pictures. Katia gets sponge baths so usually I bathe her little by little keeping her partially dressed all the time. Very rarely do I even see the WHOLE Katia. Well, the other day, I changed her and gave her a spongebath but then we got her clothes wet so I stripped her down and just by seeing all of her at once, I realized she was even skinnier than I thought. So, that is why this seems to be a bigger problem now than normal. She has dropped down to a clothing size of 18 months for her bottoms and 3T for her tops (only because she is longer). When Katia relapsed she was 3T and 4T bottoms and size 5/6 shirts for the most part. This is now a year and a half later and she has shrunk this much instead of grown. I expected a lot of this going into transplant but I really thought that by now, things would have turned around. When Myron and I pick her up, we just can feel so much of her bones and she feels so fragile. I didn't think she would be so long without being able to walk and lose all that muscle. That surprised me.

I say all of this to say, I do so much appreciate advice. That is how we learn things. I appreciate your prayers. They have gotten us this far. I appreciate your checking in on Katia and truly following her progress. I look at this website as a way to share our journey with Katia. Although we all have ideas of how things will go, life seems to have its own ideas and things change. So, this is just another one of those changes we will have to get through. Katia has a lot of love backing her up from all over the world and that means a lot!!

You see the picture on the page background, her touching her toes. That was when she had just turned 3 years old. I just packed that outfit today since she can't wear it (she will be back into it soon) and that bending over and touching her toes, we are working on that. I can't wait to get that picture again:)

Love, Tracy








January 7, 2005 4:00 PM

Hello:)

I can pretty much summarize today with one word, STRESS:)

We are really trying to get Katia to eat more and it is definitely not an easy task. I hate upsetting her. It makes me feel bad when she cries BUT it makes me feel worse when I see how skinny and weak she is. I could deal with this better if she was just skinny but she is so wiped out that I think it has a lot to do with her lack of eating.

Today, she tried Cream of Wheat in the morning. She said she really liked it but had 3 bites and then about 5 more by my basically forcing her. This afternoon, she had her Beenie Weenies. She loves them but still, she eats about a third of the serving and has had enough.

Myron and I went to the store last night and tried to get some higher calorie foods for her to try and see if she will just fall in love with one of them. She isn't so much a picky eater but she just fills up so quickly. She has her favorites but she is usually willing to eat SOME of whatever we give her. Thank goodness for her vitamins and her Slim Fast or she would completely fall apart. Today, I said, "I am this close (of course I made the little "wee close" sign) to having you plugged back in to your TPN and Lipids." Remember, that is what got her through 7 months without a bite of food and kept her looking plump and feeling better. Anyway, you know what her response was? "I like the Lipids." Let me explain. Lipids come in a little cute jar and it looks like milk. It is hung up and plugged into her broviac. The TPN is also hung up and plugged into her broviac. She sees no problem with these things.

So, you can see our dilemma.

Katia is the center of things around here and we all do whatever it takes to keep her happy and progressing each day. No matter how much we love her, it does wear on a person through time. You feel bad when you upset her or get her flustered but it just has to be done for her benefit. Finances cause us a great stress each day and we try to really keep that seperate from dealing with Katia and the girls. Then there is our strong desire to be able to reach out to others. We really have quite a few goals in mind (goals is what keeps us focused) and also we stay pretty involved with the Katia Solomon Foundation and making it grow. I have to tell myself that it is definitely something that matters and will make a difference. I know it will and I really feel that someday Ms. Katia herself will be able to do speaking engagements and drives but for now, we have to keep things moving ahead. So many people have responded in such a positive way that we KNOW it is the right thing to do.

If you noticed above, there is a little "Hug" for Katia available. I figure she needs those right now since Mommy is having to get on her case so much about eating and walking, etc. Everytime you come to the page and push that hug button, it makes a little "Hug Counter" go up in numbers. I showed it to her on someone else's page and she thought is was really cute. I give Katia hugs all throughout the day so I figure this is a way we can all send her hugs on a daily basis:) There is a link available up there also for those of you who may want to add it to your own page. THANKS:)

So, please keep Katia in your prayers that she will eat and gain some weight, continue to have stable labs, and be able to get strong and more playful. Also, please keep our family in your prayers for financial guidance and just plain out energy:) My dad is in town and I feel older than him half the time just because there is always so much going on and in need of my attention.

So, I guess I am rambling or venting but all in all I just like to share with you what is going on.

Have a great weekend!!!! My goal this weekend? Get Katia and the girls to a park and take some nice pictures and just sit and watch them play some:)

Love, Tracy








January 6, 2005 3:45PM

WBC 5.8 (I am much more comfortable with this number)
HGB 10.2
PLT 254 (not a problem anymore!)
ANC 2700


Good day:)

We had a nice visit to clinic. Katia is always happy to pay a little visit to the doctors and nurses so that is good. At least she likes the place:)

She had one of her transfusions of the Dacluzimab done today, had labs drawn and just a checking over by the doctor. She is looking much better right now. She is still low on energy and the opinion is that maybe it is due to the amount of immunosuppressent drugs she is on. Those will slowly but surely be tapered off over the next months so hopefully that will improve her energy and appetite. Her eye looks good right now which is good. If there was a problem with the tumor itself, I don't think it would show improvement. Last time it only worsened as the days went on so I am more comfortable about the eye also:)

What else? Oh, yes! The weight. Drum roll please. We went from 12.5kg to 12.8kg so that is moving in the right direction. That is like going from 27.5 pounds to 28.2 pounds (I will do the math for you). She is still very skinny but maybe she will continue on this increase. She wants to. Right now she wears 24 month size pants (2T) but I think we are going to have to give in and drop back down to 18 month size pants. I told her maybe for her 5th birthday I will get her 1 year old pants:) She didn't catch onto what I was saying. She just responded with, "Don't let them be so big." She also wants to not be so tired. She gets mad when she gets tired. I hope by Spring, she will want to get out and play in the backyard for a while.

I am going to update the pictures in just a bit. I am working on that right now but I wanted to update about the clinic trip first.

All in all this has been a positive clinic visit which is very nice to go into the weekend with. Her blood pressures also seem to have stabalized to where they will probably stay for her. They are right around 83/54 and such so at least we are out of the 30's for that bottom number. She still gets pale on and off but her blood counts show she isn't going down on her hemoglobin.

Well, let me work on the pictures. I have some cute ones!

Love, Tracy


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January 5, 2005 3:00 PM

I just realized I have still been putting 2004 on my updates... I wonder how long it will take me to catch on:)

Katia is doing well today. She has been pretty lazy but feeling well. She ate her breakfast and lunch so I am happy with that.

Hopefully she has gained weight for tomorrow's weigh in:) I think she has. I don't weigh her too often at home because really, the scales are different and it also just seems to irritate her. Katia SAYS she is gaining weight:)

As far as the rest of us, we are just continuing with our daily routines and happy to be home. Almost every morning since this past August, I have started my day with the same thought, "This time last year, we were in the hospital..." so it is a good way to start my day off by being thankful.

Good news... Katia is being a little more agreeable with me and my camera:) Hopefully I will get some new pictures up here more often.

I will check back later. I have been going around to other sites and updating the pulldown menus and prayer requests today. Hopefully, I am catching up.

Love, Tracy


PS Katia just said to say HIYA!







January 4, 2005 2:25 PM

Good day:)

As I type, Katia is sitting watching Monster's Inc. I love that movie!! She hasn't budged which is not look her so this definitely is holding her attention:)

Things are good for her today. She still has puffy eyes but then they seem to perk up at different times. I did some eye testing with her this morning and she does seem to see fine out of her right eye. Katia is hard to get information out of so we have to find creative ways to test her. She is a smart little cookie!

The broviac site looks about the same as yesterday, still red and bruised. I changed her dressing and put on antibiotic ointment so hopefully it will improve and not need any further care. I have no idea why it would be bruised but she also is complaining that it hurts. BUT, when we go to clinic she is cured. She doesn't like to tell them anything that bothers her unless it is REALLY bad. I guess I don't blame her though.

Myron, the girls and I are working on a project. It should turn out good. Myron and I are the type of people when we set our mind to something, we tend to follow through with it quickly. What is it? Well, I can't say that right now:) I will in due time though. Is that mean? It gives us something to look forward to:)

Also, I have bracelets available so I started an auction to run over the next few days. I didn't want to run another auction until I had the bracelets ready to go. This will probably be it for a while though. I love seeing those "Ladybug Club Members" in the guestbook:)

Katia's eating has improved some so hopefully she will gain some weight by Thursday.

That is about it for now. If I hear any word on any of the other tests run yesterday, I will be back.

Love, Tracy







January 3, 2005 7:20 PM

WBC 8.5
HGB 10.4
PLT 278
ANC 4900

Well, it is about time for me to update:)

The clinic went good. We ran some extra blood tests and checked her regular levels. Her potassium is good enough to back off some of the pills so that is good! Katia won't miss having to take so many of those big pills:)

Her blood levels are okay but her WBC is climbing up again. At the same time, she has a red area and bruised area around the entry of her broviac. So, we are going to go back Thursday and check her counts again and view the site with the doctor. They took blood tests to make sure it isn't inside the broviac line and I pray it isn't or that would be an admit for about 14 days. We don't want that at all.

Katia's energy level seems to be coming up a little this afternoon. She had one nap today but seems to be decently in a good mood and awake for now. So, that is good. Hopefully her blood pressures will get back up to where they belong soon. They aren't critically low or anything but they should be higher than they are.

The other thing we are changing is one of her liquid medicines, Magnesium, will be changed to a pill form. Katia is sick of the liquid form so she will be happy with this change, I AM SURE:)

What else? Myron and I took her to clinic today so she got lectured by each of us about more weight loss. She dropped from 12.7kg to 12.5. It doesn't seem like a lot but it HAS to go up. So she promises to eat a lot and gain weight. We will see. She really does try hard though. She ask for everything under the sun and we try to get it for her but after a bite, she says she is full. Walmart needs to have a section for "One-bite-eaters". Of course Sharayah and Tatiana don't mind the added foods around here. They love little frozen pizzas, breadsticks, and everything else Katia gets into the house. Walmart must love us too.

Katia still hasn't had enough energy to really play with her kitchen and trust me, when she does, I will get more pics of her.

As far as her eye, we are staying on track with scheduling her full eye exam to coincide with her next sedation for her BMA (bone marrow aspiration) and spinals. Until then, we will just keep our eyes on her eye and notice if it changes more.

Well, it is late and I have to finish dinner. Somehow everything kind of got out of schedule tonight so we are behind around here.

Thank you so much for all your prayers. They give so much comfort!!

Love, Tracy






January 2, 2005 8:30 PM

Good evening:)

I haven't really updated since last year!!! I let Myron do the update yesterday but I didn't add it on until this morning (forgetful me).

I have just been staying busy around here and doing a few errands with my dad when Myron gets home. It has been a busy few days but that is okay.

I am still concerned about Katia, more concerned really. She is just so tired still and pale, especially her lips. Her right eye (where the tumor is) is becoming puffier again and I am not sure what is going on with that. It normally looks okay when you look at her but her reflection in the mirrow always shows the symmetry to be off. But now, when I look at her, it seems like the symmetry is changing and it is puffier and red. I don't know. I did discuss this at her last appointment but they didn't really see what I was talking about as it does come and go. It seems to be more now so maybe they will see it? They are however planning on a full eye exam anyway during her next spinal chemo in a couple of weeks. She will have her bone marrow aspiration done at that time also and they can do a better eye exam while she is actually sedated. Katia HATES her eyes to be bothered. Poor thing has been through so many eye appointments, had tons of eye drops to prevent damage from chemo or to dilate her eyes, moisturize her eyes, etc. She really doesn't like the eye doctor appointments. She does like her eye doctor (until he starts the exam).

So, I ask that you keep Ms. Katia in your prayers that they can find the reasoning behind her paleness, weakness, and the swelling in the eye. As a little girl, we don't want Katia's eye to look bad but most importantly, we don't want her health threatened anymore than it already is.

When I ask Katia what is wrong or how she feels, she just says she is tired but she doesn't want to sleep. She feels like her "brain is tired" and her eye is "pushy but not dry". She doesn't explain herself too well but I think mainly because she doesn't want to have to see the doctor for feeling bad or go into the hospital for feeling bad.

I will update tomorrow when I know more. Myron and I are both taking her over. He is off on Mondays right now so he goes to clinic with me when he can. That way, we have two working brains (depending).

Oh! Let me tell you about the New Year. Well, since my dad is here, Myron and I went over to some friends' house for a couple of hours on New Year's Eve. Myron had met them but I hadn't yet. They had helped organize some Christmas stuff for the girls and us and had planned on a "Meeting with Katia and Santa" which would have been great! The night we were supposed to do that was the night after Katia had been admitted for fevers so we didn't get to do that. Anyway, we went over to their house for New Year's Eve and met some wonderful people. Since Myron had to work early New Years Day, we headed back home and let him go to bed. I stayed up with the girls and my dad and HEARD the New Year come in with a BANG! I took Katia outside to see the fireworks and such outside. Our neighbors were out there so we visited outside for a bit and Katia LOVED the fireworks!!! We came in and about 10 minutes later, she was asleep:) It was so great to have her home and be able to see the excitement in the neighborhood. We have great neighbors!

Well, I wanted to share that with you as I hadn't updated about it yet.

So, have a good day tomorrow and keep Katia in your prayers as well as so many others facing appointments, tests, etc.

Love, Tracy






January 1, 2005



Happy New Year!!!

Just a quick note to send you all our very heartfelt best wishes, and a prayer that this new year will bring you lots of love, happiness and health.

I look forward to a year of miracles, and a renewing of strength to does who are in such need of it.

I thank God for bringing Katia into this new year, and for the miracle that she is.

I give thanks to God for you, and the source of encouragement that you are, our friends.

I pray that this year we will find ways to further spread the message of hope, and in some small way make a difference, and bring some sort of blessing into someone else's life.

A new year, brings a new determination, and a new commitment to be the very best we can be to one another.

May 2005 be fill with lots of happy moments and may you create many wonderful memories that will last for years to come.

Lots of love to you all,

Luv, your friend, Myron (AKA-Daddy Bug)

Myron





December 31, 2004 5:42 PM

Well, as they say, "Out with the old, in with the new!" We really did that last year! Out with the old bone marrow and in with the new! So, we are celebrating this new year coming in with more hope than ever before!! That is my big thing for this coming year. Not only HOPE for Katia but HOPE for a lot of people for many reasons. Everyone has problems. So, my hope is for this. I pray that first and foremost, people will turn to God with their problems. At the same time, turn to God with their thanks. We are so thankful to God for the finding of a match for Katia. Without being thankful for that, we could not be hopeful for her life.

My heart is really really burdened by what is going on for so many on the other side of the world. It is so weird how there can be huge natural disasters and war going on, but yet we really don't feel that here. The world is SO SO big!!! I wrote a poem about that many years ago about just how small we are in our big world. It makes you think. Not about how insignificant we are but how amazing it is that as just one person, we can make such a difference. My hope is that more people will find out how they can make a difference and step out and just do it (as NIKE says). With everyone striving to make someone else's life better, it would be just an amazing world. So many people have come into our lives and you are really making a difference. Not just to Katia or our family but to those we reach out to also. You are a part of everything we do.

Today, there was a little old lady who looked completely lost in the neighborhood. My dad and I followed her around in the car for a bit just seeing if she was lost or out for a walk. It didn't take long to realize she was looking for her home and couldn't find it. She just was wondering into yards and then back to the side walk, crossing streets and just really looked lost. I didn't want to scare her but I definitely wanted to help her and my dad agreed, she was lost. So, I called a friend of ours and she knew of the lady I was speaking about and told me where she lived. I got out and tried to the best of my ability (she spoke only Spanish) to let her know where she needed to go and that I would walk with her. She followed me and slowly we made our way to her house where her daughter was in the yard. She had gone about 12 blocks away from home and was just nervous and scared and very sore from walking so much. She looked so happy when she reached home but she felt bad that she had become confused on her walk.

I bring that all up to say this (I do have a point). That, there are many things that we each don't understand but there are MANY things that we DO understand. The dumbest question is the one not asked. I tell myself that all the time when I feel like I have a dumb question for Katia's doctors. Okay, back to the point. We each are like a part of the body and as a whole, we make up the world. Without each of us, the world would genuinely be missing a piece. We all have a reason for being on this earth and a certain time to fulfill that reason. It isn't happiness so much that we seek but fulfillment in the long run. That is so true. Life with meaning is worth more than acres of gold. Life with friendships is worth more than all the money in the world.

I pray that this year will bring fulfillment to many and hope to all. I pray that even through the roughest of times, when there seems to be no answer to our problems, that we will have friends to hold our hands and let us know they are there with us. Because I KNOW that has been a key part of us getting through 2004.

I look forward to spending another year with you:)

Katia says HIYA and she is eagerly awaiting "that ball dropping with all the lights". I am not sure how long we will be able to stay up tonight or how long she will stay awake but one way or the other (it can be recorded) she will see the ball drop, at home:) That is a HUGE answer to prayer!!!

God bless each of you and have a very Happy New Year!!






Love, Tracy



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December 30, 2004 8:34 PM

Good evening:)

I know I am late or just early for tomorrow:)

Today has been nice. One of my cousins that lives in Alabama came by to see us with her family. It was so nice to see them!

Katia has had a good day. She still doesn't have much energy and her eyes are red around the edges. Even though she sleeps all night and takes a nap now. I just feel like there is something causing this and we can't figure out the source. Her right eye is a bit puffy where the tumor is so I am not sure if there is blood forming in the tumor again or what. She is due for an eye visit and a total eye exam so hopefully that will see if everything is okay.

I went around to a few sites today and I enjoy going to the guestbooks and reading the nice messages left on other pages. I know how uplifting that is. There are a lot of families that need prayer and I am hoping that the year 2005 brings more hope to more families.

I look at the news on TV about this awful Tsunami and that is just so much devastation that it is hard to comprehend. I had to look up some information just to understand how this would happen but it is just so hard to grasp the number of people that are affected by this through death and the after effects of disease and homelessness. Sharayah and Tatiana are old enough to watch the news and understand the devastation but I think about younger kids who really don't understand or those that don't really need to see the news because of the fear that this could happen to them. I found a website that explains Tsunamis to Kids and thought it was a good explination.

Well, it is time to get Katia her medicines and get her ready for bed. She is eager to take her medicines because she knows it is that time and just likes to get it done and out of the way. She has adapted to them so there isn't any that she protest to really. She just sighs and takes them all and then she is proud when she is done. Oh, by the way, she ate all her dinner tonight. It wasn't a lot but she was proud of herself. It was just a few spoons of spaghetti but it is a start:)

I will be back tomorrow, the last day of 2004, and let you know how we will be ringing in the new year:) I am sure it will be well before midnight though. Myron works at 3:30AM the next day and the rest of us wind down earlier too.

Thanks for checking in on us and have a safe and happy New Years Eve!!!

Love, Tracy







December 29, 2004 3:26 PM

Hiya:)

Well, it seems little Ms. Katia is feeling better. Her blood pressures are up a pinch so I think that may be helping her. She is playing with Sharayah and Tatiana right now and she has been walking around all day so that is a good sign. When she doesn't feel well, she just flops on the sofa or goes to bed or she is really quiet.

I have been going through a lot of the digital pictures I have taken over the last 2 years and there has been so many changes with Katia. She is beginning to look like she did right before she relapsed now. Her face is shrinking, her hair is growing but she weighs about 4 pounds less. I used to get pictures printed as I would go along with my digital camera, not every picture but a good amount to keep the photo albums going. I haven't done that for over 2 years! Can you imagine? Now, I veiw everything on the computer by disc. It is amazing how times have changed, isn't it? I still LOVE my albums and I have the ones of me when I was first born all the way through to about 2 years ago. I have a LOT of albums!! Since I have 3 girls, it is nice to be able to see what I was like at their ages:)

Well, I actually getting some work done here so I better get back to it. I just wanted to update since I was right here.

Isn't that picture cute at the top of the page? I know it is blurry but it is cute. My camera has been acting up but I couldn't resist that little picture:)

Love, Tracy






December 28, 2004 5:55 PM

First, I want to say thank you!!! Thank you for your prayers and your guestbook entries. They really do uplift us when we need to be uplifted.

Katia is doing okay. Her blood pressures are still low (like around 83/43 for those of you who are curious) so we are keeping an eye on her and just checking it every few hours. She is still sluggish but she has eaten a bit more today than the last few days. She ASK for food a lot but then takes a bite and says she is full or feels bad.

I just changed all the pictures which wasn't too easy as Katia is not easy to get a picture of these days. Normally she is so bubbly and happy. She will be that way again very soon though. I can just feel it:)

I want to send out a big thankyou for the gifts Katia and the girls received and even Myron and myself. This Christmas was very special in so many ways but when you have wonderful friends, every day is so special. I couldn't imagine facing all of this alone. I will never have to.

I did have some time with just Sharayah and Tatiana yesterday which was nice. They don't get that much. We went and used some gift cards they had gotten and I had gotten. Today, Myron and I got out for about an hour to get lunch and exchange some stuff. That was totally out of the ordinary and very nice to actually be out together. My dad is in town and the girls are out of school so we have a little bit of flexibility if Katia is amused and doing well.

We aren't due back to clinic until Monday and I really hope by then, Katia is back to being her happy little self or at least feeling a lot better. All her sentences start with either, "When I feel better..." or "When I get my broviac out..." She does lead a much different life than a typical 4 year old but we are grateful for each day with Katia. This time last year, it was hard to imagine being this far out of transplant. Still, we don't look too far ahead and try to just live day to day and thank God for each day as it comes and thank God for each day as it ends.

She wants me to read her a book she received about a Ginger Bread Man so I am going to get to that. The weather here is PERFECT today so I am going to get out to the back porch and read to her.

Before I close, I have a prayer request for a friend of ours with Lymphoma. His name is Jerry. He has a wonderful wife, Carol and 6 year old triplets (2 girls and one boy). I just ask that you pray for him. I will share more of his story tomorrow and then add him to the update list and keep an update of his progress. These people are very special to us and have done so much to raise awareness to Katia's drives. Now they are facing their own need for a Marrow Match to save his life.

Love, Tracy


*****

December 27, 2004 7:27 PM
FROM MYRON

Hello everyone!

I hope that everyone had a memerable Christmas day!
I am looking forward with anticipation to the new year, I pray that for all of us it will bring many great things.

I certainly enjoyed Christmas with the family! I do however miss my parents and brothers. As I drive by different homes and see their driveways filled with cars it makes me think about how great it is to have family and friends nearby.

However, I am recharged to know that we do have family and friends who are always with us in sprit, thoughts and prayers all the time. Please always remember how you make this journey of ours so much easier, by being who you are.

Thank you for being such a wonderful part of making Christmas and every day special for Katia and family. (notice that I will never get tired of saying thank you)

I am on babysitting duty today, as Tracy ventures out with Sharayah and Tatiana. The older girls really enjoy one on one time with mom and Daddy bug really enjoys playing time with babybug.

She still doesnt feel too well, but we sure make the best of time together, but it doesnt take long before she is asleep on my arm, she seem so tired lately.

What a precious gift our children are, aren't they?
It is amazing how our life becomes totally about them, yet it doesn't bother us at all.

Katia's sweetness always reminds me of how lucky I am, and I am so thankful for each and every second we share with her.

Well, I just wanted to say hello, I don't say it as often as I would like, but know that I certainly keep track of all of your entries, and my prayer this season is that all of you are safe, and making the best out of each day God allows us.
Chat at ya later,

Luv, Myron











December 27, 2004 3:08 PM

WBC 6.3
HGB 9.9
PLT 223
ANC 2800



We are back:)
Blood pressures are too low so she is now going to be off her blood pressure medicines. Her WBC has gone back up? Not sure why but it is not too too high.

She was happy to head back home and so were we:)

Hopefully her blood pressure will come back up and she will feel better soon.

Well, she is hungry:)

Love, Tracy






December 27, 2004 12:44 PM
Day 326 Post Transplant

We are about to take Katia into clinic but I wanted to update before I left.

Katia did get up and eat a pancake, take her medicines and walk around a bit but she is a little more pale than yesterday and has little to no energy so we need to take her in for labs.

I just hate to see her feeling so puny. She really wants to feel better. She sleeps well all night (getting up a few times to potty or drink) so she shouldn't lack energy. I am thinking her hemoglobin has gone down even further and I am not sure why it would be. I am very curious to see these labs but I am hoping it will let us know what to do to pick her energy and counts back up some.

So, just please pray for little Katia that she will get through this and feel better quickly.

Love, Tracy






December 26, 2004 1:54 PM

I just realized Katia turns 5 years old in one month:) "A whole Hand" as she says.

Please pray for Katia as she just isn't feeling well. She has little burst of energy but for the most part she doesn't want to play, walk around or do much of anything but lay on the bed or sofa. She doesn't want to eat. She has taken her medicines today and she is drinking on and off but she gets me worried. I feel like a "Professional Worry Wart".

I will get on here later and update if anything changes but for now, I just ask for your prayers that she will get back her energy.

Her hemoglobin had dropped so I am not sure if it is still going down and causing this or if there is something else causing this.

I called the doctor and may take her in tomorrow for labs to see where her blood counts are at this time.

Love, Tracy







December 25, 2004 1:18 PM

MERRY CHRISTMAS EVERYBODY!!!
FROM THE SOLOMONS
ALL HOME TOGETHER!!!!


Well Myron is at work but he is headed home soon:) Katia is having a good day! She isn't feeling too well but she has opened up her presents and is happy to be home:)

I wish Myron could be here this morning but work is very important so we will see him in the early afternoon. We saved a few gifts for when he gets here:)

I will post pictures tomorrow or Monday so you can see Ms. Katia. She isn't doing well for pictures so her eyes are always closed or she is looking away but she is happy in her heart:)

She did get her Barbie Kitchen!!! She is very very very happy!!! Thank you to everyone for the gifts she received in the mail. She had a lot of fun opening gifts and I am just so thankful she is here and feeling well to open them:) We all know how important this Christmas is and we cherish this so much. We never know what each day holds for Katia so each day is a miracle with her. We thank God for each and everyday.

I can't help but to think of the families that have lost children or their children are actually growing their little angel wings through this holiday. My heart goes out to them and my prayers are always with them. It brings tears to my eyes to type that as those words are filled with so much emotion and memories.

I love you guys!

Love, Tracy





2004 / 2005 OUR MESSAGE TO YOU:)**UPDATES BELOW....

We have put a lot of thought into our friends and the friendships we have formed since Katia's diagnosis. A lot of people tend to actually lose friends when their child is diagnosed. They find that people don't know how to act or what to say so they just stop coming around. We are quite the opposite. Our old friends had a lot to do with Katia's drives and raising awareness that she needed a match. They helped cook for my family while I was gone. Like I had said, we were new to our neighborhood when Katia relapsed and this neighborhood just embraced Katia and our family. I don't feel at all like a stranger here. I feel like we have lived here forever. This will be our 2nd Christmas in this house but last year, Christmas moved to the hospital. Last year, I was just grateful for the fact Katia had achieved remission and by Christmas, we knew she had a match. I wasn't (none of us were) feeling sorry for ourselves because we knew things could have been or could still get a lot worse. Last Christmas, we knew something was going wrong with her lungs and were already looking into the lung surgery and the fact we may have had to fly to New York to have the surgery. Last year Katia was bald and beautiful!! Last year, Katia wasn't eating anything. Last year, Sharayah and Tatiana were half way through a school year their mom was missing and would miss all the way to the end of the school year. BUT, last year is about to be behind us. Do I want to just toss it out the window? NO! Last year, we made so many friends and we met so many wonderful families. Last year, we started The Katia Solomon Fund and have already been able to help others-even though it is just new. Last year, Tampa's media embraced the story of Katia and a LOT of people learned what Bone Marrow Transplants were and that they could help with a simple blood test. Last year, we found the match to save Katia's life. Last year, we left the hospital we had entered the year before (August 2003-April 2003) to go over to the wonderful Ronald McDonald House to spend 3 more months of healing time for Katia. We made wonderful friends there. Last year we found a lot of love and concern and the abundant desire to help where we didn't even know it existed. Now we have many friends for life.

Last year many children finished their chemo treatments or recovered from bone marrow transplants or organ transplants and they are doing wonderfully. Also, last year, many people lost this battle that we had grown to love and care about.

What is in store for next year (2005)? Well I don't know. I know we are going to continue, as best we can, moving along with KSF and next year a lot more research will be done to better treatments and find a cure for cancer. Next year, Katia will turn 5!!! As she says, "A whole hand!" Next year the Bucs may not win the superbowl, but the plan is for our family to be home and watch the superbowl together!! No matter who wins, we have victory. Thank you for sharing this with us.

Love, Tracy


************
Message from Myron to each of you 12/22/04
Greetings Everyone!

It’s that time a year again!

That wonderful season of sharing and caring, a magical time in which the world becomes a sweeter place.

I love the Holiday Season! To me it represents a season of hopes and dreams, a time in which we all strive to be better people.

I am thankful for the true meaning of Christmas, for without that perfect gift of God on that magical silent night many years ago there truly would be no hope.

Words cannot express the Joy I feel this year in having our little lady bug miracle, Katia, to continue to inspire us and to spread the little ray of sunshine that she is.

This time last year we were just given the news that her potential life saving match was found, giving us a chance. That chance has taken us on a journey of faith, a long road of uncertainty filled with dreadful fears but at the same time compelling us to be so much better as individuals and as a family.

I am blown away each time I think of the wonderful people who have become a part of our lives. Our family has experienced some extreme lows physically, emotionally and financially these past few years, but through it all we have been blessed in a way that I cannot describe.

I was telling someone the other day that I felt like George Bailey from “A Wonderful Life”, “The richest man in town” truly a man is rich when he has friends.

You all have proven to be just that, True Friends. The sweet thoughts and comments that you write to us bring us courage and motivate us to stay focused. Your constant prayers bring a strength for above that keeps us firm and resolved to continue, and to along the way share this love and hope, on the wings of a ladybug.

I cannot say thank you enough for the gifts and the sacrifices you have made by sharing what you have with our family this year, this holiday season. God bless you.

Today Katia is back in the hospital, for a few days only we hope, again we fight yet another little battle. We hope that she will be home on Christmas morning, but in the meanwhile we will just pray that she gets whatever treatment she needs to get her strong again.

I hope to visit with some of the families currently interned in the hospital, and hopefully encourage them to hold on strong to each other and to continue to pray for miracles because they do happen.

Well, I have rambled on enough today, I hope Tracy can fit it all on the page!

However, let me again say how much we love and appreciate all of you and let me wish you all a very Merry Christmas and a happy holiday season.

Wishing you and yours a blessed and prosperous New Year. May the year 2005 bring you all lots of love, happiness and plenty of good health.



God bless you all, be safe.

Luv, Myron






******

December 24, 2004 1:11 PM
Day 323 Post Transplant

Merry Christmas Eve!!!

I am so so so so so excited we are home!!! Katia is feeling so much better right now that I can only say that is a miracle!! She went from feeling so bad to feeling good and giggling. We are going to bake cookies this evening for Santa and I am so excited to be able to do that!

Myron works today and tomorrow so we will celebrate in the evenings, which is fine. We will let Katia open some gifts tonight and tomorrow evening. A few things will have to be put together. Yes, she has a Barbie Kitchen:) She doesn't know it yet but some friends got her 2 Barbie Kichens. I don't know what the real differences are but one can go in our kitchen so she can cook with me and the other will be for the back porch. She is going to be SO happy!!!!!! Myron also found a GingerBread House? Not sure what it is but I think it is a kit to put together. I want to thank each of you for sending Katia gifts and gifts to the girls and our family. Christmas really rushed up on us this year but I really think it is going to just be super!!!!

We are so thankful to just be home!

Do I sound happy or what? You can't slap the smile off my face or Myron's face.

Well, I have quite a bit to do today to get things ready. The girls have Katia occupied right now so I am free:)

Love, Tracy







December 23, 2004 6:42 PM

From the desk of Tracy Solomon:)

Yes, we are home!!! Katia is so happy! She had a dose of antibiotic to stay in her system for 24 hours and they believe that will be enough. She had no fevers anymore so they let us go.

I pray she comes home and stays home and I do believe she will.

I didn't let Katia know we were going home until we were about 10 minutes before leaving so her hopes didn't get bursted for anything.

Oh, I am sooooooooooooo happy to be home!!! I can't believe it. I think you probably know how happy we all are!

The first thing Katia wanted to do was see the Christmas tree and then make this smiley face magnet we have on the fridge sing. She is so happy! Myron is making her spaghetti right now so she is chattering up a storm.

She is still warmer than normal but no feverish.

Well, I am jabbering because I am happy and I didn't want to make you wait before I let you know we were home. I know there were so many prayers for this to happen!

I better go unpack. Love, Tracy







December 23, 2004 3:01 PM

No fevers.....

We are about to try a new antibiotic that will stay in her system for 24 hours. Hopefully she will stay fever free and not have a reaction to this antibiotic like the other one. She is just laying around and taking it easy watching TV. She really really wants to leave and go home. She doesn't want to sleep here again.

I will keep you posted.

Love, Tracy







December 23, 2004 11:21AM
Update #2 today...

WBC 5.33 (down from the 12.3 yesterday)
HGB 8.7 (still dropping)
PLT 223 (good)

Well, her counts are improving. The high WBC count was due to whatever is causing her to be sick so it is headed back in the right direction. We are making a change to her antibiotics to give her one that will last for 24 hours instead of 8 hours. Hopefully this will help her get home.

I just wanted to let you know those counts. I will be back:)

Love, Tracy






December 23, 2004 10:21AM
Day 322 Post Transplant:)

Not sure on counts yet today but I wanted to share with you that we have no fevers! Katia has been fever free since yesterday afternoon. She is warmer than normal for her so I am not sure if the antibiotics are masking something but we will see.

She still has a rash, faint, that is coming and going but I really think that is from the first antibiotic she received in ER and that has been discontinued. When the rash comes back, it is lighter each time.

Right now Katia is eating waffle sticks and watching TV whereas yesterday, she slept the whole day. I do believe she really needed the IV fluids also.

So, we will see. I wanted to share this with you early as I know so many are praying for that fever to go away:)

It is working!

Love, Tracy






December 22, 2004 6:45PM

Nothing much new going on here. The fevers are still here and there are no results from any of the tests yet. They have to wait a few days to see if anything grows.

Katia slept almost all day but is finally awake here. She isn't eating but she is drinking decently and taking her medicines.

Our idea about Christmas is we will just celebrate it "when" we get home. Katia really doesn't know what day it is so I think is just more appointment for her to have "Christmas at Home".

I still am very hopeful to be out of here before that but I do want to make sure Katia is better and doesn't end up right back in her a day or so after she leaves. That is most important.

Well, I will be back with any more news. Thank you so much for all of your prayers and messages. There is a lot of love in that guestbook!

Love, Tracy






December 22, 2004 9:07 AM

(Message from Myron above to each of you)


WBC 12.3
HGB 9.3
PLT 213
ANC 9801

Last night we rushed Katia to the hospital. Her fever shot up to 38.9 pretty suddenly and then just hung around 38.7-38.9 the whole way here. We spent about 3 hours in the ER and then finally arrived up on 2SW. All of this was from 11pm-5am. Katia is sleeping as I type this. As you can see her counts were totally out of whack with the WBC count being a huge concern to me. Labs were repeated not too long ago and now we have,

WBC 9.23
HGB 8.8
PLT 222
ANC ???

Although the WBC has come down, it is still too high and it shows something is definetly going on with Katia that her body is trying to respond to. She has fever now as I type. Her hemoglobin is a real surprise to me to see that dropping but hopefully we find out very soon what is causing this and it can be treated.

We did chest x-rays last night and they appear to be clear. They did blood, urine, nose cultures and that is all pending.

How long will we be here? Good question but as I looked around the halls at the Christmas decorations, I had to just let out a sigh and I just felt really bad. I hoped I would see a Katia feeling much better this morning (she has started on antibiotics) but that isn't what I found. She is exausted and burning up still.

Please please pray this is nothing more serious then a viral infection or something. I am sure they will do more testing today due to some leg pain and foot pain she is having and the fact of her labs being so different and not in a good direction.

She definitely isn't happy. All of us are upset.

I will be back later to update you on what is going on throughout the day. Just please pray. Love,Tracy




December 21, 2004 3:17 PM

Hello Friends:)

First, I ask that you pray for Katia. She really isn't feeling well at all and has been running a temperature higher than her normal. She is usually between (these are celcius numbers) 35.7-36.3. Today is is between 37.1 and 37.6. It is kind of going up and down but if it gets to 38.0 she has an automatic 3 day stay at the hospital. She knows this and is just really not happy about "being warm" so pray it doesn't go up. I would really hate for that to happen. We had done a few radio spots thanking the Tampa Bay area for all they did when she was looking for a match and also letting them know how happy we were to have her home during this holiday season of 2004. I really want that to be the case. This could be a reaction to the chemo yesterday (that is what we hope) or it could be infection or something (we don't want that).

Right now, she is on bedrest and a clear fluid diet. She seems to be feeling a bit better but the temperatures are still bouncing around.

For those of you in the local area, you can see a Christmas Greeting from our family on Bay News 9 en espanol which will be running on all Christmas Eve Day. We also took a nice family photo today so I am going to post that here soon as I get it loaded in. It is extremely difficult to get a photo of Katia these days because, for some reason, the flash is bothering her eyes more than ever so we have to work without a flash in the house.

Well, let me wind this up so I can get the new picture on here:)

Please pray for all of the families, children, adults and anyone going through trying times right now. This is a time of year when things seem to bother even more when they don't go right or as planned. This is the time of year when we want our friends and family to be the most healthy and the most happy.

Love, Tracy






December 20, 2004 5:36PM

WBC 7.6
HGB 10.8
PLT 230
ANC 4000

Well, we are home:) The counts are a little up and down but the platelets are great! I think the WBC is out of whack and high due to her cold but that is okay. We will see what they are next visit.

Katia did really well today and so far everything looks good. Her blood pressures dropped low afterwards where it was like 60?/20?. I forget the exacts but the lower number in the 20's doesn't sound good. I think it was just she had been so long without a drink that she needed fluids. So, she got them and her blood pressure finally got that bottom number up into the 40's and 50's. So we came home:)

She didn't have the bone marrow aspirate. They want to do it next spinal so it is closer to her 1 year anniversary of her transplant. That makes sense:)

She had her spinal fluid checked and spinal chemo put in. She did fine with it. No nausea or anything:) She may get queasy later on tonight but she did fine all day and we were done by around 4PM.

I want to thank all of you for your prayers. I have a little friend (silent prayer request) who is needing your prayers right now. She is not doing too well and has really begun a fight for life suddenly. I will share more information with you when I can but I just want to ask you to pray for this child.

Being at the hospital today made me all the more happy we will be home this Christmas!!!

Well, I am on hold right now on the phone (have been for 30 minutes) and I wanted to jump on here and update. We are having some insurance issues that NEED to get cleared up so I wanted to call right away. I think they just leave you on hold sometimes so that you will be so happy when they do answer.

Again, thank you for your prayers and be safe out there shopping and visiting family:)

Love, Tracy







December 19, 2004 10:18 PM

I wasn't really planning on updating today just because I have been following a few kids very closely and it isn't easy to do that when things are looking very poorly for them. For so many of you that have been following Hayley, she is now an angel in heaven. I really have a lot of thoughts on this but I will sum it up by saying, Hayley was in great comfort her last few days which isn't a normal thing when kids are passing away from cancer and disease. It was as though God put His hand on her to comfort her and her parents. Although, she is no longer in pain and she is in heaven, I can't say that is the better place. As a parent, especially a parent with a child fighting for her life, I have to say that for us, the best place for our children is right with us, healthy, running and playing and just not having to be sick. I know that God has an intended plan for all of us and He knows the reason behind everything but as a human and a parent, that is not easy to see many times. My heart just breaks for them as they have spent these last weeks watching Hayley slowly slip away.

Another child fighting each and every moment is Trey. He has fought such a hard battle and now his parents just have nothing they can do but provide him comfort and love and know his days are minimal with them. This just really does get to me and a lot of people.

Yes, I choose to follow these children in their progress and a lot of times through those last days. My heart is in this. This is not by choice but it is just part of me now. I used to sit down and watch the St. Jude Telethons and even the All Children's Telethons for Katia's hospital years ago but now they mean so much more. I see our family, our life and my daughter's struggle to live and just grow up to be happy and healthy. We don't strive for "normal" just healthy:)

Everyone has burdens in their lives. Some are life threatening, others are emotional issues, financial issues, family issues and the list goes on and on. I see that a lot more than I used to. I went to Walmart tonight for groceries and as I looked around, I saw kids in the buggies pointing out the cereal they want or eating chips. I saw kids running around and of course you see a lot of parents at their wits end with some of the kids. But the fact is, that is the way it should be. No, I am not saying to go to Walmart and let your child run wild with cookies in their hand but when you see one of these kids, move out of the way, and then smile and know that is what kids are supposed to be doing. They should be having fun, munching on snacks and being with their parents.

Tomorrow we go in for Katia's BIG checkup and her spinal chemo. We will see her remission status, the percentage of donor cells in her marrow, the clarity and disease free status of her spinal fluid and give her another injection of chemo to up her chances at staying in remission. My plans for Katia are endless!! I see her doing many great things and I see her with a lot of love to show and give. I have said it many times before but in so many ways, Katia is my little hero. She knows her fight. She may not know it like a 15 year old or an adult but she knows that what she is doing is to keep her leukemia away, keep her from going bald and being in the hospital and keep her from feeling sick to her belly. She knows it helps keep away headaches and her eye hurting. These are the things she doesn't want. She doesn't understand the threat against her life and I don't want her to. I want Katia to fight to live, not just fight to not die. Katia is going to beat this and someday, she is going to be doing all the speaking for The Katia Solomon Foundation and she is going to say, "See, someone helped saved my life and now you can help save someone else's life. Someone's son or daughter, mom or dad, aunt or uncle or a friend." I see that for Katia:)

Love, Tracy


******






December 18, 2004 11:09 AM

Good morning;)

Prayers are doing the job! Katia's cough seems sooooo much better today. Although it is still there, the gagging isn't there today. I know it is going to be very hard for Katia to kick this cold right now but good days are very loved! She is happier today:)

Monday, she goes into the hospital again (only for the day) for her spinal chemo, bone marrow aspiration, etc. So, we will again be checking the status of her remission. We are praying for no leukemia cells, all donor cells (none of Katia's old cells), clear spinal fluid with no leukemia, etc. The plan is to continue this spinal chemo once a month for the next 5 to 6 months depending. It does knock down her counts some but with this cold, it is hard to really see because the cold makes her WBC count higher. I would love to be able to see her TRUE counts right now but this cold seems to like Katia's company.

Well, there is a lot that needs to be done today and the day is slowly going to get away from me.

Thank you so much for coming by and checking on Katia even though this is a busy weekend for most, shopping and getting last minute things done for Christmas. I know a lot of you have family in town so give them an extra hug and tell them the Ladybug and her family send them Christmas Greetings, Holiday wishes and the hope for a fabulous New Year!

Love, Tracy





December 17, 2004 10:48 AM

Good morning:)

First, I want to ask you for your prayers. Katia's cough is just really getting very persistant and causing her to have to catch her breath at times. Of course, if it gets much worse, she will need to go in for x-rays. We are already scheduled to go in Monday for her next spinal chemo so we will need to make sure she is healthy enough to get that chemo or it may have to be delayed. Right now she is sitting on my bed, watching TV and playing but she keeps on coughing and coughing. So, I know how much prayers definitely help and I wanted to ask for your prayers:)

Secondly, please see the prayer request above as there are constant changes going on it seems. There are just so many kids not doing well right now and going through different things that I find myself updating throughout the day.

Christina G. is one of those back in the hospital right now for lung problems so please keep her in your prayers that this will clear up and let her get back home soon. She is about 15 months post-transplant and has been doing well.

I have been getting quite a few emails about Katia and Christmas and ideas for things she would like. We appreciate this so much and I am sure Katia does too. We ALL want Katia and her sisters to have a wonderful Christmas, together, at home. That is our plans. Probably the best thing, at this time, is gift cards. Either grocery places or Walmart. That keeps things running smoothly in the home and allows us to get the things needed for the family at this time. First and foremost, we just always ask that you keep our family in your prayers. I am just continuously praying that we be able to REMAIN home and that we will be able to spend this holiday together with a happy and healthy Katia. With only a little over a week till Christmas, I am praying this cough does not progress to anything requiring hospitalization or cause her a great deal of discomfort. She is very very mad at her cough and she voices this throughout the day. She told me this is a new cough, not the old cough. That one went away and now this one is new. It is amazing to me how she puts things together but it also shows me that she has an extremely positive little personality.

Well, I better cut this short. She is wanting me to make her a tortilla with mustard and cheese:) YUMMY! Whatever she will eat is fine with me.

Love, Tracy







A CHILD’S WISH

Three years ago, a little boy and his grandmother came to see Santa at Mayfair Mall in Wisconsin.
The child climbed up on his lap, holding a picture of a little girl. "Who is this?" asked Santa, smiling. "Your friend? Your sister?"
"Yes, Santa," he replied. "My sister, Sarah, who is very sick," he said sadly.
Santa glanced over at the grandmother who was waiting nearby, and saw her dabbing her eyes with a tissue.
"She wanted to come with me to see you, oh, so very much, Santa!" the child exclaimed. "She misses you," he added softly. Santa tried to be cheerful and encouraged a smile to the boy's face, asking him what he wanted Santa to bring him for Christmas.
When they finished their visit, the Grandmother came over to help the child off his lap, and started to say something to Santa, but halted.
"What is it?" Santa asked warmly. "Well, I know it's really too much to ask you, Santa, but ...." the old woman began, shooing her grandson over to one of Santa's elves to collect the little gift which Santa gave all his young visitors. "The girl in the photograph ... my granddaughter. Well, you see ... she has leukemia and isn't expected to make it even through the holidays," she said through tear-filled eyes. "Is there any way, Santa ... any possible way that you could come see Sarah? That's all she's asked for, for Christmas, is to see Santa."

Santa blinked and swallowed hard and told the woman to leave information with his elves as to where Sarah was, and he would see what he could do. Santa thought of little else the rest of that afternoon. He knew what he had to do. "What if it were MY child lying in that hospital bed, dying," he thought with a sinking heart, "this is the least I can do."

When Santa finished visiting with all the boys and girls that evening, he retrieved from his helper the name of the hospital where Sarah was staying. He asked the assistant location manager how to get to Children's Hospital. "Why?" Rick asked, with a puzzled look on his face. Santa relayed to him the conversation with Sarah's grandmother earlier that day. "C'mon .... I'll take you there," Rick said softly.
Rick drove them to the hospital and came inside with Santa. They found out which room Sarah was in. A pale Rick said he would wait out in the hall. Santa quietly peeked into the room through the half-closed door and saw little Sarah on the bed. The room was full of what appeared to be her family; there was the Grandmother and the girl's brother he had met earlier that day. A woman whom he guessed was Sarah's mother stood by the bed, gently pushing Sarah's thin hair off her forehead. And another woman who he discovered later was Sarah's aunt, sat in a chair near the bed with weary, sad look on her face. They were talking quietly, and Santa could sense the warmth and closeness of the family, and their love and concern for Sarah.

Taking a deep breath, and forcing a smile on his face, Santa entered the room, bellowing a hearty, "Ho, ho, ho!" "Santa!" shrieked little Sarah weakly, as she tried to escape her bed to run to him, IV tubes in tact. Santa rushed to her side and gave her a warm hug. A child the tender age of his own son -- 9 years old -- gazed up at him with wonder and excitement. Her skin was pale and her short tresses bore telltale bald patches from the effects of chemotherapy. But all he saw when he looked at her was a pair of huge, blue eyes. His heart melted, and he had to force himself to choke back tears. Though his eyes were riveted upon Sarah's face, he could hear the gasps and quiet sobbing of the women in the room. As he and Sarah began talking, the family crept quietly to the bedside one by one, squeezing Santa's shoulder or his hand gratefully, whispering "thank you" as they gazed sincerely at him with shining eyes. Santa and Sarah talked and talked, and she told him excitedly all the toys she wanted for Christmas, assuring him she'd been a very good girl that year. As their time together dwindled, Santa felt led in his spirit to pray for Sarah, and asked for permission from the girl's mother. She nodded in agreement and the entire family circled around Sarah's bed, holding hands. Santa looked intensely at Sarah and asked her if she believed in angels. "Oh, yes, Santa ... I do!" she exclaimed. "Well, I'm going to ask that angels watch over you," he said. Laying one hand on the child's head, Santa closed his eyes and prayed. He asked that God touch little Sarah, and heal her body from this disease. He asked that angels minister to her, watch and keep her. And when he finished praying, still with eyes closed, he started singing softly, "Silent Night, Holy Night .... all is calm, all is bright." The family joined in, still holding hands, smiling at Sarah, and crying tears of hope, tears of joy for this moment, as Sarah beamed at them all. When the song ended, Santa sat on the side of the bed again and held Sarah's frail, small hands in his own. "Now, Sarah," he said authoritatively, "you have a job to do, and that is to concentrate on getting well. I want you to have fun playing with your friends this summer, and I expect to see you at my house at Mayfair Mall this time next year!" He knew it was risky proclaiming that, to this little girl who had terminal cancer, but he "had" to. He had to give her the greatest gift he could -- not dolls or games or toys -- but the gift of HOPE. "Yes, Santa!" Sarah exclaimed, her eyes bright. He leaned down and kissed her on the forehead and left the room.

Out in the hall, the minute Santa's eyes met Rick's, a look passed between them and they wept unashamed. Sarah's mother and grandmother slipped out of the room quickly and rushed to Santa's side to thank him.
"My only child is the same age as Sarah," he explained quietly. "This is the least I could do." They nodded with understanding and hugged him.

One year later, Santa Mark was again back on the set in Milwaukee for his six-week, seasonal job which he so loves to do. Several weeks went by and then one day a child came up to sit on his lap. "Hi, Santa!
Remember me?!"
"Of course, I do," Santa proclaimed (as he always does), smiling down at her.
After all, the secret to being a "good" Santa is to always make each child feel as if they are the "only" child in the world at that moment.
"You came to see me in the hospital last year!" Santa's jaw dropped.
Tears immediately sprang in his eyes, and he grabbed this little miracle and held her to his chest. "Sarah!" he exclaimed. He scarcely recognized her, for her hair was long and silky and her cheeks were rosy -- much different from the little girl he had visited just a year before. He looked over and saw Sarah's mother and grandmother in the sidelines smiling and waving and wiping their eyes.

That was the best Christmas ever for Santa Claus. He had witnessed --and been blessed to be instrumental in bringing about -- this miracle of hope. This precious little child was healed. Cancer-free. Alive and well. He silently looked up to Heaven and humbly whispered, "Thank you, Father. 'Tis a very, Merry Christmas!









December 16, 2004 6:00 PM

Good evening:)

Well, the bracelets are done for now. The auction for the bracelets is done BUT if you would like order one, you can email me and I will tell you how. They will be $10 each with $2 shipping and handling and mailed out quickly. Thank you to all of you who are now part of the LADYBUG CLUB:) I like seeing that in the guestbook:)

Well, now onto Ms. Katia. Her cold has definitely begun to improve it seems. It is not gone but she seems to be sniffing and coughing less so I think we are on our way to the end of this cold. It seems to be leaving our household:) It is not welcome to return!

Katia has had a busy day and is pretty high strung right now. I like to sit her down and let her go through other Caringbridge sites and she recognizes a lot of the kids. It is her "Mommy and Me Time" as we have done this for so long. We don't get to check on as many people as we used to but she really loves things that are routine. Right now, she loves all the Christmas decorations on the websites:)

As far my doctor appointment, it went well. This was a new doctor to me and I really liked him. He had a look at the films and did an exam and agrees that it seems to be fibrosystic breast. He went over the symptoms and my other records and wants to send me to another doctor but is basically saying it seems to be fibromyalgia. I kind of suspected that because my sister has it but our symptoms are totally the same. So, I will follow up with another doctor. At least there are no biopsies to be done or any big procedures because I really couldn't do that right now. Although I know our health is important, basically Myron and I concentrate on our girls' health. I usually can follow my "instincts" and know if it is something serious or not. Anyway, it explains a lot to me if they do end up diagnosing that and it will actually ease my mind. It is funny how a lot of times, just having an answer makes you feel better. When you have all these different concerns that don't seem to go together and then it gets peaced together, it is actually a relief.

One thing that was funny is he said I should try to stay away from stress:) I thought that was a great idea!!! Basically, anyone knows that is impossible. I do try to have down time each day so I can kind of rejuvinate my mind and "chill" but that is not always possible. Like I said, not only am I a control freak but I also like everything clean and the routine of doing things actually helps me relax moreso than just not doing them. Like vacuuming, just can't skip that for a day. I have tried and I have given up. It just has to be done:) Sharayah says it is O.C.D. Whatever it is, the house stays clean (for the most part).

Well, tomorrow there are no appointments and I really am going to try to have a quiet day with Katia. She gets so highstrung when I seem to be going and going and don't have the chance to just stop and have our time together. What she hasn't realized is a lot of that "together time" is actually her PHYSICAL THERAPY so she WILL get that time. I really do enjoy spending time playing with her though. I guess after having 3 daughters, I am used to the pretend grocery shopping, cooking, cleaning, etc. They do turn out to be pretty good helpers around the house and in the kitchen:)

Well speaking of which, I should go finish dinner:)

Love, Tracy






December 15, 2004 7:55 AM

Good morning:) It is COLD here!!! It certainly doesn't feel like Florida!

First, let me thank each of you for your prayers. I actually feel very uplifted today adn that is a great feeling. I read through the guestbook yesterday, as the day went on and it is amazing how much strength can be gathered by others reaching out and letting you know you are in their prayers. I wish that for all the world. Love and prayers is just so much more than a lot of people realize. Wouldn't it be nice if the world started each day with a prayer? I have learned quite a bit these last few days about that. I have always been one to pray and I have most definitely learned to hand things over to God when it comes to many things in my life but over the last few days, I have had to let myself learn that I can't really stress over things I just can't control. I have to practice that a lot more (I am kind of a control freak) but I have definitely learned quite a bit. So, I am back and I do feel better. Thank you:)

We actually have a houseguest for the next 2 months. My dad came in. My dad lives in Honduras as you may remember and like many people, he comes to Florida for a few months this time of year, EXCEPT, he is coming from nice warm weather. Anyway, it is nice to have him here for the holidays. He usually leaves right near the beginning of February.

Myron and I had quite a busy day yesterday but we were able to reflect on the last 17 years and well, we each just know we are so happy to have gone through so much together. I have literally had him in my life more than not. As you know we met were we were 16 and we are each now 35 so we know eachother quite well. We adore our 3 girls and that is what makes us get up each day and keep putting "one foot in front of the next" as a teacher of mine used to say.

Katia's cold is still about the same but I think she is getting used to being sick. She walks around all day with a Kleenex (or a few Kleenex) and she does try to get an extra nap here and there. That is not normal for Katia. From the time she gets up, she is up until late at night. So, for her to take a nap, she is up to something or doesn't feel well.

For those of you who have already ordered The Ladybug and the Dragon book, you should be receiving your book if you haven't already. I know you have been waiting for those:) Katia is so happy to have her very own book! She is quite proud of that. The day we got ours, she pretended to sit down and read hers (she can't read yet).

We are going to have her do some of her "artwork" in a few books and auction them off sometime here in the near future. I am going to be slowing down on any auctions during the holidays so today is the last day for the bracelets for a while. I am trying to work on a new source for the beads in the meanwhile.

Well, I have a doctor's appointment today (yes, it is my followup finally) so I have to get myself together around here. Don't tell Katia but I really don't like going to the doctor. I am one that prefers going to the dentist:)

Thank you again for all of your prayers and your wonderful messages! They really mean more to me than words can say!

Love, Tracy









December 13, 2004 1:20 PM

Good day.

If you haven't had a chance to read about the trip to Miami, it is in the journal entry below this one (12-12-04).

I, at first, wasn't going to update today but then I thought, let me go ahead. I am so used to sitting down here and letting you know how Katia is doing and what we have been involved in. Most of the time, a very positive note.

Katia is doing okay. Her cold is really getting bad with coughing and stuffiness and just not getting any rest. It seems it will have to just run its course and move along before she will feel better again. She is eating decently and taking her medicines so we are thankful she is able to do that. Another thing I am noticing on Katia has quite a few blue bruises. I am of course concerned about her platelets as a platelet drop suddenly is not a good sign. Please pray her platelets have maintained. I will let you know what I find out.

This last few weeks have seemed to just fly by (really this year!) and we have just stayed so busy with planning the drive and then the trip to Miami. It is the middle of the month already. Christmas is just days away and in all reality, it will be here before we blink our eyes. I am so thankful we WILL be spending this Christmas together, at home! I am determined to be here for Christmas. I pray Katia's cold will get better and not any worse or get anywhere near her lungs causing pneumonia. That is the prayer for that cold.

Please keep our family in your prayers as we are in the midst of facing big financial distress. With Myron being out of work with his shoulder (he goes back tomorrow) the month has just caught up with us with many things pending and needing to be taken care of right away. I am not asking anything but your prayers. Prayers have pulled us through life and death matters and I know that ultimately, God is in control of everything from our health to our finances. God has placed us in the place we are now and He allows us to participate in the things that most concern us, that is the marrow registry and drives, etc. I really believe that to be the reason behind all of this. God never says that life will be easy and we don't ever expect life to be easy. I just ask your prayers to see us through this and be able to get back on our feet right away. I know many many families, with or without illnesses, struggle and go through these times that you can't imagine you will ever pull through.

One thing you know about our little family is we stick things through together and hold strong to our love. Today, things just reached a point that both Myron and I were really stressing out trying to figure things out. Both of us are the type of people when things get rough, straighten the house:) Well that is what we were both doing while our brains were going 100 MPH. Anyway, I just looked at Myron and realized, we have faced so much more than this and we have always faced things together. Tomorrow will be 17 years of marriage for us! So, I just stopped SCRUBBING down the kitchen counter and said, "I love you, Myron". That was just a relief all in itself. I mean the fact is I could be facing this alone and I am not.

So, I ask for your prayers that the Solomons can get through this "mess" we have found ourselves in suddenly.

Again, thank you for coming by and checking on Katia. I promise the next update will be more positive. It may be a few days but it will be more positive:) I like those updates a lot better.

Love, Tracy





December 11, 2004 4:15 PM

HIYA:)

Well we are basically rested up and unpacked.

I have to say, that was a lot of fun. Going to Miami and appearing on Despierta America was just great! The cast was awesome and everything so well planned out and ran very smoothly.

Katia had a wonderful time and everyone loved meeting her.

We arrived on Thursday to the hotel and Katia first noticed the KING SIZE BED! Mind you, she sleeps with us so this was a great opportunity to have a bit more space. She REALLY liked all the pillows and the space. After she aquainted herself with the room some, we unpacked and met someone that would be doing the speaking for the National Marrow Donor Program. His name was Rene and he really was so kind and did an awesome job speaking on the show.

Two people, Victor and Patricia, that work with us on The Katia Solomon Foundation, also went with us. Patricia would be the one to talk about KSF and how it came to be. She also did a fabulous job. Mind you, this was LIVE TV and played internationally so it is easy to be very nervous. There is no redoing anything or fixing mistakes.

When we arrived at the studio, we had hair and makeup done (Katia too!) and then met with Neida Sandoval who would be the one to do the actual interview. We went over a few details and then made our way to the studio. The show runs from 7AM-10AM so there was other guests out there and it was so fun to watch all the happenings on this very decorated set. I was amazed at how smoothly everything was going in between segments.

Then it was our turn and we got set up, did our interview and as a suprise, Myron was asked to sing (without any accompaniment or set up). So, he sang a small part of "Katia's Song" to her in Spanish. I was just amazed at how well he was able to perform while having a pretty bad cold.

Katia did remarkably well at sitting there, waving and being cute! She was dressed in her little red ladybug dress and black shoes. She even wore little white pantyhose:) Those were new to her and she didn't know what to make of that.

When our interview was done, a band came out that played some really great dance music and Katia got to dance with the cast members to bring the show to an end. All in all, everything went really well!!

My dad and Myron's parents, who live in Honduras were able to see the show which was really great to us. We were glad they were able to be a part of it even though they live overseas. The show was on Univision which is available on most Cable or Satellite lineups so it is seen all over the world.

Our goal was to bring more attention to the need of registering as a marrow donor and donating umbilical cords. I really think a lot of people were reached and touched by the show.

On another exciting note, someone who registered during Katia's drives (he lives in our neighborhood) was just called yesterday that he is match for someone needing a bone marrow transplant. The date for transplant is set for the 30th of this month. I am so happy that this match was made and what a great Christmas present for the recipient and their family. He is so excited to be able to donate. He lives just a few houses down from us and was a big part of Katia's Homecoming celebrations! Thank you, John, for registering:)

Well, that is about all. I set up a weblink about the Despierta America segment for you to check out:)


Thank you so much for checking on Katia and for all of your prayers that the trip and everything would go smoothly. I am very happy we were able to participate and have this opportunity. This is one of the many ways we pray the Katia Solomon Foundation will be able to spread the word and help bring the much needed awareness to the National Marrow Donor Program.


Love, Tracy





December 10, 2004 9:00 PM

We are home from Miami:)

The show went great!!! I will update more tomorrow as we are just wiped out and Katia is needing her medicines and rest. She isn't feeling too great but she had a great time, a lot of information was given to an international audience and we are just so blessed to have been invited to do this and have this opportunity!

I will add some pictures and more of an update tomorrow. I will also get around to some websites in the morning so I can check on our friends and update any prayer requests. Thank you so much for all of your travel prayers.

Love, Tracy







December 9, 2004 10:09 AM

We are preparing to leave but I wanted to put the link to the Tampa Tribune Article here for you to read:)

Katia Home For Holidays.

I will try to update from Miami but we should be back home by Friday evening.

Love, Tracy









December 8, 2004 6:15 PM

Things have been very very busy planning for this trip to Miami tomorrow. We are very looking forward to this opportunity though.

Tatiana had her appointment about her back and although the scoliosis is at 11 percent, they feel the problem lies with nerve damage somewhere so she is being sent to a pediatric neurologist. That will be planned as soon as she can get in. Thank you so much for your prayers for Tatiana. They do help. She is able to do anything unless it involves a needle. Then you won't be able to track down Tatiana. She hates needles, period!

Katia's cold is still worsening but I don't think it can get much worse than it is right now. I think she has reached the "peak" of it. She does improve quite a bit with medicine so that is good. She doesn't sleep much at night. Of course, colds usually are worse at night even though anyone with a cold REALLY NEEDS SLEEP.

Myron definitely has the cold now. It will hopefully not make his voice mess up as I am not able to do a spanish interview. I can understand quite a bit of spanish but I definitely can't speak it well. We will drive down to Miami tomorrow (about a 5 hour trip) do the show on Friday morning and then head back. I haven't made a car trip like that for quite a while but I am definitely used to sitting in doctors' offices:)

We are still working on a lot of the details of the trip so I better cut this short.

I have also updated/added prayer request above. Thank you for praying for these other families as well.

Love, Tracy



*****



December 7, 2004 5:10 PM

WBC 5.8
HGB 10.7
PLT 172
ANC 2800

Well, today was clinic:) The long day. We had 2 infusions done today. One is IVIG and the other Pentamindine. So, we are there for at least 6 hours. All went well though so that is good.

In 2 weeks, we will plan on doing her next spinal chemo. Katia's cold is pretty bad at this point so hopefully this is the worst it will get and will start improving. Right now, nobody is sleeping (Myron, me and Katia) due to this cold and now it seems Myron is coming down sick with it. Nobody can say we don't share:)

Katia slept through the end part of her infusions today but before that we just entertain eachother as best possible. She has a Video Now and her Leapster and they go with us to clinic. I have to say thank goodness for technology at this point. She is very into both of these items and that is a great distraction for her. Me? I read magazines and play with her. I am really used to that after being in the hospital with her for so long. Some how Katia and I can carry on pretty normal conversations. At least they are normal for us:)

Well, I have some catching up to do around here and we are just getting lunch so I better make this quick.

Please pray for those listed in the prayer request section (I am trying to keep them as updated as possible) and each of those in our dropdown menus.

Love, Tracy







December 6, 2004 2:00 PM

PICTURES NEEDED...
I would like to have a good number of pictures to show on the Despierta America show. I would need them sent to me via email today though or your permission to get them off your site. These would be used in a photo segment of our talks on Friday on this television show. It would be showing kids that have had or are in need of marrow transplants. I would really really appreciate your help in this as we really want this show to touch a lot of hearts so that registry can grow with potential donors. Thank you so much.
Email me at TMSOL87@aol.com

Despierta America can be viewed internationally on the channel Univision. I know it plays EST from 7:00 AM to 10:00 AM and is a live show. We will be there on Friday December 10th.

Love, Tracy


December 5, 2004 6:30 PM

Hello:)

Today has been a busy day and started off not so well. Katia has a pretty bad cough and a stuffy nose and seems to be coming down with a full cold. Her throat hurts and her nose irritates her. She tries to sing and be happy but then it bothers her. I have her on some medicines that seem to help but of course, wear off before it is time to have them again.

Today has just been on the stressful side going over some paperwork and plans. I know each of you know how that is. We are all in this same world together and we all have our stresses. Myron and I always say that everyone's problems are equal in the way, they are our problems. Sometimes people say, "I know this doesn't compare to your problems with Katia..." and in a lot of ways health and financial issues are far different but the same. They are usually not expected or welcomed and can really turn your life around. I really do to try to stay positive and keep this page on the subject matter, our little Ladybug and her healing process:) That is the main thing and that is our goal.

I look back over our life and all the main things I can remember, have to do with our family and kids and things like that. The other things become a thing of the past. Our family and kids are our future. Sometimes I look around and the thought of that scares me:) Just kidding...

Myron is planning on getting back to work this week which will be very good. Although he is still not able to move that shoulder much, he knows it is time to put it to the test (not overdo it though). He has missed over 2 weeks of pay and that just can't continue. Although Katia has been very very happy to have daddy around and take care of him, she will understand. Since Myron works at the airport, she thinks every plane that flies over is her daddy and she wants him to jump down to home (okay, that would definitely be bad for the shoulder).

Right now she is sitting here next to me singing her own version of Christmas songs. It is cute. She takes out the part about "you better not cry, you better not pout..." and she adds in her theory of what Santa is looking for. When that song comes on the radio, she tunes out:)

Well, I better get my mind to something for dinner. The time change messes up my "Inner clock" and the time catches me by surprise.

Please keep Katia in your prayers that this cold will pass and not cause her any admits or too many bothers.

Love, Tracy








December 4, 2004 6:30 PM

We had a fantastic time at the Marrow Drive today at Bank of America's Grand Opening:)

Okay, minus the cold weather and the rain...

I am in the process of posting the pictures in the photo album so you can see how our day went.

I have to say that although it was cold and rainy, we did have people come out and register! That was fantastic.

Katia stayed out there for the most part but then I brought her home. She enjoyed watching the games the kids were playing with Radio Disney. She had a little ladybug painted on her hand and encouraged people to register as a donor.

So, enjoy the pics:)

Love, Tracy







December 3, 2004 8:57 PM

Okay, what have we been working on lately? Well we have been quite busy making brochures and bracelets:) But, we have really been trying to reach out with The Katia Solomon Fund and reach as many people as we can, especially during this time of the year.

There have been nearly 20,000 bone marrow or blood cell transplants done to date but nearly 35,000 people are diagnosed each year with a disease that could be helped or cured with a bone marrow or blood cell transplant so... our work continues alongside the National Marrow Donor Program.

This coming week, we will be going to Miami to appear on Despierta America. This is a Nationally televised show that aires on Latin TV. It is like the "Today Show". We are so looking forward to this. We will be going with one of Katia's doctors and representatives from the National Marrow Donor Program and share Katia's story to urge others to join the registry. As you know, this is one of our main goals with The Katia Solomon Fund.

You can find out more information on this on the KSF SITE as I will keep it updated to when this show will aire and provide more information. There is also a special message over on the KSF site for our Caringbridge Family. You mean so much to us.

Thank you for checking on Ms. Katia and thank you so much for the wonderful birthday wishes to Myron! He really enjoyed them. You know we ALWAYS love reading your messages and Katia loves to hear them when she is here with me. Today she said that Kody's Picture makes him look like a doctor. He has new glasses:)

Love, Tracy





December 3, 2004 1:55 PM

MARROW DRIVE TOMORROW IN TAMPA which Katia will be making a short appearance at:)

We are doing well around here. Myron had a nice birthday with some friends of ours. He doesn't really look older to me? Katia's big event of the night, CUT THE CAKE! She even ate some of it which later caused her some tummy pains. She is doing good today though and has had cereal for breakfast and some Beenie Weenies for lunch. It is AWESOME to see her appetite coming back. Slowly but surely we say:) I did finally give in and get her some size "24 month" pants again so the 3Ts wouldn't keep falling down. We will just put the 3Ts aside until she is ready for them again:)

Her walking is still on the improving side which is GREAT! I took her outside for a bit yesterday and she fell down a few times but the good thing was she didn't burst into tears and want to go back inside. I got her standing again and we walked some more. About 5 minutes of walking and she is ready to stop. Every little bit counts:)

Well, we have a lot of little things today for tomorrow's drive. We are going to be out there for a couple of hours (Katia and I) and then Myron and the girls will stay out there after that for the rest of the day. Hopefully a lot of people will register because, as you can see in the guestbook, matches are definitely found. Carrie, I am so glad you will be able to be a match:) That was great news!

Well, we better get back to getting busy:) I will post some new pictures up here later today.

Love, Tracy






December 2, 2004 12:55 PM

HAPPY BIRTHDAY MYRON!!!

Today Myron woke up to cards made by the kids and a lot of love. Katia adores birthdays and of course, birthday cake.

The first thing Myron does on his birthday, every year, is call his mom and wish her Happy Birthday. Is her birthday on the same day you ask? No, but he is thankful for her giving birth to him. I remember when I first heard Myron do this, I thought, "OH HOW SWEET!" That was before I had my own kids and now it just means all that much more to me to see him do this:)

Basically, Katia picked the cake for today. White cake with Blue Icing. I think that sounds great for Myron! At first she said chocolate cake and then she changed her mind.

Myron has been working really hard getting something together, with the help of the others that help us with The Katia Solomon Fund and when I know the specifics I will post it on here. That is all I can say for now. Doesn't that just drive you crazy?

Yesterday the Tampa Tribune came over to do a followup story on Katia. She had fun and let them see her swing and make bracelets (Yes, Julianna Banana, Ms. Katia understands your feelings on working around the house) so that should be coming out in the paper soon. We are just all happy to be home for this WHOLE HOLIDAY SEASON. You see, I am already saying we WILL be here the WHOLE season so that leaves no room for anything to go wrong. Positive thinking is EVERYTHING:)

So many of our caringbridge family are not having a good holiday season due to relapse, hospitalizations, loss of loved ones, just so many things. My heart aches for each and every one. I also think about all of those that have loved ones in Iraq or abroad and I just know you are missing eachother. I just really wish that the "Holidays" just meant everything had to be perfect for the whole season!

I reflect a lot during the holidays. Sometimes that is good and sometimes bad but I think it is good to sit down and just evaluate things and see what is able to be changed for the better and what needs to be mended in your heart. I have learned a lot of patience (my family would agree I need to find more of it) and I have also learned that I don't ALWAYS have to be strong. It is okay to have bad days and to feel down. That is when your friends and family step in and become uplifting. I can definitely say I have good friends and family! I am very grateful for that.

Am I always upbeat and "positive thinking"? Of course not. I wish I could be but that is just impossible for me. I have a lot of growing to do in that area. I do try to make myself look at things to appreciate when I feel down. I try to drag myself over a slump and put things back into perspective.

Well, I feel like I am rambling but like I said, I have been "reflecting" a lot (a much nicer word than rambling) and well that makes me a little chatty.

Ms. Katia is hungry (isn't that nice to hear?) for lunch so I better get her something while she wants to eat.

Love, Tracy











December 1, 2004 6:58 PM

WBC 5.5
HGB 10.9
PLT 194
ANC 1900

HIYA!
Well our day at clinic went well. Katia has a small increasing appetite (she is again drinking milk) so we are holding off on the appetite enhancing drugs. She didn't gain or lose any weight so hopefully she will head up from here. She says she will:) That works for me. She understands why she needs to eat.

I also updated the EBAY listing above. I have a good amount of "Ladybug Club Bracelets" available so they are going to be $8.00 each while this supply last. I am hoping they will make very good Christmas presents for your friends, families and coworkers so they will be mailed right out. Thank you so much for those of you ordering and I hope you will be wearing them and enjoying them. I never take mine off:)

Myron's shoulder is moving a lot better now (he is still going to Physical Therapy for it) so he will be returning to work early next week. He would have been off 2 weeks which has not been easy so we have to really do some catching up. I am still very amazed with the many things that can be fixed with surgery. Although things are quite financially rocky right now, we are more filled with being VERY VERY happy to be home this year! It would be very difficult to put a shadow over that fact for us. This time last year, we didn't know if Katia would have a marrow match yet nor if she was going to survive the lung surgery so this year, things are 100 percent better than last year and we are HOME! Today Katia was out on her swingset, last year, she was in room 265 unable to even go to the playroom.

We have many friends that need prayers so I will be keeping the prayer request updated as best I can.

Thank you for your prayers and support. Thank you for sharing this year with us:) You mean so much to us in our everyday life.

Love, Tracy



November 30, 2004 3:15 PM

WOW, I can't believe it is going to be December tomorrow! Unbelievable! This year has gone by so so fast. I am sure most of you know what I mean. Although we spent so much of this year in the hospital, it went by fast still.

Things here have just been quite hectic these last few days. We are doing a lot with The Katia Solomon Fund so we can do more things with it so that is keeping us busy. Katia's appetite hasn't really improved so that is keeping us concerned and on her case about eating. She goes to the doctor tomorrow so we should be able to work something out and get her labs done. I would just like to see that everything else is remaining stable (platelets, WBC, etc) which I believe they are. She has been itchy today and had a small rash but that seems to have disappeared. I am just praying the Graft vs. Host Disease doesn't come back on her skin now that we have discontinued the steroids. We will find that out tomorrow also.

Today, Tatiana went to the doctor. She has been having back pain which has been increasing a lot over the last few weeks. I feel so bad but with everything dealing with Katia, Tatiana's doctor visit had been delayed. About a year ago, or a bit more, she went in and we found she had scoliosis, about 3 degrees of it so that isn't enough to really do anything about. Now it seems to be worsening and causing her quite a bit of pain so she went to her pediatrician today and then next week will go to an orthopedic doctor-the same one she has seen before. Tatiana is never one to complain so when she does finally say something hurts, it must. Her left shoulder blade is concaved some and it just appears to be "out of alignment".

Right now, she is playing with Katia and they are giggling. Boy, do I love to hear that sound!!! I used to miss that so much when we weren't home because, quite honestly, I think Katia was just getting sick of seeing me so much:) I am not as good a playmate as Tatiana is.

So, that is our life in a small nutshell. Myron is feeling better and will be back to work early next week. Although he has been "resting" we still stay so busy that I couldn't call it resting and relaxing. I think that is what R&R stands for?

Well, I better finish up here and wind things down around here. The day is getting by me.

Love, Tracy



**************



November 29, 2004 8:00 AM

Good morning all:)

Sorry for no update yesterday. Things have just seemed to be quite busy here over this last holiday break but good kinds of busy. We were working on bracelets and getting them ready to be mailed so, for those of you who have recently ordered, they are on their way:)

Also, Myron's shoulder is a lot more sore than even I imagined it would be. I guess going into that muscle to repair it really disrupted a lot in there. Not to say we are old but it seemed easier to recuperate when we were younger:)

We did get our tree up on Saturday, actually we put up two trees. Katia had her little tree from the hospital last year so we put it up and decorated it. Sharayah has their SpongeBob one up in her room. The house looks pretty festive. Katia was asleep through most of this so it was a nice surprise when she woke up. Then she put a couple final touches on the tree.

I need to ask you to pray for Katia. She seems so fragile. Not overly weak though. She just isn't eating well and it has all of concerned how skinny she is. She is usually in pants and long sleeve shirts but yesterday she had on a short outfit and WOW, she is so so skinny. She is still 28 pounds so she hasn't lost anymore but she hasn't gained any either. She goes to the doctor tomorrow and this has already been discussed. There is a drug, Marinol, that is not a steroid that we may use to help enhance her appetite and get it going. I am not sure about this due to all of her other medicines or the side effects but it is really becoming a big thing to get Katia to just take a few bites. She hasn't been throwing up at all and she does get a decent amount of drinks per day. She is on some supplement drinks and gets vitamins from those but I am just worried aobut her weight. My prayer is that she will reach 30 pounds by Christmas maybe:)

I have gotten a lot of emails concerning ideas about this and I do appreciate them. I read them but I don't always answer all of them.

A lot of you asked how much Turkey did Ms. Katia eat? Well she had a few bites, not as much as she said she would eat but she had a couple bites of turkey, some stuffing and some corn. She definitely liked the idea of putting that big turkey in the oven and cooking it!!! She had her chef hat on for the most part of the day and kept going with me to "check on things" in the kitchen.

Well, speaking of eating, I need to get her breakfast so I better cut this short. I just realized I hadn't gotten on here last night and updated and I didn't want to have you thinking anything was wrong.

When you get your bracelet, WELCOME TO
"The Ladybug Club".

Love, Tracy









November 27, 2004 11:30 AM

Myron did the update this morning as the rest of us are making the "Ladybug Club" bracelets:) Now Myron is joining in the fun while I post his update. It is nice to have him feeling better and around the house:)

*****************




Form Myron November 27, 2004

Hello everyone!

I am up and around, the house at least!
I just wanted to say thank you for all your thoughts and prayers as I underwent my little surgery.

I am so very grateful for the love and care that comes from you all, you just don't know how much strength you bring.

These last few days I've experienced some physical pain and discomfort, but when I think about what Katia, and the countless others who endure such devastating treatments and pain facing the horrible Dragon, I dare not complain.

My little girl worries so much about my discomfort, I guess it is because she knows what pain is.

These Children have such love and compassion in their hearts, it is amazing, they really worry more about their loved ones as they go through their own nigthmares.

I have so much to be thankful for this year, There are not enough pages to hold everything I would like to say.

We experienced a nice and quiet thanksgiving day this year, we where all here, at home.

A true miracle itself.

As all of you know, each day is a day of thanksgiving when you are faced with life treatening illnesses.

Please pray for our Foundation, that we will be able to reach out to others and gain some support, so that we can meet our proposed goals.

I encourage all of us as we go into this holiday season to remember the little things that we are blessed with each day, and that somehow we will have the opportunity to share those blessings with others and help to bring even a little ray of happiness to those who need it most.

Know that the Solomon family loves each and everyone of you in a very special way, and that because of you we have the wonderful opportunity to be"sharing hope on the wings of a lady bug".

God bless you all, and please stay safe during the Holidays.
We love you.
Luv, always. Myron


**************

PS I have updated the ebay listing for bracelets and Katia wants everyone wearing these to be part of her "Ladybug Club". This club was started with her doctors and nurses receiving little pins, meaning Katia liked them taking care of her. It has just grown from there so now the bracelets make you a MEMBER!! Katia likes people wearing their bracelets:)

I am also asking that you email a picture of you with your bracelet (if possible) so we can make a collage of these pictures:) THANKS so much.



November 25, 2004...
Please see the updated prayer request above for Eleanor and the added one for Baby Boy Hammonds. Thanks:)



November 25, 2004 3:13 PM

Okay, I have gotten about 8 emails asking the same question ( and it is a very good question!) plus in the guestbook so...
Katia weighs 5 pounds more than the turkey. Katia weighs 28 pounds which is 12.7kg. About 2 weeks ago, she was 14.6kg which is a little over 32 pounds so she was bigger then.

Katia HAS to gain some weight. We do have a few ideas to try if she keeps losing weight. I really don't want to do IV nutrition because it ups her risk of infection. But there are some meds we could try to enhance her appetite. She is drinking plenty of water but doesn't want anything to do with milk or any dairy products. Turkey should be ready here in about one hour and she says she is going to have "3 bites and then 5 more" which I am not so sure where she gets her math but I would be happy with that.

Myron is feeling some better today, just very very sore in his shoulder and throat. Sharayah has a cold and Tatiana has a sore back. BUT WE ARE VERY THANKFUL. Today we asked the girls what they are thankful for. Sharayah and Tatiana are thankful we are all home together. Katia is thankful for food and her family. Myron is thankful to have his whole family under one roof. I am thankful for all of that too but a big thing that is on my mind right now, I am thankful Katia's marrow is working. I keep up with quite a few pages and over this last 2 weeks, so many have either relapsed or their marrow is failing. That weighs so very heavy on my heart!! So many families have lost their loved ones since last Thanksgiving. My heart is with them. You know, it is so easy to look around me and find things to be thankful for. I look at my family and I am so thankful that not only are they here with me but they love me! They really really do love me. Of course we don't have perfect kids (I can honestly tell you they aren't perfect) but they are healthy and they really love their sibblings and their parents. I am very very grateful for that. I know I am very lucky to be able to say that. At the same time, as I am giving thanks, my heart is very heavy for my dear friends who have lost members of their families. My eyes tear up as I think of that. I just wish I could hug them or be there for them. I can think of quite a few that cherished the holidays so much last year and just a year later, they are no longer together. I never thought about all of this before Katia was diagnosed but now it is a part of our everyday lives. Although I know we can't take the pain away I just want to say that we pray for these families for whatever their individual needs may be. I know what their wishes would be and I so wish they could have those wishes.

Each one of my daughters have had their picture taken with the turkey (like the one of Katia above) when they were 3 years old. Well Katia is 4 this year but last year I couldn't take the picture. We were in the hospital. I remember that really had me upset last year because I didn't know what the bone marrow transplant would bring us. I knew we had a lot to go through and that it wasn't going to be easy. We had just realized how sick her lungs were and I knew we had that to face also. I wanted so bad to get this picture with the turkey so this year, HERE IT IS! That picture is worth 10,000 words to me, more! It is amazing how important such small things are but I am thankful for the smallest things in life. This year I am so thankful God has allowed us to have this little 28 pounds of joy home, with her family, right where she belongs. I am glad we found a match for her and she was able to have her transplant. I am thankful for the mother that donated her sons umbilical cord so Katia could have this 2nd chance at life. I am thankful for everything around me.

I pray each day for the safety of my family, other families and for a cure to be found for not just cancer but many many things that bring tragedy and fear to families. I pray for our countries heroes that are fighting abroad and for their families that are seperated from their loved ones.

I just think that prayer is such an important part of our EVERYDAY lives and also Thankfulness. I have to remind myself of that a lot. Things may pile up or get stressful but there is always something to be thankful for. I am thankful each and everytime I come to this guestbook and I hear from YOU!! I am so thankful for your love and compassion and your prayers for this family. THANK YOU!!!

Love, Tracy







November 25, 2004 9:05 THANKSGIVING DAY!










November 24, 2004 2:27 PM

First, I hope each of you have a very very Happy Thanksgiving tomorrow!!! We will be all home, together, as a family, so we have plenty to be thankful for!!! We had a little scare earlier this week but Katia has been doing okay here at home since released from the hospital. She just isn't wanting to eat... so pray for that.

As you know, this time last year, we were in the hopsital waiting for the news of finding a match for Katia's Bone Marrow Transplant.

This year we are home, 9 months after having her transplant and celebrating not only being home but the fact that her "New Blood" is doing well:) November 27th, we will have been home for 3 months, all together and we are so thankful for that also.

We are SO SO SO thankful for all the friends and loved ones we have met over this last few years and all the love, care and prayers that have been said for our family!!!

Well, Katia is after something for me to fix her so I better cut this short. Of course, I will be back tomorrow:)

Love, Tracy




******



November 23, 2004 7:38 PM

Good evening:)

Thank you so much for all of your prayers for Myron. He had his surgery and came home this afternoon. We are really hopeful this will solve the issues with the shoulder. He is in pain and has a sore throat from the tube but other than that, he seems to be doing okay. Katia has listened to him with her stethoscope and gives him a thumbs up.

Katia is doing about the same. She really isn't eating well and that is going to catch up with her. The more we try to get her to eat, the worse she gets so we are going to just see what happens over the rest of this week. She SAYS she is hungry and will eat Thanksgiving but she also ask for a lot of food throughout the days and doesn't eat it once she gets it. She is walking around okay though which is nice. No falling:)

She kind of seems to be getting a runny nose and is starting to sneeze so hopefully she doesn't have a cold. I just really feel like she needs to eat and rest and that will help build her back up. Sharayah and Tatiana are out of school for the rest of the week so maybe that will perk her up some and make her want to copy their eating habits... We will see.

I gotta go. Katia is crying over something. She is getting upset very easy right now probably because she is feeling puny.

Everyone have a GREAT THANKSGIVING! Be safe driving and eat a LOT!

Love, Tracy









November 22, 2004 12:15 PM

We are home:)

Still not really sure what caused her to get so out of whack but hopefully it was just that she was dehydrated. She really isn't eating all that well or drinking all that well BUT if that doesn't change and improve, she will be back on IV nutrition here at home.

I am going to make this quick right now but I thank each of you for your prayers and concern. Just pray her appetite will pick up and she will start gaining some weight back. Now that she is off the steroids and has thinned back out, she is down to about 28 pounds. She needs to gain some weight to keep her healthy and happy. Maybe Thanksgiving will "stuff her" and get her back on track:)

I am going to get our stuff put away and get a shower after Katia and I have a little something to eat:)

Sharayah and Tatiana will be happily surprised when they come home and find us here!

Love, Tracy








November 21, 2004 10:48 PM

Well, Katia was hooked up to IV fluids and had some labs drawn. She still isn't really wanting to eat or drink but she does look quite a bit better and hasn't thrown up. I personally think she was just needing to catch up on fluids.

We will see what tomorrow holds but right now she is happily watching the Wizard of Oz and feeling quite homesick. That makes two of us!!!! There is a good chance we can leave tomorrow so please pray that happens. We need to be home and our family needs us home. Katia says she is going to dream about being home tonight and eating Macaroni and Cheese:)

Thank you so much for your prayers. We just said our night time prayers and we always pray for our friends and all of those that need our prayers also.

I will update more tomorrow but have a good night and pray we head out of here tomorrow. It is hard to imagine that we stayed here for 8 months straight and I didn't go out of my mind. I have to thank God for giving me the strength and for giving Katia the patience to stay still for so long. Now looking back, it didn't seem so long back then but now it seems like WOW! That was a very long time to be here! But, we have Katia and she has her new blood and she is doing well:) It was all so very worth it.

Love, Tracy







November 21, 2004 3:15 PM

Well we are at the hospital. I wanted to get right back on here ASAP so you aren't worried. We aren't sure what is going on but Katia has just been throwing up and has begun having runny poopies so... we need to find out why. She just became flopped out with hardly any energy and that isn't like her. I think she is getting dehydrated and maybe has some stomach bug or something. She hasn't had any fevers though so?

Right now she is sitting in her bed in the hospital and playing with Sharayah and Tatiana. She just isn't able to really eat or drink anything and keep it down. She is on IV fluids now so hopefully that will help.

I meant to share with you what I did on Friday night. Friday night I went to see Sharayah perform in Peter Pan at her school. She was one of the indians. She did very good and it was nice to get out and go see the play for the evening. I met someone that signs Katia's guestbook all the time so that was a real treat also:)

Well, please pray this is a quick trip and the problem gets resolved easily with some fluids and maybe antibiotics. Myron has his surgery on Tuesday. I did have a followup appointment for my mammogram tomorrow but I am going to put that off till next week sometime. This is the second time for putting it off but both times, Katia has needed to either go to clinic for her bruising or now this admit. I am just glad she is playing and happy right now:) That warms my heart!!!

Well, we pray that we will all be home for Thanksgiving (I think we will) and that Katia will be able to enjoy lots of turkey!!!

Thank you for your prayers.

Love, Tracy









November 21, 2004 11:45 AM

Please pray for Katia. We are being admitted. I will be back later.

Love, Tracy


November 20, 2004 9:17 PM (second update today but these are prayer request)

Please see the updates for Benjamin and Hayley. Both families have just learned their children's cancer has returned. They so need our prayers. Relapse is a fear always there but one you don't want to have to face...





November 20, 2004 7:13 PM

From Myron:)

Hello Everyone!
Just a quick note to say hi, and to update a little on what I've been up to.

It's been a little while since I've updated, but I want you to know that I always read your entries, and I am always encouraged and blessed by your kind words and your constant encouraging messages.

What a wonderful experience going to the Capital was! It was my first time there and I must say it was a lot more than I expected. The city seemed huge to me, a complete metropolis.

However, even more amazing was the reason we were there! I had the opportunity to meet such wonderful people, kindred hearts who, just like us are standing up to be counted, eager to help spread the message of hope, and to share their stories with whoever will listen.

The National Marrow Donor Program has certainly invested in families, a real and fervent desire to build a registry of hope, a mission of which I am proud to be a part of.

My friend Scott and I came back re-enforced and more committed than ever to do our part in bringing awareness and education to our little neck of the woods, and to every corner of the world that the Katia Solomon Foundation can reach out to.

As you already know the trip started with a bump in the road, or should I say, a bump in the eye! and a twisted ankle to top it off. It is amazing how things happen sometimes; adverse situations that try to steal your joy and I must confess. This almost stole mine.

But even though my body was beat up and bruised, my heart so encouraged, and I thank God for the opportunity to have been a part of such a wonderful event.

The event was celebrating 20,000 transplants! This is a true testament of dedication and determination to dream, and to never give up hope, even in the mist of tragedy.

We also had the opportunity to speak with representatives of congress and to help lobby for continued funding of the National Marrow Donor Program.

What a truly wonderful experience.

I sure missed my family do! Little Katia gets kind of down when Daddy is not around, and I tell you what, so do I. Being away from her is not the same as it was, I count every moment with her as a gift from God, and if I am away, I feel like I am missing out.

You should have seen the reception I got upon my return, I have never seen her run that fast!

All my girls took good care of each other and I thank you all for checking in on them.

Tuesday, I go into surgery. Please pray that it is successful, and that I can get the normal function of my arm back.

Again, thank you for all you do. Your continued support of the Katia Solomon Foundation and our family is amazing.

We anticipate great things to come.

God Bless, Luv

Myron



*****






November 19, 2004 4:06 PM

Well, we are back from the hospital and had our CT SCANS and MRIs done. All went well. Katia was getting very cranky with having to wait on an empty stomach but that is understandable. They did all they could to move things along.

I have no results as of yet (which is a good thing in my mind) so I will post when I do know anything.

Her legs and arms are quite bruised up even though she has gone way down on her activity level so I am concerned about why. She would normally have her appointment on Monday but I changed it to Tuesday since I have an appointment on Monday with my doctor. Myron's surgery is this coming Tuesday also. This will be a busy busy week but we will have all that much more to have behind us and to be thankful for on Thanksgiving:) Which brings me to THREE questions:) I love doing this!

1. What is your favorite Thanksgiving dish?

2. What are you most thankful for this year?

3. What is your favorite family tradition?

Okay, one more:)

4. What is your best memory of Thanksgivings past?

I like these questions because I think everyone enjoys reading the answers and we learn about eachother. Plus, if you leave your favorite dish, maybe you can share how it is made if it isn't something we all normally make:)


Love, Tracy







November 18, 2004 10:12 PM

Wow, today has just been so hectic it seems but I am not sure why...

Myron came home this evening!! That is super!! Boy, did we miss him. He did have 2 injuries up there. He ran into a shelf and hit his eye so that is messed up and at the same time, he REALLY twisted/sprained his ankle. He is laid up right now and Katia is nursing him and listening to him with her stethoscope. She is going to be a great doctor.

We have an early day tomorrow so keep Katia in your prayers. She is having the CTs and the MRIs done tomorrow and hopefully having her broviac stitches removed. The scans are all to check her eye tumor, her brain, her sinuses, etc.

Well, I better get to bed:)

Thank you for checking up on us and praying for us. Please keep Amy M. in your prayers (link is above) as she has been going through a lot this last few days.


Love,Tracy








November 17, 2004 8:00 PM

HIYA:)

We have been going a little picture happy today but I will keep that photo up top. Janice, I like the caption you said, "Look at me, I am winning the race!!" so I changed the caption.

Katia has been in quite a good mood today but I wouldn't try to move her away from mommy. With one parent not here right now, Katia won't hear of not being attached to mommy. That made for quite a scene tonight.

Well, I am glad Myron will be back tomorrow. I really really miss him. Does that sound goofy? But, I do. We are a real team and we complete eachother. I got to see a picture of him dressed for the Gala tonight. Someone took a picture of him on their phone and sent it to me. One of our friends, Scott, went with Myron. Scott is a HUGE help with KSF!!

Well, I better go. I need to wind things down around here tonight. It sure is weird not having Myron here. It feels like the day isn't complete and it really isn't coming time for bedtime. Next month we have our 17 year anniversary:)

Katia says she wants to go back out to the park because there were two swings she didn't swing on and a slide she didn't go down... so I guess that is something we will just have to do:)

Oh, before I forget, those of you who have your ladybug bracelet or are about to get yours, can you take a picture and email it to me? I want to make a "Ladybug Club" page:)

Love, Tracy







November 17, 2004 12:39 PM

Well I have some pretty cool news:) Katia actually dressed herself today. She is very happy about that! She put on her own pants and shirt:)

Also, I am going to post some pictures from our Park visit yesterday. It was great to have her out and about a little. As she gets more abilities to be more active she will have a lot more fun but we did enjoy our time out:)

Also, I have posted more of the "Katia's Little Ladybug Bracelets" above along with a link to the big beaded bracelets she made yesterday.

Myron is doing well in D.C. He misses us too though so we look forward to his return. The National Marrow Donor Program Gala is tonight so he will be meeting a lot of the people that make the Marrow Program the success that it is.

Love, Tracy

PS I was just emailed this Prayer Request. There is no page link as of yet.

**Please pray for Josiah, a 4 yr old boy who is the son of a pastor from First Assembly of God of Clearwater. The Family was in Puerto Rico ministering, when they noticed Josiah having trouble walking on his left side. They came back to the states amd immediatly took him to the doctor.Josiah is now in All Childrens Hospital. He has been diagnosed with terminal brain cancer. Surgery is not an option, doctors are determing if they should even put him through chemo as the outcome is a 5hance of survival. Please pray for haeling for this little boy and for strenght and courage for his parents to handle whatever the outcome.**

Please pray for Josiah and his family.






November 16, 2004 7:09 PM

I miss my hubby:(

Yes, I miss my Myron... He did make it to Washington DC okay and is settled in. We really do hate being away from eachother. I guess that is a good thing after being married for nearly 17 years. He will be back soon enough:)

I took Katia to the park today. She really didn't have too good of a time. It took a lot of effort for her to get around. Her favorite thing was the baby swing and her second favorite thing was going down the slide with me. I took a few pics and will try to post them tomorrow. She wasn't too smiley but the scenery was nice. It was a park I used to go to when I was a little girl. I actually broke my arm at that park two times, once when I fell from a tree smack on my arm, down onto a picnic table. Well, we sat at the picnic table and had a snack. I told Katia about my fall and she agreed she wouldn't climb in the tree:) Smart little girl, more so than her mom I guess.

Well, we are about to eat dinner.

Thank you for checking up on us and for your prayers for Myron's safety:)

Love, Tracy





November 15, 2004 3:48 PM

WBC 3.3 (low)
HGB 11.6 (normal)
PLT 134 (low)
ANC 1100 (low)

Thank you for your prayers for clinic today:)

I will have to say they were pretty surprised when they saw the condition of Katia's Legs. We got her to walk around and she is walking fine. She doesn't seem to be losing balance. She really doesn't have hardly in muscle in her legs yet, which will hopefully start improving with the end of steroids in 2 days:) I am so glad she will be done with those!

We ran some extra blood tests to check her "clotting factor" levels. Since her platelets are good something else may be causing this bruising. It MAY turn out to be totally steroid related but we just need to check to be sure.

Katia really doesn't have much strength in her legs. Although she can walk, she really doesn't have the reflex strength or the strength to push things away with her feet. She can't really go from a sitting position to a standing position so this falling could just be because of her weakness and her need to get stronger. We will make sure it is nothing brain related with the CT and MRI this coming Friday so please pray those things look stable and that all Katia needs is to work those little legs!

Katia and I were awake most of the night so we got a little nap this afternoon. I am not one to normally be able to take a nap so for me to fall asleep meant I was TIRED:) I feel better now and so does she.

Myron leaves tomorrow for the National Marrow Donor Program Gala in Washington DC and he will definitely be missed here. I am glad one of us is able to participate in the events and represent our appreciation and concerns to the NMDP and those involved.

Well, I better get dinner going. We have a busy night getting things together for the trip. I didn't realize that Thanksgiving is next week. WOW! That really snuck up on me. I guess I should start trying to plan that too but this year, we WILL BE HOME!!! That will be excellent no matter what we do:)

Well, thank you for your prayers, so much! Little Ladybug says hello to her computer friends. She is getting to be quite efficient on her Leapster and LeapPad so that is good to see. I can't believe she will be turning 5 soon. She is so little, I couldn't imagine sending her to school right now. WOW! They grow up so so fast, don't they?

Love, Tracy






November 15, 2004 7:50 AM

Thank you so much for the Ian links:) I have added them to the pull down menu.

I have a few prayer request to add when I get home today but I do want to add this here before I leave.

One of our nurses, Ethel, from 2SW will be running in a Leukemia and Lymphoma Marathon for Angel Casie Snow. She has been trying to raise her entrance funds and could really use a boost. I know so many of you followed Casie through her journey and continue to follow her page with her mom, Jane. This is a small part of the request from Casie's Mom, Jane on their guestbook;

SHE MUST RAISE A MINIMUM OF $3,600. TO RACE. SEEMS SHE IS STUCK AROUND $2,000.00 AND TIME IS GETTING SHORT! I HATE TO ASK BUT IF ANYONE CAN MAKE ANY SORT OF DONATION IT WOULD BE GREATLY APPRECIATED. NO DONATION TOO SMALL!YOU CAN FIND OUT MORE ABOUT THE RACE ON THE L&L WEB SITE OR JUST ENTER TEAM IN TRAINING AND IT WILL BRING YOU THERE. OF COUSRE FOR ETHEL TO GET CREDIT SHE MUST TURN IN THE CHECKS. THEY CAN BE MADE OUT TO THE LUEKEMIA,LYMPHONIA SOCIETY AND MAILED TO ETHEL GOULD, 1824 SHORE DRIVE SOUTH,APT 111, SOUTH PASADENA,FL. 33707.

So, if you would like to help, this is a good opportunity. Ethel knows our little Ladybug and has taken VERY GOOD care of Katia through her stays at the hospital. She is an awesome nurse!

Love, Tracy






November 15, 2004 12:32 AM

Yes, I am awake:) Can't sleep. So I thought I would ask you a question. There was a link to a little boy, Ian, not too long ago and I can't find his link anymore. I know people would like to check on him so I would like to put him on the pull down menus. I do have a link to Angel Ian but this is another Ian that had just had some intestinal surgery. Thank you so much. You can email me the link:)

Love, Tracy

PS I will update when we come home from clinic in the morning:)





November 14, 2004 3:06 PM

Can you believe I didn't update yesterday? Wow, I must have lost my mind. Well, Sharayah had a good birthday so she is now, officially, 16 years old:)

We have been working on making more bracelets (very very time consuming) so today has just been going by. I thought, "I better get in there and update!"

Katia has been having some falls (3 times to be exact) so she is VERY bruised up on her legs and her lip right now. I am not sure why she is suddenly falling but she isn't allowed to walk around without someone holding her hand right now or having her buggy with her. When she goes to clinic tomorrow, they are going to be shocked when they see her legs.

I would post a picture but I don't think that is too good of an idea. So you can Click here for a picture. Mind you these aren't huge falls, just big bruising. They say the big bruising is being caused by the steroids which brings me to some great news!

KATIA FINISHES HER STEROIDS THIS WEDNESDAY NIGHT!!! FINALLY!!!!

So, I better get back to some ladybug bracelets so I can get them on the site this week:)

Love, Tracy

PS Thank you for all the birthday wishes to Sharayah:) You guys are beyond super!





November 12, 2004 3:38 PM

Good day:) Happy Friday!!

Okay, there are finally more Katia Bracelets available so go get yours while they last. I have 15 available:) They will be shipped out ASAP from time of purchase.

Things here are going well. Katia has had a kind of "down day". She said she thought she was getting a fever but then it was only in her legs?" Not sure what she meant but she is fever free. Her legs were a little warm.

Tomorrow is the big day for Sharayah. Sweet 16:) I can't believe she is already 16 but I am so happy to call her my daugher! She has been a very good daughter and big sister.

Well, let me get this posted and get Katia her lunch. Her belly is totally off schedule today but she wants her chicken nuggets and fries now (they are Mommy's not McDonalds but they will do for now).

Love, Tracy

PS Check out the add ons right before the journal entries.




November 11, 2004 12:52 PM

Happy Veterans Day, Myron and to all the Veterans who have or are serving our country. THANK YOU!!!

We are having a nice day around here with the kids all home from school. Katia is enjoying herself!!!

I want to share something left in the guestbook that I think would be a fabulous idea!! I will post it and leave it above the journal entries until the end of the month.

Thank you so much Janice for this idea:)

Love, Tracy







November 10, 2004 2:47 PM

HIYA:) Thank you for dropping in!!

We are doing good today. The last few days have been so busy with the Katia Solomon Fund that it sometimes feels like our heads are going to spin off. I am really hoping that things will come together by this weekend so we can relax. Saturday is Sharayah's 16th birthday and that seems like it will be a nice but busy day. We are letting her do some things with a few friends and then have a sleep over here with 2 of the friends. Sharayah is about as much into her birthday as I have always been into mine. I don't know, unlike other holidays, your birthday belongs to YOU, unless you are a twin or something. Sharyah will graduate after she turns 18 so we will have two more birthdays with her before she is off to college! Where does time go? People can't believe I have a daughter about to turn 16. I am a bit hyper active I guess and although I FEEL beyond my age, I guess I don't look my age (I think I do).

Tomorrow there is no school due to Veterans Day so the girls will all be home together. Katia is very looking forward to having them home. These last few days, I haven't been the best playmate with her and she doesn't like that. Normally we can goof around a bit while nobody is home and we both thoroughly enjoy that! Katia told me today that I am her best friend and she likes that I play with her. Although some of that was meant to be reverse psychology, it was very sweet! I love it when kids are still the age they think we are cool. We have been blessed with 3 girls that really adore and take care of their parents.

My followup appointment for my mammogram has been moved from November 30th to November 15th so that is next week. I am eager to find out the results and have this behind me. Myron's surgery is near the end of this month, the 23rd and we look forward to him feeling better.

The Katia Solomon Foundation is moving along and we are establishing a lot with the foundation. Although it keeps us busy, it is a good kind of busy if you know what I mean. There are so many things that we see we can help with and get others to help with and we are going to put our total effort forward to getting things done. I will be working on Katia and my little project over the weekend and get the new site up and going to let you see our little "pet project". We feel it is something that is as urgently needed as keeping the Treasure Box full. The new project is another way of bringing smiles to more than just one face:) That is the only hint I am giving out. So, we are working on that. Yes, Katia is helping me put the site together. She is pretty creative.

We have a few projects going on right now. What is boredom?

Well, thanks for your prayers and checking on not only us but our listed friends:)

Love, Tracy








November 9, 2004 3:30 PM



I would have updated sooner but Katia just wasn't feeling like herself today. She has been a little on the quiet side, not hungry or too thirsty, tired and just not her typical self.

She took a nap and seems to be feeling better right now. She is sitting here next to me "recycling" a magazine of mine:)

As most of you know, the bracelets have again sold out. I am working on more. I may have a different style to offer in the next week. I appreciate so many of you ordering Katia's T-shirts, CDs and bracelets and sharing her story with your coworkers, families and friends:) Thank you!

As you know, Katia is my HERO! She is so strong and courageous in more ways than words can explain. She comes up and gives me a hug or kiss just when I need it and alot of times when I don't:) She is just so loving and sweet! I can't believe God put so much love into this little package but she is 100 percent packed with LOVE!

You can read about the Story of the Ladybugs and what inspired the Ladybug with Katia on her newest page;)

Well, we are working on a "little project" that we will share later:)

Love, Tracy




******



November 8, 2004 2:15 PM


WBC 4.4 (good)
HGB 11.8 (good)
PLT You ready? 162!!
ANC 1200 (low)

Aren't those great counts!!! I am happy to see the platelets going back up. I was just praying they would have stayed the same and not go down and look at that! They went up. See what prayers can do. I thank you all for keeping Katia in your prayers. I get a lot of comfort just in knowing so many people are praying and thinking about Katia and our whole family for that matter. God bless you:)

The ladybug bracelets are going fast!! Only 5 left right now out of the 15. Katia was watching me get them prepared for the post office and she is so happy you will be wearing the bracelet she is wearing. I promise I will get more up there soon so just keep an eye out. All the ones from the last auction and this auction are all going out tomorrow and the next day so keep your eyes out for your ladybugs in your mailbox:) Who knows, maybe 2 people that keep up with Katia and wear her bracelet, will run into eachother in a store or something and see the bracelets. That would be so neat!!!

All the totebags for sale in the auction are actually autographed by Katia herself.

She is getting good at writing her name. She can't do it alone but if we guide her and tell her draw a circle here, put a line here, etc. She does it and she just LOVES seeing her name all done:) I have a feeling when she can totally write it all by herself, her name is going to be all through the house! She really likes seeing her name.

Well before I let you go, I have a prayer request that was sent to me. It is listed above but I want to post it here also.

Kimmie
Kimmie is almost 11 years old. Her birthday is November 29th (so maybe some cards can go out). Kimmie has just struggled from the time she was a few months old and her history and story are so incredible. All I can say is to go read her page (the beginning explains her history) but now, at the last Neurologist appointment, they are saying there is nothing more they can do. Here is a small part of this journal entry;

From Kimmie's Mom (Mary)"Well back to the dr. appt. I took her to see the Neurologist for a check up. We talked about what all has been going on with Kimmie and she said she has no idea what to do for her anymore. She did lower one of her seizure medicines because of her losing the weight. She said she thinks all the surgeries were just too much for her body to get over. Remember Kimmie has had 5 surgeries since March of this year. With all of Kimmie’s seizures and the amount of brain that Kimmie has left her body just can’t handle it all. She said the only thing she could tell us to do was to take her home and enjoy her while we can. I have to say that between the Neurologist and her regular Dr. I feel like my heart has just been torn apart. This is one of the worst feelings knowing you can’t do anything to help your child get better. You just have to set back and watch them slip out of your life. I know that the worst possible feeling is yet to come."

So, I ask that you keep this family in your prayers and sweet Kimmie. There is a saying on her website, "Kimmie is like the butterflies. So beautiful and so very delicate." That seems to fit this little girl so closely.






November 7, 2004 3:52 PM

Hello:)

Well, we have been busy bees around here putting together a few bracelets and tote bags. I will get them up on the site tomorrow sometime I hope:) The tote bags turned out really cute!

Things are well here. We are watching the BUCS game and trying to just have an easy day. Tomorrow we have clinic in the morning and I am very anxious to get her counts and see what is happening with them. I think they should be okay though. She is somewhat bruised but her color is good.

Lots of love from the Solomons!!

Love, Tracy








November 6, 2004 11:26 AM

Good morning CARINGBRIDGE FRIENDS!

I know there isn't a lot of traffic on the site Saturdays and Sundays but I just wanted to thank you for checking in:)

Katia is doing very well. She is a little on the tempermental side because she wants to do certain things for herself and she can't or they go wrong and she has to do it again BUT, she is doing well:)

I am about to go on a hunt for more ladybug beads and IF I find them, I will let you know. Once I find them, I say within 24 hours, they will be back on the site.

I would love for everyone to have a little piece of Katia and our family in your house. It is like a connection and a bond:) Mavis, I appreciate your words about the "Rain" CD in the guestbook. I hope everyone will look at this as a gift to pass around to family and friends for the holidays and share not only the music, but Katia's story as well. So, if you haven't ordered yours yet, read Mavis's entry, in today's guestbook entries, and order yours:) I am hoping that, with the bracelets, people will notice them and, in doing so, hear about Katia's story and how they can help save someone's life. This has become our life mission in the Solomon Household.

Right now, things in our house are moving along, getting back to a more normal routine (which I SO appreciate!!) We still have many struggles we are facing each day but we are trying to get through those struggles and we appreciate the fact that we are all together to help eachother out. I am so lucky to have the family bond that we do have in our house. I know not every family has that and I thank God that we do. We need it!

Well, let me go find some beads so I can get them on the site:)

Love, Tracy







November 5, 2004 5:30 PM

I have more news!

BAILEE IS 100 PERCENT DONOR!!! Way to go BAILEE:)

Love, Tracy

PS Are you wondering how Katia is doing? Well, she has been very busy today with "school work" so she is very pleased with herself. I am proud to see her try so hard. She has a Leapster and she uses it like you wouldn't believe!! She has a couple of cartridges with it and she has learned to change them in and out and do most of the activities. She couldn't do near that much a month ago.

Me? Well, I have been doing bookwork a lot today trying to get some things straightened out. Not as fun as what Katia is doing but THANKFULLY, I get to work on my own computer at home, which allows me to check in on the other Caringbridge kids:) I appreciate that.

So, that is how we are doing. Look for an auction in the next couple of days, either bracelets or art pieces:)





November 5, 2004 10:58 AM

Have you heard the news?

Kody is home!!!


Love, Tracy








November 4, 2004 3:53 PM
Day 273

Well, as I type, Katia is here singing about dinner:) That is my baby!!

Things are good here. Her bruising is all healing up from surgery and the broviac site looks well, finally. Her next appointment is next Monday. Her doctor will be out of town but the main thing is to see what is going on with her counts. I have a few ideas to talk over with her doctor if the counts keep going down. I don't want it to be GVHD and get out of control.

Katia loves to help me cook so we just got dinner going and then I told her I have to come update and let people know how good she is doing.

I am trying to get some more bracelets up here soon and I will do them the same as last time. Also, all auction items were mailed and you should get them today or tomorrow. I know some have already gotten their items. I thank you for bidding:)

The bracelets that were won are being packaged Saturday and mailed Monday. I can't wait till you get them. If you get a chance to take a picture of you and your bracelet, I would love to somehow compile something showing people with their ladybug bracelets:)

Well, that is about it for now. Oh, Myron will be having surgery on his shoulder the 23rd of this month so I pray this helps him feel better and get back to being able to move his arm without the pain.

Love, Tracy







November 3, 2004 12:11 PM

Good morning. Katia and I stayed up pretty late watching the counts come in from the election. She thinks of it like a "race". But, that made for a long night and it took her a while to wind down, me too. When I go to bed at night I have a VERY ACTIVE mind. I think about things going on with Katia, other kids, families struggling through these tragic health issues, etc. I try to watch something on TV that will be funny or relaxing but the fact is, cancer has been a focus of our family since April 15, 2002. I can't avoid the subject so I, and my whole family, are determined to do what we can to help. That helps me be able to sleep better. I enjoy helping others. I enjoy helping much more than being helped. I enjoy giving much more than I enjoy getting.

Katia is here right now putting bandaids in and out of a box. I try to always keep character bandaids around like Pooh, Dora, Disney, etc. so that when she has something that needs a bandaid, she can be "happy" about it, if that makes sense.

We will be working on getting more bracelets put together. There are quite a bit of people that have emailed asking when they will be up. Soon:) I am trying to stick to more average sizes like 7", 8", 9" and then see if that goes well. I know a lot of people don't know their wrist sizes. These are stretchable so it is better to have one that is a bit big than too small.

Well, Ms. Katia has some plans for today to get out on the swingset. I try to hold off until the sun gets behind a certain tree and that puts her swingset in the shade. I am so glad she can get around and outside and do these things. We thought a LOT about those activities all those months in the hospital. One thing I had forgotten until last night was that Katia used to practice how she would say "Goodbye" to the nurses when we were going to be sent home. Well, she practiced that starting in September 2003 (never assuming we would be there till April 2004) and then when the day finally came, she mainly just stuck to her little waving. She was all bundled up with a blanket, mask and hat so it made it difficult. We had originally planned to go for chemo, go home and have a few trips in and out before actually having transplant. I know God works everything out for a reason. So, He knew why we were in the hospital all that time. I do have to say that by being in there, we definitely appreciate our home a LOT!!! I LOVE to walk on the grass in the yard, I LOVE cleaning and vacuming and having Katia right with me. I love cooking and having her in the kitchen chattering as I cook:) I can't wait to go out on the porch each day and sit down (usually for just a few minutes) and I so much appreciate being able to make a run to the store and seeing Sharayah and Tatiana come home from school. I remember there was a time that I just wanted to hear the school busses pull up. Funny, huh?

What is your favorite "Routine" thing each day? What do you appreciate most in your life?

I love to ask questions:)

You know me. We all SHARE this page. Love, Tracy








November 2, 2004 9:17 PM

WBC 3.6
HGB 11.0
PLT 86? Why they are dropping?
ANC 1100

Well, today ended up being a long long day at clinic. It was time for 2 transfusions and I hadn't remembered that so...

Then I brought Katia home around 5:30PM and went out to vote. I voted right before 7:00 PM.

Back to the appointment. Katia's platelets are continuing to drop and we aren't sure why. Her ANC also should have been higher so she got another dose of GCSF to boost that. It MAY be the GVHD acting up again since she is almost totally off her steroids. We will be down to 2mg (from 30mg) a day this Thursday. We will figure out a plan and try to keep things under control with her. Katia has been happy and feeling good today. She is very very clingy but I think that is becoming her normal thing with me. It used to mean she was feeling bad or something was up but now she is always attached. She was very happy to be coming home to Daddy and me going to vote. She misses him a lot when we go to clinic without him. I have to say, Katia is very very very LOVING!!! She is so huggable and loving with us.

Well, it is late and this has been a long day. I need to check on a few kids and go to bed. I will be refreshed tomorrow.

Love, Tracy







November 1, 2004 7:50 PM

I cannot believe how quick those bracelets sold. I want people to see those and ask what they mean and then someone can tell the story of Katia and how Bone Marrow Transplants can save lives. Remember the KSF saying, "Sharing Hope on the Wings of a Ladybug". Well, that is so so true!

Thank you everyone for your participation. We will have more soon.

We have clinic first thing in the morning and I am very curious to see what her counts have done. She has been bruising on her arms and legs? This is an ongoing issue with her even when her platelets were close to 300. Not sure why?

Well, I better go spend some FAMILY TIME:) That is precious!

Love, Tracy








November 1, 2004 1:09PM

Thank you for continuing to check on our family. I was thinking about how much love comes to Katia and our family via this website and I just had to say thank you.

First, I want to let you know that Sweet Connor H. earned his angel wings earlier this morning. He just celebrated his 10th birthday yesterday and so many people made the day special by sending Connor cards and packages. What a blessing. I am without words to describe what Connor's family must be feeling right now. Connor fought such a brave fight.

I also have a prayer request today for Katia. She just hasn't been feeling herself lately. It seems to be her belly and her head. I am not sure. Maybe it is just so much that went on last week and she needs to rest up. Her spinal fluid and marrow looked good so that is a relief. So, just please pray she will feel better and perk back up. She is still very bruised from all that went on last week. It was hard to find the photos of her costumes because I didn't want to post things that showed so much bruising but she is very marked up around her chest, neck and such. Right now, she is in bed with a headache and her belly hurts.

I did have my mammogram this morning so I should hear more over the next few weeks. I have an appointment with the general surgeon on the 30th of this month. There were some areas of concern on the mammogram so they will compare those with last year's films.

I need to go tend to Ms. Katia.

Also, please continue to pray for Angel Deseray's family as they lay her to rest today. Pray for Kody and his family as he continues to recover. Pray for Amy M. as she has been facing new complications and for Angel Cheyenne's family as they cope with the loss of Cheyenne. All of these links are above in the prayer request section. Also, Bailee is having her Bone Marrow Aspiration today (day 31 post transplant) to see if she is 100 percent donor yet following her Bone Marrow Transplant. I am sure they are very anxious for the results. There are so many in need of prayer.

Love, Tracy

PS The ladybug bracelets are almost all sold. There were 26 of them. We plan to make more of those beads become available. They are so cute!




October 31, 2004 5:08 PM

I just listed the Ladybug Bracelets above but I wanted to do an update:)

Katia has been having a good day. She is still being pretty quiet but she has played "dress up" today in some costumes (I am about to post pics) and she has had a great time with that!

We are going to hand out candy but we aren't going anywhere. Katia is eager to see kids in costumes.

Myron has gone to Deseray's service tonight but he should be back before long. I cannot imagine what her family is feeling right now.

Tomorrow morning, I go for my mammogram so I ask you keep this in your prayers that this will turn out negative for any problems.

Thank you so much and have a safe and happy halloween:)

Love, Tracy

PS I am working on the pics:)





October 31, 2004 12:35 PM

I have updated prayer requests above but I also want to ask you to pray for Kody today as things are just going very rough right now. Kody needs our prayers as well as Mom and Dad and family.

Love, Tracy




October 30, 2004 10:15 PM

Good evening:)

I just wanted to get on here and update that we have been having a good day. We made some ladybug bracelets and Katia helped. She likes putting the beads on:)

Tonight, however, she hasn't been feeling well. Her head and throat are bothering her and she is just really tired. She has been asleep for the last few hours. She did have some macaroni and cheese and water. I am going to wake her up in a bit to take her meds. I hate to have to do that but, that is the way it is. She was pretty quiet for the afternoon, just sort of walking around. Hopefully tomorrow will be better and we can play around with costumes.

Well, that is about all. I have been working on the drop down menus so I am about to update those. If for some reason, your child's site or your site isn't on there, and you would like it to be, please email me the site:)

Love, Tracy






October 30, 2004 2:21 PM

This morning around 1:00 AM, Cheyenne passed away. She will be SO missed by her family after she fought such a courageous battle. "Fly free sweet Cheyenne."






October 29, 2004 4:19 PM

WBC 2.5 (Down from 5.4?)
HGB 11.0 (Down from 12.7-Bleeding)
PLT 96
ANC 700 (Down from 2800?)

The counts aren't all that great and we aren't sure why BUT it seems the bleeding MAY be done. We ended up back in surgery today and what it seems is there was a clot that was breaking up. Katia had stopped bleeding but this clot had formed and broken off into the bandaging and was trying to leak out SO, she is all cleaned up and it looks much much better:)

We did the Dacluzimab treatment today after we came back from the hospital. Right now, Katia is walking around and barking because she is "PATCH" the dalmation from 101 Dalmations. She is quite happy to be home and that her broviac isn't bleeding. She really has had enough of being picked at and having bandages removed (that hurts).

I haven't had a chance to check any other websites today and I haven't been checking too many these last few days. Things have just been seeming to be nonstop. Hopefully we will have a quiet weekend:)

Oh, remember to set your clocks back on Sunday.

Well, let me finish up so I can get a few things done around here. Thank you for checking on us.

"Patch" says HELLO:)

Love, Tracy

PS We really would like to get another auction going so I would like to ask your help with something. I would like Katia to paint Wooden Christmas Ornaments and more of the aprons and tote bags. We will start gathering some crafts so they can get started. I am sure she would love to do this with her sisters. They work well together and that is a fun time when they do crafts together:) We are working on some other ideas right now but I was emailed that idea for the Christmas Ornaments and thought that was just a GREAT idea:) Another idea sent (thanks Kim) was to design and print up Christmas cards! I think we will work on that in the meanwhile. Katia loves to "design" things so she can work on that over the weekend and we can figure out how to get the cards going. I think it would be much more cost effective to just offer them from the KSF site so you can keep an eye out there for them.





UPDATE OCTOBER 28TH @ 1:48PM

Deseray passed away at All Children's Hospital around noon today. I would like to urge you to go by Deseray's site and instead of flowers, purchase one of her CDs of alot of the art she did while she was battling Leukemia. "Fly free sweet Angel Deseray. You will always be remembered, by us, with your sweet smile and bundles of endless energy and giggles."

If you would like to leave a message in Deseray's Guestbook, I am sure her family would love your words of encouragment.

Love, Tracy




October 28, 2004 12:46 PM

Good day:)

Well, we had another long night but today seems to be going okay. Katia bled through again last night and I kind of added to the dressing and that seemed to put enough pressure to stop the bleeding. So, tomorrow she will be rechecked. She bled through right around bedtime so of course, Myron and I kept checking her every 15 minutes or so to make sure it wasn't getting out of hand. I worry about her platelets dropping and then her losing a lot of blood. She was SO mad when we had to change her shirt because of blood. She thought we were off to the hospital again. Poor little thing, she had a bad day yesterday. I am just grateful for the spinal fluid being clear:) See, that can keep me happy for days.

Sharayah and Tatiana were very worried yesterday when they returned from school and they realized I had just left again because of bleeding. They were asking was this something they need to worry about or was she going to be okay. They have been through so many emergencies and things suddenly changing that they stay pretty on edge a lot of times too. This is their baby sister.

Well, I am trying to catch up on bookwork. There have been some changes to come about that have us in a big crunch financially so please just keep that in your prayers. We really need to figure out what we are going to be able to do with The Katia Solomon Fund and our family right now.

Please continue to pray and check on our friends. I appreciate when people email me when they see something is changing, for the good or the bad, with someone on our lists or not on our lists. Some days, things are too hectic for me to check on everyone like I am used to.

Love, Tracy






Prayer Request Update

Please pray for all those in the prayer request section but I have updates below and also a new one for Cheyenne UPDATE OCTOBER 27, 2004 Cheyenne is experiencing more and more troublesome side effects of her tumor. This is becoming very difficult for her and her family. Please pray for Cheyenne. She is such a sweet young lady and for her family who have stood strong by her all along.


Love, Tracy



October 27, 2004 6:18 PM

We are back home. Katia will probably run away if I tell her we have to go back to St. Pete over the next 48 hours... Hopefully things stay good until our appointment on Friday for her IV Dacluzimab treatment. At that time, the surgeon will again look at the site and if it is bleeding, then she will take Katia right to surgery to stitch it. BUT, we didn't have to pull off all the bandages again this time. We did put on a pressure bandage which means pushing down in an area that is very sensitive on Katia right now, that incision area. Katia wasn't happy. Then as we were headed out, the thing came unstuck so we went right back in to do a bigger job of it. Basically Katia ignored me the whole way home and talked to herself, then fell asleep. She has slept most of the day other than when she is being examined and such.

I had mentioned earlier that Deseray is back in the hospital and in critical condition. The family has been called in to visit and things do not look well at all for Deseray. Please pray for this little girl and her family.

Bailee is doing very good in New York with her Bone Marrow Transplant. Today is day #26 I think and she is hoping to get over to RMH soon there. I am sure they are missing home so much. You have to go see the picture on her page:) You go Bailee!

Our little friend Eleanor D. has been on 2SW at All Children's since September 27th when she was diagnosed with Leukemia AML. We went by to visit her and her mother the other day while we were there for Katia's surgery. She would really love some cheering up and I am sure her parents would love to hear some encouragment. They attended Light the Night (the parents) and they really want to do something for others going through all of this. Eleanor is 19 months old and about to start her second round of chemo. Tell her Katia sent you to say hello:)

Eleanor Duffy
All Children's Hospital
801 6th St. South
St. Petersburg, FL 33701


Now onto Kody News. Kody was up earlier today and talking (super!) but right now he is back asleep again so his parents and siblings are hoping to get in there and talk him back awake. Please pray for this family and for sweet Kody. He has been through so much and he is such a fighter! "Life is Tough but I am Tougher". That is what Kody says and that is so so true!


Well, I think that is about it for right now. I am going to go eat. Myron made dinner tonight and it smells so good. I always love it when someone else cooks. Last night, our neighbors made dinner for us and that was just so sweet. We had just been dealing with Katia throwing up over and over and Myron was thinking what he could make for dinner. I couldn't step away from Katia for 5 minutes before she would start throwing up again. Then, the phone rang and it was our neighbors saying, "Dinner is ready". Then about 30 minutes later, the phone rings, "Desert is ready". Thank you TAFTS!! They were the ones in the picture with us out in the hurricane:)

Well, I better go. I need to check Katia's site and make sure all is well. She gets mad when I even look at it.

Love, Tracy





October 27, 2004 2:40 PM

WBC 5.4
HGB 12.7
PLT 100 (down 50)
ANC 2800

Katia's counts all look fine, other than the platelet drop but our problem today is bleeding. I am going to make this quick because we are waiting for a call back to leave to the hospital, again.

During the night, Katia couldn't turn over without hurting so she basically didn't get much sleep. Around 6AM, I changed her diaper and she looked fine, a little after 6:00 actually. Then about 7:15, our alarm went off and Katia started moaning (I figured because of the alarm) so I got up and went over to get her changed and she had blood all over her neck, chest, shirt, ear, ect. That scared me. So, I found the source of the blood, which was the insertion site for the new broviac. She had two insertion sites because they were trying to find a new vein to use and then there is an exit site, which is where the broviac actually sticks out of her chest. Well, there had been a type of stitching, a bandage, gauze and another bandaid and that had all come off along with a big clot that had formed so it was just oozing blood when I found it. I cleaned her up and put on a new bandage with gauze and took her to the hospital. By the time we got to the hospital that had been saturated with blood along with quite a bit on a menstrual pad (maxipad) that I had put between her bandaging and her shirt. (NOTE: Maxi Pads are very absorbent a great thing to have in case of big emergencies-like car accidents or knife accidents. Okay, end of that lesson.)

So, in clinic, they were able to use the broviac for her labs:) Then we again, changed the bandaging and called the surgeon to come look at the site. Shortly there after, we saw the surgeon which meant pulling off that bandage (already saturated again). We were then sent over to ER for the IV team to come do a different bandaging and such. I asked if I should notice any bleeding through all they had done and they said no. They had used a time of gel foam plus bandaging and that should not only help clot the blood but also absorb a lot. Well, it is again soaked.

So, the plan now is to see if her surgeon can take see her again, today, remove the bandaging, clean everything up, put some new bandaging and pressure bandaging and see what happens. So, that was my phone so we are off to St. Pete again.

I am trying to just stay positive through all of this because of the news her marrow and spinal fluid are clear!!! That was just great news yesterday! Also, I know Deseray is back in the hospital in critical condition. All of this has taught me a lot of perspective. I just hate seeing Katia go through so much and have to keep having these bandages pulled off of her. They hurt and they leave her very very marked up and sore. So, please pray and I will let you know later tonight what happens.

Love, Tracy






October 26, 2004 6:04 PM

Hello:)

Well, this has been a long day and not too easy of one BUT we are home.

Katia had her procedure this morning. We weren't sure if we were coming home or not because she broke out with quite a bit of petichiae when they tried to place her broviac. The old one came out fine and now she has her new one in. She has a lot of big red spots (like she has had in the past) all over her neck and chest. BUT, it was decided she could recover for a while in Short Stay and then come home. So, that is what we did. She got pretty sick on the way home so we had to pull over and clean her up and take care of her a bit. Since we have been home she has either been a sleep, feeling bad, or throwing up BUT she is drinking and has just had some soup (which seems to be staying down).

Her blood pressure and temperature are fine.

On to the good news! Her spinal fluid looks very good!!!!!! Man, was that a relief to hear. All that waiting just made the worry build up and the anticipation but it was clear. She got her dose of ARA-C chemo in her spine and now I feel like I can breathe easier. I really feel that gives her much better chances at staying in remission. She feels pukey but I am sure, over the next few days, she will start to feel better.

We have a clinic visit in the morning to check the broviac site and see the bleeding and spots. (Katia doesn't know about that yet) and then on Friday, we will go to clinic for one of her IV transfusions (put that new broviac to use).

I appreciate so much your prayers and your concern and I will keep you updated on her progress. I think this is going to be a long night...


Love, Tracy


Please keep Kody in your prayers. He is in a light coma but he is able to respond by squeezing hands so he can hear people. Kody is such an inspiration by the amount of zest he puts into his fight! He amazes me.








October 25, 2004 6:40 PM
Day 263

Okay, are you ready for these counts?

WBC 4.6 Normal
HGB 13.6 Normal
PLT 150 Normal!!!
ANC 2000 (I will explain below)

Good day:) This was the best "report card" Katia has ever gotten I think so we were very very very very pleased!!

Katia will go in tomorrow morning at 6:30 AM, surgery will be around 9:00 AM and hopefully she will come home around 4PM or so. She is looking forward to her new broviac because she got "poked" again today but she hardly cried. She is so brave!

Okay, let me explain the ANC. I get asked about Katia's immune system a lot and why she still has to wear a mask if this number is so "normal". Well, your immune system is not just White Blood Cells but they are made up of also T-Cells and B-Cells. These cells are your anitibodies and Katia is very low on these. We are very glad she is producing normal amounts of White Blood Cells, that shows her marrow is working:) But, she hasn't had a chance to build up any antibodies. She does get an antibody treatment once a month that gives her small amounts and we will check to see how that is working when we look at her marrow this time. There will be a lot of studies done on her marrow now and probably again in February and so on. Katia has no immunizations, no antibodies to the colds and such she has had in the past or the chicken pox. All those things would be new to her. As we go into Flu Season, Katia runs a very high risk of getting sick if she is exposed to it, except that instead of ending up in bed, she would end up very sick, in the hospital, probably fighting for her life. I don't mean to be too blunt but I want this page to be informational and informative and really that kind of sums things up in an easy to understand way. I read books sometimes on transplants or even leukemia and such and I think, "That could really be a lot more simplified." I try to find simple ways of explaining things. You want to hear how I explain it to Katia? You remember when I told her the GVHD rash on her skin was because the good blood and bad blood was fighting and they kept hitting her skin... ? Well, that fight is still going on. The problem is some of those little soldiers haven't read the books on how to fight EVERY cold or EVERY sneeze, etc. So, we have to wear the mask while they catch up on learning how to fight all these things and that could take a while:) That worked for her. She just looked at me. This was a few weeks back when we were headed into the clinic building. I always stop outside the door of the main building and put on her mask. She decided to question me about it and we were running a little late. I hate to just say, "Because I said so..." so that was the best I could do in the little preparation time I had:)

Well, I am sorry I didn't update earlier. I actually snuck in a nap today, with Katia:)

I have checked on Kody and it seems he is doing as well as he could but what do you expect from Kody? He is such a fighter! He has a temperary page they can update from the hospital so the link above is to the temperary page:)

Love, Tracy



*******


Thank you to the following people for helping us raise funds for our team, "Katia's LifeBugs".

Our Light the Night fundraising ended up over $2000.00!! We went over our goal:) I thank each of you for your help.



Kathleen O., Leigh and Michael T., Phillip and Liz V.,Theresa A., Eric and Judy B., Sabine S., KSF, Pamela C., Joyce and ^Mike^ M., Lynn P., Angela R., Salina D., Kate W., Matt A., Kim W., Laura W., Margaret B., Jan R., Nancy L., Julie P., Karen G., Rhonda C., Kathryn M., Diane A., Diane L., Carly J., Janice P., Jill R., Terri G.,Martha P, Nancy O., Amy D., Janice J., Susan and Kenneth B., Kellie B., Tammy and Nicholas R., Eileen J., Julia S.,Sabrina M.,Elizabeth H., Laura H., Suzanne C., Christine and Cathy Clasen, Cara P., Laura A., Matthew N., Mary K., Debra M., Robert and Debra N., Jen W., Joyce S., Barbara F.,Lindsey M., Vanessa C., Merritt B., Joyce M., Mary B.,Karen V., Denise H., Kathy and Richard M., Laura C., Kim R., Debbie N., Scott U. and The Jerry Ulm Dodge Dealership:)






October 24, 2004 1:51 PM

I want to first thank everyone that showed up to support our team at Light the Night last night!! I can't even begin to add up those that came out but I just want to say, "THANK YOU!" We had so many friends and family show up and some that met us for the first time that have kept up with Katia via the website. Dr. Petrovic and her family showed up which was so nice since Dr. Petrovic has had such a big part of getting Katia out there! It was just so fantastic. I wish I could have put the whole night in a bubble to save for later:)

Not much to update about today other than WE SLEPT IN!! That was a big night last night and we came home, took baths, ate and sacked out in bed!

What was Katia's favorite part of last night? Well, I would have to say she was quite happy with her white balloon. I wish we could have seen more white balloons out there but there were maybe 10, if that many. There was a great turn out of people, probably over 1500 and they raised over $100,000.00 which is super!

Myron performed, "Rain" and then he sang "The National Anthem". Katia was right in front clapping to "Rain". We did our walk and then we came back and they had a celebration for Survivors. I met a lot of people I have only heard about. I wish I had more time to talk to people but things were very very busy and pretty rushed through most of the night. There were quite a bit of people that were taking pictures so if you took one, I would love for you to email me a copy:) My email is at the bottom of the website.

All in all, last night was a night of celebration and our family definitely enjoyed getting Katia out there and celebrating her life with everyone else!! It was just super!!

We go to clinic first thing in the morning and then Tuesday, at 9AM, Katia has her surgery, bone marrow aspirate, spinal, etc. We should be able to come home Tuesday if all goes well with the broviac placement and spinal chemo. I think we will.

Please pray for Kody as he goes through his brain surgery tomorrow. Pray the doctors and his parents can have clarity of mind as they have so many decisions to make. We celebrated for all the kids we have known and those that we lost this year also. The little ducky on Katia's banner is for our little friend Angel Jalen who is no longer with us on earth, but always in our hearts! We walked for everyone. I was thinking how I wish Angel Casie could have joined us. I could just picture her smiling and just pointing out all the people that showed up to walk. Since Katia was diagnosed, our lives have changed so much. With all of that, we have also met so many wonderful families and others fighting these diseases. Each one leaves a special place in our hearts and will always be remembered. As I saw how happy Katia was carrying her balloons, I just wished so many of our friends could have been there with theirs. I want to name people but there are so many. I know they were there in spirit.



Thank you everyone for helping us raise our funds!!



Love, Tracy






October 23, 2004 3:14 PM

Hello:)

We are SO ready to go to Light the Night! I told Katia yesterday that she had one more "sleep sleep" before we could go and all day she has been saying, "I had my sleep sleep" like, "Let's GO!"

She really wants that white balloon and I so much want her to have that white balloon. I was very down last year when we couldn't go so this is a BIG accomplishment this year.

We will be walking for many reasons but our main one is in celebration of Katia's life and all she has gone through this year. We want to be out there, walking with her, every year!!

Love, Tracy






October 22, 2004 4:08 PM

Katia is so into going to Light the Night! She is very looking forward to holding her balloon and seeing everyone. She doesn't get out much:)

I must remind you to pray for KodyBear. They have really been thrown a hard week this past week and they will be in the fight for his life now. I know they have a lot of decisions to make for his treatment and they do not know what tomorrow will hold. My heart is just ripped for them. His mom has been such a huge support to me in the past and always remains a support to me.

Also, as far as Katia's surgery. It is scheduled for Tuesday at 9AM. Of course her lab levels have to be right for this and this is always a problem for us so this weekend, it is important for us to keep her potassium and magnesium under control.

Katia wants to go out on her swing. She has been very active today. She knows a new broviac will mean soreness and bruising but I explained this time, it doesn't mean she is about to lose her hair again. That was a concern of hers that she wasn't telling me. When I told her, relief just showed all over her face.

So, please pray for us over the weekend that we can have a good turn out to Light the Night (you are invited to walk with us) and that we have a good "health weekend" and can go as scheduled for the new broviac.

Please also pray that the spinal fluid and bone marrow looks great (testing on Tuesday during surgery) and that she will do well during surgery and get to come home.

Thank you so much for all of your prayers and for your prayers for our friend, Kody:)

Love, Tracy







October 22, 2004 12:11 PM

WE MADE OUR $2,000 GOAL!!!! I AM SO HAPPY!!! THANK YOU TO EVERYONE WHO HELPED. THIS IS GOING TO BE WONDERFUL TOMORROW NIGHT!!

LOVE, TRACY






October 21, 2004 4:54 PM

Okay, I am over it now:)

There are many more things to worry about in life...

Love, Tracy




October 21, 2004 3:18 PM

Again I started an update and walked away. It has been one of those days.

Please keep Kody in your prayers as he will be having major brain surgery on Monday. I am sure they will appreciate your prayers and encouragment. This has come on so suddenly. Just last week, he was out on his skateboard and now he can barely walk. Please please pray and pass this request on everywhere you go.

On another note, we know how prayers are answered, so this year, Katia WILL be attending Light the Night. If you would like to join us (info above as to time and place) please let me know via email at TMSOL87@aol.com.

Myron's brother just left earlier this week to return to the island where Myron's parents and family live. We took a bunch of family pics on his digital camera so they could see Katia, etc. The camera was stolen!!!! He had just gotten this camera. That just makes me so mad. I don't think people know what some things mean when they just up and take them. Anyway, that made me mad. I don't let many things, that aren't life threatening, get to me but this is just plain inconsiderate! Okay enough about that. I will drop it. I know God will take care of this situation.

Well, I better go and actually post this message.

Love, Tracy








October 21, 2004 12:27 PM

First, please keep Kody in your prayers. You can visit his website to learn more details but he is scheduled for major brain surgery on this coming Monday. His parents and doctors are extremely concerned over the sudden changes he has been experiencing. His site is almost totally gone in the drooping eye and he can't even walk without assistance. Last week he was out skateboarding and laughing and now all of this. Please please pray and pass the request to all you know.

On to other news on a brighter note. We all know how prayers have helped Katia. Well...

I am so looking forward to Light the Night! This is going to be great to be able to participate this year. Katia is looking very forward to being able to wear her shirt and carry her balloon. Myron will be singing out there, "Rain" and the National Anthem. I don't know how to explain the emotions behind the fact of actually being there this year after having gone through so much over the last year. We have lost many friends over this last year and we will be walking in honor of them too. We will be walking for so many reasons but Katia is our center. She is so strong and such a fighter and her fight has just brought us to the place we are today. We are also so grateful for everyone that has been a part of us having Katia here today and for supporting us through prayers, encouragment, donations to KSF and so much. THANK YOU!

Well, Katia is wanting her daily "Mac and Cheese fix" so I better go finish that:)

Love, Tracy





October 20, 2004 9:13 PM

I thought I should come on for a quick update. First, the surgery is being canceled from Friday to early next week sometime. That way, Katia can participate with Light The Night. If you are planning to participate and walk with our team, please let me know via email (TMSOL87@aol.com). I would also need to know what size T-shirt you would wear.

I want to thank each of you for making the auction a great success. That Ladybug Tote Bag may have to be repeated on another auction:)

***October 21, 2004 9:47 AM*** I started this and never finished last night... I am so sorry. I just realized that! Love, Tracy








October 20, 2004 3:49 PM

The AUCTION is just really going good right now. I see a lot of last minute bids coming in. Thank you! We really need for this to be a success and you will be happy with what you bid on and WIN:) Trust me! It is a "Katia Original" and someday maybe this little artist may become BIG so...

Thank you:)

Love, Tracy






October 20, 2004 11:20 AM

URGENT PRAYERS NEEDED FOR KODY BEAR!!!! THERE IS MAJOR CONCERN OVER HIS SUDDEN CHANGES, BLURRED VISION, RUNNING INTO THINGS, DROOPING EYE, ETC. PLEASE OFFER YOUR PRAYERS. THANK YOU.

Things here with Katia are okay. I am just now realizing (actually Myron did) that if we have our procedures on Friday, what will happen with Light the Night? Well, Myron will definitely go because he is singing and the girls would go BUT if we are admitted or if Katia is not cleared to participate, again, than of course we wouldn't be able to. I am trying to find out about that right now and I will update later.

Also, there are only 4 hours left of the AUCTION so get your bids in on these "once in a lifetime" pieces:)

Also, for those of you who have already ordered your "Ladybug and the Dragon" (Katia's story) Book, those will start being mailed out this month. So keep an eye out for it:)



Love, Tracy







October 19, 2004 9:14 AM

Just one day left for the AUCTION. Make sure you stop by and pick out your favorite item to bid on. The little Ladybug in the Grass totebag is the Hot Item I guess:)



Good morning. I just finished reading through the guestbook and checking emails and I thought, before I walk away, let me update:)

Katia is doing well this morning, she is eating as I type. She eats a LOT and I always think back on the days of no eating. I don't think I will ever forget the feeling of just pleeing with my child to eat. It was breaking our hearts that she wouldn't eat or drink because EATING is Katia's favorite thing to do. We have SuperWalmart by our house (Katia has never been inside yet) and she sends me there a LOT! I hate to tell her I can't get something so we definitely prioritize her food wants and get those first. Yesterday the trip was for Macaroni and Cheese and Oatmeal. That is two things I used to plea with her to eat in the hospital. Myron wanted her to eat oatmeal (a very healthy food) so bad that when she finally did, you would think he won 10 million dollars! That just made his day. Myron and I are pretty easy to please throughout all of this and that has definitely helped. If someone ask, "What would just make you very happy to be able to do?" I am very simple. I like to be able to go out to Chili's and have lunch or dinner with Myron. I mean that really makes both of us happy to do. Anyplace really for that matter. We live in an area that everything is within 5 minutes away.
I also like to be able to take the girls there one at a time to have a little one on one time with them. The other day, I met my sister there and we never get to get together, just the two of us. We are 18 months apart in age and between the two of us we have 7 children ages 16, 13, 12, 7, 5, 4 and 3. It is hard to get away:) I try to meet up with a good friend of mine every week or so and that is the perfect place to meet up with her too. We can get together, share a few laughs, talk about our kids (sorry kids) and our husbands (sorry guys) and so forth:) Those are the things that keep me going along with Katia's little report cards.

Okay, let me talk about another email. Someone said how draining it must be to take care of Katia full time. Well, I do go to bed at night feeling about 30 years beyond my age but I can honestly say that Katia makes the days go by in such a good and sweet way that I feel HONORED to be able to be with her around the clock. She is smiley and happy and she gives out hugs like you wouldn't believe. I call her "Mini-Me" and she calls me, "Grande-Me". We are so alike and we are just able to carry out our day taking care of things around here, taking care of her needs, and during all of it, we can talk and share laughs, etc. Sometimes I do wonder if her umbilical cord was cut at birth or not because she is literally like my shadow. If I walk in the kitchen and turn around, she is there looking up and smiling at me. This goes on all day. That is the nice thing about her being able to walk, she is much much happier. She is still pretty slow and she kind of shuffles along but she will come along saying, "Here I am, I'm coming..." and it is so cute. Katia's health has brought a lot of heartache because of having to see her suffer and struggle but her life has brought such shining and loving moments that I can overlook the bad and enjoy the good. Her favorite thing to do right now is get me out on the porch, sit down, and have a "talk". She talks a lot with her hands and motions and she can go on and on and on and on.... She will tell me, "Bring some coffee" like we are going to be occupied for quite a long time.

Well, I better move a long. She is doing very good with potty training (not at night) but it does keep us making a LOT of trips to the potty. She is beginning to tell me when she has to go and she is happy to announce what she has to do.

I have received a few emails about Sharayah's upcoming birthday and what she likes. Sharayah will be 16 and she likes to shop so of course, gift cards are always good but Sharayah also loves to read good books and other things pretty age-typical. I am sure she will also enjoy guestbook entries on that day:) November 13th. They do check the page on and off.

I have one request here that would make someone very very very happy:)

I have shared Jackson's story with you before. He has an unknown Neuro-Muscular Disease. He is big on going to check is PO Box but there isn't mail there right now. I know how mail lights up Katia so I wanted to try to get Jackson some HAPPY MAIL!!!
Here is his address. I have followed his story for quite some time:)


JACKSON DICKSON

P.O.BOX 952

WILMER, ALABAMA 36587


Thank you in advance:) Maybe you can drop by and sign his guestbook too. Tell him little Katia sent you over his way to say HELLO:)


Love, Tracy











October 18, 2004 6:19 PM

PRAYER REQUEST (IT IS ALSO POSTED ABOVE)



Jamie P

ADDED OCTOBER 17, 2004 James is 4 years old. In August he went into the hospital to have a CT done to find out why he had been having such bad headaches that they were waking him up at night. Early September results said the scan looked "abnormal" so he needed to be seen by a neurologist. All this time, he is still having severe headaches and sickness. During all of this, the Florida Hurricanes were happening causing the family to stay in a hotel and deal with the whole "Florida Hurricane Situation". On October 4th they found out that Jamie, did in fact have a tumor right behind the sinus area of his brain. The next thing to find out is what could be done about it. On October 11, the news came in that the tumor he has is Medulloblastoma.
OCTOBER 17, At this time they aren't sure yet what the plans are to treat Jamie. He has been having very high fevers over the last few days but he is not one to complain. He tries to hold things in. All of this for a 4 year old. I know one thing we can do is to mail little Jamie cards!! He loves cards and with the holidays, there are so many cards a little boy would love. He wants to go back to school so maybe this will help take his mind off of that until he is able to go back to school. He loves to hear the messages from his guestbook. His Mom just wants prayers for her little trooper. Thank you:)

James Pugh

P.O. Box 42

Silver Springs FL 34489







October 18, 2004 2:00 PM
WBC 3.9
HGB 13.1
PLT 116 (continuing to go up)
ANC 1200 (not sure why this dropped)

So, we are home. Katia wasn't happy because she had to be "poked" today to get her labs drawn. We tried and tried to get that broviac to work but no luck.

So, the plans now are to go in on Friday for surgery to replace her 2 lumen (2 lines) broviac and get a brand new, one line broviac. Hopefully 1/2 the lines will mean 1/2 the trouble. Of course, in the meanwhile she has another appointment which she will have to be "poked" again for and then also again prior to surgery so she will be VERY VERY happy to have a working broviac again.

Her labs looked okay as far as the potassium, magnesium and such. A few things are low but they are definitely improving.

Okay, where is a bright side here? Well, we are home! I am always thankful to drive back across that bridge:)

Someone, in the guestbook mentioned music on Katia's page. I haven't placed anything nor do I hear anything in the guestbook or on the page. There have been a few times that people signing will attach music but I have asked that not to be done and it hasn't so, if you can let me know if anyone else is hearing anything and if so, what is the song? Then I can search it down and find out what is going on.

Just a note:

The AUCTION only has another day or so bid bid bid:) There is still one donated flower arrangement, that was donated to the auction, that hasn't been bid on. These items were donated for the purpose of auction to help raise money for KSF.

Let's see what else? Our plan right now is for Myron to go the the NMDP Gala in Washington D.C. There are just too many things going on for me to really feel comfortable about going. Katia will be starting back on her spinal chemos, I have my Mammogram and followup in November and I just would be more at ease to be here. I also know that Myron is very very good at representing both of us and KSF in the best way. He has done so much, since KSF began and he continues to try to reach out each and everyday. That is what Myron does when he gets off work each day. That is when he goes to any meetings or anything dealing with KSF. He goes from 3:30 AM until around 11:00 each night. I am very proud of Myron. Can you tell? He has an upcoming appointment with the surgeon about his shoulder. That bridge has been crossed or decided yet.

I also ask that you keep Olivia's friends and family in your prayers. This is such a difficult time for everyone in so many ways. Olivia touched so many lives and through her poetry, I have a feeling she will continue to touch lives for many years to come. She wrote a lot of poetry and it is just so inspirational and insightful for someone of her age, for that matter, most adults. She will truly be missed. Olivia's funeral arrangements are on her page in the guestbook for those of you who are looking for this information.




Love, Tracy






October 18, 2004 7:20 AM

Good morning:)

We are off to clinic in just a moment but I wanted to drop in here and ask you for your prayers today. Katia just hasn't felt too well throughout this weekend, there is more bruising and now to top this off, her broviac just doesn't work (nothing can go in or out). Remember last Monday, one line didn't work but now the only good line has decided to do the same thing. This will probably mean they will need to replace it since she is still on her IV treatments of Pentamindine, Dacluzimab and IVIG plus the regular labs she has done. So, I am not sure what this week has in store for us. There are quite a bit of labs to be done today, since she hasn't felt well, to check the status of her blood and such but we have to be able to draw them. I am assuming we will have to do an IV line today but I am not sure. So, what is my prayer request? Well, that today will not be too stressful or too painful and that Katia will feel better.

Also, her potty training is moving alone well:) That is a great thing!

Love, Tracy







October 17, 2004 12:01 PM

I wanted to share with you that Angel Olivia Ceraolo passed away yesterday around 1:30 PM. She was surrounded by all of her family. Olivia had battled Chondroblastic Osteosarcoma since May 2003. She had just turned 16 on September 9th. Olivia fought a very hard battle and she did this with such grace and compassion while still showing a great zest for living. She was peaceful at the time of her passing, with the help of Morphine. I know her family is missing Olivia beyond any words I could share here.

"Fly free sweet Olivia. You will always be loved and remembered as the beautiful and courageous young lady you were."

Love, Tracy



October 16, 2004 10:30 PM

Katia is feeling quite a bit better. She drank some water and kept it down and she slept for a little over an hour. Thank you for your prayers!! Love, Tracy



October 16, 2004 7:11 PM

Katia needs some prayers right now. She feels pretty lousy, the bruising has increased and she is throwing up. She is complaining a lot about her throat so, please pray. Prayers always help in one way or another. I will be back later this evening if I can. Love, Tracy







October 16, 2004 11:20 AM
Day 254

Good morning;)

I really meant to update later last night but I never got back to it. The girls were putting on a "show" for me. I have to say, they are very funny girls and they do very well together. I have been blessed by that. They have been through an awful lot this last year, and although they aren't perfect, they are the best! Sharayah will turn 16 years old on November 13th. Yes, I have a 16 year old:) Anyway, the plans for her birthday aren't written in stone but a lot has to do with finances. My kids definitely have learned to understand and respect money situations. The fact is, their parents have seen a lot of problems we would like to help make better and these girls (especially Sharayah and Tatiana) are aware of this. It isn't always easy but when they are asked to help in some way (like helping prepare things for auction) they do. Sharayah is getting to be very artistic and has a lot of great creative ideas. Tatiana is our "ever-so-happy-can't-wipe-the-smile-from-her-face" type of child. That keeps things more easygoing around here. Everybody in this family has a function and something that is of great importance in keeping things running smoothly. We just all "click" together. Of course, Ms. Katia is the center of this little universe! She knows it and takes great pride in that. She is the most lovable baby I have ever known and she just likes everyone happy happy all the time! She watches out for her mommy like a hawk. She doesn't like it if I get upset or sad in any way. I must get (no exageration) 100 kisses a day from her! Am I lucky, or what!

So, I have 2 questions for you.

1. What just makes you have the happiest day!


2. Who is the person, in your life, you respect the most? Why?



Well I guess that is really 3 questions...

Anyway, I have something else I thought I would ask of "Katia's fans". What would you like to see in the next auction? I will try to go through the ideas and see what is most workable and do that for the next < ahref="http://www.katiasolomonfund.org">auction. We are really working on a few goals with KSF and one of them is working on its Tax status. This is costing quite a bit more than we imagined but we are making that a priority. It will help us, hopefully, make this foundation grow so we can do more things with it and be more steady on being able to help people. Right now, KSF is in a phase that WE are having to keep it going, which is basically impossible BUT we are GOING to make this a success because we just know we can. KSF was not just started for Katia's sake, it was started as a very long term plan that Katia will someday be able to go out and raise funds herself by doing speaking engagements on how her life was saved. What better person to do that than the future "Dr. Katia"? Someday, she will be even more a part of saving lives than she already is.

My house has gotten very very quiet? Maybe I should go see what they are all up to...

Love, Tracy






FURTHER UPDATE 3:32 PM

I have updated a few of the prayer request above that really need your prayers.


October 15, 2004 10:45 AM

Good day:)

We just had a huge amount of rain all the sudden. I didn't expect that but then I didn't watch the news this morning either. Katia thought it was another Hurricane...

I have a prayer request (although there isn't a website) for a little girl, Hannah. She has Wilm's Tumor. Hannah is 4 years old. There are spots on her lungs although recent chemo seems to have reduced and cleared those. Her scan last week was good. Hanna will be having surgery to remove the tumor and her kidney and ureter on the 29th. The tumor was the size of a grapefruit and couldn’t be removed without risking that it would rupture and spill into her abdomen. Chemo is reducing it’s size making surgery possible. Her parents are asking for prayers for their baby and their lives.


Now, she is walking around singing and playing. I love to see that!

For some reason, she is pretty bruised up today so I am eager to see the platelet count on Monday. Hopefully it has not dropped. My other concern is her night-sweats. She wakes up upset because of being sweaty. At first, I think something is wrong because of the way she is whining but then finally I will get it out of her and I pick her up and she is right. She sleeps on a cotton pad and wears cotton shirts but she still sweats. She won't wear socks at night so she is just in a T-shirt and her diaper. She has been "night-sweat" free for quite sometime and now it is back again. So let's pray it is nothing to be concerned about and it will pass.

Well, she wants me to go out on the porch and I need to go dry things off that just got wet. I really missed cleaning my house, while we were away all that time, so I enjoy doing things now. Of course, the first thing I do each morning? VACUUM!

Also, I updated the prayer request area just now but I wanted to post here, the 15 year old boy that I added yesterday, RJ, passed away yesterday afternoon at All Children's Hospital. Please keep his family in your prayers as well as the staff, and many people, that was touched by RJ during his time in treatment.



Love, Tracy


October 14, 2004 11:10 AM

Good morning. I just want to jump on here to let you know the AUCTION is up and going.

We are doing okay here today. Katia didn't feel too good for most of yesterday but she is feeling better today. She has been having a lot of sweating at night and that bothers her. She says it makes her wake up and she can't sleep. She hasn't had this problem for quite some time, since right before she relapsed in August 2003.

Her walking has greatly improved! She is walking around without the baby doll in her stroller. She is "independent". She likes that word. She is also TRYING on her potty training. Yesterday was not one of her better days but today is going a lot better.

We have a mess on the back porch carpet so she is going to go out there to help me clean it up. I have some new pics to post but I just LOVE the little Chef ones! I will wait till the end of the day or tomorrow to change them out.

Also, can someone from the school, that had all the 7th graders sign yesterday, email me? I would love to thank you for sharing Katia's story and find out how you heard about Katia's story. I thought that was just great to have all the students to sign the guestbook. We LOVE to hear from people in the guestbook (yes, even if you think we don't know you). It is a big highlight in our day to read comments from others.

Well, we better get to cleaning so we can finish our housework. Katia is my "Mini Me" and she helps me with everything during the day. I really missed that and I enjoy our times together so so so much!!! It is nice for her to have the freedom for her to walk, unmasked, throughout the house!

Love, Tracy










October 13, 2004 12:20 PM

Good day:)
This has been a pretty long morning around here. Katia just isn't feeling the best right now so I ask you pray for her (I know you do anyway).

I also have another prayer request to add here.



Baby Fieldon

October 13, 2004 Fieldon was born with a rare form of S.C.I.D.S (severe combined immune deficiency syndrome) and had a stem cell transplant in August. He is 6 months old. Fieldon had a seizure during his clinic visit yesterday and after a code blue has been admitted to PICU, intubated and sedated.



I know we all know how much prayer helps. Some people say that prayer doesn't always cure people or seem to make the health better but prayer is for many reasons. It is for improvements in health and happiness but it is also for encouragment and the strength for families facing difficult situations. Prayers do so much. We may not always get the answers we are seeking but the power of prayer is more than words can say.

I ask that you also keep our family in your prayers. Some days are better than others and we know that is life for each of us. There are many days that Katia doesn't feel well and the stress of worry just really takes over. I pray for God to ease that stress and let me enjoy the here and now and face each day and hour as it comes. That is the only way we can get through this. I have learned to look away from the "big picture" of things sometimes. I would get too worried. I also ask that you pray for our family finances and the Katia Solomon Fund. The end of the year is nearing and we have some things we need to accomplish before the end of the year. KSF has been a lot more difficult to get off the ground than we imagined and there is just so much we want to be able to do and help with. We KNOW many areas of help we could provide but we just need this organization to grow and grow. So many of you have been a key part in the help we have been able to provide and I thank you for that. I thank each of you that have ordered the CDs (and I hope you are enjoying them) and I mostly thank those of you that leave such encouragement in the guestbook. That guestbook is read by so many people and I know so many people, including us, benefit from your kind words. There are a lot of new families facing these diseases and they are encouraged by what they read here, even if they don't have a Caringbridge site themselves.

So please continue to pray, encourage and check up on little Miss Katia. I know she has great things in her future!!

Love, Tracy






October 12, 2004 1:11 PM

I am going to make this quick because I need to make Katia her lunch:)

I had my OBGYN appointment:) *That is out of the way now! I need to schedule my next mammogram to check on some new lumps and see the general surgeon again. This was expected to me. All will be fine:)

Katia spent the morning with Daddy so she didn't mind, too much, seeing me leave. She asked me if I was sick and I said, "No, I go to the doctor so I don't get sick." She just gave me a funny look.

She is doing very well with her potty training and she is quite pleased with that. She still doesn't want to give up her diapers and go to painties. They are like a comfort zone to her like the "brown shirt".

Well, she is sitting her sighing over and over so I better get a move on. I want to thank those of you who have emailed asking about The Katia Solomon Fund and what you can do to help. Donations are the best way to help since we work on different projects and try to help, financially, different families. Right now, we will have to take a pause on things because we haven't really had the time to raise funds or sell CDs like we should be doing. We really need to get The Katia Solomon Fund back to being more active. We were recently able to help with Deseray's family but a lot of for the most part, that came from us since KSF hasn't been building the way we would want. So... donations are the way to go right now.

Thank you very much for your prayers and for keeping up with Katia, the family and KSF. I left a CD with my doctor's office today so they could listen to it and of course, I put a note in their ears to register with the Marrow Registry if they hadn't already. They know about Katia but don't follow her regularly. I am sure a few of them will be on this site more often now. One volunteered her time whenever KSF is doing something that we need more "working hands" at.

Well, Katia is going to sigh herself into dizziness so I better go.

Love, Tracy










October 11, 2004 1:40 PM

WBC 3.8
HGB 12.9
PLT (Drumroll please) 90 !!!!
ANC 1700

Did you see those platelets? Last Monday, they were 48 so something good has been going on!! I am so pleased with those counts. I was hoping for 50 but 90, WOW!

So, we are going to schedule an MRI and CT Scan of her eyes, brain, sinuses, etc. and then move ahead with the Spinal Chemo probably next Monday or the following Monday. That will be a big relief when we get the first results back from her spinal fluid. It hasn't been checked since January, before transplant.

Katia has been having more eye pain but we missed our eye appointment today because we had to deal with the issue of one side of her broviac not working. We still couldn't get it to work after letting this fluid (Broviac Drano) sit it is for quite some time so we left it in to see what will happen over the next week. If it doesn't unclog, we will just consider that line closed for business. She will still have one good line to work with and that is enough to do her IV meds and get her labs drawn from. I really wouldn't have to put Katia through surgery to get a new broviac unless they say it is absolutely necessary. Right now, it isn't necessary:)

Her ear looks just great again so that is also good news. Bye bye ear infection!! It isn't bothering her at all. Her issue today has been her right eye and that didn't start bothering her until this morning so we will see what happens for the rest of today and maybe call the eye doctor if it seems to get really bad. Other than that, I want to see what the scans show is going on with the tumor in that right eye. She does have a slight bump on the eye lid area so... we will see.

I had a few other concerns today but the news of her platelets going up made me feel SO MUCH BETTER!!! Something is going in the right direction:)

Katia wants to go cook so she wants me finished here but I HAD to share the news with you before the afternoon slipped away. I couldn't wait to get on the page and update!! Thank you so much for praying about today's clinic visit:) See how the power of prayer works!!

Well, let me go make some baleadas with Katia. I am not so sure I am wanting to eat much more of these things but she REALLY enjoys making them so, she is the chef (and a super cute one at that!)

Love, Tracy


PS I will try to have the next auction up for Wednesday. You should see the pieces!! They turned out really nice:)

PS
I am posting a new prayer request above but I also want to post it here.
Eleanor
Eleanor is about 18 months old and was just diagnosed with Leukemia AML (same as Katia) near the end of September 2004. She is having a really hard time right now with fevers and infections. Her hair is beginning to fall out which is never easy for a parent to see and she is on very heavy chemo treatments trying to get her into remission. I am sure Eleanor and her family can use prayers and some encouraging visits to her site. Please take the time to sign the guestbook and give them a Warm Caringbridge Welcome and your words of prayers and encouragment. Thanks:)



*****


October 10, 2004 4:50 PM

Good day:)

We have been having a pretty quiet day around here which was nice. We have had a few long nights but that is to be expected with Katia. She is sitting here drawing a reindeer as I type and singing "Rudolf the Rednose Reindeer"? Not sure why:)

I want to thank each of you that have helped with our Light the Night fundraising efforts. That night is right around the corner for us. We have been concentrating on so many other things lately that we sometimes work ourselves into a hole. I know you know what that is. I can't believe we are almost near the middle of October. Through the efforts of the Katia Solomon Fund we have been able to do a few things with either other families or different projects we have been working on. This is a very important effort of ours and it will go on forever and ever. This is something we have learned we totally believe in and MUST be a part of. However, our family still has to go on from day to day and it drags our attention away from the things we want to be most involved in.

I am going to try to get an auction together sometime this week (I know I said that almost 2 weeks ago). This auction will consist of some memorable pieces from Katia. Through these auctions, sales of Myron's "Rain" CDs and donations to the Katia Solomon Fund, it helps in our effort to not only keep the organization moving forward but also this family moving forward. So, I thank you for your help in these areas. Your donations to The Katia Solomon Fund is always appreciated and anticipated. See that little chef at the top of the page? She is the reason for us wanting to do whatever we can to help others. We are SO grateful she is here with us, coloring reindeers and singing songs.

Okay, the prayer request for tomorrow's clinic visit? That her platelets are maybe up to 50!! That would be super AND most importantly that the ear and eye infections are gone. We have appointments with the eye doctor after clinic (Katia doesn't know about that yet). If the ear isn't cleared up, that MAY mean an admit for IV antibiotics. We don't want that!

Well, my little artist is nearly done so I better finish this up. I will update after clinic:) With good news! Right?

Love, Tracy







October 9, 2004 10:30 AM

Please see the prayer request update, above, for Connor.

Things here are good this morning. Katia is here eating as I type. Her and I made baleadas (flour tortillas, refried beans, and cheese). She helped put the ingredients in the tortilla and then I put them on the pan:) Katia is a good good cook:)

I am going to work on changing some pictures so I will be back:)

Love, Tracy





October 8, 2004 2:00 PM

Another weekend is upon us:) That is super and the weather should be nice.

Katia first wants to tell everyone hello. She is going to be a little computer nut when she gets bigger! She is sitting here spinning around in my office chair (not knowing that makes me nervous).

I hope everyone has a good weekend and that things will go smoothly here. That is always my prayer for our weekends. I enjoy the family time and just pray all goes well. God has definitely seen this family through a lot. I so appreciate the prayers.

You get to hear from me ALL the time so let us hear from you. We definitely like reading your comments in the guestbook. I read them to Katia and Myron checks the guestbook daily when he checks his emails. This has definitely been a place for our family to find a lot of encouragement and support. I think back to the times Katia was going through her first treatments, when we didn't have a caringbridge site, and I think, "Wow, how did we get through all of that?" God has been very good to us.

Well, I will be back over the weekend but Katia wants to go cook "something" so I need to go find what she can help me with.

Love, Tracy






October 7, 2004 3:10 PM

I had something here from John Hopkins but I took it away and I decided to just put up this Link about Dioxins so you can click on it to learn more about microwave containers and such. I think it is interesting reading.

As I type this, Ms. Katia is sitting here singing, her own made up song, about ladybugs flying to and from their home... It is cute:)

I want to work out a way to get digital video on her website in the next few months. I am trying to work on a few different ideas but she is just TOO cute (of course I am her MOM but I think she is cute singing and playing!)

Well, I just wanted to get on and post that email.

Love, Tracy







October 6, 2004 4:30 PM

I think most of the drop down menus should be working now. There are a few that I need to keep an eye on because sometimes they work and sometimes they don't? Not sure why.

The National Marrow Donor Program Gala is set for November 17th and 18th. I really hope this will work out that I, or if not me, Myron can go and be a part of this. I am reading over the information pamphlet and it sounds like it is going to be a great great opportunity to meet a lot of the people that help make the National Marrow Donor Program such a success. The night of the 17th would be the Gala and then the morning of the 18th, we could meet with our representatives and such for our area and discuss concerns or just observations on how the National Marrow Donor Program works and how things could change to make it better. What this is such a great thing for also is all the matches they have helped put together! I imagine, with each passing year, the numbers will just grow by leaps and bounds with more people being aware of what the National Marrow Donor Program is and how we can each help it be even more of a success:)




October 6, 2004 2:00 PM

Okay, good news and bad news...
Good news, my OBGYN appt. got cancelled today.
Bad news, my OBGYN appt. got cancelled today.

Those of you who go through these types of visits understand why this is good and bad. You don't want to go but you want to get the appt. behind you.

Anyway, the Dr. had to go to the hospital and deliver a baby. That is the problem with OBGYN docs.

I remember when I was pregnant with Katia, I had appointments with my OBGYN about 2 times a week to begin, then once a week, then every 3 days (I had a problem with bleeding). Anyway, I would get so mad when I would be in the office waiting, only to be told they would have to reschedule my appt. because the doctor had to go deliver a baby suddenly (babies don't make appointments to be born). Well, I felt much better the day that I was at the OBGYN and they decided it was time for me to go to the hospital to deliver. WHICH MEANS... they cancelled all the waiting appointments. I know that sounds mean but you understand.

Okay, enough about that, right?

So, how did Katia's visit go? Well, her appointment was not cancelled and went along smoothly. I got there a little later in the morning since we didn't need to draw labs. She was only there for her ear. Last night, she suddenly said she could hear again out of that ear (sigh of relief!). So, I was sure it was just wax or water. Anyway, today there are bright yellow secretions in there so they are going to continue the antibiotic ear drops 3x's daily and also go up on her CIPRO dose (which she already takes twice daily for the UTIs) to 150mg twice a day insteand of 100mg twice a day.

Hopefully this will clear up by Monday. If not, then she will see the ENT or (we don't want this one) have to go on IV meds. Hospital admit or not? Not quite sure. We will cross that bridge on Monday (just hopefully not the bridge over to the hospital).

So, that sums up our morning.

Three words for today...

Patience, patience, patience.

I am trying to finish up the updating of our drop down menus so they will work again. I am nearly done.

Hopefully this Washington DC will work out. It is scheduled for November 17th and our hope is that Katia is well enough for me to get away for a day or so. I thought it would be a greater chance to speak to more members of congress but it seems to be more of our local congress and representatives and attending the NMDP Gala event. They are about to do their 20,000 match of a marrow donor with a recipient. WOW!! So, I wanted to get on here and make that change since I seemed to have a misunderstanding. It is a GREAT opportunity to be a part of this though and see alot of the people that make the National Marrow Donor Program the success that it is:)


Katia is sitting here watching me type and playing with dinosaurs. She helped me pack up another bag of toys for the treasure box yesterday. Justin took them up to 2SW. THANK YOU, JUSTIN:)

So, I guess that is all for now.

Thank you for checking on us, thank you for your prayers and thank you for being YOU:)


Love, Tracy

PS Thank you to everyone going over to visit Kelly M. and sign her guestbook! You are awesome!





October 5, 2004 6:11 PM

Well, the day has gone by and I haven't updated (about Katia).

We have a clinic appointment tomorrow to followup on her ear (not any better) and then I have my long awaited (but not looking forward to) OBGYN appointment. For those who don't know what OBGYN stands for, sorry:) It is just one of those things that we don't look forward to. I have had a few concerns over the last months and finally decided to call and make the appointment. Those who have checked this page for a while know about the breast lump in June 2003 that took until August 2003 to find out the results from. Well, that is the 2nd time that happened. The first was in July 2002 which took until August 2002 to get answers. It seems I am a hard case to get answers for.

So, I figured I would wait out the summer and maybe things would go smoother:) Actually, I just wanted to enjoy being home for a while.

I will probably update after clinic but if not, I will be back tomorrow evening.

It seems I have a great opportunity!! I am going to hopefully be going to Washington D.C. for a Marrow Donor Program Gala and meet some of the representatives of our area and congress. It is a great opportunity because I have a lot to say and I will talk to anyone who will listen. It will be next month. I wish I could take Katia (she is my little hero) but she isn't ready for that sort of thing, yet! She will be. I want to see her speak to this same crowd in a few years. I will be crying tears of joy to see that!

Well, Katia wants me to finish dinner (Spaghetti tonight) and if one person is more persistent than me, Katia!

Love, Tracy







October 5, 2004 12:54 PM

***PRAYER REQUEST***



Kelly M.
Kelly is a newly diagnosed patient. She was diangosed with Pintone Glioma in September 2004. She has a new Caringbridge site so maybe you can drop by and tell her hello and let's introduce ourselves the CARINGBRIDGE WAY! She is 10 years old and is supported by wonderful parents and an older brother. She is being treated at All Children's Hospital in St. Pete also.



Thank you so much for going by their site:)

Love, Tracy









October 5, 2004 7:00 AM

Good morning:)

I just wanted to add this here for now. I will be back later. Jane, Casie's Mom, has been updating via Casie's guestbook and this is the last update. I thought this was very cool!

*****
Hi! wanted to let people know that I sent a stuffed monkey to travel with the Tour of Hope that Lace Armstrog is doing. The monkey was always with her in the hospital and is one put out by Ty but it has spikey hair.All the kids called it chemo hair. They also have pictues of Casie.Thanks to all that visit this site and hopefuly soon I will have the password to update. Also much thanks to all who that have said they will walk with me for the Light the Night Walk. I was kind of dreading it as too soon but now am looking forward to it and think Casie would feel very honored!Til' next time. Jane
*****

So, if you would like to leave a message for Jane, you can do it via the guestbook on Casie's Page.

Love, Tracy


October 4, 2004 3:30 PM
WBC 3.3
HGB 12.3
PLT 48 (up from the other day)
ANC 1300

We are back. We got back earlier but Katia and I had some cooking and cleaning to do. I have my little helper back:)

As you can see her platelets came up a bit:) Her ANC went down a bit. And, her WBC came up a bit:) So we are happy. She seems to maybe have an ear infection so she is starting some antibiotic drops and will go back on Wednesday. She hates drops! But, she also hates the way her ear hurts. So... she is willing to work with me.

As we drive away from the hospital and clinic (they are across the street from eachother), I am always thankful to head back over the bridge. Being home has not worn off. I don't think it ever will. Myron will just tell me sometimes, "Have I told you I am glad you guys are home?" I can tell how much he appreciates me home and we definitely appreciate being home!

Right now, Katia is eating and making quite a mess. It is nice watching her be "typical". I am really praying, that by her 5th birthday, in January, she will be freely walking around and able to run a little. She wants to RUN. She tells me all the time but she can't. She is working on it though. She does try hard to walk without holding on to something but it doesn't work yet. I just tell her to be patient. I know that drifts right through her ears since she is a 4 year old.

Well, I better wind this up or I am going to have a whole table to clean up if I don't get her done:)

Love, Tracy





October 4, 2004 8:44 AM

Wow, I didn't update yesterday... Hummm.

Well, we had a nice day. Each of the girls had an hour with Mommy all to themselves (Katia has a lot of these all the time). Anyway, Sharayah did my makeup and painted my nails and then we took off that polish and I painted my nails while she did hers and then I did it again (not too in to nail polish like I used to be due to Katia) so I ended up with clear polish and Sharayah and French Manicure:)

Tatiana read me her speech for today, I painted her nails and we ate sandwiches on the back porch.

Where was Katia? Well, she was with the sister that wasn't with me. She was getting a "free full hour from them". It worked out very nicely. Myron was doing errands and checking the PO BOX. When he came home, we all had painted nails and we were happy:)

We are on our way to clinic this morning (later than usual) just to go get a "report card" of blood counts and her FK506 level which was off. It should be a quick trip but Katia still makes me pack her "busy bag" with me. Her busy bag is an old backpack that can hold a LOT of junk and snacks:) It is a must have for clinic though.

Well, I will update later with her counts:)

Have you see the UPDATED LIGHT THE NIGHT AMOUNTS above? WOW!

Also, please pray for Katia's left ear. It has been bugging her all night. She can't hear out of it so that is going to get looked at today as well. She has been pretty much in tears this morning because we told her it would probably be better in the morning and it isn't. I think it is just plugged up but we got her to yawn and drink and even TRY to chew gum and eat something but it is still the same. I feel so bad for her. She gets VERY irritated when her ears get messed up. Her sinuses were looking better there so I am not sure what this is. We will see.

Dr. Petrovic is out of town (frown!) but someone will be there and Katia has seen them all so it should be okay:)

Love, Tracy

PS Also please pray for Bailee. She has had her transplant and her body will need to start growing good cells. Her brother was her donor which is just awesome!!!!





October 2, 2004 8:00 PM

Good evening:) I came here to update and never finished...

So, I will start over (I type fast).

We had a busy day here at the Solomon household (I like the RING of that). We did yard work, a lot of it. Well, to the normal person, it may not seem like a lot but we spent about 4 or 5 hours of uninterupted yard time. Katia and Tatiana were playing and Myron, Sharayah and I did a lot of yard cleanup that needed to be done.

Katia actually held her pee the whole time (she had on a diaper) so when I finally came in and took a shower, she went potty and WOW! She has a good size bladder. She is doing well with the potty training. I am very pleased and she is very happy with herself. She however, does not want panties. She wants to keep her diapers? We will see. I am just happy she is going potty.

Her bootie has improved a bit. I think she is doing better than she thinks. A lot of the problem now is the fear of pain but she only had her pain meds twice today instead of 3 or 4 times.

She is telling me to finish up "working" here so I better bring this to a close.

Tomorrow, I plan to kind of rest my bones (which I am sure will be very sore from today) and just spend some time with the kids on the back porch and maybe work on the next auction pieces.

Well, I better run:)

Katia says to say hello!!

Love, Tracy








October 1, 2004 2:16 PM
Day 239

Where is this year going? I can't believe it is already OCTOBER!

I came here to update earlier today but then Katia wanted to take a bath and... WELL SHE SOAKED!

Yes, I got her a little tub and she loves it! It is a bucket:)

She can have a few inches of water in it and she says it is like a pool. I have her broviac up and out of the way but she has bubbles and water to soak in. Talk about easy to please:)

So, she soaked until she pruned then she got out:)

Her bottom? Well it is still causing her a lot of grief but I think it is slightly improving. I think after about another week or so, it should be good again. She is still trying to use the potty as much as possible. I think we have the "poops" in the potty but the pee? Well, that is still hard to catch.

I am glad the weekend is here. You know why? We don't have a lurking hurricane!!! This is going to be nice:) Even though this was a short week for the girls at school, the weekend should be nice.

While I was doing a little work on-line today, Katia and I were listening (and yes, singing to) some Country Queens!! I can never get enough of Patsy Cline, Linda Ronstadt and yes, Dolly Parton. I like all the country queens but those are what we had fun with, online, today:) You should hear Katia singing "Blue Bayou" and "CRAZY". It is just too cute for words!

Well, I better close this. I am always happy to come on here and share when we are having a good day. I appreciate these days.

You know what Katia had for breakfast (shhhh don't tell her doctor!) SHE HAD CAKE!! (Can you believe that Kristi? Not desert WITH breakfast but FOR breakfast-I can hear you laughing now). That was what she wanted and I gave in. This was one of those "cake for breakfast days" and they are okay every once in a while. No, I didn't have cake for breakfast. I am trying to drop a few pounds:)

I have been using the treadmill everyday!! I am very proud of that. Am I getting anywhere? Well, not yet but I will:)

Well, I better finish up here. Katia wants the music back on:)

Love, Tracy

PS Have a GREAT weekend! Have some cake for breakfast:)







September 30, 2004 4:17 PM
Day 238

Well Ms. Katia and I thought we should update. She wants you to know that she is helping me cook and she is making lots of "honey" today:)

Her bottom is still causing her a lot of pain BUT, due to the pain, she is using the potty more. It seems to help her. I know it is hurting bad when she ASK me to put ointments on her bottom because she really doesn't like that.

Katia was helping me to clean today and I think she is going to grow up to be quite organized. She really has an eye for when things are out of place. I appreciate that:)

Her doctor called last night (surprised I hadn't called her for the results) but Katia's FK506 level was off so we either had to have a recount on Friday or Monday. I chose Monday. It was quite high, not sure why, so we have adjusted the dosing. Other than that, the rest of her levels were good, like her potassium and magnesium. I wish her platelets would rise but last month they hung in the 30's and this month they are hanging in the 40's so... I should count my blessings:)

Thank you so so so so much for those of you making the Light the Night donations! We are moving closer and closer to our goal of $2000. We don't have much longer. I was trying to find someone who would "Match" donations but I guess we will have to do things the old fashioned way, dollar by dollar.

At the same time, the Katia Solomon Fund has been trying to raise funds for Deseray's family and Myron is meeting with them this weekend to give them what we, and you, have raised. We thank you for stepping in helping.

We have a few new ideas to do with KSF so we will be working on that during the month of October. Also, I have an auction I am working on, which helps KSF grow. I have a really good idea and Katia has "made a deal" that she will help me:) So... keep an eye out.

Well, Ms. Katia needs a mirrow for something so I need to finish this up before she tries to hunt something down and gets hurt.

Love, Tracy







September 29, 2004 6:00 PM

WBC 2.6
HGB 12.7
PLT 41
ANC 1400

As you can see, we are back after a long day:)

Not only did we get the clinic out of the way but Katia's doctor wanted her to go see her eye doctor also, due to pain Katia has been having in her right eye (tumor site).

So, we got all of the infusions done today (IVIG and Pentamindine) without any problems. Even her broviac worked.

Katia's butt was just a mess all night and this morning so that was our first topic of discussion when the doctor came in. There is a tear there and it is not in a friendly place so what we have been doing is the best that can be done and hopefully it will heal soon. Her White Blood Cell count being down really isn't helping but it should heal okay and until then, just pain medicine and creams.

She also has an eye infection so she has cream for her eyes and hot compresses. THAT SHOULD GO OVER WELL:)

On a good note, it seems the DACLUZIMAB treatment is doing what they want it to do by bringing down the amount of CD25 cells, keeping the GVHD at bay and allowing us to continue to wean the steroids. So, that made me feel very very good.

I just hate to see Katia in so much pain so that is what the prayers need to be for, her bottom...

Well, I need to go finish/start dinner but I wanted to get on here as I know people check and get worried. Thank you so much for your prayers. I will be back later tonight or earlier tomorrow.

Love, Tracy








September 28, 2004 6:50 PM

Not too much new. I just wanted to ask that you pray for Katia. She has been in a LOT of pain recently with her bottom. I haven't said much but it is getting bad enough that it is causing her a lot of grief. She tries to hold it in and not show that it hurts but then she starts shaking because it just gets to be too much. She has pain medicine and is now up to taking it about 3 times per day. We go to clinic tomorrow. I will update when we return in the evening.

Thank you:)

Love, Tracy







September 28, 2004 10:16 AM
Day 236

Good morning:)

The kids are home again today. Up north, they have snow days, here, Hurricane Days:)

I am pretty sure they will be back at school tomorrow. As I type, Katia is "smacking" on a piece of toast. You should hear her:) It is cute.

Anway, tomorrow is our long day at clinic. I am always glad to get those days behind us but they are alot to look forward to. First, because one of the treatments makes Katia sick and the other is I have so many things to drag along with us. Speaking of things to take along...
Katia is definitely TRYING to do this "potty training". I think she will have a few months but I do think she is in this till she completes it. I am very proud of her.

She has an adorable little wooden ladybug toy that walks behind her. It is her "Lucy the Ladybug" on a string. Anyway, this morning, she though Lucy needed to go potty:) The potty seems to be the subject of conversation during a large part of her day:)

Have you seen our LIGHT THE NIGHT TOTALS? They are getting up there. Our total right now is nearly half of our goal. We have until the middle of October to get this goal reached. I REALLY think we will get to our goal of $2000.00. Just like Joyce had said in her entry, these small donations add up. We have recieved donations from $1.07 to $100.00 and each one of them together, is getting us a step closer to our goal. The $1.07 came in anonymous but the story with it was it was the son's idea and he got change from his room and taped it to the paper to mail. I love when kids get involved with helping. I was watching something on the news about people who had been hit hard by the hurricane going to pick up ice bags and there were these two young boys helping to load ice in peoples' cars. They weren't asked to help, they just showed up to help. That is just super!!! Children can REALLY make a huge difference!

Well, I have quite a bit to get done this morning.

I am going to get another auction up and going soon. I am hoping Katia will cooperate with my idea because I think it would be really really nice:)

The items from the last auction are going to the Post Office today so keep your eye out. Thank you so much for your participation!

Love, Tracy










September 27, 2004 11:14AM


Good morning:)

We are all here and doing well. Thank you so much for your prayers and emails:)

Last night, our lights were playing tricks on us. They just kept continuously cutting off and then coming back on which was getting very old. Other than the fact that we kept cheering when they would come back on, all you heard were things beeping on and off. Finally we just unplugged basically everything. We had turned off our airconditioning and the only thing really ON was the TV for the news and the BUCS game:)

But, I went through and unplugged things totally. I hate being unplugged for the Internet. I feel blocked off but now things are back plugged in and up and going.

Other than the fence coming down in the back yard, I think things went very smoothly (considering). Our back porch is in the "drying process" again. We put carpet out there and have it mainly fixed up for Katia to be able to get out there and seem outside without really being outside. It is a great escape for COFFEE (as you know) and it is just a peaceful place. Now, with the fence gone, it seems like we are just "one with the neighbors". Doesn't seem too private and cozy. We will see what she can do. I know a lot of people are struggling with all of this cleanup and added cost, that have come their way this Hurricane Season. I haven't watched the news yet this morning to see the damage.

I really really pray that was the last storm of the season. We will see. We have quite a bit of cleanup in our back yard, back porch, front yard, etc. Garbage pickup never picked up Yard Trash from last Thursday in our neighborhood, so that didn't help keep the neighborhood clean. Garbage pickup (regular trash) came today before we got the trashcan out there. Our trashcans are totally beat down so I need to get new ones. This has been ONE LONG SUMMER. All I could thing of with three storms brewing during the last week was the movie PERFECT STORM. Have you seen it. Three storms collide in the ocean and ..., well I won't tell you the end.

Katia is so happy to see the sunshine is out. She is singing, "The hurricane is done" over and over:)

The girls are home today, Myron is at work so guess what we will be doing:)

Well, I better get this update posted:)


Love, Tracy (and all of the Solomons!)







*******




September 26, 2004 6:30 PM (ANOTHER HURRICANE DAY BEHIND US)

We are still here, with electricity!! Can you believe it? God is really looking out for us. Katia has prayed and prayed for the lights to not go off:)

Other than the back fence coming down in the yard, all is well. We have our typical water on our backporch but that will dry.

There was a LOT of wind and it is still pretty windy but I can tell it is winding down.

I really pray this will be the last storm this season.

Katia won't go into clinic now until Wednesday for her treatments so by then, the roads should be cleared up and hopefully most of the traffic lights will be fixed. I didn't feel comfortable driving there tomorrow with things so uncertain. I feel safer to wait. Plus, the kids are out of school again tomorrow so we will be around here.

Well, Katia needs some medicine but I wanted to update again to THANK YOU for all of your prayers. Is it dry where you are?

Love, Tracy







September 26, 2004 12:55 PM

It seems the eye of the hurricane is headed here but not quite here. The lights were flickering (but they are still on) so I turned off the computer for a while. Katia and I went on the back porch for a bit (closed in) and then we got scared and came back in.

Thank you for all of you praying for us and our LIGHTS!!! If we can get through the afternoon with lights, I think we will be okay:)

There is a LOT of WIND!!! The oak tree behind us has thinned way out!

I will be back:)


Love, Tracy







September 26, 2004 9:30 AM

Here and going strong:)

We are getting quite a bit of wind, strong gusts. I am praying for our electricity. When I see the trees blowing like this, I just picture someone's tree falling and taking down the wires that end up coming to our neighborhood. Katia has been praying for our electricity too. She is back to sleep right now because we got up so early today.

It is pretty ugly outside but by the end of the day, this should all be passed us.

I am praying, again, for those on the East coast and I am praying this is the last hurricane any of us have to see this year!!

Love, Tracy


PS I'll be back:)





September 26, 2004 6:30 AM

I have a feeling we will lose power. I am making this quick so I can update at least. The wind is just picking up here but I am hearing on the radio this is going to be a LOT of long sustaining wind.

I will try to come back and periodically update as things permit.

Thank you so much for your prayers. This will pass and I am sure we will be okay.

Love, Tracy







September 25, 2004 9:14 PM (HURRICANE JEANNE COMING THROUGH)

Hello:)

Sorry so late today... We have been pretty busy just getting some things cleaned up, some running around done, etc.

Looks like we have more bad weather headed in early in the morning. I REALLY pray this is the last one of the season. Hurricane Jeanne has already done so much damage elsewhere. I am praying for everyone's safety over the next few days.

I am not sure if we will have clinic on Monday yet. That depends on our bridges and the weather. Katia has had a pretty good few days. She had pizza tonight so she is happy right now:)

As I type, they are going over the weather report and this is the first time since 1886 that 4 hurricanes have hit one state. In 1886 that state was Texas. Hurricane season isn't over till sometime in November.

Also, I have been getting emails about the pulldown menus not working. I am having to update them so I will let you know when they are back up and going. The only 2 not working on the links to other caringbridge sites but give me a few more days:)

Thank you so much to those who have brought in the Light The Night donations!! WOW!!! We are going to reach this goal. I just know we are!!

Well, I better get Katia her meds and get her down to bed. It takes her a few hours to wind down to sleep and it is already after 9:00 PM. Our sleep usually starts close to 1:00 AM!! The bad weather is scheduled to roll into here early in the morning so we should be up early.

I will sign on during the day tomorrow (if I can) to let you know we are okay:)

Love, Tracy


PS If you would like to find out about our local Weather updates this is the link to use:)







September 24, 2004 10:53AM

Good morning;)

As Ms. Katia is eating I thought I should jump on here and update. My days kind of run together once she is set lose through the house. She is back to being her busy-body self.

Yesterday she did go potty two times so we are very proud of her. She also walked for a bit without holding on. I love to see her really really try. I have to hand it to Katia. She is VERY determined.

Yesterday she got called down for something (yes, Katia does get called down) so I went and put her on my bed and set the timer for 5 minutes. The timer goes off, I go to get her and she was gone!! She was hiding from me. Of course I couldn't get mad at her (sorry, Dr. Phil) because I was just happy she had gotten down by herself and made her way to a hiding spot (without having her baby buggy to hold onto).

I had taped Dr. Phil from the other day about toddlers who basically run their parents. Although Katia does have "some" control over us, I think she will be okay. If not, we will just run her over to the Dr. Phil stage when we need. I really like his shows!

Well, I better run. Although it only takes me 2 to 3 minutes to update, that is plenty of time for Katia to finish eating and now she is ready to get down and get on with her day of following me. We have started playing "Hide and Seek" and she is pretty darn good at finding me:)

Oh, have you seen the latest on Hurricane Jeanne? Looks like she will come pay Florida a visit afterall. I kind of had that feeling since she was just hanging around thinking about it. Our weather guys have been very very busy these last few days. Here is what is going on in our area:)




Maybe Ivan is finally disappearing (for good this time).

Love, Tracy





September 23, 2004 10:57 AM
Day 231

Good day:)

As I type, Katia is eating her OATMEAL!! I was thinking back on the days we wished she would just take ONE bite of oatmeal, well now it is a lot of bites! All of this has definitely taught me to appreciate, appreciate everything!

Well, I am going to update Benjamin's prayer request above so you have to take a look at it. Good news!!

All is okay here, no real new changes. Today we go down 1mg on the steroids so we will be down to 8mg a day:) I really think the wean will continue till Katia is off of the steroids! I pray so.

You know? Call me crazy, but Tatiana actually looks like she is older. This year she has really more pulled herself together. She does her own hair neater, she keeps her room neater, just a lot of things. I am proud of Tatiana, all my girls.

Sharayah is starting to look forward to college. She wants to go to NYU so she is always asking me if she can have certain things from the house when she leaves to college. Okay, that makes me feel old! We are working on her cooking skills. I really want her to know how to cook and take care of herself. She is pretty organized so that is good.

Katia is working also. She wants to do school so right now, we are working on recognizing and writing her name. She wants to get the V-Smile thing on TV (advertisers really know where to place their commercials) but she does work very well with the things she does have already. Katia is very quick to learn:) She is very eager to do things educational. That makes me very happy. It makes her very happy:)

Her walking is about the same. She has more endurance but still lacks on self-balance. She was scooting around yesterday on her Toddler Bike which is good exercise of her hips and legs. She also used the potty 2 times yesterday! She is very pleased. It of course makes us happy. I don't want to pressure her so this is ALL up to her wants and abilities. I am glad to see she is self-motivated.

Well, I better run. She wants more oatmeal (she supports the flavored oatmeal companies!).

Love, Tracy






September 21, 2004 10:24 PM

Are you watching the amounts for Light the Night fundraising for Katia's team!! Look above the journal entries. Today it started around a total of $265 and now it is at $545! WOW, thank you! I think we just may meet that goal!

Love, Tracy






September 21, 2004 12:01 PM


I read through the guestbook each evening and then in the morning also. First, I have to say thank you for all the wonderful comments on the poem. I appreciate your words. Secondly, I thank you for leaving messages in the guestbook just saying hello. We love to hear from you. Myron and I both check the guestbook and of course, Katia is with me so she gets them read to her (with animated voices and all!).

Someone asked "What is Katia's favorite thing to do all day?" Well, her favorite place to be is right with me, so she is involved in whatever I am doing. She likes to follow me and push her babystroller around behind me or have me follow her. She likes to go "sit and chat" on the backporch with me. She likes to eat breakfast and lunch with me. I guess she just has gotten very used to always having me with her. Of course, I don't mind. I love having Katia as my "shadow". She is a cute shadow to always have behind me or beside me:)

Third, this was left in the guestbook so I am going to post it here. I really do want to meet our goal for Light the Night.

So far I have $160.00 in checks (thank you!) and $105.00 on our Team page for Light the Night. What goes through this page, goes directly to the society and the checks that come to me (made out to THE LEUKEMIA AND LYMPHOMA SOCIETY) will get handed in to the Leukemia and Lymphoma Society in the next few weeks to add to that account! Our team is "Katia's LifeBugs"!!

We would LOVE to meet or surpass our goal of $2,000.00!! The Leukemia and Lymphoma Society just does so much and we know the funds go straight to research and family services.





Dear Caringbridge Friends:

Tracy seems to be having trouble with her Light the Night fundraising. I’m sure we all assumed that she had easily surpassed her goal of $2,000 long ago. That is sadly not the case.

Let’s all gather together and support this wonderful family to meet and surpass their goal of $2,000. These funds will be used by the Leukemia & Lymphoma Society for research and patient support.

I’m sending a check tonight for $20. Who wants to join me???

Think of it this way. Give up a candy bar this week and put $1 in an envelope and send it. Give up a fast-food lunch and stick $5 in an envelope. Give up a restaurant lunch and stick $10 in an envelope. Give up a restaurant dinner and stick $20 in an envelope.

So, lets all “Give Up a Snack or Lunch For Katia”. What a simple sacrifice for all of us to do in Katia’s honor??

Checks should be made out to the “Leukemia & Lymphoma Society” or “LLS”. Please put “Light the Night” or “LTN” in the memo section. If you send petty cash, please send in a security envelope and tape it shut. You can also donate online using the link above Tracy’s daily Journal posting.

Thank you dear friends of Katia for supporting this wonderful family in their mission to help others.

Love, Joyce & Husband Angel Mike (AML-M5 Leukemia) San Diego, CA


Please send donations to:

Katia Solomon / LTN Fund
PO BOX 22375
Tampa, FL 33622

P.S. Tracy, I know you are hesitant to ask for help. However, PLEASE post this (or excerpts) above your daily Journal and keep us updated DAILY on your progress. I know your dear Web Family will not disappoint you!! Love, Joyce

Joyce Milus
San Diego, CA - Monday, September 20, 2004 7:15 PM CDT


I thank you for your help:)

Katia is here with me, of course and says to say that she likes "Honey Flowers". I am not sure where that came from but her mind is very active so she has quite a lot of thoughts going through there:)

Love, Tracy (and Katia)







September 20, 2004 6:14 PM (second entry today)

Yes, I am back. I have been going through some Caringbridge sites and I just wanted to write and share something. I have had this page going since November 2002 (started after Katia finished her first rounds of treatment after being diagnosed in April 2002). One thing I have come to realize is we are not in control of our lives. I have learned that without faith, I would have, probably literally, lost my mind. I will never say that I understand all that I have witnessed on Caringbridge. So many absolutely wonderful children, and adults, that have lost their life to a vast amount of different diseases. Some have lost one family member, only to lose another in the coming months. I can't help but to question God. Of course, I am human.

I know God knows the reason for everything and with faith, I accept that. There are nights, a lot of them, that I find it very very hard to go to sleep out of a feeling of guilt for just being here. I see some tiny, innocent child, gone way too soon. When Katia was diagnosed, the thing that kept crossing my mind is "Give this to me, God. I am strong. I can handle this. She is just a baby." Through this, Katia has touched so many lives of those she has met, and so many she has never met. I can honestly say, her story, her struggle has saved lives.

I am a person that when something is really getting to me or has me feeling at the lowest of lows, I get very quiet and try to bargain with my mind. Sort things out, reason things as best I can. In these situations, that is impossible. There are no answers and there is no "getting passed it." Not for me. So, I have become determined to not only share Katia's story but to always, honestly, share my thoughts and feelings. However, that is not so easily done in a lot of cases.

So, I have written a poem. I love to write poetry. I used to write happy little poems about falling in love, when I met Myron. Then as I got older and life had its ups and downs, the poems became a little more down to earth showing those ups and downs. I haven't written anything for quite some time as I feel my creative side has just been drained. The last things I wrote, I think, are the poems above on the page. "Mommy Make it Better" and "If Only for a Moment".

I will move this up on the page later, but for now, I will just put it in the journal entry, here. This is written, with those in mind, that have lost loved ones, today, yesterday or over the years.


ALONE ANOTHER STANDS


As each day we go through life,
like a forever winding road,
we never know what lies ahead
or what tomorrow holds.

One thing we know for certain
is the love we share inside.
Through sickness and in health
Our love is their to shine.

Some people just shine brighter
Some people plant more seeds
Some people are the givers
While others have more needs.

Of course none of this is easy
As our minds cannot explain
Why some of those with so much love
Must go through so much pain.

Why must some say goodbye
to those they hold so dear?
Sometimes over and over
in just one passing year?

It's something unexplainable
That I can not pretend
to even know the answer
for a broken heart to mend.

But know my prayers are always there,
Like a beacon in the night
That through the clouds, someday
Again, will shine some light.

My prayer is for tomorrow
to be brighter than today.
For those to find the faith
to get from day to day.

I pray that through the sufferings
God will hold each hand.
For as one must leave this earth,
Alone another stands.

By: Tracy Solomon *September 20, 2004





Love, Tracy







September 20, 2004 2:00 PM
Day 228

WBC 3.0 (down)
HGB 12.7 (up a pinch)
PLT 40 (down)
ANC 1400 (down)

We are back from clinic:) Katia is so happy to be home! At clinic, the machine we were trying to use for her infusion kept beeping and beeping, so we tried everything, finally changed out machines, no luck, then we transferred the medicine from a syringe to a bag and YES, it worked:)

Our first problem was that her broviac would flush but not draw any blood. This is new for this broviac but usually it will give in after trying for 5 - 10 minutes. Not today. So, we used TPA (a Drano for Broviacs which sits over 1 hour) and it finally, reluctantly worked.

As you can see her counts have dropped which is a little expected. Platelets we hoped would stay up or go up but they didn't.

Our next visit is for next Monday (we are stretching more time between visits) but it is the one that we have two transfusions to do. One is 1 hour and the other is 5 hours plus flushing time and regular appointment time. That one gets "boring" (Katia's favorite word at clinic). But, that is okay because the day ends at HOME!

Also, I am glad to see that our Light The Night fundraising is improving. It is finally up to $90.00. It stayed at $15.00 for quite some time and our goal was $2000. Maybe I set too high of a goal. Some goals are well over $50,000.00 though. Can you imagine? Well, every dollar is a dollar to a great cause!! I am proud to be a part of this fundraising. Also, if you make a donation, and you don't mind. I would like to put your name on here. If you already have, let me know if I can add your name and I will make a section. Sometimes they are done "Anonymously" and that is fine. But I figure maybe this would be some insentive (after raising three girls, insentive is EVERYTHING). Of course, I won't put amounts. Even $1.00 donations add up. Our walk is in the middle of October so we still have a few weeks:)

What else?

Katia peed in the potty!!!! She asked to which was great BUT she says she doesn't want to do that ALL the time, just sometimes and she definitely does not want to poop. She asked for panties (which of course I put on her) but just a few minutes later, after walking around a bit, she wanted her diaper back. You know why? She said her butt was too small!! I guess the diaper makes her feel more proportioned. So, she got a diaper on. I don't want to force her into potty training. I know when the time is right, I will know and she will be willing and able. Poor thing has enough she HAS to do already with medicines, clinic visits and other things that I will more leave this up to her, for now:)

Tatiana had a nice birthday. Instead of cake, we did cupcakes (which Katia looks at as "more than one cake"). Tatiana had a nice time and was quite happy that she got to get out with me. That IS pretty unusual since Katia is so attached at the hip to me. If I go to the store, I will usually take Sharayah with me because between the two of us, we can remember what we went for. I did USED to try to take them out, seperately, for one on one time but that doesn't get to happen much right now. I liked to go, sit down, and eat somewhere and let them chat chat chat. Boy, can they go on and on when given the opportunity:)

Well, I better sum this up. Katia has a car and is driving it on the keyboard so it keeps messing up my typing:)

Thank you for all of your prayers and checking on us:)


Love, Tracy








*******



September 19, 2004 6:45 AM

Yes, I am up early:) Been up.

I was happy to see, when I watched the news last evening, there are a few paths for Jeanne. She seems to be quite confused. Some have her just going around in basically a circle, others to the upper left, some to the upper right, etc. So, we will just see what happens. I told Katia, "Jeanne is confused". She said, "Who's Jeanne?" I said, "The hurricane!" She said, "Mommy, go to sleep". I think she knows better than me. Plus, she has already gotten into some of my "Hurricane Food Supplies" so we don't need another hurricane.

Well, I just wanted to come check on a few sites, I haven't had too many chances to lately. While Myron made dinner last night, Katia and I sat on the porch and just chatted. She may just be 4 but her and I can carry on some lengthy conversations (maybe I am regressing). Anyway, it is always good to hear her laugh and she uses her hands and expressions a lot when she talks which is cute. Have I told you lately? Katia is such a sweetie:)

Love, Tracy








September 18, 2004 7:07PM

Thank you to all of you for wishing Tatiana a very happy birthday. She and I went and had hamburgers together (outside in the sun) at the place she chose - CHECKERS! I can't wait to have my cholestrol checked again. Last time it was check, 279!

Anyway, then we went out in the car and took a drive to go "look at" the beach which we discovered has been washed away along an area we call The Causeway. It is just GONE!

Then, I came home to check on the status of the hurricanes we are watching now, Jeanne and Karl (I don't know what it is with visitors this year!) and here is what I found. A hurricane that was supposed to leave us alone, seems to have changed it's mind. Not only does it appear to have changed its mind, but it seems it is trying to make a "statement" by the curve it is using. I mean like, "Hold on Florida, I don't want to pass you" kind of statement.



Hopefully it just won't have a chance to strengthen much. That is Jeanne. Then Karl,

which has winds over 100mph is behind this one, not sure of its path until it gets closer but it is also traveling WNW (West Northwest).

We really don't need anymore rain around here, we would like to have our beaches back and we don't want to scare anybody away from visiting Florida next summer so... pray this heads out to sea.

Katia WANTS to see the rain of course but she doesn't want ANOTHER HURRICANE! She doesn't like the idea of "hurricane" because it means you can't go by the window and you have to stay inside.

Well, I just wanted to mainly thank you for all your well wishes to Tatiana.

Love, Tracy







September 18, 2004 11:06 AM

Okay there are two things today...

One is very good and one is very bad.

I will start with the good.

TATIANA IS TWELVE TODAY (AND SUCH A CUTE 12 YEAR OLD!) WE ARE VERY BLESSED WITH TATIANA AND HER GOLDEN HEART! WE LOVE YOU TATI, HAPPY HAPPY BIRTHDAY:) WE WILL GIVE YOU A GREAT GREAT DAY!

Along with the joy of life, the day has started out with some news that just breaks my heart. It has taken me a bit to get on here and update because as you know, I have followed *Katja's* story for quite sometime. Now *Katja* is an Angel. I imagine she is just a beautiful angel but it is just so hard. We need angels here on earth. Here is the update from her page as I really cannot go on right now. I am pretty shaken by this as I know you will understand. All I can do is look at our Katia, and know their *Katja* is no longer with them.



Saturday, September 18, 2004 5:32 AM CDT

Katja left us peacefully at about 4:30 today. She let mom and dad cuddle with her for several hours, we all fell asleep in her bed. As her time neared, she waited until we could all be together at her bedside. She is in no more pain after such a long, hard struggle. She is flying free tonight. We are here celebrating her life and remembering our favorite "Katja-isms" and stories. We all already miss her but are joyful that she is pain free.
Thank you all for your prayers.



Please pray for this family as they must endure all of this. Please pray baby Evan will always have his guardian angel sister, in his heart.

Love, Tracy







September 17, 2004 4:42 PM
Day 225

Today is just not the best of days... the news of our little friend, Katja's health worsening is just heartbreaking. I hate to see parents going through all of this... it just isn't fair. I don't say that much on here but in all reality, it isn't fair! There is no other way to say it.

Our little Katia has been pretty active all day. I look at her and see improvement and it really gives me a boost of energy. I am so glad to see her being a busy ladybug around the house. She spends much more time out of bed, than in bed, nowadays and that is super! You know the little ladybug bracelet she wears? We are trying to make them available on the site. Either the same thing or a different design all together. You know Myron and me? We just can't be busy enough:)

I figure though, if people have on some different looking bracelet, people are very prone to ask, "What does that stand for?" So, then people could learn more about Katia and her fight and how important it is to register as a marrow, blood, platelet, organ donor to save every life that has the chance of being saved.

I got an email today out of concern since they have seen now about our friend, *Katja's* relapse (it is hard for people to determine which Katia/Katja I am talking about). So, let me clarify something. Our Katia is spelled with an "i" and the other Katja is spelled with a "j".

If I am speaking about "our little friend, *Katja*" I will usually refer to her as "our little friend".... but I will put her name in between *asterisk* to try to not confuse you. I know it is confusing. When I called Myron today to tell him of *Katja's* worsening condition, he thought I meant, Katia. It scared him so I know how confusing it must be.

Okay, the email was also asking about relapse after transplant. Yes, it is definitely possible for one to relapse even after transplant. *Katja* has had 2 transplants, each time relapsing. Do WE worry about this? EVERY HOUR OF EVERY DAY. Transplant can be a life-saving cure but it can also just be a way of "buying time" until a better, more dependable cure is found. How many transplants can a person have? Well, that depends on the patient, really. But, typically 2. Mainly due to the stress of the chemo and radiation on the body. Most people would not be able to even live through the pre-transplant workup again.

Katia has had her lifetime supply of radiation, meaning she can never have it again. That is why it is so important to me, that she resume with the spinal chemo ASAP. Nothing could really be done to save her if she relapsed in her spinal fluid, brain, or eye again. We have to keep her CANCER FREE.

I would never want to see anyone else have to live with this type of fear and uncertainty. It isn't a good way of life. If Katia gets a bruise, I worry. I start thinking, "What is going on?" or "Does that bruise make since or is her marrow failing her." I am not a pesimist, it is just a reality in this fight.

If a person has been cancer free for 10 to 15 years, I don't look at them any different than one that has been cancer free for 5 months. I am super super happy they are free of cancer, but I know it is still on their mind and the possibility of a reoccurence is still there, maybe in a different form of cancer, a new tumor site or anything.

I don't mean to scare anyone. There is a lot of hope in the world of cancer. In this world, I have met some of the most spectacular kids, parents and people. I have met so many wonderful people that aren't fighting cancer for themselves, but for those of us facing this. I know there are MANY new treatments and cure possibilities. I know someday, cancer will be like getting the measles or something. It isn't here yet though and right now there are so many families facing this fight. I couldn't imagine how I would feel if I personally KNEW all of them. I never hesitate or back off from anybody facing this disease because I know they are a person with a spirit and heart that is meant to be known. I am so grateful to Caringbridge for giving us this opportunity to share our stories, our hearts and souls.

I know this is Friday and I don't mean to sound so down. It is just hard to watch families going through what *Katja's* family is going through. It has taught me to appreciate the here and now, the simple times in life, and to never hesitate on telling someone "Thankyou", "I love you" or just to let them know they have touched my life.

You have touched my life!



Love, Tracy









September 17, 2004 11:56 AM

I will update later but I wanted to post this request from our friend, *Katja's* page. You have heard me speak of her. She is almost the same age as our Katia. She too has AML and had her 2nd bone marrow transplant, in hopes for a cure, just 5 days after our Katia had hers. These two girls are so alike in so many ways...

I spoke to *Katja's* parents and they are just wonderful, intelligent, loving parents and genuine people. It breaks my heart to know all they are facing. This is an update from their page**

Thursday, September 16, 2004 6:18 PM CDT

*Katja's* condition has rapidly worsened today. Her liver is very enlarged, she is more bloated, and it seems like her kidneys are shutting down. We are agonizing over the decision to bring her to the hospital or to stay at home and keep her comfortable here, surrounded by her closest family and her most favorite belongings. She is comfortable now but is fading in and out of sleep. She is listening to all we say but talking very little.

Pray for peace and comfort for *Katja* and strength for us all.

*Katja's* Parents


**


Please pray for this family, for *Katja* and for her new little baby brother, Evan.






*******

*********************
Lena from Stockholm, Sweden was visitor 1,000,000!!!







September 16, 2004 11:07 AM

Good morning:)
Today is the last full day of the auction. Just a reminder.

Saturday is Tatiana's 12th birthday which is so weird to me because I can't believe she is that old. First of all, she is a little thing:) But, really she was the baby around the family until Katia came around. Tatiana is a sweet little girl and a great great playmate to Katia. There were many times that when Myron would bring the girls to the hospital, Tatiana would just play for a few hours straight with Katia. Katia would have had a bad day and then just hours of happy play with Tatiana. They were always playmates before Katia got sick. I think Tatiana was just happy to have a little sister that liked toys as much as she did. When Katia gets a gift, it is basically for Katia and Tatiana. They usually have their eyes set on similar or the same items. It is cute.

Sharayah and Tatiana are great with Katia. Neither have ever been jealous of the attention or the gifts she gets. They understand she is in a fight for her life. They understand the reality of this disease and they know that everyday is a precious gift with Katia. Katia is so darn huggable and lovable that she is hard to ever get mad at anyway. I mean look at that smile in the border picture, with her survivor hat on...could you ever get mad at that face???? I love that little dimple on her chin:)

Well, I will probably be back around later today but I wanted to put in a small update first because all 3 girls are home, together today and it made me think of how lovable and sisterly they are:)

Love, Tracy








September 15, 2004 6:00 PM
Day 223

Good day, evening... I know it is late.

Sharayah came home not feeling too well so I had to take her to get a strep test done. She will be just fine though. She is another one like me and Katia, not too easy to get sick (for the most part).

Katia has been a busy little ladybug since she opened her eyes this morning. She keeps me hopping!! She follows me, with her baby carriage, everywhere I go. If I take 2 steps, she takes 2 steps... It keeps her exercising!!

Well, I better sum this up.

Oh, by the way. A friend of mine, right down the road, has a treadmill that is taking up space so I should be getting in better shape really quick. Myron says he will do it also and of course, Sharayah (she is almost 16) is into exercising. It is hard to get out and walk so this way, it can be more dependable and there when I get the chance. My best time for doing things for myself? After Katia is asleep (around 11:30 PM). Other than that, she is right with me. Myron and the girls will side track her for a while but since she has had me all to herself for so long, that is where she usually ends up.

Katia has some bruising that is new but other than that, she has energy and is really doing well with trying to walk each day. She has lost the balance to do it without holding onto something but she uses her shopping buggy, postal cart or her baby carriage and she is up and going:)

Love, Tracy






September 14, 2004 12:38 PM
Day 222

Okay:) Myron says it is time for me to change out the pictures so that is my mission today. I stay so busy it seems that I just haven't gotten around to it. Am I complaining? No way! This is the "busy" I waited 11 months for!! I must admit, I wear out a lot quicker than I used to. That extra year of age has really seemed to make a difference. I am going to try to get a treadmill so I can build up my energy and I have "started" exercising again. Hopefully this will get me back into "HyperMode".

Well, Ms. Katia is doing just fine today. She has really had a lot of problems with her **bottom area** so she has been upset about that. There is a tear there so that is why she is so so sore. I feel so bad for her. She is eager to walk but it is short lived because it starts to hurt so bad.

You know what Katia is getting? Little bitty leg muscles in her calves. They are so cute! It used to be nothing but skin and bones but now there is the beginning of a little muscle. I will see her feel it after she sits down from walking so she knows what she is working for. She is also trying to avoid PHYSICAL THERAPY! She heard those words and didn't like the thought of doing that again. Not that it was bad but Katia is one to do things in her own timing and Physical Therapy never seemed to land in the right timing. The therapist was very nice and liked working with Katia.

It looks like Hurricane Ivan will miss us (sorry Ivan, yeah right!). It is breezy here today because of Ivan and we have extra rain but I think the eye will stay away. Did you see there is a new system building up though? What is it with this year. It is like the sea needs some Alka Seltzer or something.

Well, Katia wants me to go look at something. She has been drawing more and wants me to guess what it is. They are more recognizable than they used to be but I still play guessing games and it upsets her if I guess wrong. It usually has something to do with a TV show or food so that helps my guessing ideas:)

OH, some of you have asked about helping us to sell "Rain" CDs and yes, that would be super so I made a flyer that can be put up to advertise the CDs. You should be able to just open it up and print it. Just click onPrintable "Rain" Flyer and there it is. I hope this helps and we so much appreciate those of you who have already purchased the CDs, made donations, and participate in the auctions (above). We really want to get the KSF up and going and able to be used on a moments notice when we see a family in need. It is really hard for us to see a desperate need and have to tell the family, hold on.

I was talking to Sharayah and Tatiana last night about character building, etc. (one of my normal weekly lectures to my kids) and I told them the motto to live by is, "It isn't about GETTING but GIVING". Of course, I have many mottos to live by but I think our life more revolves around that one. In the Thank You song on Myron's album, it says, "Love comes back when you give it to someone else." That is so true and a very inspirational motto as well. I remember one day, quite some time back, Oprah's show was about doing a good deed for a complete stranger and she stopped at a toll booth, on a highway, and just paid for a number of people behind her. I mean that was just $1.00 each person but the fact was that it was unexpected and just a good deed from the heart. A good deed so many of you do each day is signing guestbooks. They really do make a difference! More than you will probably know. A few simple words, WOW! We have had some anonymous donations come in to KSF or donations without addresses and when I email those and ask if I can send them a CD as a thankyou, some of them say no, they have just really appreciated being able to follow Katia's story and it has changed their life in a positive way. They just want to make sure it keeps going. I appreciate that so much and I am glad so many people have followed her story and so many people have registered as donors, so many people have let me know they regularly go and donate blood and platelets, so many people have begun to tell their friends and family about Katia's story and how many people are going through similar situations and so many people have begun visiting more and more Caringbridge sites. That is just awesome.

With donations that come into KSF, we will be able to grow and reach out. A big thing we want to also do is to put together informational flyers and such and just spread them around wherever we go. Of course, we are going to continue the treasure box. Right now, we are packing up a big gift bag every 2 weeks and a young man that works with us, Justin, is delivering them to the hospital's Treasure Box on 2SW.

Let me tell you a little bit about Justin.


Katia and Justin


Myron went to a highschool to speak about Marrow Donation and share Katia's story. Justin was a senior about to graduate and he was really touched by Myron's talk. Right after the assembly was over, Justin came up to Myron and said he wanted to somehow help. He would volunteer to help in any way. Well, he talked to his parents about Katia and KSF and decided he wanted Myron to come to his Graduation Dinner and sing and share Katia's story. So, Myron did. At the dinner, Justin said that whatever money he received as graduation presents, he wanted to give to KSF (which he did). I mean this is a senior in highschool (now a college student) and to us, he is just so helpful if we call him to do things, like help us with this Treasure Box deliveries and whatever. I am so proud of Justin. His family is so proud of him.

Well, I have gone on and on. Please see the Prayer request section, as there are some updates up there.

Thank you so much for checking on Katia, for passing this website address around and just everything.

Love, Tracy









September 13, 2004 5:30 PM

Sorry these are getting later. We have been doing some cleaning up in the yard and organizing around the house (I have my 2 girls home from school so they can be my helpers!).

I have a prayer request for Hannahka. She was taken to the hospital yesterday quite sick. They have checked up on Katia for quite some time and now we need to check up on Little Hannahka. Please include her in your prayers. You can learn more about Hannahka on her page:)

Katia has been doing well today. She has been in a "good" mood. She finally got her autograph done for her book signing:) I was so proud of her!! She likes her name and especially when she writes it. So, the first 1,000 copies of her book will have her signature:)

Other than that, the auction is going along and will end on the 17th so if you haven't been over there...

Did you see the Oprah show today? I hardly ever get a chance to watch it but today I made it a point and the girls had Katia entertained. Oprah was making a lot of wishes come true. That has to be an awesome feeling to be able to make people's life wishes come true. I admire her for that!

Well, I must run. Katia wants to see me in an apron and in the kitchen. I must say, I am hungry right now too. Not sure if I ate lunch, I doubt it.

So, I better get cookin' (literally!)

Love, Tracy






September 12, 2004 7:00 PM
WBC 3.32
HGB 12.4 (up)
PLT 55 (this is going up!)
ANC ?? (not added up)

Sorry this is so late. I am just getting a chance to get on here and check emails and such.


Today's appointment went well. We were actually admitted to the same room (268) that Katia went to when she was originally diagnosed. She was in a crib then and we hadn't ever been in that room since.

Can you see her platelets went up? That is super. Maybe this new treatment is working but we will have to do comparison labs when we go to clinic next. Her potassium and magnesium looked right on target. Katia is doing well. I am very eager to see those platelets climb some more so we can move on with treatment, check her spinal fluid and get the spinal chemo going. She was in remission 11 months last time, following the end of chemo, and she is now 7 months since her Bone Marrow Transplant. We haven't checked her spinal fluid for 8 months. So we are all (doctor included) eager to get a check of the spinal fluid. The magic number for platelets seems to be 70. They need to climb that high before we can do any kind of spinal.

Katia is in a pleasant mood today. She gets very anxious but then she calms down quick. I was trying to get her to play Chutes and Ladders with the girls and me but that wasn't going well. There were just certain squares she wanted to be on and none of the others. She is eager to start "school" with me but only certain things like puzzles, painting, and I forget the other one (probably has something to do with cooking).

From the latest look of things, Ivan will be far enough away from us that we should only have another Tropical Storm (like Frances) but hopefully for a shorter time. If it stays far enough from shore, we shouldn't have Hurricane Force winds (winds greater than 75) and that would be nice. We can pretty much deal with the Tropical Storm but just not much rain from it.

Well, I am cooking dinner and if I am typing (Katia can hear me) than I must not be cooking:) Someone's belly wants to be fed.

Do you remember all those months (September 2003 to March 2004) that she didn't eat? Well she is making up for lost time!

Love, Tracy







September 11, 2004 7:00 PM

First I want to say that 3 years ago today, will be a part of our lives forever. I remember that day. I was totally awake when it happened and my neighbor came banging on my door, she couldn't get the message out too well and just turned on my TV. I was in shock. That was right after the first tower was struck and I watched TV, it seems, for the next few weeks, constantly on the news. The last 3 years have just really been of time of so much in our family. On the "Rain CD" there is a song, "America Song" which was written on September 11, 2001 right when Myron was sent home from work. He sat down and put his feelings into words. It is just a great song and a very inspirational song.

We are doing okay here. I am just praying this storm will keep away from our shores. Right now, it is off shore but still close enough to give us another "Hurricane Frances" type of feeling and a lot of storm surges. I wish nobody had to see the hurricane, especially right now, it is a category 5.

I just really don't know what to say any more about the hurricanes but I pray the season will end with this one.

We are praying for everyone in its path.

We will go to the hospital tomorrow for the Dacluzimab treatment. Katia really can't afford to miss or delay this treatment so we want to get it done now. Katia is kind of pink already and the treatment is even due till Monday but we have also gone down another mg on her steroids which could cause a flare of GVHD on her skin or liver which would mean, the H-O-S-P-I-T-A-L. We have to spell that because Katia doesn't want to go there. We will have to take her up to the floor, to one of the 2SW rooms tomorrow but she will know we are just there for a treatment and the clinic is closed on Sundays. Hopefully she won't give too much of a hard time.

Well, it is dinner time:) Myron cooked tonight so I can already know it will taste good!!!

Love, Tracy

PS Look at this:) Dear Hurricane Ivan, From Florida





September 10, 2004 8:30 PM

Oh, I feel so bad for Jamaica right now!! 150 mph winds! That is going to be just horrible. I pray for the safety of all the people there. There is no real evacuation for them unless people flew out over the last few days.

We are not looking forward to this getting here either. I pray our lights don't go out because that would mean (if it was out for 10-12 hours or more) that we would have to get Katia out of here. Where? I am not sure. The hospital would be over the bridge which would be closed and the fact that she can't be around other people rules out shelters. I don't know. I just pray it doesn't come down to that. Then it is getting things back together after the storm like replacing food that is lost due to electricity being out, cleanup and just the fact that everyone around you is going through the same thing. I remember the island. We all just didn't know where to start, it seemed.

Today, I spent about an hour in a gas line and then the gas pumped so so so slow. A lot of places around here are out of gas already and there are just lines and lines and angry people who just want to get gas and go to the next place to continue preparing.

I really pray this is the last one. I am hoping that our lights stay on. That is my biggest fear due to Katia. Other than that would be a fear of flooding since everything is already above levels around here and beyond. Next would be supplies if the hurricane really wipes things out.

All I can say is just pray pray pray. We are and will continue to do so for us and everyone else facing this.

But right now, our eyes are on Jamaica and our prayers are with them.

Love, Tracy







September 10, 2004 1:30 PM
Day 218

Good morning.

First, I just have to say that these hurricanes coming through are really beginning to get quite stressful. It is mainly the not knowing what is going to happen.

Our phone services, both home and cells, are acting up and that makes me VERY uncomfortable. Our internet is a cable modem and that too was acting up yesterday. I think everything is just really getting hammered down and not enough time to fix them. I have called both my cell company and home phone company and they are just overwhelmed with problems.

The kids are out of school again on Monday and I really have a feeling Katia's appointment will be cancelled Monday, Tuesday and maybe even Wednesday depending on damage. This hurricane is set to come right in on us or right next to us right now and that is no good!! We have too much water now and that would make things rise even more. There was a thing on the news not too long ago that is talking about ALL of Florida having to evacuate. There are so many rivers and the ocean that we are all going to be in a mess.

Okay, I have babbled on enough about this I guess. It is just getting me worried more now than the last ones. I am feeling very bad for those who have already been hit by this and those in the path right now. We have been to Kingston Jamaica before and it is just a beautiful place. I hate to see it hit. Not only is there the big, nice houses but there are also quite a few very poor villages. Just too much destruction.

Katia is doing okay today. She is getting anxious about the rain and such so I have had to turn off the news and put on cartoons for her. She has been walking around some today with her baby stroller.

Myron did get a chance to go on a radio station today and put out the word about help for Deseray's family so hopefully people will respond to that. Myron's heart is so tugged by all of this that I can just look at him and see it on his face. As we are worried about our own situations, we know there are others going through what we are and worse and it is just really heart wrenching. So many of us are having to put aside bills to prepare for hurricanes and such but when I find myself feeling down, which of course is easy to do and more and more often, I try to tell myself, "Snap out of it, people are worse off." It warms my heart to see news stories of people helping others, especially this one story I heard today about a class of elementary students trying to help another class in a school that was hit by hurricane Charley. Kids helping kids is just wonderful!!

Well, I better get this updated and move on. I am trying to get some laundry done and some towels and such washed. Katia wants to go blow bubbles:)

Love, Tracy






September 9, 2004 10:09 PM

I am hearing Katia in there laughing with Myron as I type this:) I love that sound!

Made my trip to Walmart. They already have cleared shelves! Florida needs to be restocked:)

Well, I just pray this passes or at least doesn't do much destruction and if there are anymore hurricanes out there, why don't you just drift on out to sea? Enough is really enough.

As I drove home from Walmart, I noticed that two streets down from us are flooded! I didn't even know that. There is a pond or something there that rose and is in those houses. Wow, so close and I hadn't even driven down that way. I don't know what will happen when more water comes in.

We have been praying for the people already being hit by this hurricane. A category 5 hurricane is just devistating, a 4 is a huge and a all the way down to the 2 category is no laughing matter. The problem with the Tampa Bay area is that all the water surges. We not only have the ocean but we have the Bay all through here and all the rivers so... we just really don't need this hurricane. So, keep those prayers going. They have helped spare us twice.

Katia has had a good afternoon. Myron made her hamburgers tonight with chips so she will be going to bed happy dreaming about her dinner:)

Love, Tracy

PS There is a link above where Katia's book is able to be preordered from the publisher now. The first 1,000 copies sold will be autographed by Katia:) We are working on that right now to get to the publisher...





September 9, 2004 3:22 PM
Day 217

Looks like Ivan might be headed this way. Not sure yet. They already called from clinic and said they MAY be closed on Monday. I don't want Katia to get behind on these treatments as that could cause a setback so I want to figure out if we need to get it done on Sunday... We will see.

It seems every weekend we are having to prepare for hurricanes. Walmart must be loving this! Well, they all have homes around here too, though. Does anyone have a "contact" at walmart:) I am thankful these other ones have spared our home and our electricity and I can only pray for the same thing again. Katia is eager to see more rain but we are ready to see a lot of sunshine (just not too hot).

Myron has been spending the last few days trying to place some CDs into different locations (stores) to get some of them sold. I have had a chance to meet with a few people that only Myron has known up till now. They are people that helped with the marrow drives and the selling of "Katia Song" CDs. It is so nice to finally meet them. I feel like I have known them forever. It is nice to be able to drive somewhere. I missed that while we were in the hospital.

I make that trip to and from the hospital about 2 or 3 times a week, either for appointments or taking in stool and urine samples. I can't believe that Myron used to make that trip everyday, sometimes twice a day. He put over 50,000 miles on his car while we were over there! I just realized that the other day.

Katia is walking around right now, pushing a baby doll stroller. It is so nice that she can follow me today. Yesterday was not a good "walking day" so that gets me pretty sore transferring her from one place to the next. As soon as our finances straighten out (??) I will go ahead and start the therapy on my back. I am hoping it will help some, at least the middle part of it. I don't think it will do much for my neck. Right now when I sit here and type and then stand up, I pop like one of those bubble sheets. I am not sure what all is popping in there. It doesn't hurt when it pops but it definitely hurts to sit or stand too long. I am only 35 years old and I feel so much older than that. I don't want to get so messed up that I can't be active because, well I am a hyper person! When I am home, I buzz around so everyone has to stay out of my way. I am known to bump into anything (walls, people, chairs, etc.)

As I type the updates, I can always see the front page picture and I love that picture with me and my girls!! This is the way it belongs:) Hurricanes or not, I am glad to be home. I think I will forever appreciate being home more than words can express:)

Well, I better go. Only one person bumps into things more than me, KATIA!! She has low low platelets so I better keep up with her.

Love, Tracy







September 8, 2004
Day 216

Good day:)

I still can't get over the million hits! Wow!

Today has really not been Katia's day, or should I say the last 2 hours or so. She is not too happy. I think it is all catching up with her right now. She can't have McDonalds and Subway, etc. She can't go here or there. She is just really quite upset right now. She is feeling okay except for her butt but she just can't seem to find her smile today...

I brought her to the computer for a bit and she played on her play page, looked at the graphics in her guestbook, etc. I read her some of the new messages and showed her all the BIG NUMBERS on her homepage. We looked through the auction pictures but she just can't shake this it seems. Hopefully this will pass quickly because her positive attitude is what gets her through a lot of the "crappy" things she has to do.

See that smile on the top of the page? That little smile brings sunshine into cloudy and horrible days. It is amazing what it does to our family when Katia is happy. We all want her to be happy happy happy. The thing with Sharayah and Tatiana being older is they worry about her like we do. Katia is Tatiana's playmate:)

By the way, Tatiana turns 12 on the 18th of this month. It is hard to believe because until Katia was born, Tatiana was the baby. She had a long reign as the "Baby of the Family" and I think she misses that sometimes. She is at an age (I guess it is a level more than an age) that she isn't ready to get older but she doesn't want to stay young either. She likes being told what to do still and make as few decisions as possible. Sharayah and Tatiana both like when I get in their rooms and help them organize or "clean them out!" They missed that about me. I hate clutter! I should work for "Clean Sweep" on the TLC channel. I think that is up there with some of my favorite shows right now. That is so me! I could use a "clean sweep" in my garage right now and a complete Makeover in my bedroom. Our room is the abandoned room in the house as far as fixing it up. The kids' rooms look like kids' rooms, the dining room, front room, living room and stuff are pretty okay. The back porch is fixed up for Katia and has a swing out there so that gives me a place to drink coffee and Katia a place to play. Our room, well it could use some help:)

I think I will actually try my hand at painting in there. I am not a "Ms. Fix-it" or anything but I am willing to try. If all fails, keep the door closed:)

Well, I have been emailed quite a bit about a few things so let me get to a few of them.

1. I am not too worried about Hurricane Ivan. Yes, I do think it will get this way but something tells me that we will again be pretty spared. I am so thankful to God the lights in our house stayed on through Hurricane Francis. We would have had to leave and since Katia can't visit other peoples' houses or go to a shelter? Well, that would be a hard thing to do.

2. Yes, we are still raising funds for Deseray's family. Myron is really putting a lot of time into that right now and will probably get on the radio next to share their story. So, if you want to donate, just click on the paypal donate button, donate and in the subject line put that it is for Deseray's family or email me that you mean that for Deseray.

3. The "Rain CDs" do have $2.00 shipping and handling as of September 1st. We have quite a few of these CDs that we hope to get sold. I have had a few people ask multiple CD orders. I mainly would need to know the amount of CDs you would be talking about and then let you know about the shipping and handling. It wouldn't be $2.00 each for multiple orders though.

4. The new treatment Katia is on will hopefully show signs of working soon. We do not test, each clinic visit, so we really don't know much yet. I am very hopeful her platelets will start producing though and her marrow will do just fine. What do we do if they don't? Not sure yet. We will cross that bridge IF it comes up. Right now, just pray this works:)

Okay, I think that is it. I appreciate those of you following her and no, your emails are not a bother:) Really. I try to get right back with you or answer the question on here if there are quite a few emails asking me the same thing.

Oh, and a big one! How long do I plan to keep this page going? A LONG LONG TIME!!!! Katia will someday be on here updating this page herself. So as long as Caringbridge continues to offer this service (they can always use donations, even small ones add up) and there are people reading the page, we will be updating and updating and updating. This will probably be the first page Katia's wedding pictures will be posted!!! The caption would be, "Daddy and Katia have their long awaited wedding dance!" Don't get me wrong, that won't be until she is like 30 years old!!

Well, Katia is calling me. She is after a few things she has seen on TV so now she is only watching movies and I am avoiding her seeing commercials. She thinks anything can be bought at Super Walmart and that we just have to "go get it". She's cute:)

Love, Tracy


PS I have a prayer request and I wanted to place it here first and then I will move it up with the others.

Garrett B.
I was emailed this site and went to it to visit. This little boy has been fighting rhabdomyosarcoma and seemed to be doing better and went back to school. The family found out August 13th that he has relapsed and could really use not only prayers but some cheering up. I am sure his family would appreciate any encouragement.











September 7, 2004 6:10 PM

1,000,000 hits plus! I couldn't believe it when I saw it. I had gone on some errands and when I came back, there it was! Unbelievable!

Thank you!

Love, Tracy







September 7, 2004 12:24 PM
Day 215

WBC 3.4
HGB 11.9
PLT 38
ANC 1700

We are back from clinic:) As we drove over there we could see the waves still hitting up on the bridge and some damage that had been caused by wind damage BUT all in all, I have to say, this area was again spared. I know there are a lot of people dealing with no electricity yet and a lot of people were flooded by the storm surge but this could have been a lot worse. We are drying our back porch still and have yard cleanup to do. There are still areas that are having gas shortages, etc.
I was telling Katia, on the way to clinic, to look at the sunshine and know that God put that there. She really seems to understand me. Although, she is eager to see another "big rain". I think the word HURRICANE does scare her but she likes to see the rain and feel the wind.

Okay, onto more news. Her counts have remained about the same which I am not sure if that is good, not so good, or what. I know we are trying to lower certain cell counts but I am not sure we are accomplishing this. We will do further testing on next Monday, which will be her next Dacluzimab treatment. She does well with these treatments so hopefully they will give us the resolution we are looking for with holding back the GVHD, allow us to continue to wean the steroids and show some increase in her platelet counts.

Did you see the page counter? Over 998,000 visits. You realize that today or tomorrow, it will hit ONE MILLION! If you are that 1,000,000 visitor, let me know:) So many people have continued to check on Katia since the beginning of the page, so many new people have come to her page and a lot of people come to the page each and every day. We appreciate you so much! All of you! This is a great support system for us.

I hope we give as much as we get through this page. I hope there is good information on here, things to learn and so on and so forth. When I started this page, I did it with the intent to make a difference and I think it has. I really think it has helped people see the need of registering as a marrow donor, donating blood and platelets, and also it shows how important prayer is and who you can pray for. Prayer has definitely been the number one key to getting Katia and our family through so much! I think of everything that has happened over the last few years and WOW! I would have never said, "Yeah, I could face something like that..." before this all happened. Only by God's grace and your support and prayers have we managed each day.

I appreciate your continued prayers for Katia and her health. We pray she will continue to be free from Leukemia and that her body will allow her to heal and just be an active, little healthy girl. We seem to have been blessed with a baby back in January of 2000 and we still seem to have that blessed little baby with us. We would like to see her start to blossom and be able to run around and do things closer to her age group. I think she will. I think Katia definitely has the desire to improve, now more than ever!

I found out today, she really isn't supposed to have a fish? OOPS! So, she will just have to not be around the fish, "Junior". She isn't around it much anyway since it is just a fish but I don't want to risk getting her sick in any way. She has enough to deal with.

I will ask that you continue to pray for our family. Myron has finished the physical therapy on his neck but they want him to do more on his shoulder. He still remains very sore and can't move that arm very freely. He hates feeling like he is not fully improving but it just needs more time. I am thankful his neck has improved as much as it has though. I would ask that you pray for our finances. Before we were confronted by Katia's diagnosis, I knew that families facing cancer went through hard times but I didn't realize this much. It just seems like a 2 steps forward, 1 step back kind of thing. We are really trying to not only get back on our feet but also be a help to a few others.

We are really hoping these, "Rain" CDs will sell so we can not only take care of ourselves but also do more things with The Katia Solomon Fund. That is where our "passion" lies is to really make a difference in an area that we have faced and are facing. We continue to appreciate those of you who have, and still do, contribute to KSF, buy CDs, and participate in the auctions, etc. These things are a HUGE help to us and also help us to help others. Even when things are quite desperate with us, we can't help but to see something else that another family needs help with and try to help them. Just like the "Thank You" song says, "Love comes back when you give it to someone else..." I believe in those words and without that, I think our lives wouldn't go anywhere. It can never be just about us.

I will try to get the next auction up and running today with the ceramic figurines the girls all painted together. I have to say, they did have fun:) I love seeing them all work together and have fun. I missed that a LOT while we were gone and couldn't be together much.

Well, let me get this posted and get Katia something to eat. She still eats non-stop, not a lot, but just all the time. Her "butt pain" won't leave her alone and that really tugs at my heart so please pray for her "booty". She prays for it:)

Love, Tracy


******

September 6, 2004 10:30 AM

Myron is at work. A plane came in but the news is saying there are no flights in or out? Not sure...

We are still under tornado warnings and another band of strong rain and wind is coming at us right now, it is beginning to make noise here. I have been through a tornado in a house (the house was destroyed) back when I was 5 years old. That house was located right in this area (less than a minute from here). It was just around my 5th birthday. Tornadoes are mean and come without real warning, unlike hurricanes. Myron said the roads are flooded and the wind was a lot when he went into work. I know he got soaked just going from our front door to his car and a big gust of wind came at him right when he stepped out the door. Katia gets nervous about Myron driving-even on a clear day- so she is pretty quiet around here until daddy gets back home. She has been watching cartoons with me and now she is with Tatiana watching cartoons. I remember I was watching Sesame Street right before the big tornado when I was 5. I was so into the show that I didn't want to go into the closet so they dragged me to the closet. I was with my babysitter and her family. She has kids of her own now and they follow Katia's story (HIYA NANCY).

Well, I just wanted to get on and tell you guys what is going on here.

Hurricane Ivan? Well, not sure what will happen with that. Our prayer is that it doesn't effect our parents. My dad and Myron's parents are in Honduras. My dad is on the mainland of Honduras and Myron's parents are on the Bay Islands (Roatan).
Honduras took a HUGE hit from Hurricane Mitch!


I will be back later. We keep an eye on this hurricane and others using this Hurricane Watch Site and it is always up to date and easy to look at the "Big Picture".

Thank you for checking in:)

Love, Tracy






September 6, 2004 7:22 AM

WOW! WE HAVE AWAKEN TO A LOT OF WIND AND RAIN THIS MORNING... THIS IS WORSE THAN YESTERDAY. WE STILL HAVE ELECTRICITY AND, BY THE SOUND OF THE NEWS, THAT IS A HUGE BLESSING. A LOT OF PEOPLE DO NOT. OUR POWER IS BURIED UNDERGROUND INSTEAD OF BEING ON POLES IN THE AIR. WE ARE VERY EFFECTED WHEN WE HAVE THUNDER AND LIGHTENING AND THERE IS NO LIGHTENING AND SUCH WITH THESE STORMS.

I JUST WANTED TO JUMP ON HERE AND UPDATE. WE STILL HAVE MORE BANDS TO GO THROUGH FROM THIS HURRICANE AND I UNDERSTAND THE ONE HEADED OUR WAY HAS TORNADO POSSIBILITIES IN IT. THE SKY IS JUST NOW LIGHTING UP (THINGS SOUND SCARIER WHEN IT IS DARK) SO WE CAN SEE HOW MUCH THE WIND IS BLOWING.

OUR BACK PORCH IS PRETTY FLOODED NOW BUT THE FRONT YARD IS OKAY.

I HAVE TO SAY, WE HAVE BEEN SO BLESSED THROUGH THESE STORMS. MYRON HASN'T GONE INTO WORK YET AS THE AIRPORT IS NOT SENDING OUT PLANES BUT HE WILL PROBABLY HAVE TO LEAVE IN THE NEXT HOUR OR SO JUST FOR THE SECURITY OF THE AIRPORT. KATIA DOESN'T WANT HIM TO LEAVE BECAUSE OF ALL THE WIND AND RAIN (WHAT IS SHE SAYING ABOUT MY ABILITIES?) AND I AGREE. I DON'T LIKE TO BE HERE ALONE WHEN SOMETHING COULD GO WRONG AND WE STILL AREN'T OUT OF THAT DANGER. BUT IF HE HAS TO GO, HE HAS TO GO.

WELL, I WILL BE BACK LATER. HOPEFULLY BY THIS AFTERNOON, THIS WILL ALL BE PASSED-WOW, BIG WINDS ARE BLOWING SO I BETTER SIGN OFF.

LOVE, TRACY






September 5th 2004

Hello everyone! Daddy bug here again!

First just a quick word of thank you for your prayers as Florida faces these scary storms. I'll tell you what! God sure answers prayer!

We have been spared twice now from what showed to be catastrophe in other places. Our prayers go out to those who have experienced loss, because of the storm. Katia has been so diligent about praying these storms away, she is so cute, I wish you all could hear her. I am 100ositive it is prayers that make the difference. Thank you.

Secondly, thank you so, so much for those of you who have ordered the "Rain" CD. I am so grateful for your words of praise and encouragement, they really make my day! Music is a special passion of mine, and it really is a pleasure to be able to share it with all of you, but most of all thank you for helping us build the Katia Solomon Fund through your contribution.

If you have any ideas on how we can sell more copies, we welcome your ideas.

We still have so many plans, hopes and dreams for our little foundation. I invision the day that it will be a household name throughout the country. With God's help and yours, I know that we will make a difference.

It is still such a miracle to have Katia and Mommy home. The girls and I certainly realize this, and make of every hour something special. We pray Katia's journey continues on an uphill climb, and that her story will bring a possitive message of hope to many.

My injuries seemto be better, I continue to seek medical help to hopefully come as close to a full recovery as possible. Again, thanks for your prayers and concern.

I hope you all have a safe and wonderful holiday weekend. Know that you are always in our thoughts and prayers, and we continue to appreciate all you do for us.

Luv always, Myron






September 5, 2004 6:17 PM

Still here:)

Just joking... We have done well today. There has been a LOT of wind, quite a bit of rain, etc.

We still have our electricity which is great! I would be in a mess without that because of medicines and Katia doesn't do well without AC.

Frances has now become a tropical storm but tonight, when it gets back over the gulf, it is expected to become a Hurricane again, which will affect us through the night. They are expecting storm surges with the tide and heavy winds still. I am sure we will be fine but once it gets dark out, the wind sounds scarier. Katia has spent quite a bit of time on our back porch (which is screened and closed in) and she likes hearing the wind and shining her flashlight at it. There are a lot of limbs blown down around the neighborhood but we don't have many trees in our yard, just 3 palm trees, 2 big ones and one squatty one. They are fine. We have a big oak tree in the yard behind us, which has been losing quite a few branches into our yard and the fence behind us seems to be getting pretty weak. One board blew off.

I am so thankful these last two storms have not done the damage they could have done, at least to us. I feel very bad for those who receive a lot of damage though. I am not sure what is going to happen with Hurricane Ivan but hopefully it will leave this area alone and just head back out to the open sea.

Well, thanks so much for checking on us:)

Love, Tracy







September 5, 2004 1:31
HURRICANE FRANCES DAY...

Okay, we are still here and kicking. This is going to be quick. Having some electricity flickering and a LOT of wind and rain. I don't want you worried so I wanted to jump on here, while I can and say hello and that we are fine:)

Love, Tracy

PS Katia's fish is named, Junior, for now. It is Junior after mine, Thor. She wanted to name hers Thor too but we decided to change the name. Mine is blue and has been around for about 18 months. Katia's is red:)

PSS Yes, she has her flashlight:)


September 4, 2004 7:40 PM

Signing off.. Lots of wind, rain and lightening and the lights are flickering. I will be back:)

Love, Tracy





September 4, 2004 5:37 PM

Well we are beginning to get a lot of wind and rain from Hurricane Frances. Katia is watching with her flashlight:)

She got a new friend today. A BETA FISH. Her name is "Red". Katia has wanted one like mine for a long long time so I got that for her for taking her medicine so so well and walking yesterday. She can't walk today. She says she feels like her legs are "crooked and breaking" so she is staying down today.

Please pray for the Florida areas. Almost everyone will be effected by this some how. I pray for everyone's safety and that things will go by better than expected.

I will be in touch later tonight if I can. Katia says to tell you hello:)

I am so glad so many of you are getting your "Rain" album CDs and enjoying them. Thank you for the wonderful comments in the guestbook. If you haven't gotten yours, head that way:)

Love, Tracy






September 3, 2004 4:01 PM

Why am I updating again? Well let me share some fantastic news with you!!!

Katia got up, off her bed, and just started walking... no help, no holding on to anything... just walking and walking!!! She is slow and shaky but she is independently walking through the house!!!! She told me she dreamed about walking and running last night so she wanted to try:) Isn't that sweet?

You can probably feel a lot of my happiness just by reading this but let me tell you, Katia is THRILLED!!! She is so happy for herself and she is determined to get up and walk more and more after she takes little rest when she gets shaky. She even went to the pantry and helped me pick out dinner tonight:) Chicken, Rice and Corn:)

She is so happy!! I am so happy!! I KNOW this will just continue to improve because she is so happy about the improvement AND the fact she can follow me around. That urge to be with me 24 hours a day just may be the key to get her moving more and more! If I leave a room, she has always wanted to trail behind me. Now, that she sees she is getting better, I am sure she will just keep walking more and more!

Well, I wanted to share that with you:) She deserves a trophy! She is my hero!

Love, Tracy


PS The kids painted a few ceramic pieces today and Katia painted a picture also. She has had a good time this afternoon!





September 3, 2004 11:39 AM
Day 211

WBC 3.4
HGB 11.1
PLT 34
ANC 1600

We are back from clinic:) We plan on just staying home over this weekend and hopefully everything will pass over. From the sounds of the latest news, we should be expecting Tropical Storm Force Winds and LOTS of rain (which in our area, we don't need).

As you can see over the last few visits, Katia's counts are again dropping. I think that is due to the new treatment. They said this would happen and it would keep on going down (which would hopefully show it is working) so we just have to keep her safe from sickness. She is on medicines to hopefully protect her from fungal and viral flare ups, an antibiotic to protect her from the UTIs she has been getting and right now, she is having to stay on pain medicine (2 x's a day) for her back and bottom (not sure what is going on there). Of course, she is still on her cocktail of other medicines.



Well, Katia wants to get on her Playpage so I should let her get busy plus she wants to paint today... She has a lot of plans.

Oh, my headache. Well, it isn't too bad. I didn't get any sleep last night but hopefully I can get a quick catnap today. Myron and the girls are pretty good at keeping Katia entertained but if she is in pain, she just wants me. That is okay though. I am needed:)

Love, Tracy






September 2, 2004 11:09 PM

Can't sleep, very bad headache. So what am I doing looking at this bright computer monitor? Not sure but I wanted to update. The storm is not due here (whatever part of it gets here) until tomorrow evening, Saturday and Sunday so we are going to clinic in the morning. I tried to get out of it (I know I know) but the doc said we have to come in for a few labs. I will rest easier knowing the labs have been done and nothing is too far out of whack for the weekend.

Katia is sleeping well right now, snoring very very loudly but I just watch her and I am so happy she is home. I don't think I will ever lose that appreciation!

Thankyou so much for those of you commenting on the "Rain" CD. Myron and I both enjoy hearing your comments. I am glad you are enjoying the CD. It comes from the heart and it is nice to listen to. Katia and I listen to it to and from clinic. I am not allowed to even talk or I have to repeat what she missed. You can just picture her sitting there singing along with Daddy:) It is cute. That is a definite bond between Myron and Katia:)

Well, this isn't helping my headache much, I took some Tylenol so hopefully that will kick in. It started with my ear this afternoon (bad!) and now this. I would say I can't wait for the weekend to get here but I LIVE IN FLORIDA!

The kids are out of school tomorrow and after clinic, you know what we are going to do? We are going to all sit down and work on some "Auction" stuff. These are going to be cute and Sharayah and Tatiana are going to help us so, well it should be better:) Katia is looking forward to painting.

Hopefully we will get it up for auction some time next week.

Love, Tracy

PS Good night:)







September 2, 2004 11:18 AM
Day 210

Good morning:)

The day looks so pretty outside but I know that will change tomorrow due to YES, ANOTHER HURRICANE! Can you believe it? Well, I guess we Floridians are supposed to expect this. I am really praying this thing will turn some. I mean we are having to prepare but I feel so bad for those that were just hit. People are trying to repair their homes and they will have to stand back and just watch more damage happen.

I went to Walmart yesterday to see if they had any lanterns and they are already out of them. They are out of D size batteries (I am not sure they ever restocked them...) but I did get a few candles. I need to do a Hurricane Ready Pack like they say to do but that is easier said than done both financially and the fact that stores stay out of stuff. I can't imagine what things are like in Polk County right now since they just had so much disaster... I pray this thing turns. There is another one in the path after Francis that may start upgrading into the Tropical Storm status today.

I will keep you as informed as I can about that but if you want to follow it for yourself, here is a perfect website to know what is going on in the The TampaBay Area.

Katia? Well, she isn't sleeping much at all. She is SUPPOSED to go to the doctor tomorrow-weather depending- and I need to bring it up. I hate to put her on another medicine but that may be what it takes. She is also so moody for the majority of the day. She wants this and wants that (mainly foods) but then she changes her mind or she says, "It isn't right..." Her favorite phrase right now is, "It isn't fair" which is so unlike Katia normally so I think she is just unbalanced somehow with all her meds and a lack of sleep.

People are asking how Myron is so let me summarize this. He is finishing up his physical therapy this week. He thinks his neck has improved but his shoulder is the same. He will have to go back to the doctor the following week and discuss the next move. They may want to just go ahead and do surgery or do more physical therapy on just his shoulder. I don't know. He is very sore and I hate to see him that way. I depend on him to do things for me and one of those is getting Katia from point A to point B alot of times. She is heavy:)

Aside from that, not much is going on with our family. I want to thank those of you that have made a donation to Deseray's Family. Myron is trying to get a few things worked out for them to ease their minds for a while.

Please pray for our friend Emily L. as is back in the hospital. She had gotten out but went right back with fevers. So, she needs your prayers. Emily just finished treatments for ALL last month.

Well, I better run. Katia is mad that I am still "working" so I better go get her before she tries to get down and gets herself hurt.

Love, Tracy

PS
ALL CDs ORDERED THROUGH AUGUST 30TH HAVE BEEN MAILED. PLEASE LET US KNOW WHAT YOU THINK, IN THE GUESTBOOK. I WOULD LOVE TO HEAR RESPONSES FROM YOU, AS WOULD MYRON. ENJOY:)

If you haven't yet ordered your CD, please do. They help us to make the Katia Solomon Fund grow. This has been a very big project Myron has been working on and we are glad to have it completed and available. There is a lot of love put into this album. FYI- I designed the cover and the inserts:)












September 1, 2004 12:25 PM

Good morning:)

I am going to do a quick little update to share something with you but I can't be on here long because KATIA WANTS TO PLAY ON HER PLAYPAGE!! Yes, she is all into this computer now (it is nice to have her back in the seat) so I am going to let you know quickly that she is doing well this morning. I told her I will have to get her a trophy for "Taking Her Medicines So Well!" I am very proud of her for how far she has come. She is really really trying with her walking and crawling and keeping her temper under "control" sooooo she wants to come and POP SOME BUBBLES! That is her favorite game on her PlayPage. Thank you Lori for putting this together for Katia AND everyone else that plays on it (Yes, adults, it is fine to say you play on the page!) So go to the "Virtual Bubble Game" and you can see where Katia spends at least 2 hours a day at right now. She works away up and down the rows popping the bubbles (she is very organized). She is asking me if I have her game ready:)

Love, Tracy




Click to play on my playpage!!



...this link is always above on the page for those of you who didn't know...





August 31, 2004 1:15 PM
Day 208

Good day.

Things are pretty quiet here today. I have some new pics to upload and place sometime today. Katia is keeping me hopping right now:) That is okay though. Her belly stays one step ahead of me when it comes to her meals.

We are trying to do a fundraiser for a family here. It is a pretty urgent need for them to be able to keep their home. I am will have more about that on The Katia Solomon Fund page. I will go update there as soon as I am done here.

You know, I never figured, when Katia was diagnosed in April 2002, that we would run into so many families going through this. I knew about Cancer and that many people were fighting but it wasn't known to me just how many. Cancer is supposed to be a rare happening but it seems so opposite that to me. As we go through our daily lives, there are so many people facing so many problems while their child is fighting for their life. That just doesn't seem right. But that is life. I remember we ran into a big financial dilemma in February, right after Katia's transplant. I thought my brain was going to explode. I thought, "What timing!" It seems those kinds of days happen more to us now than ever before. There are a lot of added expenses for families during treatments. Things we never imagine until we are there. I want to believe the "light at the end of the tunnel" is getting closer each day. I really try to not think about the "what ifs" although I see families get slapped right back down with relapse or new occurences each day.

Our family isn't the kind of family that ever wants to be "well off". We want to be able to get through each month, provide for our kids, etc. A big thing facing us right now is also the need to help others. I can't really put that into words (Myron puts his thoughts into his music) but it is just something we feel we HAVE to do. It is like the Treasure Box. There was a need and now that need is being taken care of over the next few months, thank you to YOU!

The Katia Solomon Fund isn't just about helping financially (even though most families say that is their biggest need) but it is also about helping people find information and contacts to confront and get through problems brought their ways. A big help is just knowing the right person to ask. I remember during the Bone Marrow Drives for Katia, this time last year, we met a LOT of people because, well to put it nicely, Myron and I really don't stop at the words, "That can't be done". We just go on and on until we find a way to get something accomplished. We try to use that same approach to helping others. I think anyone that knows Myron and I will say we are very persistant! That is a good thing, in this case.

So, if you can help Deseray B. and her family during this time. Please let me know and I will tell you how. Deseray is back in the hospital with high fevers as of last night and as you know, she relapsed some time back and was sent home on Hospice. The cancer has gone to her brain. She has been feeling a lot better these last few weeks, although they know the disease will take over. Now, she is back in the hospital. Her mother is the only parent, as her dad was deported back to Mexico, that is there to not only work but care for Deseray. It is very hard knowing your child's time with you is so limited and precious but you have to go to work and that still isn't going to be enough. This is going to be our concentration over the next few weeks. We are determined to help them.

So, please give me a few minutes and then go check out the KSF page to see how you can help them now.


Another small bit of news about Katia is that next week we will do the next tests to see if the CD25 cell count has gone down (we want it to go down) and also see how dropping the steroids by 1mg each week will effect her GVHD of the skin. Hopefully this new treatment she is on, the Dacluzimab, will protect her against another flare up and allow her platelets to come in better.

Love, Tracy

PS KATIA WANTED TO SAY HELLO SO THIS IS FROM HER:)

"VVHJHJLLKL;L
REE54567909-0=0=-SDSASADSASSA"

OKAY, THAT IS WHAT SHE WANTED TO SAY:)











August 30, 2004 8:50 PM (UPDATE: THIS HAS BEEN MAILED TO ME. THANK YOU, MISTY. THANK YOU EVERYONE WHO EMAILED ME, WOW!)

Quick question...

My dad called me yesterday (lives in Honduras) and he had read an article in the May 2004 edition of Reader's Digest. He wants me to read it but the magazine he has is mine so... If you have an old May 2004 copy that you can mail, I would greatly appreciate it. It is something about transplant patients.

Also, Katia's doctor called and the rest of her labs today looked fine. Her FK506 (anti-rejection medicine) level is low so we are going to up the dose a bit and see how it looks on Friday.

I am going to go check on a few sites and go to bed:)

Love, Tracy




August 30, 2004 1:20 PM
Day 207
WBC 4.1
HGB 11.9
PLT 37 (this went up a pinch)
ANC 1700
Potassium 4.4 (normal range)
Magnesium 2.3 (normal range)

Well, we are back and our clinic visit went well. We did the Dacluzimab Treatment #2 which went without any complications.

I also found out the ultrasound of the kidneys is normal and her sinuses are looking better as well as her lungs are still clear. All sorts of information here:)

Katia is going to continue on the treatment for her urinary tract infection, just at a lower dose. We aren't sure why she is in pain or why the infections keep coming back so we will keep her on a low dose antibiotic to protect her.

As you can see, the counts (WBC and such) are coming down. We expect her WBC and ANC to drop with this new treatment of the Dacluzimab but hopefully it will help her to get off the steroids (weaning starts again this coming Thursday by 1mg per week) and maybe see some platelets start coming in, and staying in. I would love to see them get to 70 over the next 2 months. That is my prayer.

Katia is feeling okay. She has been in pain with her butt quite a bit but her pain medicine, Roxicodone, takes care of it. She is still VERY weak and I think that is beginning to get to her. She wants to do things but she can't. We are working with puzzles and her Leapster and Leapfrog quite a bit right now because she wants to do "school" at home. I am glad to see she is eager to learn. She does very well with her puzzles. She gets frusterated if something doesn't go right but we are working on that:)

I updated the prayer request above for our friend Katja. I know quite a bit of people get confused when I write about "the other Katja" but these two girls are about the same age, both have AML and both just went through transplants. It seems our friend Katja really needs prayers right now. She relapsed just a while back and the blast cells are already in her blood. They were trying to wean her from her antirejection meds and steroids, hoping the GVHD would flare up and fight against the Leukemia but it doesn't seem to be doing much. I know her parents and doctors aren't giving up and have really looked over all their options so now it is up to prayer. If you haven't had a chance to go by Katja's site please take a chance to go. She has some nice pictures in her photo album of her fishing. I have followed Katja for quite some time and she has really found a close place in my heart. I wanted to share her story with you.

Also, pray for our friend, Christina G.. She had transplant for AML September 2, 2003. She is just a few days away from her one year anniversary!! Today, she is at clinic getting her "One year post-transplant workup". So pray that her spinal and bone marrow aspiration go well. She is due to get her broviac out this coming Wednesday which makes her VERY VERY happy!!! Christina is 11 years old.

Love, Tracy

PS IN CASE YOU HAVEN'T SEEN, KATIA'S MALL IS NOW OPEN FOR BUSINESS. SO THERE IS A NEW PLACE TO DO YOUR ONLINE SHOPPING. A PERCENTAGE FROM THE PROCEEDS GOES TO
THE KATIA SOLOMON FUND.
THERE ARE TONS OF STORES! HAVE FUN SHOPPING AND THANK YOU FOR YOUR HELP.











August 29, 2004 4:30 PM

Good day:)

We have had a pretty lazy day (NICE). Katia didn't sleep AT ALL last night so I am worn out and she is pretty tired but she won't take a nap. I think this new treatment is causing insomnia with her so I need to talk to the doctor about it. She just looks at me all night or mumbles and ask questions. I have to say, God has blessed me with the patience to deal with this because if you told me this would happen a few years back, I would have thought my head would be spinning. I feel bad for her and I just know she must feel awful not to be able to go to sleep. She likes sleep, a LOT so I am sure this is bothersome to her.

Thank you for keeping up with us. I really mean that. I was thinking about the support Katia and our family have and just how many prayers must go up for her and I appreciate this so much. I really know this is why Katia does as well as she does. It is just very good positive energy and the power of prayer.

God bless each of you. We have an early, kind of long day at clinic tomorrow. It will be treatment #2 of the new treatments. I pray we can get her weaning off steroids again soon. Her walking is going nowhere right now so I believe this will help her be able to improve.

Remember, if your child's site is not in the drop down menus above and you would like it there, please drop me an E-MAIL and I will go check out the site and add it to the drop down menu.

Love, Tracy







August 28, 2004 11:36 AM
Day 205

Well, today is here which means yesterday is gone:)

I am not a supersticious (sp) person but it was nice to see yesterday finish. We all went to bed around 8:30PM (I don't go to sleep until after 11PM) and it was nice to wind down. Why did we go to bed so early? Well, it seems Sharayah and Tatiana now have colds! I just hate that about them being back in school. We take good measure for when they come home each day, they bathe, brush their teeth, clothes go to the laundry, etc. Still, they got a cold. I will not allow that cold to land one germ in this house though:) I am on "Cold Patrol" so watch out germs! Katia gets mad when someone gets sick or coughs. She gets nervous she will have to go back to the hospital. Not your typical 4 year old...

Well, I want to take on a small project (no I haven't reached boredom yet) that I think I need to work more on. There are the drop down menus on Katia's page. There are children fighting, children who have passed, links to medical information, etc.

What I want is if you come to Katia's page and you don't see your name listed on that (if you have your own medical page) then please email me your link and I will be happy to go check it out and add it. Also if you have a diagnosis that I don't have listed in the index of different diseases, please send me the name of that disease and I will track down a good site of easy-to-understand information. Please be patient, this may take a few days.

I think that is it for now. No news on the ultrasound or CT SCANS so I will come back when I know something.

Thank you for visiting our friends in the drop down menus. Each person has a story to be told and a prayer to be said. Each person loves the encouragement of others. I say that most of Katia's progress is due to the love she feels and the encouragment she gets. Love is the best medicine!!

Love, Tracy





August 27, 2004 2:38 PM
Day 204
WBC 4.7
HGB 12.4
PLT 35
ANC 1500

We are back:) It was a nice drive home. I was reflecting on all we had been through over the last year and how lucky we are to have Katia here with us. We are having our bumps in the road but she is here!

I am told her WBC and ANC counts will be dropping as we continue these new treatments but todays counts look okay. We have only had one dose though and the next one will be on Monday. Katia got some new face mask today to help better protect her through these treatments. The other ones were just not tight fitting enough. She really likes these new ones:) As long as she is happy, we are happy.

I have been getting some emails about an email people are receiving about KATIA'S MALL. Yes this is true. Katia's mall is now open for business:) There are a whole bunch of very usable stores and a percentage from every purchase you make will go to KSF. So, if you see these emails, I hope you will read through them. With those emails, there will probably be short segments from Katia's book, soon to be released, "The Ladybug and the Dragon". We are in the editing phase of this now. I tell you, we are never bored around here:)

Today, Katia had an ultrasound of her kidneys, a CT of her sinuses and lungs, Pentamindine infusion, regular labs, handed in a stool specimen and that is about it. I have no word yet on the ultrasound or CT. I will come back when I know something.

For now, Katia is keeping me busy. She feels pretty nauseated due to the pentamindine treatment but she is hungry. She wants hamburgers from the grill tonight:)

Love, Tracy

URGENT PRAYER REQUEST:


Kaylyn Mei
Kaylyn is a sweet sweet girl that I used to follow, quite a bit, before Katia's relapse.
Kaylyn is a spunky 4 year old who was originally diagnosed with a malignant brain tumor in November 2002. A rare aggressive cancer called PNET Supratentorial Primitive Neuroectodermal (or possible Grade 3 Ependymoma). She has had two surgeries and five rounds of Chemotherapy. Then in June of 2003 she had a Stem Cell Transplant at MUSC in Charleston. The Tumor was gone. On August 26, 2004 the found out it has returned. Kaylyn will be having brain surgery this coming Wednesday. Please say a prayer for her family and Kaylyn.










August 26, 2004 10:27 AM
Day 203

Good morning:)

Long night...

Katia just had a donut and is drinking some milk so that should occupy her while I type. She is very into the little donut holes right now:)

I just told her that she has been doing so good with her medicines. She is taking the magnesium (YUCK) with no problems and the potassium, we went back to using the capsules, opening them up and mixing the granules with Ketchup. She is taking that fine again:)

I am so proud of Katia because I see her efforts and she just amazes me! I don't have to tell you that though:) You know how proud I am of Ms. Katia.

I can't believe it is almost September! I feel like I have missed a whole year. I didn't miss it, we just weren't here for so long. I really hope Katia can get out for the LIGHT THE NIGHT WALK. I would like for others to join us out there and walk with our time. There is no real planning involved, just being in a certain time and place but I would need to know ahead of time. A few people have asked me already but I haven't pursued it because there is not promise (as we know) that Katia will be able to be out there yet and what her restrictions will be at that time. So, I will let you know closer to the day.

Our goal is $2000 and with the CDs that have sold and the donations that have come in, we are up to around $200 so we have a ways to go. There is a site that you can go donate directly to Katia's Light The Night Fund and remember that every single dollar gets us that much closer to our goal.

One thing we have always been big on is helping the whole "cause". We didn't "plan" on ever having to face Cancer in our lives but we do and certain organizations and societies do a lot of research and work to help families and help find a cure so more families don't have to face this horrible disease. We will fight this disease until it is gone from our world. That is why we started The Katia Solomon Fund because we are determined to help and educate as much as our abilities and funds will allow us. Myron and I aren't shy (go figure) to talk to anyone about how they can help to educate others and how they can sign up for the registry through The National Marrow Donor Program or how to DONATE THEIR BABY'S CORD BLOOD. So, by helping in some small way, we can build The Katia Solomon Fund to do many great things.

Do you know what today is?

This time, last year, we found out Katia had relapsed. August 26, 2003. I could be down and very somber today but the fact is, she had her transplant and a lot of awareness was raised that hopefully found matches for other people needing transplants. Katia's health today? Well, we are moving along. I must say, I thought we would be further along by now but I also knew the possibilities that Katia wouldn't make it through transplant and how the GVHD can still get very out of control and take her away from us. So, I am just grateful today that we have her and she is moving along.

Tomorrow, we have quite a day ahead of us. She is due for Pentamindine (to fight pneumonia) and that always makes her very yucky feeling. She is due to have a CT of her sinuses, belly, lungs and kidneys tomorrow. She is will have her labs done and check her counts and also her CD25 cell count.

I am hoping a few levels will have come up some. Her potassium, magnesium and platelets. I am hoping the CD25 cells would have gone down some. These cells are normally fine but in Katia's case, too many of them cause problems. They are part of the problem with the GVHD and her low platelet count right now we think.

So, tomorrow as we drive to clinic, I will of course be thinking about the drive over the bridge on August 27, 2003 that kept her gone for 11 months. I can't help but to think of it. But, I will be rejoicing on the drive home tomorrow!!

Love, Tracy







August 25, 2004 11:25 AM
Day 202

Good morning:)

Well, we have no clinic today:) We will go in on Friday for her clinic and another treatment.

Katia is doing okay. She is feeling somewhat better, she is still very easy to get sore and I am not sure what is causing her so much pain. Maybe where they did the Bone Marrow Aspiration irritated something or maybe she is just aching. I can't decipher some things with Katia so it is a guessing game.

Her appetite has been good.

We have discontinued the yucky potassium medicine and put her back on the potassium granules which she takes in ketchup. She is better with that so hopefully her body will absorb them and keep them.

She is taking the magnesium liquid okay though so we are sticking to that:) It is just a weird, stiff texture. But, she drinks it and that is what matters.

All her other meds she is doing fine with. She is staying on the CIPRO antibiotic for quite a while, a lower dose, so she doesn't run a higher risk of getting these UTIs. She is still in a lot of pain with peeing so we are going to have to look at another source for that. I am not sure how her last urine culture did, whether it grew another gram negative bacteria or not.

What else? I am trying to rush through this because she has been very very cranky today...

Oh, thank you for your "Rain" CD orders. Please remember there are only a few days left in this month for free shipping and handling. By, the way, I designed the label and the inserts for the jewel cases so you get a little piece of my work also. This is the CD we listen to both ways to and from clinic so you can get a glimpse inside of "Katia's Mind" also.

I will update a picture or two today, later in the evening probably:) My camera has been acting up a bit lately but I do have a few to share with you. Hopefully when we are able to start weaning the steroids, Katia will lose some of her puffiness and be able to be "happy" a bit more in the day. The steroids keep her very high strung to put it nicely.

Thank you so much for checking on us. I think I have said before how important that is to see people dropping by and so far, almost 1 million people have dropped by:)

Thank you for your guestbook entries. I love to hear from you guys too about your lives and what you are doing. I like to hear your words of encouragment. I come to the guestbook when I need a boost of encouragment and it never fails to lift my spirits!

Love, Tracy







*******


August 24, 2003 3:55 PM
Day 201

Good day:)

We have had a pretty quiet day around here today. Katia isn't feeling too well so we have been (or at least she has) been laying low. She is watching the Muppets right now. Those songs certainly bring back a lot of memories.

It took me all morning just to check and answer emails because I had to keep walking away (which is why I prefer email WAY over the phone). So, I feel like I am catching up. Myron and I are trying to finish a few projects we are working on right now for The Katia Solomon Fund. We have very high hopes for this organization and to make those things happen requires a lot of time and doings.

I am putting together and informational brochure right now which I think will be very helpful to families once it is done.

Well, I wanted to pop on here and let you know we are okay here. Katia is feeling puny but we are hoping that tomorrow she will feel better:)

Love, Tracy








August 23, 2004 8:38 PM

Go check out our Ladybug Visitor today!





August 23, 2004 3:35 PM
Day 200

WBC 5.0
HGB 12.5
PLT 27
ANC 2200

Well, we are back from clinic:) Katia loves the trip home! Me too!

She had a dose of GCSF to bring up her WBC and her ANC so the levels are still up there. That was good. I was worried they would drop right back down but she had that Friday.

Okay, for the new treatment. We had it done today and will do it once a week for quite a while. The name is... (I finally know) Daclizumab (Immunosuppressant Agent-Use in combination with an immunosuppressive regimen, including cyclosporin (Katia is on FK506) and coricosteroids, for prophylaxis of acute organ rejection in patients receiving renal transplants; daclizumab has also been studied in pediatric bone marrow patients.Study of Daclizumab on BMT patients. One thing about this drug is it really knocks the immune system back out so we have to really really watch who and what Katia is around or eats, etc. We do this anyway but now we just have to "tighten the ropes" more.

We will wait and see if this works. As you can see her platelets dropped again, from 33 down to 27 so this is something we really must deal with and not wait any longer.

On Friday, she will have her regular Pentamindine treatment as well as a CT SCAN of her sinuses. I think that is all we have scheduled for Friday. We were going to repeat this treatment of Daclizumab also but we are going to only do it once weekly instead of every 4 days.

Another thing Katia got today at clinic, she doesn't know this yet, is the liquid form of potassium (YUCK!) and the liquid form of magnesium (YUCK). She is quite low in her magnesium and the amount of potassium she has been taking by mouth (pills mixed with ketchup) is beginning to get to her so we are changing the way it is given. I am not so sure she is going to like this much but hopefully it will be easier to absorb in her body with a lesser dosage and she can wean off little by little. She has been on potassium suppliments for so long and even so, her levels will bottom out. So, we just have to try a new approach. We gave another URINE sample to see what is going on with the UTI because she is still burning when she pees and she has been on the Ciprofloxacine since last Thursday morning. The pain should be subsiding by now.

Katia slept the whole way to clinic, in clinic and now she is asleep again. She is just worn out from long, restless nights and long clinic days. Hopefully we don't have to return until Friday so she can rest up and so can I:)

Well, I think I have gone on long enough. Nothing much but a bunch of medical stuff today... I am weary from thinking about it right now so I am going to go try and start dinner and take my mind off of things for a while.

With so many of our friends going through so much and with Casie, Michaela and Jordan just passing away, things have just been on the "tense" side for a while. I really need to see Katia begin to show improvements in her counts. Someone asked me was I worried about Bone Marrow Failure? Well until it gets in and does its full job, yes, I have to be worried about it but I think this is more of a problem with GVHD holding back the platelets and causing problems with her platelets. Why the other counts keep dropping and making her need the GCSF to bring her counts up, not sure. I try to not think to far ahead and just pray each day for small improvements. I pray mainly for Katia to start feeling better and wanting to be more active. I want her to be able to balance and start to walk more. She says her legs and back just get so sore. I talked to Myron today about us working with her on crawling because that will also help strengthen her hips. She was all happy when she heard the word, "Crawl" so maybe she will be willing to do this more. She also wants to start "school" with me. So, I am going to start spending more time on her mind and intellect also. Her vocabulary is great, if she is living in a hospital, but there are a lot of lessons she can learn around the house and in preschool books. So, we are going to concentrate more on that now. She likes her handheld computers and has really begun to learn how to operate them a lot more recently. I am very pleased to see her moving along.

Well, thank you for checking up on us. I didn't want to keep you waiting to find out about clinic:)

Love, Tracy









August 22, 2004 7:50 PM

Remember the "RAIN" CD has free shipping for the next few days. $2.00 from each sold CD goes towards our Light The Night Goal of $2000.00.

Please get your orders in so we can be working on our goal for Light the Night. This is a GREAT CD written and recorded with a lot of talent, love and many hours from Myron to Katia. We would like this to share how we feel with you, in the form of MUSIC.

From the beginning of this, we have always stood strong on how the power of music can help keep Katia's mood uplifted, as well as ours. The songs include love ballads, reggae music, Spanish and English and of course, "Katia's Song" is included also. There is a bonus track, a Rap song, written by a local artist during the Marrow Drives for Katia. The words are beautiful.

I could go on and on but I will let the CD speak for itself.

Love, Tracy






August 22, 2004 12:25 PM
Day 199

Good morning :)

We had a nice day yesterday! The kids made me a party cake with strawberry icing and sprinkles. They made me cards (which is one of my favorite things each year!).

My family takes very good care of me on my birthday making sure I really don't have to do anything.

Katia was happy when CAKE was mentioned and icecream!

She had an okay evening, kind of long night and today is seeming a bit highstrung. I will be happy when we can wean more from the steroids.

I still haven't found out much about this new treatment on Monday but hopefully this will help with the GVHD of the skin and the platelet count. I am really praying these 2 things can start improving and allow Katia to get away from the steroids. She gets very red easily which is usually the signs the GVHD is flaring up. She seems to be right on the border of a flare up right now so we aren't dropping the dose of steroids at all right now until this new treatment is in her system for about 2 weeks or so.

Well, they want me to watch a movie with them (it is hard to get me to sit still that long) so I better run.

Love, Tracy








August 21, 2004 11:20 AM
Day 198

Good morning.

I want to take some time here to update and share a few thoughts and feelings about last night's visitation with Casie's parents and just a few more thoughts but right now, my head is just feeling so overwhelmed.

I just learned that Michaela B. earned her wings yesterday around 9:00 PM. This young lady fought so hard and truly showed people how to LIVE even while battling this horrible disease!

I have also learned that Katja has now been released from the hospital. She doesn't know her leukemia is back. This 5 year old is just amazing. She had transplant shortly after our Katia and I want so bad for these two to meet. Our Katia just has heard so much about her other little "AML buddy". Right now, Katja (I know bouncing back and forth with these two names Katja and Katia can get confusing) is home and full of life. She seems so healthy but yet this "beast of leukemia" is back in her. She doesn't know yet. How are her parents going to tell her? She has a brand new baby brother and she has so much life in her. The plan of treatment is just to maintain her quality of life. This is just not right, not right at all! I wish all these kids could just gather together and someone come out and tell them, "Line up because we have this miracle pill that we can give all of you and you will never have cancer again!" Why can't that happen?

Last night, at Casie's viewing, I chose not to go up to the casket. I know Casie's appearance changed a lot in the last few days of her life and I want to remember her for her beautiful smile and her walking around the halls of the hospital. But, I had the opportunity to see Casie as I never had before. Some of her dear friends brought pre-diagnosis pictures and I just burned each of them into my mind. She was such a friend to so many. Her friends were truly saddened by Casie's lost and I hope they will be able to hold onto all the happy times they had with her. Casie was so funny, she always was, even while on treatment. I loved her sense of humor and it seemed she always had that. I would love to have a while to sit down with some of her friends and just listen to their stories about not only this wonderful girl that I knew but also these wonderful friends that always stuck by her. That is rare. A lot of people don't know what to do with the person that has been diagnosed and they seem to come around less and less.

I got to get up and say a few words to everyone there and Casie's parents and I just wanted to get up and say I am so grateful to have had the opportunity to meet Casie. I wanted to share so much about Casie but I knew everyone there knew the same Casie I did. I am 35 today and Casie was just 19 but Casie was so much for her age. She always showed such compassion and concern for Katia and even myself. Casie's parents were the same way. You know, on the halls of a cancer ward, we are all fighting the same battle, some of us different types of diseases, different stages of treatment but it is all the same. Casie never had a break with her treatment. If it could go wrong for her, it did. She never showed that in her attitude. She never had a "why me" attitude. I will always remember Casie for her courage. I am going to make a tribute page for Casie. So, I will post when that is up and going. It will have a guestbook so maybe,those that knew her or followed her site can share how her life touched yours.

I have a few prayer request I am going to post also.

Today is a little boy, Liam's, birthday and his wish is for as many people as possible to light a candle at 7PM in honor of his brother who is fighting Mitochrondrial Myopathy. You can learn more about Corey at his page.

Also, Lauren needs your prayers. She was diagnosed with AML in 2001 at the age of 11 and has relapsed twice. They are now looking at a 2nd Bone Marrow Transplant. She really needs your prayers along with her family. Tell her Katia sent you:)

Thank you and please remember the prayer request section above. I wish I could just change that around to a "Miracle Section" and someday maybe I will be able to. That is always our prayers.

Today for my birthday? Well, Sharayah, Tatiana and Katia made me breakfast (Myron is at work) and right now, Sharayah is baking my cake!! YUMMY! My girls are always so good about seeing that Mommy has a good day and Myron just spoils me most of the time anyway. I am so grateful for my little family. They go through so much with me. I follow a lot of kids' stories and on the days that I am down feeling, they help bring me back up. Today we will honor Casie in our celebration. I know Casie loved to have a good time so we are going to have a good time remembering her and all she stood for.

God bless each of you:)

Love, Tracy

PS BY THE WAY, KATIA TOLD ME THIS MORNING, "I FEEL BETTER MOMMY". LAST NIGHT WAS PRETTY ROUGH. SHE WOKE UP THROWING UP AND THEN SHE WOKE UP AND HAD A BIG POOPY DIAPER. THAT ALWAYS MAKES HER FEEL BETTER. SHE LOOKS GOOD TODAY AND I KNOW THAT IS AN ANSWER TO PRAYERS. SHE LOVES THERMOMETERS SO I GOT HER A NEW ONE LAST NIGHT (SHE ISN'T YOUR TYPICAL KID-THAT MADE HER QUITE HAPPY) SO THIS ONE IS A LOT QUICKER AND WE DON'T HAVE TO WAIT AS LONG. NOW TODAY, SHE JUST KEEPS WANTING ME TO TAKE HER TEMP (WHICH IS GOOD AND NORMAL). THANK YOU SO MUCH FOR YOUR PRAYERS!






August 20, 2004 3:55 PM

Please just say a small prayer for Katia. She just has been feeling very crappy this afternoon. I hate to see her feel bad. Her throat is bothering her, she is constipated feeling and a little warm (not a fever). Her back hurts from yesterday's "poke" and she just feels yucky. So please just say a quick prayer.

I was reading last years journal entries in August and this just rings too close to back then. I am going to stay nervous until we are able to get in and do a lumbar puncture on Katia and check her spinal fluid for leukemia. That has always been her biggest problem area. I am very happy her marrow is clear though. That is reassuring.

Love, Tracy





August 20, 2004 2:17 PM
WBC 2.8 (not so good)
HGB 13.5
PLT 33
ANC 800 (not so good)

Well for starters, good news:)

KATIA'S MARROW IS CLEAR OF ABNORMAL CELLS!!

That was a big relief. I was nervous about this one...

Next news, we aren't sure what is going on with Katia's counts are are still very concerned about these platelets. We start a new approach on Monday. Not sure what the name is, I forget and although Katia can pronounce it, it has slipped her mind too. It is a transfusion of a certain type of antibody if I am correct.

Another thing I just realized is my birthday is tomorrow (well I knew that) but I just realized Casie's funeral will be tomorrow. I am going to try to figure out some way of celebrating her life while celebrating another year of mine. I want to feel right about celebrating mine.

Let me share something with you. Last year at this time, I knew something was wrong with Katia. We had an appointment on the 18th of August and I cancelled it for the 21st of August. Then for some reason that was cancelled. I called back and I told them Katia was having really bad headaches, she was severely constipated and she was very cranky. She had also been running and breaking fevers on and off and seeming to sleep more. I could go on and on but I just knew something wasn't right.
So, the appointment was set up for the 25th. On that day, I had asked to have a bone marrow aspirate and spinal done even though it had recently been done and was clear. I had put the cream on her back for the procedure to numb it a little but the procedures were put off until first thing the next morning, August 26, 2003. That is the day we found out she had relapsed.
I had come home after hearing an all clear, updated the page and then got the call that not only was her marrow NOT clear but her spinal fluid was 93 percent leukemia cells.

So, all this kind of hit me today as I was driving home from clinic. Plus, I realized, it was when we went back to the hospital, that is when we met Casie. She was on her last round of chemo for her AML that she had been diagnosed with in April 2003. She relapsed again just a few months later.

So much has changed over the past years. When I was celebrating my 30th birthday, Katia was in my belly! On my 31st birthday, she was there to cut my cake with me and be happy she could have some. When I turned 32, I was going through a breast biopsy because there was a lump found. Katia was happy and healthy though and growing and growing. When I turned 33, we were in the hospital with Katia close to finishing her treatments for AML after being diagnosed the previous April. When I turned 34, I knew something was wrong but I never imagined Katia was relapsing so drastically right in front of my eyes. Now, tomorrow I am turning 35 after this very long year that we have lost some very dear friends.

Well, I wanted to share some of this in my morning update but I didn't have time (and we ended up being late to clinic anyway) but then as the day is going by there is just more and more popping into my mind.

I feel so bad for Casie's parents. Someone emailed me and said we must be getting "used" to this and such and although the email wasn't meant to be negative in any way, I can't say a person could ever get used to this. Not a doctor, nurse, parent, friend, anyone. It is just so much and it happens just far too often.

Well, I will be going to the viewing tonight. Tomorrow I will need to be home so I do not plan on going to the funeral. As I sit in the viewing tonight my prayers will be for Casie's parents, family and the many others that have gone before her and their families. I will be praying for the many people whom I have come to know and love and for all the ones that I do not know.

Love, Tracy






August 20, 2004 9:08 AM
Day 197


We are off to clinic today for labs but I wanted to get on here and leave this link to this newspaper article about Casie.

St. Pete Times Article August 20th Casie Rae Snow

It is such a nice article!

The auction ended with $179.00 going to Casie's parents. I appreciate your bidding. So many have emailed me of how Casie's site touched their lives and I appreciate your sharing your thoughts with me.

I will be back later, after clinic, to let you know how our visit went. Katia doesn't want to go because she doesn't want them to "poke her back" again but she is just going for a potassium count which only means drawing labs from her broviac. She is pretty unsure about this so I am sure she will be much happier on our return trip home but very quiet the whole way there!

Love, Tracy







August 19, 2004 9:45 PM

I am not going to make this entry long. I have had a lot on my mind today but maybe I will share it tomorrow. I went to Open House with Sharayah tonight and it was very nice to be able to meet her teachers this year. I met some of the ones I could only deal with via email last year and I let them know I appreciated their working with our situation and me via email!!

I plan to go to Casie's viewing tomorrow night. Myron will stay home with the girls. It is going to be hard. It has been a while since I have gone to a funeral. The last one was for another 19 year old that had passed away from AML, Rob Haase. That was my first link to finding out about the side effects of the chemos Katia was on. Rob was always so helpful and his parents were so so sweet to us when Katia was first diagnosed. I still stay in touch with Rob's Mom. This is a bond that we will always share. I just wish our kids could all get together later in life and talk about how they beat this but I guess not everyone can beat this here on earth and God calls them home.

I appreciate your prayers for me. I thank you so much.

Love, Tracy


PS Thank you all for making the auction successful. I am sure Casie's parents will appreciate this very much. They are such genuinely nice and wonderful people. Of course they are! Casie was their daughter!





August 19, 2004 2:06PM
Day 196

I will get on here later and do more of an update but I want to get Casie's arrangements here.

Brett Funeral Home
4810 Central Ave.
St. Petersburg, FL 33711
727-321-3321
800-647-4425

Friday from 6PM-8PM Visiting Hours



St. Jude Cathedral
5815 5th Ave. North
St. Petersburg, FL 33710
727-347-9702

Saturday Visitation 11:30-1:00 PM
Saturday Mass 1:00 PM


As I find out more information, I will let you know.


Love, Tracy






August 18, 2004 8:45 PM
Day 195


My heart just aches for Casie's family. I say this all the time but no matter what, although a child has suffered and they are no longer suffering, a parents heart will long to be with their child. Do we want them to suffer? Of course not. We never wanted them to be sick in the first place.

I talked to Casie's Mom today and it is just so much planning to go through, not for a wedding as a parent dreams for their daughter, but for a funeral.

I have gotten quite a few emails on how to send condolences. Well they do read the guestbook on Casie's page so that is always an option. Over the next few weeks, I have told her I will continue to print and bring her the guestbook or mail her the guestbook. They are SO touched by your entries. Remember, there aren't wrong words to express your sympathy. Just knowing people are out there and praying, all around the world means everything.

Okay, on to today's visits. Well, we are just getting home 12 hours later. First, we get there at 8:00 AM and it took awhile to even get labs because Katia's broviac didn't want to work. We finally get labs (not all of them) and are scheduled to go to the O.R. around 10:00 AM. Well, we got down there not too long after that but we needed one last lab first AND we needed to wait for the results before proceeding. We needed her Potassium level. Remember yesterday it had dropped all the way down to 2.4 so we had a transfusion, she got her full oral dose at home last night and then today right before the bone marrow aspirate, we find out it is only 2.5. The thought was to cancel and reschedule but her doctor chose to go ahead with the bone marrow aspirate but no skin biopsy and no lumbar puncture or spinal chemo. Mind you we still had the four hour IVIG transfusion to go through plus the hour flush after that.

We got her back upstairs from O.R. around 1:00 PM and then we had to transfer to clinic since it would be too long to be up in SPU since they close at 4:00 PM.

So, we get to clinic and first we had to do another transfusion of potassium (one hour) and then finally at around 2:45 PM, we started the IVIG. Well, once all that was done it was right before 7PM.

We rechecked her potassium level and it is still 2.5 even after the transfusion today?

The other problem sticking around is her platelet count not rising. Today they were 34. Really they should be double or triple that by now. Her marrow shows there are "platelet makers" but they just aren't working. We need to make sure this transplant doesn't fail so those platelets need to get working. Her doctor feels (and I agree) that it is the GVHD of the skin causing this pause in the platelets. So, we are going to keep her on steroids but also try a newer treatment to see if that will get in there and destroy the GVHD of her skin. There is also a new test we have done to count exactly how many of the "bad cells" are in there messing up her ability to make these new platelets. Once we start this new treatment, we will test those numbers again and see if the "bad cell population" is dropping. Pray that it does.

This is a great concern to us. If Katia goes into graft failure, there isn't a good "Plan B" option that wouldn't just be totally risking everything again.

We need these platelets to start producing. Her GVHD of her skin is still considered to be an ACUTE problem. It isn't just something sticking around that is chronic (annoying) it is really causing havic and can totally flare up at any time and we just can't afford for that to happen.

Katia is a very very strong little 4 year old!!! We are very hopeful for her full recovery but of course we stay very nervous. This is all in God's hands and we really have no control over this. As a parent, that is a hard place to be, out of control. We can make sure Katia eats what she needs, takes all her medicines, and so forth but we can't MAKE her body work. These steroids, the longer she is on them, are causing a whole list of side effects that we need to stop and let her body start healing. She needs to be able to start walking again for her physical, emotional and mental wellbeing. She was getting mad today at clinic as to why she STILL has to be sick, why she can't walk, why she can't go to McDonalds, etc, etc. We had a long stay and she had a lot of time to voice her opinions and worries and each of them were very concerning to her. She still looks a lot like a baby but her mind is well beyond her years. She is beginning to realize more and more that what she is going through is not a "normal way of life" and she doesn't like it. So please pray for Katia. Pray she can keep a positive attitude and continue being headstrung on beating the crap out of her cancer! That is the attitude she needs.

We don't share with Katia about other kids' passing. She is old enough to find a lot of fear in that and really not understand much of anything else other than to just be scared.

We pray that Casie is flying free tonight, cancer-free, with a new body.

This is a picture of Casie and Katia playing shortly before Katia's transplant. They had an awesome bond although they were years apart in age.





When a child passes, I do something that I have done for a long time (not sure where I heard of it). I either read a story or something about when a child dies, God lets them fly as a butterfly and spread their wings before their soul goes to Heaven and they get a new body. I think it was in an old "English Reader" my dad used to have around the house. Anyway, I always look for butterflies, especially the blue or white ones. There aren't many of those and you know how kids like to do something unique? Well today, as we were in clinic, I was looking out the window and Katia asked me what was I looking for. I told her that I heard there was a new butterfly and I was trying to see it. I spotted a few very pretty butterflies that seemed to just be fluttering around and enjoying their wings.

Love, Tracy

PS THANKYOU SO MUCH FOR GOING OVER AND BUILDING THE AUCTION UP!!!!

PSS Well, I have gone to a few sites and this has just been a HORRIBLE DAY!!! I have found out that Jordan G passed away today at noon and that our friend Katja Sufka has had the news confirmed she has again relapsed!

I just need to walk away from this computer tonight!







August 18, 2004 8:30 AM

We are at the hospital for the procedures but I just found out that Casie passed away this morning around 3:30AM. Please pray for her family during this time. I cannot imagine the emptiness they must be feeling. Although this was expected, I must say the news caught me offguard and I am sure I will not totally absorb this until we leave here today. I do not have long to update but as you know, I want the proceeds of the auction to go to Casie's parents to help them during this time.

Pray for Katia this morning. It seems the spinal will not be able to be done due to low platelets nor the spinal chemo so she will be having her bone marrow aspirate, skin biopsy (her skin looks bad again with GVHD) and her IVIG transfusion.

Love, Tracy



*****


August 17, 2004 4:18 PM
Day 194
WBC 3.8
HGB 13.5
PLT 31
ANC 1300

Well we just got back from clinic. WHAT A DAY! First, Katia's potassium was way down to 2.4 which is unacceptable so we had to get a transfusion of that plus just a delay on labs today. I really wanted today to be quick for her since tomorrow we will be there from 8:00 in the morning until around 4PM for her bone marrow aspirate, spinal and IVIG transfusion. Long day.

Myron had to go with me since my car was out of commission. That is part #2 of our bad day. We thought the job was going to be a tune up and fuel injector cleaned well of course it isn't. It is that plus a distributor, rotor and some other stuff. Not quite the car expert but I know it takes longer and cost about 5 times more than we planned. I have to have my car to go back and forth to clinic, etc. Without my car, Myron takes off work to go with us. Both of our cars were very well detailed inside and sanitized for Katia's sake so she can go to and from clinic in a safe environment without wearing a mask.

I always take great pride in keeping things in running order but my car has over 100,000 miles on it so I guess this should not be a shock. Just timing:)

We still very much count our blessings that we are home, with Katia and that we are able to go to and from clinic instead of living in the hospital but it is still very nerve wracking anyway.

But, while we spent the day at the clinic, we did some thinking and have decided on something. With all of what Casie's family is going through right now, the ongoing auction of the 4 ceramic pieces, all proceeds will go to Casie's family to use how they need during this time. So, let's make this a good gift for them. We want to do something very nice for them during this time. I will bring up something here that doesn't get brought up much on many caringbridge sites for different reasons but I think it should and we want to do something about it.

THESE KIDS FIGHTING CANCER USUALLY DON'T HAVE LIFE INSURANCE. A lot of kids are diagnosed so young or it is just a shock. Not many kids have life insurance and when this happens, it is impossible to get life insurance. Families are faced with medical bill after medical bill and then when their child passes, all the sudden something else is thrown their way, funeral expenses. It comes at the worst possible time. You want to do something nice for your child but unless someone steps forward, most of the time that is not possible. Parents can't even think clearly to make small decisions much less this. So, with the Katia Solomon Fund we are going to put aside a percentage of donated proceeds for this reason. We were able to help a family take their daughter's remains back to Mexico for burial and, until then, it was something I hadn't even thought of. That hit me very hard. So, we feel we have to do something about it. The first thing we are going to do is this auction for Casie. We will plan more auctions to help with this also but we are going to try to organize a plan here.

There are so many things we want to be able to do with the fund but of course, we need funds and then we need to put it to work. There are families that need help, we know quite a few personally but we want to be able to reach out.

You know how there are things you feel you have to do? Well this is what Myron and I feel we have to do. This was set before us and we just have to pick it up and do something about it. It just feels right when we do things with the fund and we are able to help people or to put funding into marrow drives. We have needed help so we know the importance of getting and giving help.

So, I ask that you first, pray for Casie and others struggling just like her, pray the auction will help out her family and pray that we can get this fund up and going more to help others. Hopefully the CDs (through the Katia Solomon Fund site) will sell and that will boost things.

Also, pray for Katia tomorrow. The plan is to go ahead with the bone marrow aspirate, lumbar puncture and spinal chemo. Pray her marrow and spinal fluid is leukemia free. She will also have a 5 hour transfusion of her immune building medicines. Just pray the day starts with better labs, everything in place and carries out smoothly.

Oh, I need to put her labs above. Her WBC and her platelets took a drop as well as her ANC? Not sure what is causing this. She does have a pretty bad urinary tract infection. We retested today to see how it is progressing.

Love, Tracy

PS Let me add this also. I talked to Casie's dad today and they are so touched by all the guestbook entries. I have been printing them and taking them to Casie's parents. They read them to her. One night her blood pressure was running very high and while reading the entries, her blood pressure lowered. Sometimes people don't know what to say, but let me tell you, those guestbook entries are very touching and they are really reaching out in a much needed way right now to that family.
Casie is the only one that knows the password to her site and she will not be able to get on her site to update. I know so many have wondered why she hasn't updated but she just can't and nobody else can do it for her. I would if I could but I haven't used her password since I helped her in the orginal setting up of her site. She took it over then and things just have just made it impossible for her to update and change things as she wanted. When I visited her last week, while she was still able to talk, she wanted to get on her laptop. They discussed bringing it into ICU and hooking her up to the internet. The next day, she was put into such a heavy sedation and coma, that she has not been able to. I so wish she had been able to sign on right then. I know so many of you want to hear from her. Please continue to sign the guestbook and have those you know who are praying for her, sign also. Thank you:)







August 16, 2004 11:03 AM
Day 193

Good morning. We did not make it to clinic this morning, car trouble. So we have to go tomorrow. I have no clue what is wrong with it but I didn't feel at all secure taking it across the bridge so I stopped, called the doctor and rescheduled for tomorrow. This is not something we need right now but we will deal with it, right?

Please look at the prayer request above. I have updated Katja's last night and Casie's this morning.

The last few days have been very hard because I see others going through things I pray we will never have to face. I used to say that about transplant though also and we faced it.

I cannot put Katia above any other kid because all these kids are just so special and they are miracles each day. I can only pray that God will give Katia a long long life, free of cancer.

I am not going to go on right now because I am pretty upset and I like to keep these updates on a positive side as much as possible. If you haven't read over the last few days, you may want to so you know more of what is going on.

Love, Tracy





August 15, 2004 9:15 PM

Well, we have had a long evening. Katia isn't feeling well, she has been throwing up some but mainly dry heaving. She just wants to eat, "alot" and "big pieces". She wants to "chug a lug" her drinks and have "alot to drink". All of this is not to out of the ordinary for Katia to demand but she doesn't get it. Tonight she has just been screaming and screaming over it and saying she feels sick and so on...

I feel so bad for her because she gets to the point you just can't communicate with her or get her to calm down. She has basically spent time with all of us here tonight and it is just wearing on us because there is no making her happy and at the same time, we wonder what is causing this and why she feels sick.

Her urine is still burning, not all the time but more than half of the time. There are a lot of WBC and there is some Gram Negative bacteria growing so we are going to scan her kidneys and see what is there. These things have been persistant with her.

Hopefully tomorrow's clinic visit shows good counts (at least not too much lower or too much higher) and she will be feeling better.

She is in my bed right now and I am hoping she will fall asleep while I type this. When I am there, she is pulling on me and just trying to demand this stuff but if she eats, she throws up or if she drinks, she throws up. So...

Well, she isn't going to sleep so I better end this. Please keep our friend Katja (link above) and of course Casie (link above) in your prayers.

God bless. Love, Tracy




August 15, 2004 3:53 PM
Day 192

Good day. All is well here. We are just seeming to drag this morning. I had to venture out for a book Sharayah needed for school and every place I went (in the rain) they were out of them. Finally, 4th place, I found it:)

Katia misses me when I am gone so I try to make quick trips.

It has been raining a lot yesterday and today. That kind of matches my mood right now though. I am really just taking a lot of time to think over the last year and be grateful for where we are. That part is easy! But, my heart is so torn for some other families right now. I just do a lot of praying and thinking. It is impossible to not smile though when I see Katia playing around here. She isn't walking right now, not sure why she is hurting so much. She has a pretty big bruise on her spine and some petichea on her back so I am sure she is pretty uncomfortable with that.

Right now, it seems, the bone marrow aspiration and hopefully the spinal will be done on Monday along with her 5 hour infusion of IVIG. Hopefully tomorrow's clinic visit will be short and we can get some answers about the lumps in her arms.

Well, I am not going to make this long. It is Sunday so I will let your eyes rest:)

Love, Tracy





August 14, 2004 12:42 PM
Day 191

Good day:) The sun is out now. We woke up to thunderstorms this morning with lots of rain, wind and thunder and lightening. It has cleared up now. We have basically put things away but we understand there are 2 more formed systems headed this general direction. One which seems to be wanting to follow Charley's path. The weather is just perfect for the formation of hurricanes this year and the climax of the hurricane season isn't even here yet. That is around the middle of September. Thank you for all of your prayers.

Katia has been in a lot of pain since about 3:30 this morning. She woke up screaming and shaking and then again around 6:15 AM. I think she has a Urinary Tract Infection but she won't give a urine sample. I need a sample to drive to the hospital so as soon as she does give me one, I am supposed to take it in. You remember how bad the last one got? Well, pray this clears up. Other than that, she is doing well. She is still very weak in her arms and legs and right now has 2 round balls, one in each arm. We think they are small muscles forming but I want the doctor to feel them on Monday and see what she thinks. Katia's walking has not seemed to help with any building of muscles but I think that is because she is still on steroids and will be, as long as there are no flareups, for another 2 months or so. It really takes a lot for her to stay on her feet. We help her stand up and give her something to hold onto. If we hold her hand, she is up to taking about 15 steps, maybe 20. She definitely tries more and she sits up now way more than laying down. That is good. It is much healthier for her lungs.

I am praying her platelets are high enough this week to do the bone marrow aspirate and spinal chemo. She really needs to be checked for leukemia cells in her marrow and spinal. It isn't good to let too much time go by. Her spinal fluid hasn't been checked since around January so that is a big thing to us to get a clearance on.

A number of you have email me about a Mall built for Katia, online mall. Yes, this is in the works. I am not sure if it is up and going yet but a percentage goes to KSF. That percentage differs from store to store. Through all of this, our family has taken a real financial bashing as we know other families do also. So we try to do different fundraisers to not only help ourselves but also others, when we can. We are able to help alot of families, especial new diagnosis or Spanish speaking families with information and contacts but others need simple financial assistance. We have been in such a crunch (to put it nicely) lately that we haven't been able to do much but try to keep ourselves "above water" (literally this last few days I guess). This family literally lives from day to day in every way. We appreciate those of you who have helped with donations via straight donations, Purchase of CDs and bidding on Auctions and gift cards that we have received. They have kept us able to move ahead and live day to day. We always try to come up with ideas on how to not only raise money but to also raise awareness and offer something that is unique for auction or purchase.

They say everything happens for a reason well I think a reason for all of this with Katia is to raise awareness to these diseases and to show a success story. I really think, through all the hard times, Katia will one day be talking to a group of people about her fight for life. I just look at her and I can see that. I really pray that I am right.

So, again, thank you for your prayers, donations, CD purchases, pray for the people on our prayer request list and all the people fighting these and other diseases, prayers during the hurricane, etc. I could go on and on. I look at the counter when I sign on a lot of times and just say, "Wow, look how many people have come by to check and just say hello." I know a prayer goes through your mind everytime you sign on and you have a genuine love for Katia and our family. God bless each of you.

Love, Tracy

PS Please always take a chance to glance at the Prayer Request Section for updates...






August 13, 2004 7:14 PM

Well our area looks good:) I am so so glad. I feel bad for those in the path of this mean storm and those in the area where the storm came ashore. I am so so so thankful that we prepared and didn't need to. We always have to take these hurricanes serious because you never know what will happen for sure until it is too late. We had bunkered down, all ready to be hit in a few hours and then it just changed its path slightly but slightly enough. This whole area is grateful I am sure. We never lost electricity today, no wind damage, no water damage, etc. Thank you God!

Well, I had to come share that with you since you have gone through this day with us:) See how prayers are answered.

Well, the kids are getting their showers and I need to start dinner. I thought tonight would be PB&J but it isn't. Katia did have fun with her flashlight though. They played around pointing them at the roof and putting them up to their faces and glowing. They are funny.

Well, I better go.

Love, Tracy

PS Please be sure to stop by the auction and place a bid. I think you will really like the pieces.






August 13, 2004 4:19 PM

Okay:) I think... (I wouldn't mark this down in stone) that we are going to be basically avoided of the hurricane or the 140 mph winds. I think what we will see will be a lot of rain, tropical storm force winds (40 - 70mph) and the threat of tornadoes. I am so glad we aren't having to look at the Bay here rising because that effects a lot of people and all the major bridges. Thank you so much for your prayers and I will be back:)

I told you I would try to keep you updated. As long as I have the ability I like to ease the worries.

Love, Tracy






August 13, 2004 3:15 PM

So far it seems things are going to be worse south of us but not sure yet. We are still expecting quite a bit of winds and rains and the threat of tornadoes but right now, it SEEMS that the storm will hit a little south of us. I will be back with more.


Love, Tracy





August 13, 2004 12:52 PM

CASIE UPDATE

THROUGH ALL OF THIS, CASIE IS FIGHTING FOR HER LIFE. DUE TO PRIVACY, I KEEP HER UPDATES GOING THE WAY SHE AND HER PARENTS AGREE TO. I RESPECT PRIVACY SO SO MUCH. PLEASE PRAY FOR CASIE. PRAY FOR A MIRACLE. PRAY FOR GOD'S HAND OF MERCY TO HEAL HER LUNGS, HEAL HER BODY. SHE NEEDS YOUR PRAYERS NOW MORE THAN EVER! I STILL PLAN TO PRINT THE GUESTBOOK AND TAKE IT ON MONDAY. HOW DO I FEEL ABOUT CASIE'S CONDITION? WELL GOD IS IN CONTROL. THAT IS ALL I CAN SAY. WITH GOD, ALL THINGS ARE POSSIBLE. WITH PRAYERS, ALL THINGS ARE POSSIBLE. THE TRANSPLANT DOCTOR IS WITH HER. SHE ACTUALLY HAD TO EVACUATE HER HOME AND SHE WENT TO THE HOSPITAL. I AM GLAD SHE IS THERE AS I AM SURE CASIE'S PARENTS ARE GLAD TO HAVE HER THERE. LOVE, TRACY
PS. I WILL BE BACK WITH ANY UPDATES ON CASIE AS WELL AS LONG AS I CAN.



August 13, 2004 12:07 PM

Okay, I think we are ready for this, as ready as we can be. We have windows taped, things out of the yard and in the garage, water buckets filled around the house, everything wiped down with bleach water, etc. Not only do we have to stay safe, we have to keep things extra clean still for Katia's sake. We have my brother-in-law, Tyron, here with us from the island. He was due to go back out on a boat but that has been delayed till Monday. He works offshore. So, it is good that he is here to help Myron out with the physical labor of things.

Myron's parents and my dad are okay. This storm is not effecting them but they are worried about us. Tyron's wife called last night and she is worried for our sake. I can't get hold of my dad. I guess his phone is down there (that happens a lot where he lives) but I think he probably knows what is going on. I have everything that can be recharged, recharged. I have batteries in everything, radio stations set, and we have peanut butter, jelly and bread:) We are going to be on the "Big Brother" diet if it comes down to it.

Katia is okay. Tatiana is keeping her happy. She woke up last night and threw up and ended up with us so please pray she is not coming down sick.

Please pray for everyone around here. A storm hasn't hit this area, like this, since 1921 if I am correct. The way and the time it is coming in is the worst way it could approach. It is coming in here while the tides are already high and that is not good. It is already at 110MPH and growing stronger as it crosses the waters right now.

The news channels have evacuated but are in their emergency centers passing on information. Most of the radio stations have turned things over to them.

Thank you for your prayers. Pray that Charley will not damage too much and will pass over and head back out to sea.

Love, Tracy






August 13, 2004 10:15 AM
Day 190

Good morning:) I hope I will be saying this tomorrow. I am really beginning to worry here. More so about electricity getting knocked out for a longer period of time than I imagine. We are in a higher lying area in Hillsborough County, not much higher because this is a flat county but not in an evacuation zone.

For those of you following us, we are in Northern Hillsborough County, Carrollwood area, near Citrus Park. Maybe that will help you.

Like I said, I will really try to bounce on and off here to update evening if it is just a few words just to let you know we are here and okay.

Thank you so much for checking this morning:)

Everywhere is out of supplies so we will go into this with what we have. We have God on our side so that is the most important part of all of this.

Thank goodness the kids aren't at school and that Myron is headed home. The airport closed or is closing but he has already left. I HAVE TO HAVE HIM HERE!!!

Katia is getting a bit nervous but mainly because we are having to buzz around here. I am about to get Tatiana on "Katia Happy Duty" so she doesn't get nervous. That causes her blood pressure to go up and it is already borderline even with her medicines.

Well, I better run. I will be back as long as the electricity, internet and Carinbridge are able to be used:)

Love, Tracy







August 12, 2004 10:23 PM

Okay, my house sounds like a newsroom with all the news and weather reports. Myron was able to get some sandbags and block the door and low windows. He had gone earlier today but they were all out.

I went to Walmart today and OH MY GOODNESS! They were out of everything that was necessary. I went to get peanut butter and I got the last one. I felt like I had diamonds in my cart the way people were watching that peanut butter in the cart.

I figure the worst part of this storm, from the sounds of right now, will be the winds for us. The rain expected isn't very welcome because we have had so much rain lately. Next, I very much worry about a loss of electricity so if you don't see me updating, that will be why.

Katia wants to sleep with us and I figured she would. I told her the flashlight has to stay on the counter, not in bed. I have all her medicines taken up for the next few days, I have bags of her IV fluids to get me through and I had her prescriptions filled. I just pray the electricity doesn't go out. I have a small cooler to put her medicines in just in case.

Back in September 2003, right after she relapsed, the electricity went out for the whole night at the hospital. She didn't handle the heat well at all!! She got very itchy and upset and she really got overheated. I have a battery operated fan, filled with batteries, ready for her but I hope it doesn't come down to that because that I think would get her nervous. Well, keep us in your prayers. If you don't hear from me over night, that means we are okay and just bunkered down. Myron will go to the airport in the morning, work, but they are supposed to close the airport before noon so hopefully he will get right back home. It is VERY important to me that he is here because he gives me complete security.

Love, Tracy

PS Please visit the auctions:)





August 12, 2004 6:31 PM

Okay, I will walk you through this as long as I have electricity. That is a big concern to me. As long as we have electricity, I feel very confident with Katia. Electricity is a touch and go thing here when the winds get high though. I get advisories and emergency announcements emailed to me and here is a portion of the latest. We are in Tampa, Hillsborough County by the way, for those of you who will be watching the news. We are right across the Bay from St. Petersburg and Clearwater. We are close to the Bay so that is what we worry about rising and of course, with all the rain, we worry about flooding. A big concern as this grows stronger and stronger is the power of the winds. I worry about house damage of course. A hurricane doesn't come on suddenly like a tornado or an earthquake. This one will hang around for hours doing its damage. By tomorrow evening, hopefully it will be leaving unless the MPH slows down or speeds up. So, for those of you watching we are in Northern Hillsborough County.

Here is the portion of the reports:
"... Storm Surge Flood And Storm Tide Impacts... With Charley Expected To Intensify... Then Accelerate... Along The Suncoast... The Threat Of A Rapidly Developing Storm Surge In The Storm's Southern Semicircle Is Great. Current Indications Suggest The Highest Surge Will Occur From The Counties Near Tampa Bay South To Lee County. The Current Forecast Track... Speed... And Intensity Suggest Storm Surges In Some Areas Equaling Or Exceeding Those Experienced In Hurricane Donna In 1960 And The 1944 Hurricane Each Of Which Made Landfall North Of Fort Myers... Or More Likely The 1921 Hurricane Which Made Landfall In Northern Pinellas County.

A Storm Surge Of 10 To 13 Feet Is Possible To South Of Where Charley Makes Landfall.

... Wind Impacts... Charley Is Forecast To Intensify And Could Become A Category Three Hurricane As It Approaches The Suncoast On Friday... With Winds In The Inner Eyewall Perhaps At Least 130 Mph With Higher Gusts. However... No Matter Where The Center Crosses... Current Forecast Data Suggest Tropical Storm Force Winds Of At Least 40 Mph Will Affect All Areas Of West Central And Southwest Florida Between Friday Early Saturday.

... Very Dangerous Winds Will Produce Widespread Damage... ... Destruction Of Mobile Homes Near The Center Of The Storm Is Possible...

... Structural Damage... The Majority Of Mobile Homes Will Be Severely Damaged Near Where The Storm Makes Landfall. Houses Of Poor To Average Construction Will Have Significant Damage... Including Partial Wall Collapse And Roofs Being Lifted Off. Many Will Be Uninhabitable. Well Constructed Houses Will Incur Minor Damage To Shingles... Siding... Gutters... As Well As Blown Out Windows.

Partial Roof Failure Is Expected At Industrial Parks... Especially To Those Buildings With Light Weight Steel And Aluminum Coverings. Older Low Rising Apartment Roofs May Also Be Torn Off... As Well As Receiving Siding And Shingle Damage. Much Of The Glass In High Rise Office Buildings Will Be Blown Out. Airborne Debris Will Cause Damage... Injury... And Possible Fatalities.

... Natural Damage... All Trees With Rotting Bases Will Become Uprooted Or Snap. Nearly All Large Branches Will Snap... And Major Damage Is Can Be Expected To Citrus Groves... Including Numerous Uprooted Trees... Most Common Where The Ground Is Saturated.

The Next Hurricane Local Statement From The Tampa Bay Area Forecast Office Will Be Issued Around 9pm EDT.

Stay Tuned To Noaa Weather Radio For Further Information On This Dangerous Flood. Heed All Evacuation Orders From Law Enforcement Or Military Personnel."

So, I will be back as often as I can. The skies are looking pretty dark and the wind is already picking up. Katia has her flashlight ready "to take in the rain" so she is happy. It takes a lot to scare her (mainly how we react) so that is good. Tatiana is more of the one to panic and then me. I have been through a tornado, a few hurricanes, one house fire and one flood that blocked us in our home for a few days when I was about 4 (that probably bothered my dad to be locked in house with 2 toddlers more than it bothered us). I am very afraid of lightening! I get very nervous with high winds.

Thank you for your prayers for us and all the many people who will be affected by this.

I will be back.

Love, Tracy





August 12, 2004 2:30PM
Day 189

Well we are bunkering down. As you know we should have Hurricane Charley (however they are spelling it) here sometime tomorrow and we are looking at a Category 3. This is not our first hurricane. This will be the first one for Katia. Myron, Sharayah, Tatiana and myself were on the island of Roatan, off the coast of Honduras, when Hurricane Mitch-Category 5 not only hit but stayed there for days! A lot of people lost their lives and a lot of economical devastation. The biggest fear back then was that there was absolutely nothing we could do to avoid it and protect Sharayah-age 9 then and Tatiana-age 5 then. We really feared for our lives. We also had a big lack of news and communication. All we knew was it was headed to us and it would be devastating.

This time is much different. We do have communication and the news (so far) but we have Katia to worry about. The doctor is, right now, working on a plan with the transplant team. With all the rains we have been getting, flooding is a huge concern, tornadoes and high gusting winds around 100 mph so we have to plan ahead. Myron bought some water yesterday and I need to get some flashlights and canned goods. We do plan to stay here unless we hear otherwise from the transplant team or our news broadcast in the area. There is no school tomorrow which is good. I like my family together in these kinds of things.

I will try to update later tonight and as long as I can into tomorrow. It is getting pretty windy here now and we have tornado watches going on.

Also for a simple FYI, on August 12, 1985 (this day in history), I was 15 years old and our family lost our 2nd house due to lightening hitting it directly. Our first one we lost was when I was around 3 years old, on the same property. Of course, my family no longer owns that property but I always remember this day when it rolls around. If we had been home, we most likely would have died because the house was hit directly (my room) and the electric box blew up and fire bursted out all of the electrical outlets in the house. We happened to be visiting someone in North Florida and returned home about 2 hours after it happened. Everything was lost! We were fine and my doggie was fine and that was all that mattered. I am one Floridian that definitely respects the weather and I definitely am one to follow precautions.

So, please pray for our family and all of those in the surrounding areas that this will pass and do little to no damage. I guess you can watch your news to know what is going on with us, in this area, if you don't hear from me but you can bet your tomatoes, I will update if possible!

Love, Tracy



PS Thank you for all the messages going into Casie's guestbook. I have already been printing some and will print the rest on Sunday evening.


****

August 11, 2004 8:13PM

Good evening.

First news first. I went to see Casie this afternoon and I was so glad to see her. Casie has just been such an important part of our lives since we met her but to me, she has always been a super and loving person. Casie has not been doing well BUT she is such a fighter. I admire Casie a LOT! Katia loves her and put Casie on a list (pretty short list) of people she would play with. There is a picture of Katia and Casie on Casie's website during one of these play sessions. I took a picture that Katia colored and of course, a ladybug bracelet to Casie. Katia told the ladybugs some secret for only Casie to hear. No word yet on what that secret was. Casie looked good, especially for all she has been through. I would love to see her be able to escape ICU for her sake and her parents' sake. That is a hard place to be. At least on 2SW she is around familiar surroundings and people that know her very very well. I would like to encourage you, strongly encourage you to go by Casie's guestbook and leave her a message. I am going to print it Sunday and take it to her on our next clinic visit, Monday. I told her I would do this. Casie has a long road ahead of her and will be starting some more treatments soon. She hasn't had any "breaks" in this transplant and not many before the transplant. Please keep her in your daily prayers that she can win this battle. I am sure she will LOVE the messages! Casie is a golden person with a heart that shines very very brightly!

Okay, what is up with Katia? Well, she is keeping Sharayah and Tatiana very busy lately. She stays with me during the day and when they come home, I am happy to have them there to entertain her. I have to say though that she keeps me smiling through our days. Katia is just very funny in many ways and sometimes she says things that just make me laugh and wonder just how old she is:) We are all so happy to see her in these surroundings!

Her biggest thing she wants right now? Food, food and more food! She definitely does eat. Katia needs her own grocery store. Not only does she eat but she is pretty specific about what she wants and how she wants it and where she wants to eat it.

You know what? She let me sleep in my brown shirt last night!! I haven't slept in it since August 2003!! See, if I wear it, she can hold onto it if she is sleeping with me so of course, she slept with me last night and pretty much held onto me most of the night. It is a win win situation:) Tonight she wants to sleep in her bed so there goes the brown shirt but hey, I had it one night;) It is one of the most comfy, soft, large, longsleeve shirts I have ever owned. I love big comfy shirts! Obviously Katia likes big, comfy, brown shirts for blankies:)

Well, I better go finish dinner. I am a little behind with dinner but I am very glad I got a chance to visit with Casie so PLEASE leave her a message and I will print that and take it with me on Monday. I will be printing it Sunday evening though:)

Love, Tracy

PS Please pray for Tampa. It seems we have a hurricane headed right for our area. We need to try to prepare as best we can for this (water, groceries, etc.) but I pray this will pass by us. We really don't need the trouble from this right now. With everything going on with Katia and finances, this isn't a good time but I guess it is never a good time for anything destructive.











August 11, 2004 12:45 PM
Day 188

Hello and good day:)

Things here are well. Katia is keeping me busy cooking and bringing her food today but that is okay. I like to see her eat. Myron made hamburgers last night and she had her "happy meal" she has been after so she is in a good mood.

I have a prayer request here for a family. I hope you will say a prayer for them today...

"Olivia Simon's family. (She didn't want a caringbridge page...) Olivia was a 13 year old girl who lost her battle from Ewing Sarcoma on Monday, August 9th, 2004. She endured a 2 yr. fight with this. She also has 2 sisters, Angel and Jessie. They were around her age. So not very far apart. She was surrounded by family when passing and went peaceful...."

I get so many prayer request each day, and with so many it just shows me how much is going on around us. I think a lot of times people feel like they are suffering through their problems alone but nobody is ever alone in their problems. That is the sad part. When you look around the people in this world (even those that seem to have it all) everyone has problems they are dealing with. It makes me see things in a different perspective. So many people are dealing with problems that don't have a name. Each of us have a certain capability of dealing with our problems and we can each only take so much. It is only with God's grace that we continue to get through each day. That is why I ask for your prayers on a daily basis. It helps us to confront the different things that arise day to day.

Katia has definitely learned to pray and she understands what it means to pray. She also understands what it means to be thankful for things. I know a lot of times she is in pain but she appreciates the pain is not as bad as it has been in the past. She is able to reason things out in a way most 4 year olds can comprehend. When I look at the picture of her on the front page, I see a wisdom behind those eyes that I know so well of her. Of course she loves to laugh and have fun but when she doesn't feel well, she understands that she just must stop until her body says she can go on again. Today is one of those days. She doesn't feel too well. She has a headache. I am thankful she can communicate this to me and things are not such a mystery.

Well, she is calling me so I better get this update posted and move on from here. Thank you so much for your prayers and your support. Thank you so much for those of you who have helped our family through these times. God bless you. We all appreciate you so much. Love, Tracy








August 10, 2004 10:00 PM

Good evening. I wanted to come share with you something that is going on in my house right now:) Myron and Katia are sitting at the piano playing it and singing songs:) I have waited so long to hear her over there banging on the keyboard and singing with her daddy. Earlier, her and I were sitting on the porch swing and I remember days I prayed that would once again happen. That was the thought that always crossed my mind when things looked bad for Katia. I just wanted that so bad. I appreciate every moment of everyday with Katia and my family all together:)

On that note, let me share with you this updated prayer request for our other little friend, Katja, who had her 2nd transplant for Leukemia AML in February 2004. Here it is:


Katja

KATJA NEEDS YOUR PRAYERS. UPDATE AUGUST 10, 2004. IT SEEMS HER COUNTS ARE JUST DROPPING, ALL OF THEM. PLEASE PRAY THIS IS ABLE TO BE RESOLVED AND EXPLAINED. PRAY THIS IS NOT GRAFT FAILURE (WHICH CAN HAPPEN) AND THAT SHE WILL NOT END UP IN THE HOSPITAL. I AM SURE THEY COULD USE YOUR ENCOURAGMENT ON HER PAGE.


Please keep her in your prayers and continue to prayers for Casie.

I pray for miracles daily!

Love, Tracy





August 10, 2004 8:12 AM
Day 187 (moving along!)

Good morning. I wanted to come back and let you know last night but I didn't get back to the computer. Katia's FK506 levels are on track:) That means we have found the correct dosing for her. Her potassium was working up to getting high so we can lower the dose a bit on that:) Katia was very happy to hear about less of that. Those are big capsules of granules and she takes them mixed in Ketchup 3 times a day. Now we can do less in just 2 times a day. We have added the magnesium back in due to that dropping in her levels but she took the pills good:) I am very proud of Katia and very thankful to God that she is doing well, away from the hospital. I never want to make it sound like we aren't thankful with Katia's health. We are thankful even when times are hard because we have her here with us and that "here" is finally home! I am thankful all day as I walk around the house doing "chores" and cooking dinner and such. We are never promised tomorrow things will be going well so we take each day as a precious gift. None of us are promised tomorrow.

I keep a lot of running prayer request posted on this page as well as prayer request in the journal entries or like I said yesterday, "Silent Prayer Request" for people without websites, personal issues or things that I just can't openly ask prayer for due to privacy issues, etc. I appreciate all of your prayers about yesterday's "Silent Prayer Request".

I remember at a youth meeting one time (many many years ago) there was a "Silent Prayer" brought up. In the youth group, things were seldom silent so we all were curious who this was about and we were buzzing around asking questions here and there. It was not found out until months later and when we did find out, it was known why it was silent. Sometimes the silence makes us search within ourselves and that alone is an answer to prayers. The youth the prayer request was about would have hurt her feelings if it was known and in a round about way, she ended up praying for herself. It is amazing how God works in mysterious ways.

Katia is calling my attention right now:) It is her breakfast time and she hears me typing.

Love, Tracy







August 9, 2004 3:08 PM

I talked to Casie's mom and I ask that you continue your prayers. Being in ICU is so difficult and Casie just hasn't been able to get a break with so many things going on. They very much appreciate all of your prayers and well wishes. These go so much farther than you know.

What has me down today? Well just so much going on with so many people. Plus the constant rain just seems to drive that home. For the most part, I am a pretty optomistic person and I always try to pray that God will keep my mind set on the positive. As most of you know, I keep up with a LOT of people and I am someone that takes things very much to heart. There are a lot of people facing very very tough times right now and since I can't mention them all by name or they may not have a website, I ask that you sort of do an "Unspoken Prayer Request". As I was growing up, we would have those types of request in church for those that had a very personal issue or a broad type of prayer request. Well, as many of you do, I seem to go from Caringbridge site to another by following links. So many lives are touched by so many different types of health problems and such. I try to not just focus on Cancer. I receive many many prayer request and yes, I do pray for them specifically. When I read something, I stop before I reply and say a prayer.

Each day, I pray as I drive, wash dishes, just anything for the many people who need prayer in their lives. God knows each of our hearts and He knows those in need of prayers.

Caringbridge puts a lot of faces and names with different diseases or illnesses. Caringbridge does such a great service to so many and I appreciate them each day for their providing this wonderful way of communication and outreach.

I just wanted to come back on and share that with you. I always appreciate your prayers for Katia and my family. I appreciate those of you who daily check on us and have continued to do so on our up days as well as our down days. I appreciate ALL OF YOU who mailed packages for the Treasure Box (what a great response!) and who follow the prayer request links I am able to get up on Katia's page. Thankyou! God bless you.

Love, Tracy



August 9, 2004 10:15 AM
Day 186
WBC 5.2
HGB 12.7
PLT 39
ANC 2200

We are back from clinic;) Yes, that was a quick trip!

Things are looking well with Katia. It is our plan (well the Dr.'s) that we do the bone marrow aspiration and the spinal (if her platelets are up some) next Wednesday. I am getting nervous winding up to that because of headaches Katia is having but all we can do is just pray that all is clear and we just keep moving ahead.

I wasn't going to update yet. I am sorta in the dumps about some things and I don't like to come on here sounding down or negative but hey, I can't keep you waiting for the counts either. I know you pray for Katia and you are happy to hear when things are going smoothly and we return home. I know Katia gets very happy. Both of us smile the whole way home.

Katia napped the whole way to clinic today and most of the way back. She was listening to the "Rain" album and daddy's voice just soothes her to sleep. Me too! No, I am joking.

Well, I will be back later today. I want to get a few things organized on the KSF site and I have quite a bit of laundry to do right now. Isn't that a beautiful word? LAUNDRY:)

Love, Tracy







August 8, 2004 5:50 PM
Day 185

Sorry so late. I have been trying to get the school items together for Tatiana and Sharayah that the store was out of the other day. No luck it seems. Everyone is looking for the same things and it seems Tampa has doubled its population and sent everyone to look for school supplies! WOW, I didn't miss stores too much. There is a Super Walmart about 5 minutes from us and that is really good, except on weekends and school or Christmas time. Man oh man! Someday, I will complete their list.

We went to bed VERY late last night. Katia was wired for some reason until around 2:30 AM. Myron was gone to the wedding for his friend last night and she doesn't like to sleep until everyone is in bed. She used to worry when Myron and the girls were driving from RMH to home and they would call to let her know they were home and safe. She is such a little worrier:) (I have no idea where she gets that from!)

Anyway, we have been trying to pull our lives together at home and it was not in the plan for Myron to be out of work at this time. It has made things extremely difficult on us financially, physically and emotionally. He has an appointment tomorrow (which has been worked through the workers comp-so there shouldn't be unforseen problems) and hopefully he can get this surgery behind him and be out of so much pain and back at work. I feel so bad for him because we rely completely on him for so many things. It is like being a mom, you aren't allowed to get sick. Well daddies aren't allowed to get hurt.

Please pray that things will straighten out very soon. The beginning of months (as you all know) are the time when everything seems to be due and the busiest.

Please pray for Casie. I am not totally sure what is going on with her and I am trying to find out but I know she really needs prayers right now so please pray. Love, Tracy







August 7, 2004 2:50 PM
Day 184

Hello there:) I hope you are having a good weekend. Today, we have decided to RELAX! Right now, Katia is watching "Look Who's Talking" with Tatiana. That is a cute movie:)

Myron sang the National Anthem at a marathon today and tonight he is the Best Man in his friend's wedding. He is singing there also tonight. Tomorrow, we plan on having a nice, quiet family day:)

I want to thank those of you who have already put in your orders for "Rain". This is an album we are very proud of and we know you will be very pleased with!! When we are in the car going to clinic, etc. that is what we listen to. Katia helped pick the line up of the 12 songs. The funny thing is since the song, "Rain", has been done, it hasn't stopped raining here:) We have been getting a LOT of rain!!!

We are also trying to make some final decisions on Katia's Make a Wish. She wants a playhouse but she is pretty wishy washy on that decision. I really think she would have a good time with it. The inside would be a kitchen/living room combo. She is very big on having her own kitchen and she loves to have a living room. The design of it is what is hard. I want Sharayah and Tatiana to be able to play in there with her and I want it to be safe to get in and out of so we have a lot of planning to do. The other thing we had thought of was some type of computer for her to use computer learning programs on. Since I used to homeschool I have a lot of the Jumpstart programs and such from Preschool through 6th grade. Sharayah and Tatiana used to use their computer a LOT with these programs and quite a few other ones I have but their computer went kaput while we were in the hospital this last time. It was old (like 8 years old) and did it's time. I personally think the house would be great for Katia though. We worry about the weather being too hot or rainy for the most part of the year in Florida but we need to decide quickly. She can't do Disney or Disney Cruise right now or for quite some time and she can't go to any shows and such so...

Well, we will see. I told Myron it would be cute for her to have a playhouse and it could be "The Ladybug Club" kind of theme:)

Can you believe this page is about to reach a million? That is just so awesome!!! It just shows how much love has come to Katia and our family. Who will be the millionth person to sign on? Unbelievable!! Well, that is about all for now. I have a little project I am working on so I better get back to it while I can.

Thank you for dropping by:)

Love, Tracy







PRAYER REQUEST:
PLEASE ADD THESE PRAYER REQUEST TO YOUR NIGHTLY PRAYERS...

Baby Allie S.
Allie was diagnosed with Leukemia AML in May 2004. She underwent transplant a few weeks back but it seems the leukemia cells are taking back over before the new marrow has a chance to work. You can visit her page and read what this little baby and her parents have been through and offer them words of encouragment.


Christine C.
Christine was diagnosed with a brain tumor November 2001. She has undergone extensive treatments and she is such a sweet girl who has just fought and fought. Now she is starting over again with more chemo (non-protocol) to prevent/elimate new tumor growths. Christine is not giving up. That is just not in this sweet girl!!





August 6, 2004 2:19 PM
Day 183

As Katia sits here with me, I thought I would put in a quick update for you:) (Katia say hello!)

We have had a nice morning and afternoon. Katia's booty is bothering her a bit and her head is stuffy but other than that, things are going pretty well. We have weaned a pinch more on the steroids so she is now down to 14mg a day from 30mg a day. We are going down about 2mg each week but then we will stop around 10mg and wait for a bit to make sure her GVHD doesn't flare up again in her liver and on her skin.

She is eating VERY WELL!! She is sleeping well and she is staying active throughout the day. She still has basically no balance so she holds onto us or her buggy to walk around but she is trying and she can walk for longer times. She has about doubled her distance since we have been home!

She is much much happier for more parts of her day (still has some serious temper flare ups!) so that is improving.

Sharayah and Tatiana will be off for 2 days from school (weekend) and hopefully Katia will be eager to play with them. Yesterday she started up this thing of not wanting to be around anyone but me but then there are certain things I say she can only do with them and not me, that usually solves that problem:)

Well, Katia is upset right now. Her booty is really bothering her so I better go tend to her.

Thanks for checking up on us.

Hope you like the new photos:) I enjoy taking photos, much more, at home!

Love, Tracy



*****

August 5, 2004 5:52 PM

Well, the kids are home from school and Katia is very happy. They have all their paperwork for me to sign and they are both very happy with their teachers and classes:)

Katia, however, is attached to me like glue. She is very needy of my attention (which is fine) but Sharayah and Tatiana want to see her, too.

I still haven't heard back about her levels of FK506 and her Potassium but I will call in a bit. I just wanted to come update some links here and drop in and say HIYA.

Also, I want to put an update on Casie. She seems to be stable and holding her own but she is very depressed. I can only imagine how all of this has taken a toll on her. Being in ICU and with so many things going wrong and so many uncertainties, I know it is hard to keep your chin up. I really hope she will be released from ICU and back up to 2SW soon. If you HAVE to be in the hospital, it is always more comfortable to be around people you know and people who know you.
~~Thank you, Trish, for the update on Casie.~~

This has been such a long year but I have really learned a lot. I have learned a lot, obviously, about Katia's illness and transplants but also a lot of life's lessons. I wish I could have learned it in an easier way but the fact is, so many people are facing tragedies everyday. Even when things seemed their worse, I always knew there was someone wishing they were in our shoes.

On a day to day basis, I try to look at things with more appreciation, understanding, and an open heart. We never know what the person next to us is going through. This goes for kids in school, people in our workplace, neighbors on our street or that person that practically knocked you over to get ahead of you in the grocery checkout line. We just never know.

With that, I will close. Thank you for checking in:)

Love, Tracy




PRAYER REQUEST:


Amy Mereck
This is an amazing young lady who, for years, has been fighting Osteosarcoma. I have posted prayer request here for her before and your prayers and God have done amazing things in her life. She needs your prayers again. Her tumor is growing and she has an infection. She has been in the hospital but is now home on IV antibiotics that she's giving herself. She learned yesterday that a nurse who she was VERY close to in the hospital (one who came and sat with her at night when she couldn't sleep or just needed to talk) was killed when she was struck by lightening at a childrens' camp this week. Amy is very, very depressed about this, plus the not so good news about her disease. Please go by her site if you have the time and read up on the past month or so.

August 5, 2004 1:08 PM
Day 182
WBC 5.8
HGB 12.8
PLT 38
ANC 2600

We are back from clinic and her labs look fine. The platelets are down again though. She will have a bone marrow aspiration next week and we hope that by then, maybe, her platelets will come up some so we can do the spinal chemo.

I am still waiting for the labs on her FK506 levels and her potassium but I think both will be in a good range.

Right now, Katia is sitting on that green sofa behind me (remember the one she was laying on in the picture just days before her relapse?) and watching me work. Things feel RIGHT right now.

Sharayah and Tatiana are off at school and it feels a lot like this time last year. It was around this time last year that Katia had her bone marrow and spinal checked (August 2, 2003 I believe) and all was clear but then the headaches started and she just started having problems, new ones each day. On August 26, 2003, we found out she had relasped.

Mind you, I have nothing against the month of August:) This is the month of my Mother's-in'law birthday, my Dad's birthday and my birthday! I have always been a big fan of August!! I am just so glad we are home and we were able to come home before having been gone a full year. I think that would have really hurt me more emotionally BUT God brought us home!!

Please see the prayer request section above. Jordan G is not doing well at all. The doctors give him just a short amount of time left. This is not the news his parents were expecting at all.

Also, for those of you asking about Myron and his shoulder and neck. Well I will sum it up as short as possible. He is pretty much going through a runaround with the doctors and workers comp. He needs surgery on his shoulder, that is for sure. They don't want to do that until they find out from a neurosurgeon about any nerve damage. Well since it is work-related, he is having a time with getting the appointments for a doctor willing to work with a workers comp issue? He had waited nearly 3 weeks for a Neuro appointment only to be told when he got there, the doctor wouldn't see work-related cases. He had originally told them, when the appointment was scheduled, it was work related. Plus, the paperwork sent to them from the orthopedic doctor said it was work related? Anyway, I am not sure how all of this works. We try to keep this page focused on Katia which is why I haven't updated about this but I know there are many people concerned over Myron. Since he is the one in our house who works full time, this is an issue that we have to straighten out ASAP. Myron is in a lot of pain, daily, and has to continue to do a lot of our errands as well as deal with this issue so please pray for him that this will soon be resolved, he will find comfort again and be able to get back to work. This is just not good timing for all of this to be going on.

I have been trying to keep the Prayer Request more updated. I have more to add but I am not on here too much right now due to trying to re-adjust everything at home. Hopefully things will slow down for us (I don't see that happening any time soon) and we will be able to "chill" for a bit. We are working very hard on The Katia Solomon Fund right now. We have a few families who desperately need help that we are trying to raise the funds for. We want to get that fund going strong enough that we are readily able to help others, fund a marrow drive or anything that may come up. When people need help, it is usually not with a lot of time on their side. Myron and I are determined to make this Fund a success and use it to improve lives. God has led us right to this need and He will help us make it work.

Well, God bless each of you and have a good day. Also, if you haven't noticed, the album, "Rain" is now available on the KSF site.

Love, Tracy

PS This was sent to me via email and I wanted to post it here. I know a lot of you will make the call since you have seen how the National Marrow Donor Program has helped Katia and many others.




Dear Friend,

The National Marrow Donor Program (NMDP) is the federally funded agency
in the US that coordinates searches for unrelated bone marrow,
peripheral blood stem cell and cord blood donors. Since its inception,
the NMDP has facilitated nearly 20,000 transplants and currently lists
more than 5 million volunteer donors and 30,000 cord blood units in its
registry. Without the NMDP, thousands of patients would be unable to
undergo a lifesaving transplant.

In order to continue its vital work, the NMDP's federal funding must be
reauthorized by the US House of Representatives and the Senate. The
House of Representatives reauthorized funding in October 2003 but the
Senate has yet to act.

Please take a moment to phone the chairman of the Senate Committee where
the legislation is stalled and urge him to pass HR 3034 this session.
Here's how:

1. Call Senator Judd Gregg (R-NH) at 202-224-3324

2. Tell the receptionist that you are calling to strongly urge the
Senator to pass "clean" legislation to reauthorize the National Marrow
Donor Registry before Congress adjourns this year. (Clean legislation
means that it does not include other legislative initiatives).

3. If you or a loved one has been helped by the National Marrow
Donor Program, feel free to briefly share your experience with the
receptionist.

4.Thank the receptionist for taking the message for the Senator. There is very little time left during which the Senate can act. Please take the time to place a call today to Senator Gregg urging him to bring HR 3034 to the floor of the Senate for passage.

Thanks for your attention to this important matter.


Best wishes,
Sue Stewart
Executive Director, Blood & Marrow Transplant Information Network















August 4, 2004 5:00 PM
Day 181

Good day! Sorry so so late:) I know you are probably wondering, "Where is she and why hasn't she updated?"

Well, we have been BUSY today organizing paperwork and such for our personal files and also The Katia Solomon Fund. So much has gone on during the last 11 months that I have been gone!

Good news is the CD is ready for purchase. I am putting the information on the KSF SITE.

A portion of the proceeds will be going towards our Light The Night Goal of $2000.00. This is an AWESOME CD!!! We are all very pleased with how it has turned out and we KNOW you will enjoy it. HINT: It would make a very nice Christmas Gift for your family and friends.
End of advertisement:)

Okay, well what has Katia been up to? PLAYING!!! She has been playing nonstop. It makes me sad the girls have to start back to school tomorrow but at least we came home a week before school was starting. Sharayah will be home around 3PM each day and Tatiana around 4:30PM. They do stay very busy with school though and homework so we look forward to weekends.

Well, that is about all for now. I am off to make dinner:) I LOVE THOSE WORDS!! I love saying, "Goodnight" and "Good morning" and I love the smell of coffee in the morning. I love chatter of the kids throughout the house and I love seeing the mailman pull up and put the mail in the mailbox (I sound like a little kid). I love the fact that I can organize all of my stuff and not have to live out of boxes and a suitcase. I adore doing everyone's laundry!! It is nice to be doing family laundry and cooking meals again.

I will chat later:)

We have clinic first thing in the morning. Love, Tracy








August 3, 2004 7:42 PM

Good evening:)

I just thought I would pop over here and say hello. It has been a good day. I am making dinner right now, actually about to serve it up, but I just wanted to come say hello.

Have you seen the Homecoming PICS of Katia's coming home? It was nice putting that together and reliving the celebration:)

So, let me go get dinner together:) I love those words!!! It is so great to be home.

Love, Tracy








August 3, 2004 12:52 PM
Day 180


Good day:)

Wow, time flies when you are having fun:)

I can't believe it is already after noon. Katia definitely keeps us busy and hopping around here. We are all happy to do it though. This morning she wanted pancakes and to wear a certain outfit (which she peed on just moments after getting it put on-so she got upset that it had to be changed). I can't say she doesn't have a mind of her own. She does!

She has been eating well and sleeping well and she just looks so much better right now. I will post pics in a bit. I am trying to organize a few of them.

I must say that with today being DAY 180, I thought things would be a lot different. It had been my understanding she would be weaned off most, if not all, her medicines by now and would be running around like nothing had ever happened. Well, that is definitely not so. She is on more medicines now than she was right after transplant. She is doing good though and we are so thankful for that. Her sinuses seem to be improving some since we are home so we are going to rescan next week sometime as well as meet with another allergist. Her cough is still bad but she seems to be getting used to it and knows how to go ahead and clear her throat before she tries talking again.

I have to say, Katia and Tatiana have just been playing nonstop since we reached home. They are unseperable! I am so glad Tatiana is so happy playing with her because Katia just loves playing and playing. They can sit around and play with toys for hours and hours and look at books, etc.

As many of you know, it seems as though heaven has gained another Angel, Celeste, but I am waiting for an update on their page before I post it. I know people must think we get used to hearing about children who do not beat this battle here on earth, but we don't. I know it seems to hit me harder each time. This is just so heartbreaking because I know somewhere, there are parents with broken hearts. When I say, "We are all in this together." That is so true, through the good times and the bad times. As a parent of a child with Cancer, when another child is taken from their parents, my heart just gets broken in another spot. I really can't explain in words how I feel but it is just horrible. I have been asked why I follow so many kids, knowing that there will be battles lost as well as battles won. Doesn't it drag me down? Well, I believe everyone deserves to be known, have their story heard, and I would never let a life pass me by without taking the time to learn from them, no matter how young they may be, what God has placed in their heart to share. I learn something from everyone I know or meet. If I didn't take the time to learn about others or "meet" others (a lot of times, we never meet in person) then I wouldn't be fullfilling God's reason for having me here on earth either. I hope that makes sense somehow.

Well, let me go through some pictures:)

Love, Tracy









August 2, 2004 11:10 AM
Day 179
WBC 4.2
HGB 12.2
PLT 42
ANC 2400

Well, we are back from clinic and all went well. We had a TV interview there with ABC 28 which will aire tonight for those of you local. They came back to the house with us and taped Katia on her swing! Yes, she went on her swingset. Did I take a picture? Well, we were doing the interview BUT there should be a link to the interview so I will post it this evening.

Katia has been feeling well and eating and sleeping well. I am waiting to hear her potassium and FK506 levels. She has quite a bit of bruising so I was surprised to see the platelet count today but very happy that it didn't go down:)

So, we have clinic on Thursday and then next week we will have her Bone Marrow Aspirate (to check her marrow for the donor cells) and also, hopefully, start the spinal chemo (if her platelets are up a bit more).

Katia is hungry so I better run:)

Love, Tracy

PS Here is an article about Alex Scott, the little girl, diagnosed with Neuroblastoma at age one, and her Lemonade Stand to raise money for cancer research. She raised hundreds of thousands of dollars!









August 1, 2004 9:55 PM

As you most have heard about Alex and her Lemonade Stands, the news was passed to me today that she has passed away. Alex fought since 1997 after being diagnosed with Neuroblastoma and touched many lives around the world with her Lemonade Stands to raise money for cancer research. I knew her health had been failing but so many times, Alex has proven everyone wrong and beating the odds. Now, she is in heaven.




August 1, 2004 4:15 PM

WOW, I can't believe it is already after 4PM. Time flies when you are having fun:)

I want to post the St. Pete Times Article from today's paper. There is no picture in the online edition but the pics they used are very cute in the paper. I like the family one.

Katia has been quite happy all day. We had a little problem with her broviac flushing but I finally got it going again which is good or that would mean a trip to the hospital.

Right now Katia and Tatiana are playing in the room (they could do this 24 hours a day if I let them) and I love to hear her laughing and giggling.

Please see the prayer request below for Emily and Casie. I just hate to hear of people struggling so hard but we are quite close to both of these girls and their families.

Thank you to all of you who check on us to see how things are going:) That really means the world to our family. I think Myron spends as much time reading the guestbook and such as I do now:) I have to shew him away from the computer so I can get here.

Well, that is all for now. Love, Tracy






July 31, 2004 11:28 PM

Good evening.
First a few prayer request. Please continue to keep Emily in your prayers. She is really having a rough time in the hospital with spiking fevers and they aren't sure why. This is supposed to be a happy time for her as she is nearing the end of her nearly 3 year treatment cycle. School is beginning and she really wants to be there. Emily is just a very very sweet girl and she needs your prayers right now.

Also, continue your prayers for Casie. So many of you have been following her via this website and she is still in ICU. Casie is just a tremendous teenager and she needs to be recovering from her transplant so she can get back to her life. Casie is just someone everyone wants to know. Pray things will improve and Casie can get out of ICU and back up to 2SW.

Katia is doing well. She has been staying pretty busy. My sister and her family came over for a bit today and we had a nice time with them. Katia still likes things to be quiet around her for the most part and we always respect that. At the same time, she can't have to many visitors due to her low counts and we don't want to risk anything getting her sick. Katia does however like to see her family and she really perks up to that. She has been getting down off the sofa (by herself) and holding onto the furniture to walk over to Myron and I if we are nearby. We get so excited as it is like watching her learn to walk all over again! She is very happy for herself also and she beams with pride as she does things she couldn't do before. I think home will bring out so much in Katia over the next few weeks and months. I pray, throughout our days, that Katia will continue to gain strength each day and we will be able to wean her from the steroids (we are slowly stepping her down from them) and her other meds. Oh, Katia is taking pills!!! She has always needed them crushed but now she is taking most of them with just a drink and down the hatch they go! She is very proud of herself. She is very tired of taking medicine all day, every day. It is hard for her to really understand WHY she needs to other than the fact that I say she has to in order to get good "report cards" so she can continue to be home and not the hospital.

I look at my sweet little baby and how she has touched so many lives. I have always said, "Things happen for a reason" and I really think Katia's reason was to bring more awareness to the need for Marrow Donors. I am so happy when I read stories of people registering as marrow donors in the guestbook. Two entries were there today and that increases the chance of others finding a match. God bless each of you:) I appreciate people leaving messages in the guestbook about how Katia's webpage or story has changed their lives or what they have learned. That is what has kept me going with this page. I feel I must do this and that is something my mind is set on continuing. I will continue to add and build this site.

I emailed Caringbridge about what happens when this page hits a MILLION hits and they say the counter should be fine. I can't believe how close that is to happening!!! WOW! Thank you!

For those of you who haven't viewed the news story about Katia's homecoming, the link is above with the other Media Links. You just click on it and then click on the video link.

There is an article coming out in tomorrow's St. Pete Times Paper so I will add that link here also when I can. Also, there will probably be another news story coming up next week.

The album is just about done. We are designing the label right now and there are a few more final touches to the music. It will have 12 songs and I think it has turned out just super!!! I am so proud of Myron and all he is able to accomplish by sharing his feelings through music. It is an amazing talent God has blessed him with. There is one song on there, "Leave Her Alone" where he is just asking Katia what can he do to make her better and telling the disease and all the treatments, medicines and such to just leave her alone. I remember that night when he wrote the song. Katia had a horrible cough and she was just gagging and throwing up. When he left the Ronald McDonald House, he came home and wrote that song. So much of this journey has just been beyond words but what words we can share, we try to share in any way we can. We WANT people to know Katia and we WANT people to know about this disease, its treatments and how we can all work together on beating these diseases. I grow weary of seeing so many people passing away. I will never lose hope and I really do believe a cure is close, but for now, we will push for people to get on the National Marrow Registry and urge people to donate their blood and platelets on a regular basis.

Well, God bless each of you. I have got to get some sleep and stretch my back out. I haven't been very nice to my back these last few days. But I have been happy to be home and trying to get my life back in this house and out of suitcases and boxes.

Also, I know that I keep you all busy with my questions and such but here is a new one:) This one however is something I would like for you to mail to me at the PO Box address below. Just what I was talking about earlier. How has Katia's story or webpage changed your life? How did you hear about her page?

Why am I asking this? Well, we have The Katia Solomon Fund and we are working very hard to make a difference in any way we can. One thing we have to do is to raise funds in order to keep this fund moving along. There are a few families we have already been able to help, one we are desperately trying to help right now and still more in the near future. There are also some informational things we would like to be able to work on and have available to hand out to people about the many things we discuss on this website. We want to build up the fund so that we can help on a moments notice. One of Myron's songs say, "Love comes back when you give it to someone else." We live by this. We want to be able to help others. The Katia Solomon Fund Logo is "Sharing Hope on the Wings of a Ladybug" and that is exactly what we stand for, HOPE.

As time allows, we are putting more and more time and effort into making more and more of a difference but in order to do that we need help and we need to hear from you what has been helpful and how Katia's story has made changes already. We have people we work with and I would like to share some of these letters in our next meeting as a motivational tool.

Thank you so much and goodnight:)

(It is now almost midnight)

Love, Tracy





July 31, 2004 12:07PM

Good day:)
We had a quick trip to the hospital today to check Katia's FK506 counts and drop off some labs to be run. We are back (I love quick trips-it shows Katia it is possible to go in and come right back).

Katia has been feeling well. She is struggling to walk but the good thing is, she wants to. We can't overdo it because her legs are just very fragile but, at the same time, walking is good for trying to build back some muscle tone, it is good for her lungs, her bowel movements, etc.

I tried to look for Casie's Mom today but I didn't see her around and we were only there a short bit. Please continue (as I know you do) your prayers for this young girl.

Also, please pray for Emily who is back in the hospital for fevers that just will not leave her alone. She is supposed to be finishing her chemo treatments this coming week sometime so pray things will remain on schedule and she can start the school year off happy and healthy.

Things in the Solomon home are going well. We are enjoying our time together. It is hard to sit back and relax because I feel like I have to get certain things done and organized since I have been gone for so long. We are working to finalize the Album, "Rain" so we can get it up for sale and also, I am trying to build an HTML site for the Homecoming Pictures. Katia's book, "Ladybug and the Dragon" is done so we are working on editing and getting it to the printer in the next few weeks.

Katia is enjoying all of us buzzing around the house. She is not lacking attention, that is for sure! She is still so in awe of being home. I pray many times a day that we get to stay here and things will not push us back to the hospital. We know we have a long road ahead of us and we expect hospital stays here and there dealing with sinus surgery or some treatments, but we want to spend a HUGE majority of our time right here and make our trips to St. Pete, fewer and farther between.

Well, I want to get this update posted. I get quite a few emails of concern when I am late getting an update here and I don't want you to worry:)

Love, Tracy






Prayer Request 7/30/04 9:42 PM



Jordan G
UPDATE JULY 30, 2004 Please pray for Jordan. Jordan had his 3rd Bone Marrow Transplant for JMML on April 21, and has not been doing well. The latest MRI is showing more spots on his brain now which seem to be either more cancer or fungal infections in his brain (very hard to treat). Please visit their page to offer your words of encouragment and prayers.



Also, Casie is still in ICU and just having to fight so very hard. Please pray for Casie and her Mom and Dad as things are just staying so tense and overwhelming right now. Remember cards can be mailed to Casie and are greatly appreciated.

Casie S. (2SW)
801 6th Street South
St. Pete, FL 33701
(no room number is necessary)




July 30, 2004 7:15 PM

Good evening:) Well, all is well here on the HOMEFRONT! I have been organizing myself and getting things back to a way I am able to know where everything is. After being gone, nearly a year, I totally have to learn my way around a lot of the house. I have been filing things, cleaning out papers, etc. I am so HAPPY to be doing this!

I have also been getting Katia's Light The Night Page up and running so you can help us meet our goal by going by, reading about the event and helping us in any way possible. Donations can also be sent via check (made out to The Leukemia and Lymphoma Society) to the PO Box or through PayPal (on The Katia Solomon Fund Site. The Leukemia and Lymphoma Society do so much and this is our way of trying to give back.

As many of you have seen Angel Grant is now in heaven. I am sure his parents, family and friends could use encouragment. Everytime Heaven gains an angel, someone has lost a loved one and that hurts.

Thank you so much for those of you who have carried our family in your prayers and have kept up with Katia's ongoing journey. So many of you have passed on Katia's website to so many others. God bless each of you.

Well, I am making dinner and thought I would drop in and say hello and do an update:)

By the way, YES, I have had coffee on my porch. I bet I have received about 90 emails at least asking me if I had the privilege yet:)

Love, Tracy







July 30, 2004 10:50 AM
Day 176

Good morning:)
We are still in awe of being home! I can't believe it when I wake up. This morning, I woke up to the smell of coffee!! Oh, how I love that the house is all connected, if you know what I mean. I don't have to open and close doors to go everywhere. I wish everyone could feel the sense of appreciation I have for home and family. I think this is one of the best presents a person could ask for.

I thank God that things have been going smoothly for Katia, as far as not having to go back in for any hospital stays. She is having quite a hard time with coughing and gagging. Yesterday she was pretty distressed with it for a while. But, she is just very very happy to be home!

I look around my neighborhood and I don't just see houses and people walking around, I see a neighborhood of love and people that have just fallen in love with Katia and only want the best for her. They are so happy to see us back home.

I went and finally got my hair cut yesterday. That just made me feel so relaxed and my whole head feels better. I got it cut shorter. Yes, there will be pictures. I will clean out my camera today and get some new pics up. As far as the rest of the homecoming pics, I am going to make an HTML page and put it on The Katia Solomon Fund Page so keep an eye out there for it. Someone is working on getting me a disc of pics from that day.

Well, let me wind this up. I love you guys and I thank you for being "here" for me and my family.

Love, Tracy






July 29, 2004 1:55PM (From DaddyBug)

HAPPY DAYS ARE HERE AGAIN!!!

Good Morning Everyone! It's a very Happy Daddybug greeting you all this morning!

It still seems like a dream to me. After experiencing such an amazing, warm, and exciting home coming as a local reporter put it, "a welcome fit for royalty" and to have every one here! WOW! what a blessing.

It is such a joy to look over my shoulder and watch my 3 girls playing in the family room at home.

To hear Mommy's voice as she reaquaints herself with all her home surroundings and to see the bright smile on her face that comes from the fact that we are finally all together again, at home.

I first of all give thanks to God for this wonderful miracle. Yes the battle continues, but everyday that we have Katia is a miracle.

We are so blessed to have such wonderful neighbors, family and friends (yes, that includes you!:)) who make us feel so strong and help us face the challenges that life offers.
Thank you again for being so wonderful!

Katia's homecoming was also a re-introduction of the Katia
Solomon Fund
to our community, and a re-commitment of our pledge to "Share hope on the wings of a Ladybug".

Please pray for our foundation, that we will be able to bring a little bit of sunshine to many, in the same way that you all have managed to bring sunshine to our family.

We look forward to taking lots of pictures from home, so you can share in our excitement. It has been an extremely long, long, 11 months...

Katia is so happy! I just know that this is the prescribtion she needs to give her the extra strength to fight of this evil dragon.

The day before the homecoming we were doing some clean up work, and as I was talking to my neighbours in front of our garage suddenly a little lady bug came up to us!

I had not seen one around here for a while now! Pretty representative to what was about to happen, ha?

MY LITTLE LADYBUG CAME BACK HOME!!!... :)

Also a quick word of thanks to all of you who joined with us to release your own balloons, what a wonderful symbol of love and hope that was.

God bless you all and I look forward to chatting at you later.

Luv always, Myron



July 29, 2004 10:43 AM
Day 175
WBC 6.2
HGB 13.3
PLT 36
ANC 2400

Good morning:) Well, we are back from clinic and everything went very smoothly. Katia didn't want to go but at least everything went well and we came home. So, maybe that will make Monday's visit go smoothly also.

You want to hear something awesome? Katia slept in her own bed... This may not sound like much but she has NEVER slept in her own bed. She always used to be with us but last night, she went to her very own bed (she shares a room with Tatiana)!! I thought for sure she would be screaming for me to come get her but she didn't. She stayed ALL night!

I am so proud of her. She is trying very hard to adjust to everything and to keep on improving with each new day.

Myron drove us to clinic and Katia was in the back singing along with his newest CD, "Rain" (which will be available very soon) and it was just so heartwarming to see her looking out the window, singing and happy.

She is having some bruising, due to low platelets and she is having a hard time walking but we are going to try to wean more of the steroids off.

Well, I am starving right now so I need to grab a bite to eat and then I have a some things to get done but I will be back (no dial-up!!!) later.

Love, Tracy







July 28, 2004 10:50 AM
Day 174


Good morning:)

Okay, here are the links to one of the news stories and the Tampa Tribune Article.


JULY 27, 2004 CBS LOCAL NEWS STORY "HOMECOMING FOR 4-YEAR-OLD, KATIA SOLOMON"



JULY 28, 2004 TAMPA TRIBUNE "WELCOME HOME KATIA"



We had a very nice first night at home:) Went to bed late but we sat out on the porch for a while. We had a live interview at 10:00 PM with one of the News Channels and then we just sat on the swing for a while on the back porch and chatted AS A FAMILY!

I still can't get over the fact we are home and I am still in awe of all the excitement yesterday. I hope you can see some of it in the news story above. I will have those links, up by the other media links, for now on.

I have found someone that took a LOT of pictures so he is going to put them on disc for me. I will be actively taking pictures around here though:) I can assure you that won't happen again. I think my head was in a cloud but I feel better knowing someone else has quite a few pictures for us to save and treasure!

WOW! I can't believe how much our neighborhood did in decorating this area. I mean the whole place was decorated! That really got Katia happy about her homecoming. She totally forgot about her belly ache.

She sat at the table, with Sharayah and Tatiana this morning, and had a bowl of cereal. Last night Myron cooked some stir-fry for dinner and we all sat down, as a family, and ate dinner together.

This is just wonderful!!! I have coffee here (didn't have it on the backporch yet) and I am just so happy to be home! I am so happy that we were able to get Katia back here. There were times that I couldn't picture this day and now it is here.

I am so grateful to God and all of your prayers. Katia doesn't ever want to cross the bridge again BUT tomorrow we have clinic. She doesn't know that yet. She MUST know that she still has checkups but I will let her be in denial today and enjoy today. I think once she sees we go to clinic and come home, she will be okay with the trips. She loves the nurses at her clinic:)

Well, I want to post this so you can see the news story! It was a very exciting day!!!!

Love, Tracy

PS Thank you to those of you who have ALREADY responded to the Light The Night! We are going to have a great time walking in the walk this year!






UPDATE!! FROM HOME!!!!
JULY 27, 2004 1:40 PM
DAY 173

YES WE ARE HOME!!!!!! WE ARE HOME!!!!!
THIS IS UNBELIEVABLE. I HAVE SO MUCH TO SHARE AND I JUST CAN'T START TO PUT INTO WORDS. THERE WERE JUST SO MANY PEOPLE HERE. FOR THOSE OF YOU LOCAL, ALL THE NEWS WILL HAVE STORIES. NBC, CBS, FOX, WB, ETC. THEY ALL STARTED THEIR DAYS EARLY WITH KATIA AND I AT RONALD MCDONALD AND ALSO HERE AT THE HOUSE GETTING FOOTAGE OF SETTING UP FOR HER HOMECOMING.

I AM SUMMARIZING HERE AND I AM JUST SHAKING WITH HAPPINESS. DO YOU REMEMBER WHEN I WAS SHAKING WHEN WE HAD LEARNED THE NEWS OF KATIA'S RELAPSE? WELL NOW I AM HOME, ON THE SAME COMPUTER, COMPLETELY EXCITED.

THE NEIGHBORHOOD WAS LINED WITH BALLOONS AND POSTERS AND MESSAGES. OUR YARD AND STREET WERE FULL OF PEOPLE, NEWS TRUCKS, ANTENNAS, PEOPLE, NEIGHBORS, ETC. EVERYBODY WAS CHEERING. THERE WERE YELLOW BALLOONS AND LADYBUG BALLOONS ALL OVER. WE WERE ESCORTED HOME WITH THE HELP OF POLICE ON MOTORCYCLES, SIRENES GOING AND LIGHTS FLASHING.

KATIA WAS IN AWE AS WE CROSSED THE BRIDGE. I AM GETTING A BIT OUT OF ORDER HERE BUT STAY WITH ME. SHE WAS POINTING OUT THE CLOUDS AND THE WATER UNDER THE BRIDGE, THE BIRDS, THE BIG TRUCKS ON THE HIGHWAY, ETC. SHE LET A LADYBUG BALLOON GO OUT THE WINDOW WHEN WE WERE NEARING HOME.

NOW, YOU AREN'T GOING TO BELIEVE THIS!!! I HAVEN'T TAKEN ONE PICTURE TODAY!! I AM SADDENED BY THAT BUT I AM GOING TO GET PICTURES TOGETHER THAT OTHER PEOPLE TOOK AND I AM GOING TO START CLICKING PICTURES NOW. I NEVER BELIEVED THINGS WOULD BE THAT BIG AND SO OVERWHELMING. MYRON IS SO HAPPY TO HAVE US ALL HOME AND WE ARE SO HAPPY TO BE HOME!!!

I AM WORKING ON GATHERING SOME PICTURES. I WILL POST SOME PICTURES OF KATIA AT HOME IN THE MORNING SOMETIME. I HAVE TO GET BUSY TAKING THEM. I AM SO MAD AT MYSELF BUT YET MY MIND WAS DEEP UP IN THE CLOUDS AS WE CAME HOME!

AS I AM TYPING I AM MAKING PHONE CALLS ABOUT PICTURES. WOW, I CAN'T BELIEVE I DID THAT.

OKAY LET ME CONTINUE THIS LATER BUT I HAD TO LET YOU KNOW WE ARE HOME. KATIA IS IN GREAT SPIRITS. SHE HAD A BELLY ACHE WHEN WE LEFT RMH BUT SHE IS GOOD NOW. SHE IS IN THE LIVING ROOM (OUR LIVINGROOM!!!) PLAYING WITH SHARAYAH AND TATIANA!!! WHAT A SITE. I JUST HAVE TO SPEND SOME TIME NOW AND WALK AROUND MY HOUSE AND REAQUAINT MYSELF AND PUT SOME THINGS AWAY. WE HAVE SOME MORE INTERVIEWS TONIGHT. WE WILL BE LIVE ON WB FROM OUR HOUSE AT 10PM.

LOVE, TRACY




*****



KATIA'S HOMECOMING NEWS!!!!





How long have you waited to read that!



Okay, here is some news to share with you and a way you can participate:)

KATIA'S HOMECOMING

Day: Tuesday, July 27th
Time: 11:00 AM
Event: Balloon Release
News: Local area news in the evening (I will post what I can on the site as they become available)

What you can do: Wherever you may be at 11:00 AM, you can release a gold/yellow balloon (gold symbolizes childhood cancers).

The balloon release (all gold/yellow balloons) will symbolize Katia's hope for her future as she continues to fight her battle. In addition, the release will symbolize the hopes of others facing these diseases, and it will also serve as a memorial to the many others who have fought these diseases but are no longer with us.


Please join us (Tuesday July 27th @11:00 AM) by releasing a balloon(yellow if possible) from your home, work or wherever you may be. It will probably cause someone to ask WHY YOU ARE RELEASING A BALLOON and you can share the information you know about marrow donation, Katia, etc.


Of course, there will be continued updates to let you know that we are for sure going home that day. That is our plan and I think it will stay that way. Katia is very eagerly looking forward to leaving although she doesn't know when exactly. We don't want to get her hopes up and then for some reason get them knocked down. She knows we are leaving soon because we are clearing out her RMH room.

For those of you in the local area, this will be covered by most of the news channels and for those of you not in the local area, I will post those stories that are made available online.

I CAN'T WAIT TO START TAKING PICTURES OF KATIA AT HOME!!!!

Tuesday will be 11 months to the day that we left Tampa, with Katia.


July 26, 2004 9:30 PM

Well, we are almost down to a 12 hour countdown!!! For those of you that are local, WB news will have something tonight at 10PM.

Katia is getting excited. Our room is basically emptied out except for one container and her two suitcases. We are trying to get as much out of the way tonight.

We are tired, all of us. It seems we have been going nonstop. Am I complaining? No way!!! This is a good kind of tired. Great! I just can't wait!

I am not going to make this update long but I wanted to get on here and update about Casie. Casie's broviac was taken out due to the infections. She is on 4 different antibiotics. Please pray the next 24 hours will bring some much needed improvements for Casie. Her blood pressure has been running high but she is very alert and knows everything going on. That is a very good thing. Her counts have kind of been bouncing around due to all that is going on in her body. They have some labs out for testing, the lines were sent for testing and there are just a lot of things going on. Today was a very hectic day for them. Please pray for her and her family as this is a very stressful and unsure thing for them. So much can change very quickly for the good or the bad.

Thank you for all of your prayers. I will keep you posted tomorrow but the plan is (and we are sticking to this) to leave here around 10:00 AM and arrive home at 11:00 AM. Things will be very busy for the most part of the early afternoon and into the evening.

Wednesday, I hope to have a quiet morning, on my backporch, drinking coffee with my family!!

Love, Tracy






July 26, 2004 1:45 PM
Day 172
WBC 3.5
HGB 12.2
PLT 40
ANC 1500

Good day. I keep saying I am going to get on here and update and then I get busy with something else. All things are looking very positive for tomorrow. Katia's labs look good, platelets fell though and I am still waiting on liver counts. We are packed, Katia is ready (I finally told her the news!) and she is just so happy. Now she has the word "tomorrow" in her mind. She completely understands that concept and she is SO looking forward to it.

When she came in her room the other day and it was cleaned out, she asked where we were going? I said we were going home "soon" but that we had to send everything ahead of us so daddy could clean it and get it put away. That way, if something stopped her from going tomorrow, it would only hurt us and not her. Well, now she knows! And she is very happy and can't stop talking about. She is actually taking a nap right now because she has just worn herself out with sheer happiness!

We are doing some TV interviews today for the news today and tomorrow and she is just a talkative little 4 year old. I can tell she is just bursting inside. She is very moody which I completely understand. She is anxious and still quite unsure about things. She has been gone so long that it is overwhelming in some ways but we have ideas on how to blend her back in to the house tomorrow without overwhelming her with too many things at once. I wonder what she will be dreaming about when she goes to bed the first night at home...


I always used to ask my Mother-in-law what she dreamed about when she came to visit us. She would be with us a couple of months at a time and for the beginning, her dreams would be about the island (Myron's parents' home) but after she was with us a few weeks she would dream about things with us. I imagine Katia's dreams aren't like adults but I am sure they are mostly about her life right now. If we wake up and we don't have to be right at clinic, I will ask her right away, "What were you dreaming about?" and she will tell me. A lot of her dreams are just funny little things. I remember a few days before transplant she told me that she dreamed Mickey Mouse was getting a blood "dose" (blood transfusion). I thought, "Okay..."

So tomorrow will be 11 months aways from home finally coming to an end! I am so happy. Myron is so happy. We are all just beyond words. It will be nice to be able to update from home and not have to rely on dial-up connections and tying up a phone line while I am updating or checking sites.

Okay, here is a list of the things I can't wait to do! (These are in no particular order)

1. TELL EVERYONE GOOD NIGHT AND NOT GOOD BYE!

2. HAVE DINNER AT OUR TABLE.

3. COOK A MEAL THAT WE CAN ALL EAT (IN KATIA'S GUIDELINES)

4. CHECK MY OWN MAILBOX!

5. NO DIAL-UP CONNECTION (NEED I SAY MORE?)

6. PUT THINGS WHERE THEY BELONG INSTEAD OF IN SUITCASES AND BOXES.

7. HAVE MY OWN KITCHEN

8. ORGANIZE, CLEAN AND ENJOY!

9. HAVE COFFEE ON MY BACKPORCH

10. WATCH A "LARGER THAN 13"" TV!

I could go on and on and on.

We have had our good moments here at the hospital as well as bad moments. There have been a lot of scary, very scary times when things seemed uncertain with Katia's lungs, transplant, etc. There have been a lot of sad times when we lose one of our friends. There have been times of anger and confusion when we didn't know what to expect or what was going to happen next. BUT there have been many joyful occasions. There was when we found out Katia was back in remission, when we finally found a marrow match, and when the lung surgery was successful. There was the happy and scary day of transplant. There was the day when her WBCs seemed to be engrafting and we could breathe a little easier that the marrow was working. There was that famous day we got out of the hospital after 248 days of being in-patient. This has been a real rollercoaster ride.

We have learned so much, seen so much, felt so much and done so much. We have gotten through many days on adrenaline. We have prayed more than I ever imagined one could pray. We have seen so many answers to prayers. My faith is stronger than ever before. I am so much more thankful for the smaller things in life than I ever have been before. I have learned to lean on people when I need them and to be there for others to lean on. I have learned that we cannot control our lives but we can make a difference with our life. This is an experience that is far from over but yet we are crossing into a new part of it. We have been given more hope and more freedom. Tomorrow when we cross that bridge, it will be something that we have imagined happening so many times. I can't say what I will feeling. I will say that I will be looking ahead to Tampa but also back towards St. Pete. Both places have become home to us and both places have made so many changes in our lives. We are leaving here while some very dear friends are fighting for their lives in the hospital. We are leaving behind a hospital and its complete staff that have made our time away from home a lot more comfortable than I would have ever imagined. People ask me so many times, "How do you do it?" Well, I don't. I have a TEAM of people helping me get through each day and we are working as a team to help get Katia through each day.

We get to go home now and live as a family and I am so thankful to God for that because my family means more to me than I can describe in words. I can describe it by saying this. My family includes those people I want to share many sunrises with and many sunsets. My family makes my life complete. My family gives my life meaning. My family has not only seen me laugh and cry, worry and praise but they are there with me and they share those same feelings. My family is what makes each day valuable. My family was brought together for a reason and that reason shines brighter and brighter with every obstacle we face and every joy we share. Tomorrow night, that family (if it is God's will) will be under one roof.

Thank you for sharing this journey with us!! Thank you for holding our hands and praying with us each step of the way.

This journey continues....

Love, Tracy







July 25, 2004 3:15 PM
Day 171

Good morning, afternoon:)

Thank you to those who are sending the pictures I asked for in the previous entry. They are coming in and I am getting them adjusted to the right size and right to Myron.

There is a lot of planning to be done in Katia's homecoming but Myron has some wonderful people working with him to help organize things and it is coming together very nicely. I can't wait to get Katia home and I think it will hit us all Tuesday evening or Wednesday morning when we go to bed under the same roof and wake up under the same roof.

I am going to have to go do a major grocery shopping when I go home because Katia has laid out (Sharayah and Tatiana too) all the things they want Mommy to cook! Boy have I missed my kitchen!! Walmart is like 2 minutes away from our house, SUPER WALMART! Oh, I have missed them too! I need to get school shopping, grocery shopping and things to settle Katia back into the house. School starts on August 5th so there isn't much time but hey, Super Walmart is open 24 hours a day!!!

I think when we get into the house, I am going to just go into each room over and over and enjoy being able to walk around freely knowing that Katia is right there with me. Katia wants to cook in the kitchen with me. She misses that. Since we have left, her highchair is gone so she is a big girl now:) She really enjoys family mealtime at the table so I look forward to that!

Sharayah and Tatiana are going to sound like The Waltons at bedtime coming and saying good night to us over and over! Oh, I can't wait.

Pray that everything smoothly tomorrow with Katia's labs. Pray that when we start her back on this FK506 that we get the levels right. Pray that her liver count has not increased. Just pray that we get to go across that bridge on Tuesday:) I will update before we leave and then later in the night FROM HOME!!

Can you believe we are this close? I can't. I have to keep pinching myself.

We will probably be back at clinic on Wednesday morning and each day for the remaining of this coming week due to the FK506 levels but then, starting in August, we should just go to clinic on Monday and Thursday mornings. I am getting teary eyed just typing this. I can't wait till Katia gets to see the car going over the bridge. She always knows we are coming to the hospital or going home because we drive over the bridge which crosses the Bay. As we drive towards Tampa, you can see Downtown Tampa, Tampa Airport and it will be such a great site! I hated taking those trips without Katia the few times that I have gone home. I can't imagine how Myron has felt each time he leaves St. Pete, driving to Tampa, without Katia and I. Well, this time he will be driving all of us home!!

Okay, I better stop before I become a sobbing mess.

I just wanted to get an update in here so nobody got concerned that something was going wrong.

ETA: Tuesday, July 27th 11:00 AM!!!


Love, Tracy

PS For those of you who don't know ETA, it is Estimated Time of Arrival to HOME!







July 24, 2004 10:30 PM

Good evening...

Katia and the girls are watching TV so I am going to take a chance to update. WE have been very very busy today packing and cleaning, etc. Katia hasn't seen the room since around lunchtime when I started packing and she will be very surprised when she does see this room. When I set my mind to something, I get it done.

I have a request and on very very short notice but I hope some of you will be able to participate. We are making some posters for Katia's homecoming about other kids who are fighting cancer or other blood related disorders. I follow so many sites and I could get them off the sites but I would like to do so with your permission. SO, if you could just email me a picture of your child, that would be my way of getting permission. The posters will most likely be shown, in some way, on the news but at the same time, there will be quite a few people walking around and looking at these posters. I would need the pictures emailed to me by Sunday night (24 hours) so we have the time to print them and place them on posters. I know this is short notice. Also, we would like to have pictures of some of those that have earned their Angel Wings. With the awareness we try to push with the media, we want people to see there are those who have fought and are no longer with us and there are those who are still fighting. We try to raise the awareness for a few reasons. We hope to show the need for Marrow Donors, blood and platelet donors, financial donors for research and for families in need, and also just so more people can understand more about these diseases. Put names to what they only hear about a lot of times. So, if you would like to participate and can get me the picture via email, I would greatly appreciate it. We will use as many as we can.

My email: TMSOL87@aol.com
Subject: Pic for poster



Also, please pray for Casie tonight. She is in ICU fighting serious pneumonia, triple line infections, her WBC count is up to around 8.0 which hopefully is allowing her body to fight some. I will get more information as I can from Casie's mom.

Okay, so let me get this posted so you can have a chance to start sending pics via email:)

Thank you so much!

Love, Tracy










July 24, 2004 11:40 AM
Day 170

Good morning:)

DID YOU SEE THE NEWS ABOVE!!!! KATIA'S HOMECOMING!! WHAT AWESOME WORDS!!!


Now, let's get the regular update posted.

Long long night...

Katia was not about to go to sleep last night. I think her belly was bothering her. Anyway, that problem was resolved at 2:30 in the morning by throwing up. It seemed like chocolate milk that had caused the problem or maybe because the level of the FK506 was so high, not sure. Her blood pressure, temp and heart rate were all right where they belonged and when she was done (and the brown shirt was washed and back in her hands) she fell asleep and woke up every few hours to see if it was time to eat yet.

Well, let me get this posted:)

Love, Tracy






JULY 23, 2004 11:29 PM

PRAYER REQUEST FOR CASIE:

UPDATE JULY 23, 2004 PLEASE PRAY FOR CASIE AS SHE IS NOT ONLY FIGHTING A FEW INFECTIONS BUT ALSO PNEUMONIA. CASIE IS A STRONG GIRL AND SHE REALLY NEEDS YOUR PRAYERS TO GAIN STRENGTH, ENDURANCE AND FOR THINGS TO REALLY TURN AROUND AND START IMPROVING FOR HER AGAIN.



July 23, 2004 5:45 PM


Good evening:)

We haven't done a whole lot of anything today. We were waiting for that FK506 level until just a bit ago and finally found it out. It should be between 5-15 and it is 39!! So, she is off the medicine all weekend. She has been acting a bit loopy today and I am not sure why but it seems to be better this evening.

She hasn't walked at all today because she is still quite shaky but she says she will walk when Sharayah and Tatiana get here for a bit. One way or the next, she will have to walk some. I at least like her to walk 15 minutes each day, even if it is 5 minutes here and 5 minutes there.

Her potassium level came up to 3.1 (normal is at least 3.4) so we are headed in the right direction with that. I think it will back in the normal range by Monday's labs.

Can you believe it has almost been 11 months since we left home? I can't, well yes I guess I can. We came here August 27, 2003. I never imagined we would do this but I am thankful to God for getting us through. God has placed very special people in our lives to help us through this journey and help us to see the brighter side of things, even on the worst of days. I appreciate those of you who have been keeping up with Katia all this time. She will appreciate it when she is older. Mind you, she will someday have to update this site herself:)

We have a scrap book that Cheryl made us of Katia's journey, this trip, and I have showed so many people that who haven't known Katia long. I show it to a lot of newer people in the hospital, clinic and here at RMH. They always say the same kind of things, "Wow what a brave girl!" and they are right.

Well, I need to check on some people and catch up on some emails:)

Thank you for being here.

Love, Tracy








July 23, 2004 10:30 AM
Day 169
WBC 2.8
HGB 12.0
PLT 94
ANC 1200


Good morning:)

We had a nice clinic visit this morning. Sweet and quick! As you can see, Katia's platelets are still holding on with the transfusion she received. They had gotten up to 185 on Wednesday and are at 94 now. Hopefully what is left will hang around for a little while until she can get to making her own.

The biopsy results on her stomach and digestive tract look clear of GVHD so that is good:) All we are dealing with now is a little left on her skin and the GVHD in her liver. That is enough. These things can just get out of control quickly so the less amount of organs effected, the better. We will keep an eye on her liver counts but that is why we switched from the Cyclosporin to the FK506 so hopefully that will be enough to keep the GVHD under control.

Katia seems to be doing well on the FK506. Her blood pressure was high in clinic but then it came down on its own so that is good. She always stays right at the upper limits of her blood pressure perimeters but it is better that she stays right under them than right over them.

She had an okay night. Her cough is really bothering her and her nose is runny. I think her body is getting used to all these meds for her sinuses and they just don't work as well.

I asked her about walking today and she is eager so that is good. For some reason she is shaky on her feet right now but she did do a lot of extra walking yesterday compared to what she has been doing. She says to wait until she doesn't shake. The FK506 can cause tremors but I don't think that is what this is. I think she is just a little weak right now.

I am still waiting for the rest of her lab results from this morning. I have been a little concerned about her pottassium because it was all the way down to 2.6 yesterday when we left the hospital. This will also be the first time we check the level of the FK506 in her blood. The level is supposed to be between 5-15. That will help us regulate the dose given to her.

Well, I am going to get this posted.


Love, Tracy







July 22, 2004 2:20 PM
Day 168


Hello:)

We have had a slow / busy morning. Yes, it has been both. First we both felt like "slugs" this morning on getting up. You know how those kinds of mornings are? You have to get going and it just is so hard. Well, that is the way this morning was.

Then, we did her medicines and started the new one, FK506 (Prograf). I kept up with her blood pressure and just kept a close eye on her for a couple of hours. There are always a list of side-effects but that doesn't mean they will definitely happen or what to watch for. At the same time, Katia's head has been totally stuffy all night and morning. I am going to bring that up tomorrow at clinic. The AFRIN isn't clearing up her nose and the benedryl really isn't helping her. She has been on so many different allergy meds and nose spreads and then, there are so many other options that we can't do because of the transplant and the complications she is having. If it were me, I would just tell myself to deal with it but when it is your baby, you do all you can to find a solution. This has been going on since March and we have just seemed to try it all to make her feel better.

Good thing!! Katia is walking somewhat better. She has to hold on to her shopping buggy or her activity cart but she is able to be up for about 15 minutes straight now. She was walking around the library here for about 15 minutes straight and that was just great, such an improvement. One big change is she really WANTS to be up. She stayed walking until her legs just gave in and folded. Usually, as soon as she gets shaky, she wants to sit back down but today, she wanted to keep on keeping on. I am so proud of her:)

The LADYBUG AND THE DRAGON book is coming along. I have been editing it as it comes to me and it should be published and ready for sale by the fall sometime. It is exciting to read Katia's story being put into words. The story of the ladybug and dragon (katia and leukemia) is focused on throughout the book and it is just such easy reading. I am very impressed by the way the book is turning out.

Myron is finalizing the new album, "Rain". It will soon be available on the Katia Solomon Fund website.

Myron and the girls are again, preparing the house for when Katia gets out of here. I will have to say, MY HOUSE IS CLEAN!! I am a complete clean/neat freak but Myron and the girls have really outdone themselves. I am so proud of them. School starts August 5th here and we want Katia to have some time, at home, with her sisters before that date. I promise, SOMEDAY SOON, I will be journaling from home!! I will be swapping out pictures all the time of all the new things Katia can do. I just can't wait!!!

Right now, she is watching DISNEY CHANNEL in the library and she just loves the Mickey Mouse movies. She loves Disney, anything Disney. Who doesn't? It brings back childhood to adults to watch this stuff.

Katia was asking me last night when she will get her broviac out. I reminded her that her broviac takes alot of her yucky medicines and it gives blood so she doesn't have be poked all the time. She thinks she will keep it for now. I guess I would say it would be taken out, according to how well she is doing, next Spring sometime, maybe.

What else? Oh, yes. Katia's "gas" seems to still be hanging around in her. Her belly is pretty big and hard. At least I can have a clear mind since I just saw how her belly looks via ultrasound and x-ray. That is always reassuring.

Sharayah and Tatiana are getting excited about going back to school. They both really like school. Hopefully I can be more involved this school year:) I am sure that will help their grades and their overall progress a LOT better:)

I should get this posted. I have been having a hard time signing on so I am typing this offline to post.


Love, Tracy








July 21, 2004 8:44 PM


Has today not been a complete day of "updates"? Well, this is my last one for tonight, I promise:)

We are back at RMH!!! Katia is sleeping and I am going to do the same thing ASAP. We have had a lazy evening, mainly just talking and doing silly little things to get our minds relaxed again. Myron and the girls had a day of cleaning the house and errands. We all stay pretty busy.

I know someday we will all be sitting on our back porch and "chillin". I can't wait for that day!!

Our family is very close (as you all know) and we really enjoy sitting around and chatting or watching a movie together. We like dinners together and just time around the house. We aren't the type of people that need to be going away from the house to be entertained. We are quite entertaining to ourselves (that could be taken a lot of ways). We are our own sitcom:)

Anyway, I look forward to those days and that is what Katia and I were talking about tonight. She doesn't remember much about the house but she was saying she wants to do an Easter Egg hunt and make Easter Cookies (she likes Easter). She wants to decorate a tree for Christmas and sing songs and have the snowman that lights up. She wants to play on her wooden rocker horse and swing on her airplane swing. She likes our flowered bedspread and she likes the comfy sofa and the big TV (we have a tiny little TV in our RMH room-which is great though!!)

Let me see, what else was she talking about? Oh, we were going through all the foods she wants me to cook and what she can help me stir or put on a pan (she likes to help me). She asked if we could read a book on the back porch swing. She asked if we can watch the cars drive on the road in front of the house. Let's just say, she may not remember what the house completely looks like but she has a whole lot she already wants to do. OH, HERE IS A GOOD ONE!! She wants to hold the remote to the TV and go through a LOT of channels:) Is this not a 21st century kid or what? I remember we had 4 channels (that was if the weather was clear) when I was a kid.

It was a nice evening. She ate a hotdog - which we discussed ALL DAY at the hospital. Her mind is on food most of her day anyway but when you put her on a "no food diet" or a "clear food diet" ALL she thinks about is food. I guess we are all that way.

So, please pray we can get this little sweetie of ours home soon. I really think it will bring her spirits soaring and a smile on her face bigger than ever!!

Please pray for Casie as she has been having a lot of abdominal pain and it is really hard to control the pain. They are concerned it is GVHD so they will be running tests. Please take a chance to sign her Guestbook if you can.






Love, Tracy


PS Thank you so much for all of your prayers! Can you believe it? A 24 hour hospital stay!






July 21, 2004 3:00 PM

Okay, the stomach is full of GAS! So, from the sound of things, we have our pentamindine to do right now (about 2 to 3 hours) and then - back to RMH:)

We will start the FK506 in the morning. That is still be cleared up and worked out right now. I want to get it filled in the pharmacy and in my hand before we leave the hospital. Since it is a newer drug, I want to make sure insurance is okay with it, the pharmacy has it and the dosing is explained:)

I will be back later tonight (hopefully from RMH).

Love, Tracy





July 21, 2004 1:00 PM


Small added update (this morning's update is below)

It seems they are feeling a ball of some sort in Katia's side so we are going to also do an ultrasound today, hopefully very soon.

Katia made it clear she doesn't want to sleep here or eat here so let's pray things go smoothly (not sure what this "ball" could be) and she can get her wish for today. She is not happy and no matter what, she doesn't want to cheer up. She just wants to leave.

Basically for the doctor to examine her, she had to agree Katia could leave today. Then Katia lifted up her shirt:) That is my daughter. Deals first, then business.


Love, Tracy





July 21, 2004 10:50 AM
Day 167
WBC 5.53
HGB 13.5
PLT 30 (Transfused 185)


Good morning:)

Okay, Katia is eating as I type!! Finally! Boy time sure does drag out when Katia can't eat.

The colonoscopy was done this morning, all went smoothly. She was mad when she woke up because she didn't see the purple ladybugs she normally sees with "Happy Juice" so she was saying they gave her the wrong one and she wanted more of the right one. She kept up with that for about 2 hours, non-stop! But, now she is okay and just wants to get out of here and back to RMH. She had a grilledcheese sandwich and some bacon (way to fill that stomach up after a clear diet).

They sent off biopsies from today's colonoscopy. We should start the FK506 tonight or in the morning. The cyclosporin has to get down to a certain level in her blood before they start the FK506. I really don't know much about FK506 because it is newer, especially to bone marrow patients but it will be getting used more now from what I understand. What are the differences between that and cyclosporin? Well all I know is the FK506 is stronger and I guess more useful with the organs. It used to just be used with organ transplants like the liver and such.

Myron had a good night with Katia. She only got up a few times. I, however, slept straight through the night at RMH with Sharayah and Tatiana. So, I am rested:)

It would be nice to not have to stay here tonight (not sure yet) because I really don't want to sleep in this chair (I don't have such a good attachement to it anymore now that I know about my back) and Katia agrees she likes RMH better. She is due a pentamindine treatment tonight but that could be moved up to today if the doctor okays it. Dr. Petrovic isn't here. She had knee surgery yesterday so keep her in your prayers. Katia says she thinks Dr. Petrovic is probably being a good patient at her hospital. She said if she was her nurse, she would bring her nice books and good food:)

Well let me get this posted. I just had 87 emails when I signed on. Thank you for your prayers:)


Love, Tracy










July 20, 2004 12:25 PM
Day 166


Well, we are headed over to ACH in a little while. They have our room waiting (different room from transplant-but next door to Casie and Billy is there right now also). This is not the reunion us parents look forward to.

Anyway, not much news. We saw the Gastro doctor today. The colonoscopy is in the morning. I am praying that this is not in her gut and stomach. It seems pretty sure this is in her liver and since she has no platelets, we have to start treatment without doing a biopsy on the liver-too dangerous. Man, this is a lot to swallow right now and I feel like I am on a big rush of thoughts and questions.

We are taking her off the cyclosporin (had her last dose this morning) and we will start the FK506 probably Wednesday night or Thursday morning. I don't know how much of a job it will be to get the levels of FK506 to the correct amounts in her body. I do not know much about this new drug but I do know it is very hard on the kidneys and known for causing Type I Diabetise (Insulin dependent) which is not something we want to add to Katia's long list of medicines and complications.

I feel so bad for her right now but also so proud of how she is dealing with all of this. She is being so good about having to go back to the hospital and not being able to eat. She is playing "Tea Party" with Tatiana and Sharayah and Tatiana asked, "Do you want cake?" (meaning fake cake of course) and Katia looked at her like, "Boy would I !!!" Anyway, Katia is special and I just look at her and my heart warms. She knows we are trying to get her home and she knows this may stand in the way. We really want to get her across that bridge next week sometime and now this. She really needs to see home.

So, please pray for her. Myron will spend the night at the hospital and I will stay at RMH with the girls, "The Kids" as Katia says. That was our way of getting Katia "excited" about the hospital (her and daddy camping out there tonight).

Well, let me get this posted. I am sorry to make you wait so long:) Thank you for your patience.

Love, Tracy










July 19, 2004 8:00 PM

When it rains, it pours...

Well, right now Katia has an appointment in the morning with a Gastro doctor and is scheduled for a colonoscopy on Wednesday. She can't eat anything except clear liquids through that time so she is not a happy child.

THEN, it seems her liver is coming up with levels that are off. How off, I am not sure but now there is a concern for GVHD of the liver... So, we are changing her from Cyclosporin to FK506 in the next few days. I guess we have to wean from one to get on the next.

Pray this is not a problem that can get out of control. I was very happy that the GVHD had left her liver, stomach and gut alone, all her inner organs and now these two things have popped up suddenly.

I will be back later tonight when I know more. I am waiting for her doctor to call with the new medicine schedule and more of an idea of what is going on and how elevated her liver counts are.

Please pray.

Love, Tracy









July 19, 2004 10:25 AM
Day 166
WBC 3.4
PLT 34
HGB 12.7
ANC 1300

Good morning.
We are back from clinic. Nice quick visit. We took a little "poo poo" sample. They ordered extra blood works and we are too count how many dirty diapers I change today. Yesterday ended up with about 18. If that continues today then she will be admitted for a colonoscopy to check for GVHD. Her diapers aren't bloody or watery, just looser and more so than normal.

Enough poop talk!!

Well, I am going to keep this short, really:)

I keep getting interupted so it is best to post this and try to come back later. As you can see, her WBC went up a pinch, her ANC down some, her platelets down a pinch, so things are kinda staying the same.

It is a very rainy, mucky day here so we plan to chill. Nobody slept last night so we are all tired and not thinking so clearly:)

Love, Tracy








July 18, 2004 9:25 PM


As I type, Sharayah and Tatiana are with Katia in the Living Room. She is of course happy. We will go to clinic in the morning and it is my sense that all of this pain is coming from her belly and she is associating it with peeing and having bowel movements. I think it is GVHD of her stomach. If so, we will do some medicine adjustments to hopefully make her more comfortable and probably make changes to her diet. Her pain has been about a 7 on a scale of 1-10 when she feels pain. I hate to see her go through that. We are taking a specimen of a bowel movement with us so they can test it.

I am slowly starting to send things home and I am remaining hopeful that we can get her out of here before the end of the month. I am not going to push things if it is medically not advisable but I really think her doctor will see things the way we do. We are very capable of taking care of Katia and we would never hesitate to get her right back here if we thought she needed to be in the hospital. I can usually see things getting bad before they have a chance to really get out of hand. I am very organized with emergency medicines and such. I just really want to see, and I think it will, give Katia a new boost of energy to feel like she is moving ahead. She keeps asking why she doesn't feel better. But, most of the time she ask us if she does feel better. I think if she could "make the next move" toward recovery, she would see that she is getting better and progress. Her counts? Well, I am not sure. The labs have been pretty persistant in going down each visit. Could it be caused by medicines? Well, of course it could but we just can't keep them going down so we have to find out what is causing this. She has to maintain her platelets especially. We want to see that her new marrow is capable of doing this.

Also, tomorrow, we are supposed to meet with a new doctor about Katia's sinuses and I really hope that a new idea can bring relief. Katia's doctor is very good about going the extra mile and looking to others in her field and all the fields concerned with Katia's care. Dr. Petrovic works nonstop at trying to find answers to problems. I must say, Katia keeps her very very very busy sometimes but then other times, things seem to improve and give us some breathing time.

No matter where we are, the best address to use from here on out is the PO BOX listed at the bottom of Katia's site. That box is checked at least every two days.

I should get back into the living room. Katia doesn't like it when I "disappear" (as she sees it) and she will start calling me and calling me. I don't like her feeling insecure especially when she really doesn't feel well.

I thought I would repost these poems I wrote over a year ago but they have been going through my mind a lot lately.




If Only for a Moment


If only for a moment,
I want to hold you tight,
I want to see your pretty face,
Treasure your very sight!



If only for a moment,
I wish to see you play,
Smile, laugh and run,
On a beautiful Spring day.



If only for a moment,
I will watch you as you sleep,
Eat a sugar cookie,
Or just play hide and seek.



If only for a moment,
I want to hear you sing,
See you learn to ride a bike,
Or soar high in a swing.



If only for a moment,
Let's do all we can do,
Cause here now and forever,
My sweet baby, I LOVE YOU!



Written for Katia by Tracy
Solomon (Mommy) * April 6, 2003




*****************************************


Mommy Makes it Better



The times you have a boo boo
On your arm or leg or toe,
Mommy makes it better,
And off to play you go.



If someone takes your toy
Or gives you a mean look.
Mommy makes it better,
Reading a story from a book.



When you go off to the doctor
And something has to hurt,
Mommy makes it better,
by calling you her "SQUIRT".



As you roll off of the sofa
And fall onto the floor
Mommy makes it better,
By kissing what is sore.



If Mommy has to go bye bye,
And she tells you that you can't,
Mommy makes it better,
By putting "Kissies" on your hand.



Now Mommy has a question,
If there's cancer in your blood,
Can Mommy make it better
With her kisses and her love?



Written for Katia by Tracy Solomon (Mommy) * April 6, 2003






July 18, 2004 12:15 PM
Day 165


Good day.
Last night, the first results came in from Katia's urine test and it doesn't show any significant amount of WBC in the urine so this probably isn't a urine infection. We will see if anything else grows over the next day or so.

I had to sit down last night and have a very long talk with Katia (that is difficult with a 4 year old) about telling Mommy what hurts and how bad it hurts. She worries so much about having to take more medicines that when something hurts, she just gets quiet until it gets really really bad. I told her we are trying to get her home soon but if the time comes that she would have to go in the hospital for a few days, it is only to get her better but she wouldn't have to be in there as long as she was all those months. That is a big fear of hers. The last stay was 3 days which was nice for her to see was possible. We have spent many times in the hospital, since Katia was diagnosed, of 5-10 weeks at a time. She really doesn't see going to the hospital as a "quick thing". Anyway, I told her that we are going to slowly start sending her stuff home and soon she will follow. We have to make sure her reports are coming back stable and her pain is under control some how. Myron and I both get nervous about her counts and we just want to get her home. We don't know what lies ahead (we pray for great things) so we need to get her back in her house, around her things, with her family as much as possible.

Personally, I am nervous about the way her counts have been going down continuously and the fact that they have never seemed to raise and stay up. I pray her marrow is gaining strength and will soon be able to manage making the cells the way it needs to. She may need a platelet transfusion tomorrow. I am not sure. Friday, she will have a Pentamindine treatment (to help protect from pneumonia) and that usually makes her feel pretty yucky for the rest of the day. Her head stays stuffy and her cough is more and more persistant. We are going to meet with some new doctors tomorrow concerning her sinuses. Her lungs still remain clear. I thank God for the clarity of her lungs.

She is on more medicines now than she was when we left the hospital at the end of April and I can see why that is starting to get to her. She hates when I walk in the bathroom (her meds are in there) and she is always asking what I am doing.

School is about to start again (August 5th) and we really need to concentrate some on getting Sharayah and Tatiana ready for that and allow Katia to spend some time with them before they get back into the school routine. It is nice when they are at school, because it gives us time to get things done with Katia and have her clinic visits and such. She likes quiet time too and it makes her even more happy when people return home. One of her favorite things to do at home is to sit on the counter and watch me cook:) I miss having her "help" me. So, that is what we are going to be working on. We are going to be praying she will stop having so much pain, stabalize her counts, and be able to start working homeward.

Love, Tracy


Prayer Requests:


Grant B.
This site was just emailed to me about a little boy that has been fighting a tumor in his brain. A couple months ago, there were tumors found on his spine and the doctors had given him a couple to a few months. Well, that time is now and the parents are having to watch their little 3 year old slip away from them. They could really use a big "Caringbridge Hug".





Travis L.
Travis is diagnosed with Leukemia AML and Leukemia ALL. He is about to go through Transplant on the 22nd of July so he is in the pre-transplant chemos right now. Pray for him. It is always hard for teenagers to know they will have to be in the hospital for a long time and he could really use some encouragment and prayers that time will go fast and this will be his chance at a cure.








July 17, 2004 6:15 PM
Day 164

Today has been very busy and hectic so far but thank goodness we are going into the evening hours. Katia has been in quite a bit of pain since late in the morning. She was happy and watching TV in the library when she started screaming and screaming that her pee was hurting. So, we made a few trips back and forth between the library trying to give her some medicine and some water to see if she would feel better. She didn't so I called her doctor. In the last hour, we walked over to the hospital, got some urine bags and specimen containers, came back, she peed and we put it in the container and walked back over to take it to the lab. Writing that went a lot smoother than the actual process but that is okay. The fact is, it is now in the lab. We think she has a urine infection so we should know in about an hour. If she does, we will get a prescription and start her on it right away. The good news is the C-Dif isn't positive in her stool so we discontinued one of her antibiotics (which will probably be replaced, shortly, by another).

Hopefully this pain will subside quickly and she will feel better during the night. I feel so bad when she screams like that. She is screaming, in pain, also when she is put down to do a little walking. She is saying that her heels hurt. I just feel bad for her. At least she can get a little relief in between time when she is not peeing or standing up. She does need to walk some for the benefit of building some muscles and mobility.

Well, I wanted to update real quick so nobody got worried as to where we were and if everything is okay. I want to get offline so I am not tying up the phone line for when her doctor calls. I love Katia's doctor. She is ALWAYS available and very very helpful and compassionate to these kids and their pains and problems. Katia has a lot of faith in her and we are all very comfortable with dealing with Dr. Petrovic.

Love, Tracy


CASIE UPDATE: Casie is improving and her marrow is showing 97 percent donor cells. They had hoped for 99 percent but hopefully this number will move up. She is still needing two platelet transfusions per day but Casie is improving daily thanks to your prayers:)









July 16, 2004 8:22 PM After a nice nap:)

Things look so much better after a nap.
Katia and I actually fell asleep for about 2 hours today which is totally unusual. There is always something that comes up but not today. It seemed the whole Ronald McDonald House got quiet, the phone was quiet, Katia was tired enough to stay asleep and things just let us rest:) I LOVE naps:)

Well, I want to thank each of you for your ongoing prayers. I figured I would share something here due to some emails and such. It really isn't a possibility for me to get away from Katia. I have her medicine routine (which changes a few times a week) all in my head. A lot of it has to do with her labs and results, her weight, what she is drinking, etc. For now, I have set my mind to taking complete care of Katia. When the girls are here, they are very helpful for entertainment reasons and giving me a chance to catch up on things I can't do due to Katia wanting things like playing, books read, etc. She really likes attention and isn't even one to sit and watch TV alone. She likes to know that you are "looking" at the TV with her. So, when Sharayah and Tatiana are here, they go to the livingroom with her and I can catch up on Caringbridge sites, emails that haven't been answered, mail, organizing, getting medicines crushed and measured, etc. Mind you, she has a Walkie Talkie to reach me on and she USES it!! A lot:) I don't mind though. She is used to having me around and I appreciate that I can be around for her.

Myron's main help to me is keeping the house in Tampa going, finances, mail coming in there, errands, errands and more errands, working on The Katia Solomon Fund through meetings, mailouts, drives, etc. Both of us will call eachother or sit down and share our ideas for the Fund or figure out dilemmas together but for the most part, Myron handles EVERYTHING on that side of the bridge. Plus, there are times he just has to be here because Katia needs him or I need him. Nothing specific but we just NEED him. For us, Myron never gives us a "no" answer. It doesn't matter what he is doing or what he is in the middle of, if I call him to come here, he is here. Now with school starting back up, Myron is the one that has been handling school shopping, conferences, permission slips, homework, etc. I used to homeschool and it seemed things were much smoother during that time. However, I am glad my kids are back in school just because it gives them the chance to be "normal" and around others their age.

For my free time, I like to research. I LOVE to research ideas for Katia's treatment or overall wellbeing. I like to be able to help others find information they can't seem to locate or help getting ideas together to make hard decisions. I LOVE to research.

For Myron's free time, he likes to write music, get CDs produced and copied and hopefully ready for sale or distribution. A lot of people have said he should do his music full time and professionally but we hope to use it to help with The Katia Solomon Fund as a way of raising funds or reaching out. It is doing two things, allowing Myron to use his talents and creativities and also getting this fund, which we hope to make a big success, off the ground. This requires a lot of time, patience (recording music isn't easy and very very repetitive) and also the finances for getting all the copies produced, mastered and duplicated. We actually went to school for this (Audio and Video production and Web Design) but this is a whole different way using our schooling than we imagined. But, I believe God has lead us to this and we are going to give this foundation our all.

Another very important thing to both Myron and I is to raise awareness to what families face as they go through these treatments with their child or parent. We hope to put a face with what people only hear about or don't hear about. A lot of the people Myron met at the Marrow Drives thought only family members could be donors or that the actual bone marrow had to be taken to register, etc. There is a lot of information that we feel needs to reach the general public, college students, high school students, etc. We try to do this through sharing Katia's story through the media. Our local media has been so helpful in getting the word out both through TV and through Radio. The local newspapers and its staff have been very helpful, throughout this whole process as well as our local Cable Company, Bright House. All of this could not be done without the help of all of these people.

Then, I dare not forget this website. This website is provided, free of charge, by Caringbridge who fully relies on donations to keep this service available for families to use. Without this website, my phone would never stop ringing and I wouldn't be near as able to share Katia's story. This webpage is a way for me to journal and organize, share my thoughts and information, provide and area of prayer request (which is very important to me as I know the power of prayer helps in many ways), etc. This page enables me to share updates and pictures and also I am able to follow many other people going through similar situations via their websites. Through all the time we were locked in the hospital, Caringbridge gave me a feeling of being in a "neighborhood" of others caring and sharing. May God bless Caringbridge for all they do.

There are many links on this site to visit that have helped us in so many ways get through many hard days. There are more thankyou's than I could list in a very very thick book that I would like to share. There are so many words that go unsaid but that may be found "between the lines" of my journal entries. Someday, I hope to sit down and share my thoughts, experiences, ideas, etc. in a book but for now this will have to do.

Please know how important each of you are to me, to all of us. Your guestbook entries are like little rays of sunshine in our days! You sharing your life and praying for ours. Your encouragement and thoughtfulness. They really do bring us through good times and bad times. I know (because I am the same way) there are a lot of times you click on a page, read the update and then move on. Sometimes it is even hard to find the time to read the updates. But, I appreciate all you do.

So, again I better end this. Man, you must be thinking, "Wow she is so longwinded!" I am:)

Love, Tracy







July 16, 2004 2:25PM
Day 163
WBC 2.9 (dropped last 4 appointments)
HGB 12.4 (good)
PLT 35 (still dropping)
ANC 1300 (not so bad)

You can always see normal counts posted above the journal entries.

Well, we had a long day at clinic. Mainly because today was her IVIG transfusion which runs for 4-5 hours. But due to Katia being so puffy, bloated looking, and her weight going up, we did an ECHO of her heart. No results yet. Her doctor is out of town but she will figure out a way to read he results and get back with me.

Anyway, Katia's counts have been dropping the last 4 appointments. In the beginning of July, her WBC was around 4.7 and her platelets had gotten up to 62. I am not sure what is going on with these counts but pray that these are a sign of anything bad going on.

You know, Myron and I were talking yesterday and we both really thought, by now, things would be far more improving than continuing to keep going up and down. I know things could also be far worse but we stay more worried now than we did before transplant. Her body is just continuously fighting and counts just can't decide where to stay. She had a GCSF boost on Monday to bring up her counts and I really never saw a change. I am not sure what her counts
were on Tuesday, Wednesday and Thursday because we didn't do a CBC.

I compare (not so smart to do) Katia's counts to other people that have gone through transplant and see what was going on with their counts, at this time, post transplant. I don't know. I just think it should be better. We are really hoping to be able to get home by the end of this month.

We REALLY want to get Katia home. We have been gone nearly a year and it is just really wearing on all of us. It is physically hard (as you can see with Myron and myself lately), mentally hard (we need eachother close by-all of us) and financially (we are living with 2 households). All of this adds to the stress automatically brought on by transplant worries. I know that most of the time, I really try to look on "the bright side of life" but today is Friday, it is raining, part of my family is 45 minutes away from here, Katia keeps asking why she can't "feel better" and school is about to start again. We have been here since school started last year and I missed the whole school year. Sharayah and Tatiana had teachers that I never met. They only know me by my fax number and email address. Normally, I am much more involved in their academics.

As much as we want to get Katia home, we are also very nervous about her being home. It is a big security blanket to have the hospital, staff and supplies, right within a stone throw away. I mean I can get Katia to 2SW in less than 3 minutes if I needed to. Her doctor lives right down the street. I know Katia is nervous also but mainly because she really can't even remember many things about home. We talk about it now. We didn't talk about home for quite sometime
because we needed her to be content with being at the hospital and then here, not homesick.

We have just tried to keep her family close by her all the time. That is what makes Katia feel secure. I knew all of this before we went into transplant but I didn't think it would take this long.

Most people come in for transplant and within 3 to 4 months, they are back home under restrictions.

I guess all I can say is to please pray for me to remain strong and steadfast in what I have to do.

Pray for my family as they cope going back and forth and not having us at home. Pray for our physical health. Pray for Katia's counts to start climbing, her to be able to wean from the steroids, start tapering down on her medicines, etc. Pray for us to get home and live out of one house again. I cannot even imagine the joy we will feel when we can all say, "Good night" and each go to our rooms and our beds, knowing that when we get up, we will all be together:)

Well, that is about all. I don't have long to post this so I will get through emails and checking pages this evening but I wanted to get this update posted since I am just getting to it.

Thank you for checking on us and for being a part of our lives.

Oh, someone asked how long I plan to keep this page going so they can check on Katia. Well, someday Katia will update herself and tell you all about school and highschool, college,
marriage, her kids, etc. So, I guess that will all be up to her:)

Love, Tracy

PS Oh, my x-ray results are: top of back has signs of arthritis. Middle back has scoliosis (not sure what the percent) and the bottom has some disc deteriation. So, they want me to do physical therapy 3 times a week for 6 weeks and see what happens after that. They will come to me so that makes it much easier than trying to keep appointments. Thank you for all of your prayers:)










July 15, 2004 12:22PM
Day 162

I was so happy because I was thinking, "YEAH, I am here before noon to update (I have been slipping lately, I know)." But then I checked emails (usually between 80-140 a day) and checking some caringbridge sites, reading the guestbook, and well 10:40 AM turned into 12:20 PM.

Things are okay here. No appointments today!!! We had a long night but we got to sleep in a bit today. Katia has had a very very bad cough and it is giving her no rest. I think if these sinuses would clear up and the cough, Katia would be a whole new kid.

Sharayah and Tatiana are in the living room with Katia. She isn't feeling like playing but I still appreciate the fact I can get her out of her room. The Ronald McDonald House got new furniture in that room this morning. Have I said lately what a great organization this is and LOCALLY they have to have some of the world's best employees and volunteers!!!

About Katia's feet: The heels of her feet aren't so hard right now. They aren't normal but they aren't hard. She will have her regular scans coming up soon so if they are bad then, we will do something on the same day. She got very mad over having "pictures" taken of her feet.

Her next bone marrow aspirate and such will be done sometime during the first week in August and we pray all is clear and good. I have a good feeling that it will be.

I know it sounds like Myron and I have been falling apart lately but we are okay. We have a few things we need to take care of. Myron's came on more suddenly and it wasn't made any better by lifting things at his job. Mine, as you know, has been going on for months and just getting worse so I finally decided to get the x-rays done and see what I need to do. Hopefully it is just something like medicine or hot / cold compresses, etc. Picking Katia up, as many times in a day as I do, is not helping I am sure but I have to do what I have to do. She requires a lot of energy. I always say she should have been my first child, when I was much younger. When Sharayah was born, even the birth seemed like a piece of cake. I couldn't imagine what people complained about birth and kids for. She was so easy to take care of, she was easily self-amused when needed, ate good, slept great, had no health problems, just way way too easy. Tatiana wasn't so easy but I was still only 23. Tatiana had a lot of digestive problems so to sum her up without embarassing her (she reads the site), she soaked quite a few people with "digested food" in the two ways it can leave your body. YES, she kept the washer going and going. But, she was completely self-amused and we had Sharayah to entertain her. Tatiana slept through the nights and she was always a little ball of love and sunshine that kept us all laughing a lot.

Katia, when she came along, I was 30. The pregnancy was long due to constant bleeding throughout. I was TIRED all the time, I mean ALL the time! When she was born, all things seemed well. She was easy to take care of and so so so loving. Myron, myself and the girls really enjoyed the new addition to our family. I have to say that Katia literally became the center of our world. If she felt bad, we all felt bad for her. With the two older girls being 7 and 11 years old, they were like added mommies in the house. Katia never had to be self-entertaining because she was never ever alone. NEVER. When Katia became sick (before diagnosis) it was tearing all of us up. Her eye looked like it was being pushed out of her eye socket. She was always tired, bruised and easily made cranky. She went from doctor to doctor getting poked and probed. When she was diagnosed finally, it ended all of our wondering as to what was causing her problems because they were all signs of her Leukemia. She went through so much from January 2002 to April 2002 that by the time she was finally diagnosed, our family felt like we had been fighting this problem for months already but with nobody understanding us. When Katia was diagnosed, this FAMILY took on helping Katia fight for her life and none of us will ever back away from doing all we can do. We have all basically put ourselves on hold and give Katia our energy, enthusiasm, etc. We do whatever we have to (no matter how foolish) to make her smile and laugh and get from one day to the next. I mean she was just a baby and we didn't want that taken away from her.

I have to say, other families up on 2SW must sometimes think we are nuts because we will be in our room laughing and clowning around on some of the darkest days. It is hard but we have to put on a happy face for Katia. She needs that and that is what we do. There are days we have to walk out of the room, update Sharayah and Tatiana on lab results that are bad or other dilemmas that have come up (like the lung surgery or unexplained drops in counts) and then we all just have to put it aside and go give Katia a good time. That is the only way we can get through this is as a whole family. We are each blessed to have the other.

On top of that we have found so much local support and worldwide support that we feel so many people are praying for Katia and thinking of Katia. So many people do whatever they can to help her stay happy. So many people step in to bring sunshine to her days and in turn, that brightens our days. "Katia" has become a familiar name around many many dining room tables, work places, schools, etc. I think the feeling that her life is making a difference gives us even more energy to perservere and move ahead.

I thank each of you for that. I actually emailed the Delilah show not too long ago. You know, the one that does the nightly broadcast of all the love stories and life stories called in. She picks the perfect song and then dedicates it. Well, I emailed her Katia's story and the fact that so many people have come forward to help. I wanted her to play a song dedicated to each of you and the many that have come to love Katia. I haven't heard anything yet but I want you to know how appreciated you really are, how loved you really are and that you ARE making a huge difference.

So many people have emailed me asking permission to make flyers of Katia, her story and a link to her page, to pass out at churches, schools, workplaces, etc. and I of course give permission. I know there is a purpose in all of this. I want her story to be shared to as many people as will listen:)

Well, this is going to take up a whole new Caringbridge server if I don't finish this up so God bless each of you and thank you so much!!!


Love, Tracy

PS PLEASE SEE THE PRAYER REQUEST ABOVE FOR MICHAELA.




*******



July 14, 2004 5:25 PM
Day 161

Sorry to be getting to this so late. We are all fine:) We are just having a busy day.

I started off my day getting the x-rays of my back so I finally got around to doing it. As you can see, I am not so keen on having to go to the doctor and such. They did quite a few x-rays which will probably be followed up by an MRI, depending. I guess that hospital chair wasn't so friendly. We will see. They did a C-Spine, T-Spine and L-Spine x-ray.

Katia is doing fine today. We went and had labs drawn this morning and the looked good. We were checking her electrolyte levels due to her potassium drop on Monday. It was good today.

Sharayah and Tatiana are still hanging out with me. Sharayah is actually upstairs here fixing dinner for tonight for the RMH families.

I have been going through and organizing the "Treasure Box" packages that have come in and have taken most of it over to the floor so that treasure box is getting full:)

I haven't had a chance to visit the other sites yet today so I am going to go by those right now as long as I can. Katia is keeping all of us quite busy. She played quite well yesterday but today she is saying her legs are sore. She really wants to play but she says it hurts so...

Well thank you for coming by here and checking on us:) Thank you so much for all of your prayers. I am thinking Myron should hear back from Tuesday's MRIs tomorrow or at least by the end of the week. He is still staying quite busy. He has almost finished another CD which we will probably get on the Katia Solomon Fund site in the next week. We will use part of the proceeds for Light the Night with the Leukemia and Lymphoma Society. Last year we had a team, "Katia's Lifebugs" and although we raised quite a bit of money, we were unable to participate. Katia had relapsed about 6 weeks prior to the walk and, as you know, we haven't escaped her since. This year, I really hope we can go out to the walk (since it will be outside) and represent our team. If you would like to help us to raise funds, before the CD is available, you can send donations to the Katia Solomon Fund address. The checks should be made payable to THE LEUKEMIA AND LYMPHOMA SOCIETY. We hope to raise $1000.00 for the society. They do so much research and so much more.

Love, Tracy







July 13, 2004 4:45 PM

Hello:)

Okay, the news story is a work up again to a fuller story so it is not to be aired right now. I wish I could somehow put these stories online but I can't.

Katia has been having a good afternoon. She likes this News Anchor, David. We hadn't seen him since Transplant Day. He did a really nice piece on her that went from August 2003 to Transplant Day.

Katia is in the Living Room still with her sisters. She got a shopping buggy (thank you, Karen) in the mail today and yes, it actually has a ladybug on it!!! So, Sharayah is putting it together and I will try to take some pics over the next couple of days. Today she was happy and she walked a few minutes and has been very smiley. That is always nice to see. There are so many days that she just doesn't want to do anything and she just tells us she wants to feel better but today has been a good day:)

Well, I better scadaddle (not sure if that is a word) because she is calling me to come see the buggy:)

Love, Tracy









July 13, 2004 12:02 PM
Day 160

Good morning (afternoon).

We have been pretty busy around here today but doing what we enjoy, or I enjoy, cleaning:)

Katia is in the Living Room / Library here, with Sharyah and Tatian, watching TV now. She is content.

She is so stuffy today in her nose so we are going to try to do another nasal irrigation later today. She has a News Interview this afternoon so after that is done (anything with her nose upsets her).

I don't know if this news segment is for tonight or for a special but I will let you know. This is not one of those I can link to for all to see but if it comes on tonight, those locally, it can be seen on the WB channel at 10PM. If it is other than that, I will let you know.

Well, we plan to spend a reasonably quiet day around here. We will go to clinic in the AM tomorrow for labs to check her levels again.

I am going to work on a project for Prayer Request. I am trying to come up with a better idea about posting them. Please take the time, while you are on Katia's page, to say a prayer for those going through trying times in their lives.

Let me share a funny story with you about prayer actually. Katia is still in awe about being out of the hospital. Every morning when we go to clinic, she comments on the squirrels, the birds, lizards, trees, just everything. So, yesterday morning on our way to clinic, I told her she should pray and thank God for allowing her to be out of the hospital so she can see all of these things. (Katia loves to pray-eyes closed, hands folded, everything). So she did and she said it so softly, I couldn't hear when she was done. She wanted me to say "AMEN". So, we get to the intersection where we cross to go to clinic and she yells at me (eyes still closed and hands folder-Katia, not me) "Say AMEN!" You should have seen the sudden looks we got. Well someone laughed which sent Katia into tears and she started saying, "I just wanted an Amen, I just wanted an Amen." It was all I could do to hold myself together and not make the whole situation worse.

I thought you would like to hear that:)

Love, Tracy








July 12, 2004 7:20 PM

Just a small update for a prayer request but this one is for Myron. Myron spoke with his doctor today and they are wanting him to get further MRI done. He feels Myron may have ruptured a disc or have a bulging disc in his neck and that he may have added injury to his back. The doctor he has been going to only deals with shoulders which means Myron would have to go to another doctor. All of this is just adding to more time off of work. I am not normally one to come on here and complain but I am not complaining, I am sharing with you a dilema that we could use your prayer with. Since Myron just took an extended leave from his work for the transplant, he may have a hard time or find it impossible to request more. Since he has just returned to work, he has not added up more sick leave. Although the job is secure, it is just more time without our income. I know God always brings us through things but that would not be possible without prayer. I do believe God knows our hearts but prayer is a necessity. I think through prayer comes our testimony.

Through all of this, Myron's arm, neck, shoulder, chest and back are just getting worse but he has to get through all of the glitches to move forward. Hopefully he will know more by the week's end and can be on a road to getting things fixed as best they can.

The girls and I have been having a nice afternoon (I feel bad because Myron has been having to drive all over and make tons of phone calls but he is happy when we are happy). Sharayah can be quite amusing and today she decided to make a hand puppet and tell it her life's ambitions in every accent she could think of. Katia found this hilarious. I found it, amusing:) My girls always play very well together although there is an age gap between all 3 of them. We have been blessed with our 3 girls and Myron and I feel blessed to have eachother. That is why I find it hard to "complain" with the way things are going sometimes. I can always think of someone who is going through something far worse.

But, I share this with you for your prayers. Thank you so much.

Love, Tracy







July 12, 2004 4:15 PM
Day 159
WBC 3.3
HGB 12.1
PLT 47
ANC 900


Well, we just got back from clinic about 45 minutes ago. Long morning. As you can see by Katia's counts her WBC and her ANC fell quite a bit plus her potassium was down to 2.4 (norm 3.4-4.7). Katia had to get an IV dose of potassium (which did bring it up to 3.2) and a dose of GCSF to boost up her WBC counts. Not sure why these are bouncing around but I will see what the next counts show. We do need to go back Wednesday for a potassium count but at least it doesn't have to be bright and early in the morning:) Friday we will see what the rest of her labs show.

She is eating right now so all is well in that area and also her Trigycerides (not sure of the number) came down quite a bit so that is good. Katia is not big into dieting (who is?)

As it looks right now, Myron is scheduled for surgery on August 3rd but that may move up. They are trying to find an earlier date due to the numbness and the fact it is progressively getting worse. I feel bad because there is just so much going on and it is hard to spread out the sympathy and care. Sharayah and Tatiana are with me so that works out good and Myron could possibly have the surgery done right here at the hospital next door to us. I am sure God will work out the timing and the place.

As far as when are we going home? Well, I don't concentrate on that right now. I just want Katia's counts to stay stable for a bit and to get this spinal checked and start that chemo. I will be far more relaxed when I know all of that is in the clear and she is "protected" somewhat from CNS relapse. I want Myron to get his neck and shoulder straightened out. We need to plan a quick trip to Walmart for school supplies (school starts August 5th) and get that behind us. I am one that if I can organize things and get an idea of what is going to be going on, I feel MUCH better. I try to not worry about the things not in my control and I am growing quite used to that. I look at that as a blessing from God that He has given me during this time. I really don't feel like I am "locked away" somewhere or feel pity for myself or my family. I wish things were better, but for now they aren't so we have to get through this and then, hopefully, things will improve and we will be stronger for the wear:)

Well, I need to finish this up. Since we were in clinic all morning and early afternoon, Katia has her meds, meals and IV fluids to catch up on and I need to make some phone calls, etc.

Thanks for checking in on us. I have a prayer request here also.


Justin T.
Justin was diagnosed in March 2002 with Osteosarcoma. He underwent Chemotherapy then a partial amputation of the leg in July 2002; then more Chemo. He was in remission from January 2003 to January 2004. His cancer has returned in the muscle of his partial leg and the lungs. He is facing more Chemotherapy and complete amputation, as well as lung surgery. He is a very brave 14-year-old boy. He is treated at Memorial Sloan-Kettering Cancer Center in New York.




Love, Tracy








July 11, 2004 10:00 PM

Just came online to update a few links and check on some of the Prayer Request. Katia is sound to sleep so I am going to do the same thing. Please pray that our clinic visit will bring good labs, quick visit and back to RMH quickly:) She always ask, "We are coming back, right?" I always say yes and pray that I am right:)

Love, Tracy







July 11, 2004 4:00 PM
Day 157


So here I am finally:)

The girls and Myron are back over here. The girls are rested up and ready for some more long nights with Lil' Ms. Katia:)

We had an okay night last night, no sleep really but no screaming either. I can dose on and off like that. Katia was sitting up most of the night, saying she just couldn't sleep. So, we watched a movie and then looked at some books, colored a bit, ate some, etc. This went on until about 6:15 AM. Then she dosed off until around 10:00 AM. I can deal with that (for a couple of nights).

She is playing with Tatiana right now and Sharayah is upstairs volunteering (she is baking a cake for the house).

Myron has his arm in a sling and the numbness has gone away some with the help of the anti-inflammatories and the steroids. There is still a lot of pain, mainly in the neck and shoulder area. He will get with his doctor first thing in the morning. I just hate to see him going through this. He basically is the one that does all our errands, housework, etc. Plus his job (security at the airport) is a lot of lifting and moving things around. He just got back to work and he is off for a week right now, doctor's orders. After surgery, he will have to be off for a while too. I think all of this with Katia has just aged Myron and me a LOT! Although we can get through each day with the use of a positive focus and adrenaline, it does catch up (oh yeh, coffee too). I think one of my biggest problems is just the length of time this has gone on, picking up Katia so much and just a lot of awkward things I put my body through with all of this. Sharayah is able to help me out a lot when she is around. She helps with carrying laundry, Katia, moving things around, etc. She is just about my height now. Tatiana? Well, she can amuse Katia very very well!!

We have been trying to get things in order with The Katia Solomon Fund so we can move more ahead with that. There were a lot of papers to finish filing, etc. Someone emailed me about how much time it must take to do the work with KSF (The Katia Solomon Fund) and yes, it does take a lot of time but this is something we feel completely lead to do. We can't back off from doing the things we feel lead to do. Through all of this, with Katia's treatments, hospital stays, etc., we have learned so many ways that families really need help and we have a lot of answers on how to provide that help. We know we can get this organization running and doing great things. We just have to keep it organized, so that we know what we are doing all the time. It isn't easy and it does require payments and fees to get all the paperworks filed but we are setting our mind to this. This is something we have to do. It is our hope that Sharayah, Tatiana, and Katia will be able to keep this running for many many years to come. Sharayah has plans of being a lawyer (she has stuck to that for the last few years) and Tatiana would like to get into Film Directing (a little unsure of that) but they also see the importance of what their Mom and Dad are doing. This can always be done on the side. They have also seen a lot of ways that help can be provided and they come up with good ideas. I was brought up that if you see a problem, instead of just pointing out the problem, try to come up with a solution that you can be a part of doing. Our object is to just bring relief (in small ways) to families financially, raise awareness (in bigger ways) to the need of joining the marrow registery and donating umbilical cords, and also the importance of regularly donating blood and blood products.

At the same time, we are still trying to get through each month, financially, and get our family back under one roof. We were really needing for Myron to get back to work but we have to get him taken care of. Most of the damage that has already been done is going to be permanent according to 2 doctors so there is no reason to make matters worse. Sharayah and Tatiana will be heading back to school soon (August 5th) so we are trying to get their school stuff together. They have been amazing through their summer break. They are very helpful to us and especially entertaining to Katia. We couldn't do any of this without the backup of our kids and their willingness to be as helpful, in any way, the can. I am sure they will carry this experience with them for the rest of their lives. We include them in everything we do.

Well, I am going on and on and I have a few phone calls to make. Thank you so much to each of you sending boxes of goodies for the Treasure Box. Each item will definitely be appreciated by the kids who receive them.

Since Myron has basically been forced to be off for this week, we are trying to get a lot of loose ends tied up on some things needing to be done. With each donation that comes into The Katia Solomon Fund a free CD is mailed out and we try to get those out within a day or two of the donation. He is also finalizing a new CD that will include a few songs. Myron's time of relaxation is in the studio so he tries to get in there at least once a week and work on his music. This next CD is turning out fantastically. I will probably make them available via KSF. There are a few songs, with special meaning, during this time.

Well, Katia is calling me (she loves being able to talk via walkie talkie) so I better wind this up.

Thank you for checking on us:)


Love, Tracy




July 10, 2004 9:20 PM


Good evening:) As you can see I added a new picture:) Doesn't she look cute with her hairbrush? Have I told you lately, "I love that little baby!"

In the photo album, there are two pictures from Katia eating dinner tonight. She was very pleased with herself:) I left the picture of her and her sisters there. She insisted:)

Well, we have had a pretty lazy day. She has been mainly talking about food since a few of her favorites are gone so tonight I gave her Pizza minus the cheese. She doesn't care for the cheese on pizza anyway.

So, I am not going to make this very long. I know I say that a lot but this time, it is true. Please say a prayer for our Caringbridge Family and everyone fighting diseases. Say a prayer for our country and our world.

Love, Tracy



July 10, 2004 FROM MYRON


Hello Everyone! It is the injured daddybug!:)

Thank you so much for all your well wishes, I feel better already.

Although my situation is a little uncomfortable and the timing is really bad (just getting back to work) every thing is going to be just fine.

Thank you for your love and concern.

Katia is doing a bit better and that makes me so happy! I am praying that the trend continues and soon we can have her home. (what a glorious day that will be) She is such a little trooper.

Yesterday when I came into her room from being at the ER she was in a lot of pain from a bowel movement, She saw my face and was about to cry and tell me that she hurt, until she looked down and saw my arm in a sling.

Her facial expression changed and she immiediatly said "Daddy, are you OK! What an amazing child! so brave, and so full of love. My little baby who has been through so much put me first. She is so incredible! and her daddy just adores her!

I am still concerned about Tracy's back, I hope that soon we can get some real answers to what is bothering her so much. I worry about her alot, as you all know if ever she would to be out of commission, we would all be in a world of hurt! God forbid... Lets not even think about it!

Thank you all so much for your keeping up with our website,for helping us with our KSF projects, such as keeping the treasure box full on 2sw.

Your kindness always amazes me, and we are so greatfull for having you all in our lives.

There is so much more we want to do through the Katia Solomon Fund to bring attention to the fight against leukemia, and the needs that so many families have, so pray for us.

It has been really difficult to operate ever since I started back at work, there are just not enough hours in a day.
God does have a plan for each and every one of us, and so many doors have been opened to us to be a possitive contribution to our community because of our little Katia that it would be a sin not to follow through.

Your entries give us daily fuel to carry on, and your love just keep us smiling. God bless you always, know that we pray for you all daily.

Luv always, Myron.







July 10, 2004 1:25PM
Day 156


Hello:)

I want to thank each of you for praying for Myron. Neither one of us want to be sick and need treatment because we like to be able to give our undevoted time to our kids, our minds on getting Katia better and the needed energy to keep The Katia Solomon Fund growing. But, of course, we have to take care of things as they come up.

Katia had a long night which I agree is due to steroids. She is just an insomniac and when she is awake, she just wants to eat. Since her Triglycerides are through the roof right now, near 1000, she is on a restricted diet and she doesn't like that. The restrictions include all her "staple foods" so she isn't happy right now.

Sharayah told her she had a big number and since she is so little, she needs little numbers. Sometimes the foods she likes bring big numbers so she can't have them right now. She needs to ask for little number foods.

I thought it sounded a little funny but Katia understood it so it is working to explain things to her.

I can't be on here too long. I need to get some phonecalls made and some stuff done here. I will be back later today. I mainly wanted to post those local Marrow Drives (thank you, Erin for sending them to me).


Love, Tracy







July 9, 2004 8:45 PM

Hello:)

Well, first news is that Katia's cyclosporin level is a little low but closer to normal so we don't have to get up first thing in the morning for labs!!! YEAH!!! Pray she sleeps tonight:)

Secondly, on the way home from here last night, Myron felt a pop in his hand and then he basically just got numb from his neck, down his shoulder, all the way down to his finger tips. He had me concerned and he was concerned but he took some aspirin and went to bed. First thing this morning, he called his doctor and they said to go to the ER. So he did. The doctor at the ER gave him a muscle relaxant shot, some pain medicine, steroids, and an anti-inflammatory. He thinks he has sprained his neck now or that the ripped muscles are pressing on some nerves. It is really bothering him. They put him in a sling to help ease the stress on the arm. They said if the pain persisted and got worse, then he would have to be admitted for an MRI of his neck to see if their is a bulging disc in his neck. We don't think this is the case but hopefully he can get through the weekend and see his own doctor on Monday. I am sure this will end up surgery and probably quicker than later. His arm is still completely "asleep" feeling and it hurts quite a bit.

Sharayah and Tatiana are going home (planning to unless Katia really throws a fuss at that time) so they can get some much needed sleep and an exchange of clothes. They came here with 2 outfits and we have just been washing their clothes each day. You can only mix and match so much:) Here at RMH, families do end up here longer than planned so it isn't like you come with a full wardrobe anyway. I wear the same things each week basically and it really just doesn't concern me, never has really. I like to be comfortable and have a neat appearance. That is all:)

If you look in the guestbook, there is a link to an article about a little boy in desperate need of a marrow match. He is mixed with Phillipino so his search is proving to be very difficult. Please check out the link in the guestbook. I am typing this offline right now.

Let's see, what else? Katia started a new antibiotic for the C-Difficile today, Vancomyicin, which usually works very well for her on almost anything. So hopefully this will get her cleared up and maybe even take care of the unknown culprit that is causing these fevers.

Well, she is falling asleep so I better get this posted. She still has all her night medicines to go through (which takes a while due to fussing and having to mix things up) so I better "get on the ball".

Thank you for checking on us. Thank you for caring, sharing and praying:) God bless you. Love, Tracy







July 9, 2004 10:45 AM
Day 155
WBC 4.0
HGB 11.5
PLT 45
ANC 1400

As you can see, we are back from clinic. I am here just for a quick update cause I need to get a call for some other labwork before I give her the Cyclosporin dose this morning. Here I am tying up the phone line:)

Anyway, Katia's counts came down some, especially the platelets and ANC but they are expected to bounce around some so I am not overly concerned. We just need those platelets to get up and stay up in the 70's so we can check her spinal fluid and start the spinal chemo.

Katia was up all night (mainly due to the steroids causing insomnia) so we are all tired. I am sure Sharayah and Tatiana are ready for a break at home so they can actually sleep through the night. Katia doesn't stay awake quietly. She is very demanding and noisy. I am praying we don't have to have labs drawn again in the morning and we can sleep in:) That is my prayer today:)

Thank you for all of your prayers for Myron. I am hoping this can be handled by August sometime so he can start recovering. He will be okay. God gets us through the things we rely on Him for. It is just hard to hand things over to God sometimes because, as humans, we like to control our own lives. That is one big lesson we have learned through Katia's illness. Rely on God and have a LOT of patience!!!

Well, I will be back later:)

Thank you for all of you that are helping with the Treasure Box goodies. We are getting the stuff right over to the hospital:)

Love, Tracy







July 8, 2004 5:30 PM

Update on Myron actually...

He got the results to his MRI today and although it isn't anything like what we normally turn to Caringbridge for, it is not good news for Myron. The shoulder is messed up with a ripped muscle in the rotator cuff area. He will require surgery and physical therapy to try to mend the muscle but he still won't be able to use the arm the way he is used to. It will just happen again because of the way it is torn. I don't understand all of it but from what I understand, it is affecting his left shoulder, upper chest muscles and the muscles on that side of his neck. The other day, he was laying down and Katia wanted to lay on his arm so he raised his arm above her head to let her put her head down. OUCH! He popped his neck somehow and it is still messed up. He told the doctor and the doctor said it is because the whole area is affected. He can do the surgery and physical therapy but he will have to avoid using the shoulder in heavy situations or any strain. Myron is my brawn totally because I have always been so breakable (proven 9 times) and my left arm is pretty much there for looks and light activity. I don't carry boxes, Katia, take things down from shelves, nothing. I have been that way since I was 9 so I am used to it. Most people that know me jump in to do things because I just get hurt to easily. Anyway, just pray for Myron because he is not nervous about this but just upset by it. We know things can always be far far worse but like I always say, everyone's problems are their problems and that makes it hard.

Katia has been watching Barney and cartoons most of the afternoon. We got the results back on the C-Difficile (the problem in her stools) and it is still there so we will change medicines tomorrow. It does cause her pain and cramping when the C-Difficile acts up so hopefully the medicine will work. We go to clinic in the morning. We started the medicine for the GVHD in her mouth and it isn't too bad so Katia doesn't mind this one (that is always a plus!)

She walked with the shopping buggy for about 2 minutes and started shaking so she had to sit down on the sofa. But since then, she has been laying on the sofa eating and drinking. She took a 10 minute nap and was hungry again. In fact, right now she is calling me to get her a "Cheese Muffin Sandwich" (this weeks main food). It is an English Muffin, toasted, with cheese in the center. They are pretty good.

Well, I better get back to her.

Thank you for all your prayers.

OH, look at the link above for "Ben's Game". You can click on the link and read all about the game, how it came about for his Make A Wish and download the game for yourself. Very cool and what a great wish!

Love, Tracy






MINI UPDATE ON CYCLOSPORIN LEVEL 12:58 PM

LEVEL CAME BACK GOOD:) YEAH!



July 8, 2004 9:30 AM
Day 154

Good morning. I have added more prayer request above. I am going to start putting new ones in my journal entries just to get them introduced but then they can be found above in the Prayer Request section.

We are back from clinic. This was the quickest visit ever! 45 minutes. Plus they let us borrow one of the Barney videos that Katia loves so much. It is one of his older "Barney in Concert" videos and it has the "Mr. Thumpkin song" and the song about "Sally the 5 humped Camel" plus a song about the "Animals on the Farm". She will actually sing along with this one and act out the little hand gestures!! This of course makes all of us feel really good to see her happy so... we brought it back to RMH for today:)

Katia had a good night. I am thinking these fevers COULD be from GVHD in her mouth. It looks pretty bad. We have the medicine now so we started it today. Hopefully this will help. We go back to clinic again tomorrow at 8:00 AM. We are just checking Cyclosporin Levels and her Metabolic Panels so I am not posting the results. We aren't doing the regular CBC right now. We will tomorrow. Just pray her Cyclosporin level is on target today so we know we have her on the right dose. I am waiting for the phone call from the doctor right now. It is like waiting for the winning lottery numbers.

Thankyou so much for all of you who have responded to the question above about Bailee. I am sure her mom will appreciate the info. I know I am learning alot.

Also, for those of you who have been following Zoie she is now being sent to RMH on Hospice. The doctors have told her parents there is no further treatments they can do. Zoie didn't want to go back home because she feels RMH is her home. She has spent most of the last 2 1/2 years there so her parents are granting that wish. PLEASE pray for them.

Well, I better finish up here and get offline since I am keeping the phone line busy. I will be back later to update. I want to go watch Katia and her Barney video:)

Oh, I will share this with you and then I will close out with the newest prayer request. Sharayah spent yesterday volunteering at this Ronald McDonald House. She had a very nice time. She did some cooking, cleaning, baking, etc. She is doing it again today. It is always nice to see young people volunteering and helping others.

NEW PRAYER REQUEST


Cody
Cody has been battling Leukemia ALL for quite some time now and he just made a new website:) Maybe you can stop by and say hello. He is a really cool kid!!! His mom keeps up the website so well.



Payton B.
Payton was diagnosed with Stage 4 Neuroblastoma July 2001 and has been cancer free since January 2002. I think this a great triumph and I wanted to share it with you. She is adorable. I like to share great success stories because they bring hope and in our prayers we should be thankful for success and hope:) Please visit Payton's page


Deseray B
Deseray is one of Katia's friends from the hospital. She has been fighting Leukemia ALL for the last 4 years. She went through her treatments originally and enjoyed one year of remission. Then she relapsed and had a transplant (her sister was her donor) in September 2003. The transplant didn't take and now the cancer has spread to Deseray's brain. She is home on Hospice. Deseray is quite the artist (she has made things for Katia) and she has a CD with a collection of some of her artwork. This CD is available on her site. Please visit this site. It is new and I am sure they would love the visits and entries in her guestbook. Deseray is old enough to read her guestbook entries and it would really bring a smile to her face. Please pray for her and her family through this very difficult time.







July 7, 2004 8:09 PM

Good evening. I have been working on a new pull-down menu above about "Informative Medical Sites" so if you get a chance, try it out. Also, if you have a website of an unlisted medical procedure or such, let me know and I will see about adding it up there.

Things here with Katia are about the same. She is running warmer than normal temperatures, not feeling too great, and just not herself. I mean she hasn't been herself for months but now she is not "herself" that she has been over the last couple of months. Her attitude is okay though. She will talk to us and she has eaten and is drinking fine. I really don't know what to make of all of this so that is why I decided to work on a project today. I figure as I go around looking for information, I might as well link to it so it is easy for others to locate when they need it.

The girls just went in the library/livingroom here to watch TV. I like it when they get to be by themselves. They get "girl time/sister time" like they do at home.

Tomorrow Myron finds out the results to his MRIs so pray for him. He is quite sore. He has had physical therapy a few times but he is just more sore. The other day, he turned his neck and popped something and that just made the whole thing even more sore. Maybe we are just getting old:)

We will go to clinic again in the morning at 8:00 AM to have repeat labs again. The problem is we are having to find out a dosage of this cyclosporin that won't send the levels way too high or way to low. Today they were too low so... We will get it.

Just pray for our family. Sometimes stresses start to just pile on and you feel like you already have enough. I know each of you know what I mean. I guess what we want is a good breather of some "low stress" time. Mind you I didn't say "no stress" because I know that is impossible. I like that Walgreens commercial about the "Land of Perfect". I think that is what it is called.

Anyway, Sharayah and Tatiana are staying still so Katia is happy:) Whatever keeps Katia happy is what our daily plans are. When Katia is happy, basically our family just functions better. When she is miserable, it throws us all off into some other zone. Sharayah and Tatiana have treated her like "The Golden Baby" since she was born. There has never been any kind of jealousy or sibbling rivalry with her. Literally, when she was about 2 or 3 months old, she would sit, in her little bouncy seat, right in the middle of our dining room table, while we ate. She was our little centerpiece. She still is but she is too big for the middle of the table:) I don't think there has ever really been a time when the other girls were ever even mad at her. She has only gotten in trouble a few times that I can remember. One time she took a black crayon and a dry-erase marker (both black) and colored all over the white kitchen appliances, the walls, her highchair, the cabinets, just everywhere. We all realized she was just being too quiet and low and behold, she was creating her "masterpiece" in our kitchen. I hadn't noticed the highchair, just the rest of the mess. So, I picked her up and put her in the middle of our bed (she had just turned 3) and told her she was "Timed Out" and I started cleaning along with Myron and Sharayah. Katia started crying and I went in and she pointed and said, "The highchair" (with her lower lip quivering). She realized I hadn't seen, nor scolded her, for the highchair yet. Poor thing, she just wanted to get it all out in the open:)

Needless to say, there hasn't been any scribblings by her black crayon or finger prints on the glass from her pudgy hands, in our house for the last 316 days. She hasn't been home. We would love to clean up after her:)

Goodnight.

Love, Tracy



PS Casie is doing good. Her counts have come up (her WBC) to 1.90 which is good. Her mouth sores and throat sores are starting to heal. She is still having bouts with nausea but her mom can see improvement and they are happy about that. She is on Day 27. Keep those prayers going:)








July 7, 2004 10:21 AM
Day 153



Good morning. We are back from clinic and are waiting to hear what the counts are. This all sort of has me confused as to how they are bouncing around but I am slowly being able to see that it is NOT lab mistakes.

Katia did not have a good night at all. She was very restless, had headaches on and off and kept creeping up with fevers. They would get up to about 37.6 (38.0 means she goes to the hospital) and then she would sweat it off. She did have 2 dirty diapers in the night so I am sure that gave her some relief.

All afternoon yesterday, Katia couldn't stand up (she would just fall over basically) or even sit up. She just felt so bad. We have solved the problem on how to get her to walk easier but last night she doesn't even want to try because she just feels miserable. We are using one of the little shopping buggies for kids. They are good for balancing and the wheels make it easy to push. It is a toy so it isn't like she won't be able to have fun AND since it is a shopping buggy, she can load it up with things she wants to take where she is going. The one I have right now belongs to the Ronald McDonald House but I wanted to see if it would work before I bought one for home. We can use this one as long as we are here so that works for me. At home, it makes all the sense in the world because when she does go from one place to the next in the house, she always wants 4 things with her (especially if she feels bad). She wants her blankie, the brown shirt, her ladybug pillow and a "poo poo pad". The "poo poo pad" is a bed pad that we have always used for her to sit on the sofa, bed or such. It keeps her cleaner and IF she has an accident that leaks out of her diapers (yuck) it just gets on the pad and not the furniture. She LOVES her "poo poo pads" and doesn't like to be without one. So, the buggy will give her a place to carry her stuff:)

I will share with you that I am beginning to get concerned about all the things that seem to be going on right now. To keep it short, a lot of the same things with the fevers, sweating, chills, bowel problems, etc. were going on when she relapsed in her CNS (central nervous system). We have not been able to check her spinal fluid (that is how you check the CNS) because her platelets have not reached high enough. I am concerned about this. But, that is all I am going to say about that for now. Just please pray for her. We hope her platelets will be high enough in about 2 weeks so we can check the fluid (through a Lumbar Puncture or Spinal Tap AND start the spinal chemo. "Picture of a Lumbar Puncture" Why is Katia going to get spinal chemo if she just had transplant? Well, both times she was diagnosed (that includes relapse) she had a very large amount of Leukemia in her CNS. That is not the norm for people with Leukemia AML. Plus we have had to battle this tumor in her eye. We have since radiated her spine, eye and brain BUT we don't know for sure that everything was killed. This is a way to protect her as best we can from relapse in her CNS.


So, on that note, all I can say is just to pray for Katia's continued remission and healing. Pray she will start feeling better. As much as she needs to feel better, we need to SEE her feeling better. It is just hard emotionally to sit and watch your children not feel well for such a long period of time. Today is day 153 and I really saw things differently when I was looking ahead to this day. I know that things could be much worse. I am completely thankful for all Katia has come through and continues to show improvement in. I am thankful her hemoglobin and platelet counts have been improving and her overall immune system seems to be improving. I am just concerned and I would like for you to pray for those concerns. Thank you so much. I will be back when I know more about today's results.

Love, Tracy








July 6, 2004 11:30 PM

Wow, I didn't realize I had put 1.9 instead of 11.9 for the HGB count. BIG difference. 1.9 would be very bad. 11.9 is quite good:)

Okay, so here is what is going on tonight. We went and repeated her labs around 7:30 tonight. All the labs looked okay, actually the cylosporin (which was in the thousands-very high) was then low, in the 100's. ???? Not sure what is going on with that. The potassium had come down to 3.7 from 5.1. I am not sure why but this happened last Friday too so tomorrow we are going first thing to repeat them again. It makes it hard to know what to give her and not to give her medicine wise and in her fluids at night.

Katia hasn't felt well at all today which does lead me to believe something is off. She has grown quite puffy in her face and belly just over the day.
She has been playing around with fevers again, not high enough for an admit but higher than it should be. She feels very warm but says she is cold. It just gets confusing and she is afraid to say when she is feeling bad or that something hurts because she is afraid she will be re-admitted to the hospital. Poor thing.

BUT, tomorrow is a new day and we will see what tomorrow's labs show and go from there. For now, she is about to go to sleep and so am I.

Thank you for checking in on us and I am SO sorry for posting the wrong HGB level. I knew something was up when I signed on and saw all the emails with common subject lines about her HGB level. I thought, "Uh Oh".

Well goodnight and please pray for us tomorrow. (I know you do)

Love, Tracy










July 6, 2004 10:15 AM
Day 152
WBC 4.7
HGB 11.9
PLT 62
ANC 2000

We are off to a good start today:) Katia's counts are all holding good. Some concern though because her Cyclosporin level which should be between 200-300 (this is medicine for her to not reject the transplant) is up in the thousands. It did this the other day too and then went back down into the 200's after we skipped a dose. Her Potassium is also quite high at 5.1 (which should be between 3.4 and 4.7) and her Triglycerides are in the 900's which should be below 150. But, we are going to have all her levels rechecked tonight at 8:30 on 2SW. That will let us know what medicines to give her and what medicines not to give her tonight. She WAS so happy to get her good "report card" today and be able to get right back over to the Ronald McDonald House. She always worries she will have to stay for something or go to the hospital. I am always very glad, for her sake and mine, to get out of clinic and head back over here. If her counts remain good like this, we will hopefully be able to get her spinal fluid tested and start her spinal chemo in the next 2 or 3 weeks and then, hopefully, get home!

That would be so great!!! There is a lot of work going on today at our house with the air ducts and such. Then, I am sure Myron will have to go through everything and clean again since so much dust and insullation are getting stirred up. The carpets will have to be cleaned, etc. BUT, that is all good because we will do whatever we have to do, with a smile on our face, to get Katia home and in her a good environment for her body to continue to heal and move forward. One thing this family does VERY well is work together. That has gotten us through a lot in the past and hopefully our girls will see how important that is and carry it on in their lives.

I always tell my kids that a person's true personality and character come out when things go wrong because you don't have a chance to really think about your actions. I am amazed how well kids going through treatments are able to keep a positive attitude. For the most part, I think the kids handle it better than the parents. We have the tendency to think ourselves into feeling bad and worrying too much. Well, I wouldn't say worrying TOO much but letting it get us down. As a parent, I think it is our job to worry and try to ease the burden on our kids when we can.

I was talking to a friend the other day about my habit of really looking into all the good and the bad "what if's" but that helps me face things when they are thrown at me. I feel like I am a little more prepared and I am able to just say, "Okay, then we have to take care of this problem." I don't like to be caught off-guard, which when you are going through these types of situations, you are basically promised to be caught off-guard a lot! I think the biggest lessons I have learned is faith and patience. Patience for the "hurry up and wait situations" and faith for the outcome of our waiting.

There is no book on how to prepare for situations that may come in our lives but there is one very valuable book to turn to and rely on when our life is going good or bad. The Bible. Somehow, no matter what the situation, there is always an answer or a valuable tool of information on how to handle the situation or have the faith that God will lead us through. Since we can't control everything, we have to learn to trust God to control things. Man, is that hard sometimes but, in the long run, He will get us through somehow. That is why I haven't worried so much about WHEN we get home, our goal is just to get home, all FIVE of us. That, in itself, will be the answer to our prayers.


Love, Tracy









July 5, 2004 5:45 PM
Day 151

Hello:) I hope you had a very nice 4th of July. We had a nice time. The day was pretty much quiet with Katia not feeling well. BUT, we did take her to see some fireworks. They were just a couple minutes away. We did take pictures but Myron has the camera with him so... I will post them as soon as I can upload them.

Katia has been doing about the same. We have had her walk more than she is used to and we feel good about that. We feel like we are helping her move ahead towards recovery. She is a determined little 4 year old but she is also very tempermental on steroids so... We let her win the battles sometimes and we win the battles other times. When it comes to walking, we get her to do it as often as we can.

Her sisters were going to go home today but we kept them:) What the heck. Katia likes having them here and they do keep her better entertained. Summer is only for a few more weeks and then they will be back in school. It would have been nice if we could have been home for the whole summer but we are making due with what we have. Katia is content.

She is acting nervous when we talk about taking her home. I don't think she knows what to expect. She thought she would be feeling 100 percent better, have hair and have her broviac out by the time we went home. She doesn't feel good most of the day and I think she gets nervous. Once we get there, whenever God leads us there, she will be okay and I am sure her nervousness will turn to happiness:)

I am trying to figure out a better way for her to get around the house on her own. The walker she has is hard to have to keep picking up stepping forward so I think I am just going to find her one of those toy walkers that teach babies how to walk. Katia is only 3 ft tall and, as long as it isn't easily tipped over, I think something more toyish and on wheels would be easier to use and she would therefore be more eager to try. I am sure it will be a while before she can get herself from sitting to standing but once we get her up maybe she will walk better with something easier to manuever.

Well, I better keep this short (okay my version of short) because I am doing a few loads of laundry and I need to finish up for the evening:)

Thankyou for checking in. We go to clinic first thing in the morning so pray her counts look good:)


Love, Tracy









July 4, 2004 11:50AM
Day 150


Happy 4th of July!!!

Well, here we are. We will all be together today for the 4th of July so I am VERY thankful for that!!! We all plan to sleep at RMH and I am thankful for that!! I am thankful we live in a country that stands for freedom. I am thankful our kids can attend school, we can attend church, we have news and newspapers we can read, we have great medical care, we have friends and family, we have opportunity and I am thankful to God for giving us all of this.

I got an email this morning thanking me for keeping Katia's site going all through her transplant and allowing others to follow in her journey. Well, I appreciate people following her journey. Many of you have forwarded Katia's website onto your friends, family and coworkers. I really appreciate all the prayers for Katia and our family. I have said this before and I will repeat myself. I really do see Katia getting through all of this and one day sitting down and reading the journals and the guestbooks, looking over past newspaper articles and TV interviews and just saying, "WOW, so many people cared!" I can see Katia standing in front of a crowd talking about the day there wasn't yet a cure for cancer but how thankful she is that one was found. I pray someday, there won't have to be treatments to keep cancer in remission but a treatment to CURE people of cancer. I really really see that is so possible. I pray for that day. I know, right now, somewhere, someone is getting the devastating news of cancer and will just be beginning the journey. Someday, when a person hears cancer, it will be like someone telling you about having a broken arm. It can be fixed.

As we come into these summer months, I can't help but to think about last summer. During this time, we were really having fun and so grateful to be home. Katia would be in the back yard shooting her sisters with her water gun. She got her swingset and just loved going out and swinging. She would constantly follow me around the house talking at a volume beyond 10.

Everywhere I went, Katia was my constant shadow. She would hang on my back, at the computer, while I checked Caringbridge sites and left messages in the guestbooks. I read my journal history from November 2002 through September 2003 and I just got all choked up on the August 26th entries and a few days following. April 2002, our world came crashing down and then again in August 2003. BUT, although things have come upon us looking very grim and devastating, God has provided Katia with yet another remission and a bone marrow match and transplant. God has been good. For that reason, I don't like to look at the summer months or the months of her diagnosis and relapse as dreadful months. Of course, I will always remember the dates. But, I pray that through Katia's fight to rid her body of cancer, that her story has made a difference. I pray nobody will ever have to wait for a marrow match. So many people came forward, all over the states, and registered during all of those drives and I still hear from people who are registering of donating their babies umbilical cord. God bless you! When August comes around again this year, I pray we will all be home together. Katia has a long way to go before she will be walking around muchless running around. She has a long way to go before she is yelling and screaming and giggling through the house. But, she and our family have come such a long way that we can get through all of that, together:)

How is Katia today? Well, she had a long long night. She wasn't feeling good. She wasn't happy that she felt bad. She voices that. She says, "I just want to feel better." She says that over and over. She had her headache all night and she just couldn't get comfortable. She kept saying she was cold or that her arm hurt, or something. Then when she would fall asleep, she was breathing hard like she was uncomfortable or frusterated. I would move her around to see if she would feel better but it would continue.

This morning, she seems to be feeling somewhat better. She is still very quiet and not smiling but hopefully, as the day goes on, she will feel better. Today is day 150 on our transplant

calendar and I really thought she would be feeling much better by now. But, I will tell you what I

told Katia. "You got some very strong new blood and it is taking its time getting to know your body. Once it is in there and settled, you are going to feel so good and strong." I pray I am right.

Have a good and safe 4th of July. Eat lots of hotdogs and hamburgers! Enjoy your family and just have a lot of fun:)

Love, Tracy


PS I have added a new prayer request above for our new friend, Whitney Please drop by her site as she would love to hear from you. She is a beautiful girl that was diagnosed in May of this year with Ewings Sarcoma. I love her outlook:)








July 3, 2004 9:07 PM

Good evening. We have had a pretty quite day. Katia really isn’t feeling well. I thought her problem was she needed to have a poopy, she did. That didn’t help though. She finally did give into some pain medicine because her head is still hurting. That didn’t help. Her blood pressure is fine, her temperature is fine. Her counts were okay on Friday so… Not sure.

We did walk over and see Casie’s Mom today. Today’s labs were better than yesterdays so things are improving slowly in that area. She still isn’t feeling well but she is feeling somewhat better. Her mom was definitely relieved. They are such nice people.

Well, I am not going to stay on here long. I need to tend to Katia and try to get to the bottom of what is really bothering her. She keeps saying she is cold but like I said, her temperature is fine.

The girls are staying here tonight so maybe she will have a good evening and a very happy morning.

Just pray she stays well.

Love, Tracy








July 3, 2004 12:22
Day 149

Happy Day before the 4th of July:)

We are doing okay here. The girls didn't come last night but are on their way here now. Katia is all happy. She said she wants to be "up" when they get here which means she wants to be in the little library and TV room she uses here at RMH. She doesn't want to be in her room. If you read through the lines, that means she feels like doing something like crafts or such with them:) She doesn't feel good this morning so far. Her sinuses are driving her nuts and she is really sore she says. Mainly her back and legs. She doesn't want medicine for it though. I think the medicine makes her feel funny and she doesn't like to feel funny and tired.

I look and listen to Katia and she amazes me. She has such a way of reasoning things out. Now that she can talk better (her vocabulary is growing) she can explain herself better instead of just getting frusterated for not getting "her way". She just likes things done a certain way that works for her. She does know best. When I tell her she has to do something because that is what I said or the doctor said, she gives in and goes along with it. If it is something she can decide, usually I just let her decide. She needs to feel somewhat in control of her body and how she feels. Like with the pain medicine. I let her decide when it is time or not.

I have really been trying to get around to some guestbooks over the last few days and get back into some sort of a routine. I miss that. I used to really enjoy being able to sign guestbooks. I do still get around to a lot of sites to read updates but not sign guestbooks. This week, and next, I have just made that a huge priority to drop in and say hello:)

Katia says she looks funny in the front page picture so we are going to try for a new one today:) She said she looks like a sqirrel:) She is watching over my shoulder right now as I type and she can see the preview page of her website. So, maybe there will be a new pic posted later today.

We hope to be able to see some fireworks tomorrow evening. They are close by here so they should get up into the sky:) Katia likes to see them. She isn't a big fan of all the noise but she thinks the fireworks are just fascinating!!

Well, I have babbled enough. I am in charge of keeping the downstairs kitchen here clean and I have the dishwasher running right now, clothes in the wash, clothes in the dryer so I better get moving:) That is the thing about RMH, you feel more like you are at home! Love, Tracy





**********

July 2, 2004 8:30 PM

Just a quick update to pass along some potentially good news. Casie's counts creeped up a bit more today so that is a good thing. Keep praying for her that this marrow will take and start growing the cells she needs.

Katia and I are reading books right now and looking at pictures. She is in a good mood. She likes nights that she knows she doesn't have to go to clinic in the morning. Anybody would, I guess:) I like the nights I know we don't have to go to clinic in the morning at 8:00 AM:)

Have a good night. I will be back tomorrow:)

Love, Tracy










July 2, 2004 1:33 PM
Day 148
WBC 3.7
HGB 11.9
PLT 57
ANC 1900

Good day
As you can see, Katia’s counts in her CBC have come up very nicely. This was a nice surprise to see. Dr. Petrovic is very pleased with this. Today was a Pentamidine treatment so the visit was longer than normal.

I showed Dr. Petrovic Katia’s heels and if they haven’t improved by Monday, we will probably x-ray them. Katia’s Potassium level was low so we are adding back in the supplements Katia was on. AND, we are going to start our Steroid weaning again on Sunday. If we remain on schedule, we will complete weaning by September 26th. I really hope this will stay on track. Katia is showing GVHD in her mouth right now, on both cheeks so she will start a new medicine for this. Pray this GVHD stays under control because this is one of those things that can really get out of hand and cause serious problems suddenly by spreading to the body’s organs.

Katia listens to every word her doctor and I say trying to rule out any medicine talk. I have never had one of my kids listen so closely to each and every word. I thought that would be a good thing but it isn’t, at least not in this matter. Katia gets all upset when she hears anything about medicine, pills, mouth, nose, butt, etc. She has all these words that set off an alarm in her head.

Well, I am going to keep this brief. I picked up quite a few of her prescription refills and I need to get myself organized for the next few days. I try to do at least 5 days at a time, getting her pills in daily containers and cutting in half the ones that need to be split. It is easier than trying to concentrate every time I need to give her medicine. I can’t work too far ahead because a lot of times, the dosage will change.

I will be back later today. I plan to call and check on Casie a little later in the afternoon and visit a few websites to see if there are updates. I am slowly trying to get around to some of the guestbooks again. Although I can’t get by often, I at least want to pop in and say hello. I do try to read updates regularly but I know people like messages in their guestbooks. We do.

Love, Tracy







July 1, 2004 9:30 PM

I wanted to come on here and add some cute little graphics from Lori:) So they are just hanging around on the page!

Katia is already asleep right now. She had a long and busy day, two days, with her sisters. Tomorrow we go to clinic and I am eager to see what her counts are. The spots (you can see them on her neck in one of the pictures I posted) seem to be lighter in color but there are more than there were on Monday.

Another thing is, Katia walked to the Living Room here today (holding my hand) and although she walked, she was telling me it was hurting. Well I am sure her legs are weak and her ankles, hips and such are too. Well, when Myron got here, he was rubbing her feet and noticed her heels, on both feet, are swollen and rock hard. I am not sure if that is what is causing her so much pain but I am going to point that out because they are just like rocks, the whole heel. I felt bad then that I had made her walk.

It is hard to deal with Katia on certain things because there are so many things she can't communicate to us and that really makes it hard to know what is going on. She is much better at talking than she was two years ago but she isn't able to really communicate or answer questions the way we could really use. A lot of things seem like we are taking a shot in the dark with her. She is just learning the difference between itching and hurting and that is very helpful for her to be able to let us know WHICH she is feeling. It helps us know what to treat her with.

We also have a problem with her not wanting to tell us what is wrong because she doesn't want to take medicine or have a CT SCAN or X-ray done or some other kind of test. She will keep things to herself. I can usually tell by listening to her heartrate if she is really in pain and she knows that I listen for that reason sometimes so she will start telling me what is wrong as soon as I go to listen to her. You know, as a parent you can look at your kids and just KNOW when something isn't right. The trick is finding out WHAT is wrong. It is very hard when they don't want you to know what is wrong.

Well, I have been on here a while and I need to go check on some people. Pray for Casie because she is just really uncomfortable in a lot of ways and she just can't seem to get away for the nausea. Pray her counts will climb. They came up a very very small pinch today but up is better than down so pray they will increase.

Love, Tracy








July 1, 2004 1:00PM (NEW PICTURES FINALLY)
Day 147

As I type, the kids are working on the next photograph for the website! This should be cute:)

I just wanted to jump on here and do a brief update but also bring to you another prayer request. There is no link to follow yet but that is being worked on. A little girl Deseray, 6 years old, recentely went through transplant alongside us. She was a couple of months ahead of Katia. She is adorable and VERY full of energy- or should I say "was". She recently relapsed and it seems nothing is working to get her back into remission. Now they have learned the cancer has spread to her brain. This once spunky little girl is now slowly growing her Angel Wings and is very low on energy. She will be heading home on Hospice in the next few days and I know her mom, Tammy, is just torn up over this. Please pray for her and as soon as there is a link, I will post it.

We hate to see our children suffer through treatments and transplant because there never is the PROMISE the cancer won't come back. It can come back at any time. We live with that hanging over our heads like a dark cloud. On one hand, we are so happy that the donor cells are taking over and their counts are coming back up. We are so happy when their hair is growing in. We are so happy when they go to clinic and all their counts look great! I try to strive on the happiness. At the same time, I know things can change at any given time. When Katia relapsed, her hair was long and pretty, she was full of energy and her labs looked perfect, not one thing flagged as being too low or high. But then all broke lose and we found out she had 93 percent leukemia cells in her spinal fluid, 20 something percent in her marrow and more in her blood. All that was going on inside this body that looked perfect!! The only thing she had wrong was a few headaches. The reason for the headaches was her spinal fluid flowing to the brain was packed with bad cells. Three weeks prior, her spinal fluid and marrow was totally clear. I know a lot of you remember that day and just how shocked we all were.

As the parent or family member of someone fighting cancer, we have to learn to look at things in a different way. We know how to see things realistically but we also know how to see things in a grateful way. Grateful for the here and nows. Grateful for good days and hopeful for many more. I have kept up with a LOT of kids on Caringbridge and other ways. I have seen so much heartache but I have also seen so many miracles. I firmly believe that one day soon, there will be a cure for these horrible diseases. But for now, we have to strive to keep on going forward, smiling and enjoying our days. It drains me too much to always be thinking of what bad could happen. It is in my mind but I like to keep it there. I like Katia to be surrounded by positiveness and happiness and the pure joy she deserves. Until the day a cure is found, our goal with The Katia Solomon Fund is to help families fighting this fight with finances and information, to help fund marrow drives, and most importantly to keep on raising the awareness, any way we can, of the importance of registering as a marrow donor, supporting research and cancer organizations and praying as hard as we can for a improved treatments and finally a cure.

I start each day in prayer, before I really open my eyes. I pray that God will lead our day and point me in a direction that I can help somebody. I may not be able to help significantly but I can reach out to someone in prayer, with a listening ear, a small donation, a gift, just something. I want to show them that we care and we are there for them in any way we can be. I am a very determined person and I am determined to meet the challenges of helping others in some way.

Love, Tracy











June 30, 2004 10:51 PM

Tonight, I walked over to visit Casie's mom and find out how she is doing. Casie is having quite a few problems with bleeding due to low platelets (she is getting 2 transfusions each day and now she will get 3 if needed) and she is not showing an increase in her counts. She had a slight increase today. It is questionable if her transplant is taking or not. They are looking at either getting a boost from the donor she has already used or doing a cord transplant right now. Casie really needs your prayers as well as her family. I always pray for the doctors also, having to decide what to do. I want to see Casie do so good and I want to see that awesome smile again soon. She knew this wouldn't be easy, we all do, but she just really needs your prayers and words of encouragment. I know there are a LOT of cards on the way, from what I am hearing and I am sure that will give her and her family a great BURST of energy:) Thank you so much for taking the time to show your love to Casie and her family. God bless you.

As far as Katia, I know I updated very quickly earlier so let me fill you in on her progress. First, we have kept her sisters for another night! She didn't want them to leave so... Katia wins!

Katia has quite a bit more of those spots, close to 50 on her neck and the bottoms of her cheeks. I am getting concerned about this and I have a few ideas or questions to bring up at clinic. I am just confused with these spots and they went away after her few days in the hospital. I don't know if it was the platelets or the antibiotics that made them disappear?

Katia hasn't been feeling too great and she is still itching, not as badly but bad enough to really get her upset. She is just getting worn out from her itching and lack of sleep. Please pray this GVHD of the skin gets under control and will give her comfort and on her road to recovery.

I know I said I was working on pictures and I am and I PROMISE to get busy at changing these pictures. I have an idea if she will work with me:)

Well, that is about all for tonight. I mainly wanted to come on here and let you know what was going on with Casie.

God bless each of you and your families.


Love, Tracy


PS As many of you know Paige R. became an Angel early this morning. She was another "Ladybug" and I just fell in love with her when I was introduced to her site not too long ago. She was already on hospice but I always believe in miracles. In her few years of life, on this earth, I am sure she touched many many lives and my heart just goes out to her family during this time.

















June 30, 2004 5:50 PM
Day 146


I am so sorry this is so late. We have just been around here today, me and the girls, and I hadn't gotten online to update or check mail. I have a few emails that came in that I really need to go check on and I will try to update more later. Things are okay here with Katia. She is in happy land with her sisters all day!!!

Please pray for Casie also. I know she needs some serious prayers for her cells to start growing and for other health concerns. That is one of the things I need to do right now. I need to call because I am concerned.

I will update when I know more later.

Love, Tracy






June 29, 2004 10:15 PM

We are having a sleepover tonight with Sharayah and Tatiana here so Katia is VERY happy!!

We had a quiet evening, ate dinner as a family and Katia seems to be itching less. The sinuses and cough never seem to cease but she doesn't complain. We just feel so bad for her.

I have REALLY been trying to update some pictures on here but Katia isn't too cooperative right now. She wants to go for a walk to take pictures but it is way too hot to get her outside during the day and it is raining in the evenings, plus mosquitos are out. I took a couple pictures today of her playing with some toys so I will post those tomorrow if I don't get anything else. She knows that I put them on her page. Maybe the girls can help out with some nice pictures:) I just really love the front page one right now. It is the Desktop on my laptop.

Myron had to go home. He gets up at 3:00 AM for work so he left here a little while ago. He hates having to say goodbye but soon we will all be together again. I think God knows when the best time is and He has worked things out in His will. The closeness of the hospital right now is very comforting at times when Katia isn't doing well or when we all the sudden need to go to clinic or get a lab test done but I feel she is getting more stabalized each day. We had a big scare the time she stopped breathing on the way to All Children's back in November 2002. What started out to be a very simple fever turned into a nightmare so I always trust we are where we need to be for the moment and when God sees fit, things will lead us home:)

Well, it is getting late and the girls need to get ready for bed so I better get this update posted. Have I told you lately how much I appreciate you? I will tell you how I tell Katia how much I love her. I tell her, "I love you more than coffee." She says, "I love you more than Barney." I say, "I love you more than sleep." She says, "I love you more than cake." And we go on and on naming off the things we really love. It is fun. You should try it with your kids, your sweetheart or whomever. If you look at my top two, coffee and sleep! Do they not go together?


Love, Tracy






June 29, 2004 12:08 PM
Day 145


Hiya:)

Well, I am finally able to get on here and update. I was having computer problems this morning but all is well now. It was a program with a glitch.

Katia was pretty much awake all night. The steroids do that to her and the itching isn't helping. She does seem to be itching a lot less, barely at all now. So it seems to be working. Going up on these steroids is going to cause her to get puffier and she was beginning to slim back down in her face. I feel very bad for the older children going through steroid use because they are very self-concious about their change in appearance. Katia notices her puffiness too and won't look at herself in the mirrow or smile for pictures. Hopefully this will only be for a short time and we can start weaning. My main thing is I want her muscle damage in her legs to start reversing and get her walking. Her legs are so small and her upper body so big so it really hurts her to stand up. Her hips and legs just don't last more than a few seconds at a time.

I got some emails asking about Myron's shoulder. He did go to the doctor and had an MRI done 2 days ago. We will find out the results to that on July 8th at his next appointment. Hopefully it is something not too serious. His shoulder feels horrible right now and hopefully he isn't making it worse as the days go by. Myron isn't one to really complain about these things or slow down.

Remember in Star Trek those little machines the doctor had to just scan over the patient's body and fix whatever was wrong instantly? That would be nice:)

Well, I need to get Katia and head over to pick up some prescriptions. Then we are going to go in the library and try some walking and watch some cartoons. She enjoys going in there and getting out of her room. Right now, it is WAY to hot to go outside in the day so we try to spend more time doing other things.

Thank you for your visit:)

Love, Tracy








June 28, 2004 8:25 PM

Good evening:)

Katia and I had a nice little nap this afternoon which was VERY appreciated!! I have some good news:)

1. She is still all donor cells
2. Viral studies have come back clear
3. No abnormal chromosomes
4. Potassium levels are good


I just had to list all of those first because each one is an answer to your prayers and ours! Thank you so much for always keeping Katia in your prayers. These studies of her marrow will be done every few months or if there is a sudden change in her counts (like the previous week).

As far as the red spots she has, no answers... I think it is due to her platelets being low somehow but they are in the 40's and that didn't used to cause her problems. I guess things could have changed though.

She does have C-Diff again in her stools so she will start back on the antibiotics she was just on a few weeks ago. She takes Flagyl for that 3 times a day. Katia has had problems with this C-Diff on and off (mostly on) since her original diagnosis. The Flagyl does seem to clear it up for her.

Hopefully by tomorrow some of her itching will subside. She will get the third dose tonight of the new steroid dosage. That is a lot of steroids for her now so hopefully this will work and we can start weaning again soon. If the steroids don't clear her up, there is another type of treatment we can try of a type of antibody which would be done via IV in the clinic. Hopefully the steroid can clear it up. We have been very lucky that none of her major organs have been bothered by GVHD and we pray it stays that way.

These kids go through so much on a daily basis. I am so glad we have a great team of doctors to be there for us and deal with changes, delays and sudden things that come up. These doctors are awesome and I imagine it must be a very difficult job to deal with this on a daily basis. We appreciate Katia's doctors and nurses more than words can ever say. As a parent, it is very important that we are able to communicate with and rely on Katia's doctors. It is important that we have faith in them and trust their judgements and recommendations. A big lesson I have learned through all of this is just how important it is to COMMUNICATE my thoughts and worries with Katia's doctors. A lot can be resolved by communication and understanding. What is great is that Katia really likes her doctors and she trust they will make her feel better when she feels bad. When she feels slightly bad, she wants my care and attention but when she feels really bad or she feels like something is really wrong, she wants her doctors and will tell me to call them. When she was first diagnosed, she was 2 1/2 but she learned very quickly when to say she needed the hospital and she was always right. These kids really know their illnesses and treatments.

Love, Tracy







June 28, 2004 10:50 AM
Day 144
WBC 2.7
HGB 9.4
PLT 43
ANC 1400


Good morning.

You know the saying 2 steps forward 3 steps back? Well that seems to be the way things continue with Katia. Her skin has flared up with GVHD so instead of the plans to wean the steroids, we are now doubling the highest dose she was on. She had gotten down to 11mg a day and now she will be at 30mg a day. She has become an itchy, discolored and scaly little mess over the last 2 days and that is what it is. Hopefully the raising of the dosage will get this under control quickly and not allow it to spread anywhere else in her body. What has been good is that she hasn't had to deal with GVHD in her liver, stomach, gut, etc.

Our day started at a 7:15 AM eye appointment to see why her eyes are bothering her so much. Sometimes she is saying she can't see or things are blurry, etc. We have to take this very seriously primarily because of the tumor on her right eye optic nerve and also because of the amount of chemo and radiation she has had affecting her eyes. Her optic nerves check out to be fine. We will follow up in a couple of months.

Katia's labs are looking good. Her WBC, came down some but her ANC went up. Her platelets came down but not too far and her HGB increased quite a bit. She has quite a bit of those spots around on her still? I am not sure why since her platelets are higher than they have been for a while now. With all of this, there is never a day when ALL of our questions are able to be answered and we are used to that. One thing you can't be through of this is a control freak and I really used to be one. I had to know what was going on, why and what we were going to do to take care of the problem. I have gotten over that a long time ago.

Well, we are going to try to have a quiet day. I would like her to try to sleep a little to stop scratching and let these steroids get into her system. This will cause her to get more puffy and her appetite to increase again but we will do what we have to do. I pray this will not affect her blood pressure too much or cause any other problems to arise.

Well, pray for all of our friends here and of course, pray for yourself and your family:) I always try to start a prayer with the things I am thankful for. It lets me focus on what I can appreciate. That really works.

Love, Tracy


About Casie: Casie is doing about the same as of Saturday. The girls made her some crafts to hang on her door and window so I am going to try to take it over and give it to her mom later today. This is the time after transplant you really hope to see her counts to start coming up and helping those mouth and throat sores to heal so pray for her cells to GROW GROW GROW:)





June 27, 2004 1:30 PM
Day 143


Good day:) Sorry so late. We have just been lazy, extremely lazy!! I think we are all just getting worn down right now. When is that "World Needs A Break Day"?

Katia is doing okay. She is watching movies with the girls in the little library here. Myron and I were just reading a lot of the guestbook entries. I really enjoyed the Summer ones. Isn't it fun to think back on the "good ole days"?

Well, I am going to go make Katia a sandwich. I am like a "Drive Thru" to her most of the day:)

Love, Tracy









June 26, 2004 9:00 PM

Good evening:) Well Sharayah, Tatiana and Katia have spent the WHOLE day together playing and watching movies:) That is a nice sight to sit and watch!!

I have a favor to ask and maybe pass on to your friends and families. You know how much Katia loves cards! Well, I would like to have as many people as possible send Casie S cards while she is in the hospital. It would be the same address we had for Katia.

Casie S.
c/o All Children's Hospital 2SW
801 6th Street South
St. Pete, FL 33701

No room number is necessary.

Casie would LOVE to get mail and her mom and dad could read them to her and hang them up in her room. Just tell her you are one of Katia's friends:) I really think that would be a fantastic idea for Casie right now. She is really having a hard time of these mouth and throat sores and stomach pains. Since she is older, she is not that easy to take her mind off of things. I think it would be great for her AND her parents to see just how many people are praying for her and care for her.

I also met a new little girl here tonight at RMH who was just recently diagnosed with Stage 4 Neuroblastoma. Her parents are totally new to this and are here all the way from South Florida. Her name is Destiny. So please keep her in your prayers. Keep her whole family in your prayers.

Another thing I am working on and could maybe use a little help with. On 2SW there is "Treasure Box" and this has things like party favors and other types of toys for the younger kids all the way up to the teens. When they have to have IVs put in or get Bone Marrow Aspirates or just anything that is uncomfortable, they get to pick something out. I used to get things for the treasure box when I would go to Walmart or Party City and for not much money, the treasure box was doing very well. Well, now it is down to nothing and I would like to be able to help bring that up. I promised when we went home, I would not forget the Treasure Box and would take that task on as a task for The Katia Solomon Fund. Well, since I am not home yet, I am asking for some help so if you have some party favors or little toys (not too small so they are unsafe) that you could send. Just send them to the PO Box address below and mark it "Treasure Box Goodies". It would really mean a lot. These kids really go through a lot and little surprises and gifts definitely brighten their day. It works for Katia!!

Well, let me get back to my girls.

Love, Tracy








June 26, 2004 11:15 AM
Day 142


Good morning:)

For those of you who emailed me about Kamryn's link not working, it is fixed. I apologize for the delay.

Katia is doing okay this morning. She is very itchy and scratched herself a little sore overnight that was bleeding (sounds yucky I know) so we got that fixed up. She is getting some more of those same spots again and also a new one that looks different. I don't know what is going on with her and these spots. If her platelets were 56 yesterday, they shouldn't be petichiae. The new looking one is red with a little white dot in the middle (almost looks like a pimple in the middle) but overnight the little spot turned crusty looking. I don't know? I am going to call her doctor.

Other than that she is doing okay. We had a good night sleep:)

Let me get a call in to the doctor and I will be back later this afternoon. Today is yardwork day for Myron and the girls so they will be over in the afternoon:)

Love, Tracy









June 25, 2004 4:11PM
Day 141
WBC 3.4
HGB 8.7
PLT 56:)
ANC 1200

Well our day is going well:) As you can see, Katia's labs were stable and good today. She looks good and has been in a good mood today.

She is having some pain with her urine again right now but I am going to give it a few more times before I say something is wrong. Sometimes, it hurts because she has been holding it too long.

We spent a nice afternoon with Myron and the girls. Pray for Myron. He has had a sore shoulder that he hurt and finally went to the doctor today. They did some x-rays and noticed some type of a problem but they want an MRI to see what they need to do. I guess the two options are either surgery or therapy but they need a better view first. If you know Myron and me, we put going to the doctor off, which isn't smart. When we stay busy, our bodies tend to give us the boost of energies we need so we just keep on going. I still have to follow up with getting some x-rays of my back and I am working on setting up an appointment and getting back on track. Katia LOVES to hear that we have a doctors appointment. She loves telling me, "Take your medicine" and I do with a big smile on my face to show her that I follow doctors' orders. She says she wants to be a doctor when she gets big:) She would make a GREAT doctor!!

Well, I am going to get this update posted before it gets even later than it already is.

Sorry for the delay.

Please pray for another family from 2SW. They lost their son, 17 year old Bradley, and I am sure they could use your prayers. He was a recent relapse and needed to have a Bone Marrow Transplant. He fought very very hard. He was in the hospital, with us, for a VERY long time also.

Love, Tracy







June 24, 2004 8:45 PM

Good evening:)

Well, this afternoon we did get a little nap in and it did both of us a lot of good.

After we napped, we cleaned our room here at RMH and packed up a few things to send home. Things pile up here and then I just can't function. Katia is very good at telling me what needs to be cleaned or straightened. She says she is helping me. I like that kind of help though:)

Next time you are in McDonalds and you see the little drop box for the Ronald McDonald House, I hope you will drop some change in there. This place has just been amazing to us each time we have stayed from Katia's original treatments, to pre-transplant, and then now. I mean they are so accomodating and efficient around here. The staff is wonderful!! The house and rooms are very clean and well taken care of. Everything you need is here other than yourself and your clothing. I remember the first time we were introduced to the Ronald McDonald House, Katia had just been diagnosed a few days prior. Our heads were still spinning and I think I just ached from head to tow with confusion, lack of sleep, stress, etc. The Ronald McDonald House helped me feel like a person again. I got to take a shower, cook if I wanted to, BLOW DRY my hair, do housework, etc. I just can't say enough good about these places. Katia believes Ronald McDonald himself lives in the room above us here. She hears movement up there and says it is him putting on his shoes. When we go outside and look up, there is a small window 2 floors above us, that is where he lives:)

Well, I don't have much to update on since my last update. We do have a clinic appointment in the morning to check her counts. Her potassium actually came back high today. That is a change. So her IV fluids were only run for 2 hours tonight. She is already unplugged:)

I need to take in a bowel specimen tomorrow (if I can) because there is still some problem there. It doesn't look right (sorry, Katia) and I want it checked for anything wrong. Last night she had a few bowel movements while she was sleeping and that isn't like her.

Well, I am going to finish up here and watch something with Katia:) She wants me to finish "my work".

Love, Tracy








June 24, 2004 10:30 AM
Day 140
WBC 3.2
ANC 1200
PLT 51
HGB 8.4
(normal counts are above)



We are back from clinic and Katia has a very good "report card". The numbers are above:)

Katia is having a few concerns so she isn't feeling good. Her bottom is still bothering her where the tear is so I had to show the doctor (Katia hates that!). Then I had to call and make an appointment for the Eye Dr. for Katia. She will be seen this Monday at 7:15am. The problem was that last night, we were all watching a movie and Myron noticed Katia was making her eyes all squinty. He asked her why and she said she couldn't see the TV. She was all upset. So he sat her on his lap (right in front of the TV) and she was still complaining. We always take her eye problems
seriously due to the tumor in the right eye and just because she had so much radiation. Finally, after a while, she seemed to not be bothered and was back to laughing at the movie.

I am thinking her sinuses are causing her a few problems. Her eyes could be messed up due to that, her headaches she is having and just her overall feeling yucky.

The plan, right now, is to start weaning her steroids this coming week and then, slowly, start weaning her cyclosporin. Once all that is out of the way, I guess, she will have to have sinus surgery to clear them out.

We are still working on the airconditioning and ducts in the house. This is just a very busy time of year in Florida but hopefully we can get this out of the way soon so the house will be ready for Katia's return. I promise, some day, I will be signing on from HOME:)

Well, for now we are going to get a little nap hopefully. We were up all night, so it seemed. Katia and I both were just at the point we couldn't sleep. Not sure why. When I know I have to get up in the morning, I don't sleep well, always concerned I will wake up late. I use an alarm clock but I always get up before it goes off.

Okay, I have a question for you:) I love finding out more about each of you and others enjoy reading your comments too.

What is your favorite thing to do during the summertime? What do you remember about summertime as a child?

Well, I will answer. My favorite thing to do in the summer is watch the kids play in the back yard. I enjoy having Sharayah and Tatiana home for the summer and have them helping me out and keeping Katia entertained.

What do I remember as a child? Definitely waterskiing:) I used to love to swim and ski in the lake we lived on. As a child, I could spend time alone for hours at a time and be quite content. I had a great imagination!!! We grew up on 5 acres and I had a whole imaginary town, people in the town, roads, stores, etc. I would ride my bike around and, yes, talk to myself:) I enjoyed having my friends over to go skiing also. I had some friends that lived right on the next street and they would come over and swim and ski or just play in the yard. I had a swing that was tied high in a bushy tree and I would swing as high as I could for hours and hours. The carefree days of summer:) My sister and I would go with my dad if he was going out of town. He worked a vending route, filling up Bubble Gum machines. So we traveled up and down the west coast of Florida. On the days he worked locally, we would stay home.

Well, I better wrap this up. I will be back later:)

Love, Tracy





June 23, 2004 8:00 PM

Good evening:)

Okay, I have a few results. So far, the prelimaries coming in are showing no leukemia cells, markers to make red blood cells and platelets. All of that sounds very good! Her sinus scan shows they are worse but the chest scan shows her lungs are clear. We are still waiting for the percentage of donor cells in Katia, the complete DNA study and of course, the viral studies on the marrow.

That is a lot of results, huh?

Right now, Katia is laying down and flipping through a story book with Tatiana. She enjoys flipping the pages. She doesn't look at the book, just turns the pages all one way and then reverses it all. Keeps her busy.

I am just tired tonight and for some reason my cheeks and lips are all red. At least I don't need lipstick:)

When we are home and things slow down, I think me and my family are going to have a slumber party minus the party part! We are going to all hybernate for a week!! Oh, that sounds great:)

Well, I wanted to get on here so I didn't make you wait and worry:)

I probably will be getting results on and off over the next week.

Katia remains the same with being warmer than normal, no spots though. We go to clinic in the morning and I am interested to see what her counts are doing. She had the GCSF to bring them up on Monday night so maybe they are still hanging around a good number. She is pretty low on energy.

Well, I bid you goodnight:)

Love, Tracy









June 23, 2004 11:20 AM
Day 139


Hello:)

As I type, Katia is watching TV and enjoying being here at RMH. She doesn't feel to great but she says she doesn't want to go back to the hospital. She still has a higher temperature than normal but not a fever. I am anxiously waiting to find out the results to these viral studies on her marrow.

Her bottom is much better. She just had a few bowel movements and seems to be fine now. She does have a small rectal tear but I have medicine for that. Last nite started off with her not feeling well at all. She kept saying she was cold (I had just bathed her) and she was shivering. I listened to her heartrate and it was about 142 (higher than normal) so I worried she may spike a fever but she didn't. She got comfy about 15 minutes later, had 2 more bowel movements and everything seemed to calm right down. She slept good. We both did:)

The thing with Katia is she repeats some of the same problems (like these bowel problems and butt pains) that she knows everything that I am going to do to treat her. Once we get things calmed down and give things time to work, she normally is okay. Her only ongoing, unresolved problem is her sinuses. They are going to have to go in and literally clean those out surgically but they can't until she is further out of transplants and her counts are more stabalized.

I get a lot of emails (best way to personally contact me) of ideas on how to treat Katia for certain problems. I do read the emails and I actually save a lot of them. Some are great ideas but that we can't do with Katia because of her medical conditions. Some are just amazingly simple and just make a lot of sense. I always tell my kids, you should be able to always listen to advice. You learn more by listening than by talking. I pass on ideas to other parents that may be having similar problems or ask me for a solution to a problem for someone else.

Sometimes I get emails that I think should be shared with everyone so I email back and ask that it be put in the guestbook. That way others can read it also.

But, as always, I am not a doctor so anything you see on the site, you should run by your doctor before trying it:) (Now I sound like some commercial)

Well, I am in the process of getting some laundry done so I better move along and get this update on the site. Thank you so much for checking on Katia:) I will let you know when I get any results.

Love, Tracy



PS This was sent to me via email by Bea and I want to share it with you.





Subject: Time

The Importance of Time

A young man learns what's most important in life from the guy next door. It had been some time since Jack had seen the old man. College, girls, career, and life itself got in the way.

In fact, Jack moved clear across the country in pursuit of his dreams. There, in the rush of his busy life, Jack had little time to think about the past and often no time to spend with his wife and son. He was working on his future, and nothing could stop him.

Over the phone, his mother told him,

"Mr. Belser died last night. The funeral is Wednesday."

Memories flashed through his mind like an old newsreel as he sat quietly remembering his childhood days.

"Jack, did you hear me?"

"Oh, sorry, Mom. Yes, I heard you. It's been so long since I thought of him. I'm sorry, but I honestly thought he died years ago," Jack said.

"Well, he didn't forget you. Every time I saw him he'd ask how you were doing. He'd reminisce about the many days you spent over 'his side of the fence' as he put it," Mom told him.

"I loved that old house he lived in," Jack said.

"You know, Jack, after your father died, Mr. Belser stepped in to make sure you had a man's influence in your life," she said.

"He's the one who taught me carpentry," he said. "I wouldn't be in this business if it weren't for him. He spent a lot of time teaching me things he thought were important...Mom, I'll be there for the funeral," Jack said.

As busy as he was, he kept his word. Jack caught the next flight to his hometown. Mr. Belser's funeral was small and uneventful. He had no children of his own, and most of his relatives had passed away.

The night before he had to return home, Jack and his Mom stopped by to see the old house next door one more time.

Standing in the doorway, Jack paused for a moment. It was like crossing over into another dimension, a leap through space and time.



The house was exactly as he remembered. Every step held memories. Every picture, every piece of furniture.... Jack stopped suddenly.

"What's wrong, Jack?" his Mom asked.

"The box is gone," he said.

"What box? " Mom asked.

"There was a small gold box that he kept locked on top of his desk. I must have asked him a thousand times what was inside. All he'd ever tell me was 'the thing I value most, '" Jack said.

It was gone. Everything about the house was exactly how Jack remembered it, except for the box. He figured someone from the Belser family had taken it.

"Now I'll never know what was so valuable to him," Jack said. "I better get some sleep. I have an early flight home, Mom."

It had been about two weeks since Mr. Belser died. Returning home from work one day Jack discovered a note in his mailbox. "Signature required on a package. No one at home. Please stop by the main post office within the next three days," the note read.

Early the next day Jack retrieved the package. The small box was old and looked like it had been mailed a hundred years ago. The handwriting was difficult to read, but the return address caught his attention.

"Mr. Harold Belser" it read.

Jack took the box out to his car and ripped open the package. There inside was the gold box and an envelope. Jack's hands shook as he read the note inside.

"Upon my death, please forward this box and its contents to Jack Bennett. It's the thing I valued most in my life."

A small key was taped to the letter. His heart racing, as tears filling his eyes, Jack carefully unlocked the box. There inside he found a beautiful gold pocket watch. Running his fingers slowly over the finely etched casing, he unlatched the cover.

Inside he found these words engraved:

"Jack, Thanks for your time! -Harold Belser."

"The thing he valued most...was...my time."



Jack held the watch for a few minutes, then called his office and cleared his appointments for the next two days. "Why?" Janet, his assistant asked.

"I need some time to spend with my son," he said.

"Oh, by the way, Janet...thanks for your time!"

"Life is not measured by the number of breaths we take but by the moments that take our breath away,"

Think about this. You may not realize it, but it's 100rue.

1. At least 2 people in this world love you so much they would die

for you.

2. At least 15 people in this world love you in some way.

3. A smile from you can bring happiness to anyone, even if they don't like you.

4. Every night, SOMEONE thinks about you before they go to sleep.

5. You mean the world to someone.

6. If not for you, someone may not be living.

7. You are special and unique.

8. When you think you have no chance of getting what you want, you probably won't get it, but if you trust God to do what's best, and wait on His time, sooner or later, you will get it or something better.

9. When you make the biggest mistake ever, something good can still come from it.

10. When you think the world has turned its back on you, take a look: you most likely turned your back on the world.

11. Someone that you don't even know exists loves you.

12. Always remember the compliments you received. Forget about the rude remarks.

13. Always tell someone how you feel about them; you will feel much better when they know and you'll both be happy.

14. If you have a great friend, take the time to let them know that they are great.

Send this letter to all the people you care about, if you do so, you will certainly brighten someone's day and might change their perspective on life, ..........for the better.

To everyone I sent this to "Thanks for your time" ---- Have a great week!!!












June 22, 2004 7:30 PM
WBC 4.53
ANC 2000



Coming to you LIVE from The Ronald McDonald House!! Yes, we are out:) Katia was all smiles as we left. Myron and the girls had come over this morning so we all left together and Katia was smiling from ear to ear as we took her and her belongings back to RMH.

In tow, we had a boquet of a dozen ballons (thanks, Tumbleweed Foundation) and we looked like we had just won something:)

Katia has not really felt well this evening though. Her bottom is very very sore. She finally just now had a bowel movement and I noticed she has a little tear there so I am sure that feels just horrible to her. She has pain medicine and I have creams for that so hopefully it will clear up because she is very very unhappy right now.

Sharayah and Tatiana can usually cheer her up by getting her mind on other things but, even that isn't doing much right now. She did however come back here and eat half a cheese and turkey sandwich a full 10 ounces of chocolate milk so that is good. She usually gives up milk as soon as she enters the hospital ( which of course she did this time) and her eating goes down in volume ( which it did) so I am glad her appetite came right back:) Her chocolate milk is Slim Fast which has 650mg of potassium and has really helped her a lot. She will drink at least 3 a day so... that is a big help.

When we left her counts were good with her electrolytes (sodium, potassium, magnesium, etc) but her hemoglobin was low at 7.7. Her WBC count came up to 4.5 with the help of the GCSF she had last night and her immune count is up over 2,000 today. I forget the exact numbers and I am too tired to get up and look. Her next visit to the clinic should be on Thursday so we will see how her counts are doing then.

Her bone marrow seems to show there are the needed markers for making her red blood cells and her platelets. We don't have final reports yet on anything. Tonight or tomorrow we should find out about any abnormal or leukemia cells, number of markers for red blood cells and platelets, and hopefully whether or not she is still all donor cells.

I want to thank each of you for all your many prayers during this hospital stay and ask for your continued prayers that the final results will all be good. As far as whether or not she has any viral infections in her marrow, will take about a week more to get the results.

Katia is snoring and asleep right now:) She is so cute!!!

Please pray for our friends who lost their son, Donovan, this past week. Their plan is a Sunday memorial service. That is all I know right now. I am waiting to hear from his mom. I got to know his Mom much more at the Ronald McDonald House. Her name is Norma. She was just always so sweet and full of smiles. The great thing about having her here was no matter how stressful things were, we could find reasons to laugh and we were sounding boards for eachother. I really do miss having her here. Katia liked knowing that Donovan was here (they didn't see eachother much due to their immune systems) and he was growing his "new blood" too. Donovan was a very special child who really fought this fight with true heroism. He took all his medicines and did all the things he was instructed to do but yet he still just tried to be a kid. I enjoyed, very much, walking by and seeing him playing or working on constructing things in the library here. We have a little room with a TV and stuff that we can isolate the kids in and nobody else can enter. It allows them to be in more of a "living room" setting. Donovan enjoyed watching wrestling in there. His mom and I would sit outside and just talk about all sorts of things. Norma and I very much like our coffee so one or the other would get up and start the coffee maker in the morning. Now I don't even want to go start it as I just miss them so much. When I walk by the library, I want to see Donovan sitting in there watching TV or making things. "Donovan, you will be truly missed." We always can say at least they don't have to fight cancer or take nasty medicines anymore. They don't have to get poked and prodded at. But the truth is, why can't they just not have to endure that anyway? Why? I just wish ALL kids could just be KIDS!

Please keep Norma and Brian (Donovan's parents) and Dillon (his older brother) and his older sister in your prayers. I cannot imagine how they are having to deal with this. No parent should have to see their kids leave this earth ahead of them.

As parents, on the cancer ward, we all face such tough decisions and moments each day. We all share unspoken words as we pass in the hall. When we talk, there are many things that go unsaid but we know each of us acknowledge. There is a bond automatically as soon as we meet there. I walk through the halls sometimes and I just wish I could do something to take peoples' pain away, but I can't. I can't let their child go home and just be an innocent child, free of pain and happily playing. I look at the kids and I see pillars of strength and determination. I see faith and hope on their faces. Part of me just wants to hug everyone but the other part of me knows we are all worried about our kids' low immunities so we avoid walking into eachother's rooms passing germs from one place to another. I see kids so happy to pack up their wagon and go home, even if they know they have to be right back the following weeks or so for more treatments that will make them feel sick again, run fevers and such. But yet, they continue to fight and fight.

I pray everyday for research that it will be able to find that magic link, that cure for all. I believe that day will come, but when?

Any time the kids' counts start to look unstable or go low, we worry about "R". Anytime a fever arises, we worry about "R". Anytime our lives feel like they are getting TOO back to normal, we worry about "R". Instead of thinking about the next school play or playdate, we think about possible relapses.

Do I sound like I am in a negative slump? Well, I guess I am in a way. It isn't that I don't ALWAYS think about this, I just don't voice it. I am a very positive type of person that tries to find the brighter side of life. I am happy for the here and now, for this moment. I am happy that Katia has her chance at life with the beautiful transplant she received February 5th of this year. I am so thankful for that donated cord!!! I am very hopeful and I have a very strong faith. I really believe that Katia has some task or purpose many years from now. But, I believe all of these kids do. I believe Donovan did.

Love, Tracy













June 22, 2004 8:00 AM
Day 138


Good morning:)

We had a very nice evening and a good rest. Katia was unplugged throughout the night from her IV pole so she was able to get nice and comfy to sleep good (which in turn means I got to sleep good in my chair). I don't know if I told you or not but the same chair is still in this room and I was happy to crawl in it and go to sleep:) Funny, huh? I really did get used to the chair and I remember the first few nights, in a bed at RMH, took some getting used to.

Well, we are about to head down for some CT SCANS of her sinuses and lungs and such. They just want to get it done while we are right here. I am hoping to be over at RMH early afternoon.

I am eager to see how her sinuses and lungs look. I think her lungs are still clear but I am sure her sinuses are not a pretty picture. I pray for the day we get this child's head all clear from these sinuses.

Have I told you lately how much I really appreciate each of you? I appreciate you so much!

Well they are here for the CT SCANS:)

Love, Tracy






June 21, 2004 5:33 PM

Good news is the skin biopsy looks clear of all things. We think it was just larger petechiae.

The bone marrow aspiration and bone marrow biopsy will have results in 5 - 7 days usually.

Since the skin biopsy was showed to be clear, the antibiotics have been stopped and if the night goes well, then we get out of here tomorrow:)

That will be nice. Katia will get a dose of GCSF tonight to help bring up her counts some so tomorrow's counts should look better at least for that reason.

The doctor was able to look at slides of her marrow and she saw Platelet markers and Red Blood Cell markers which means Katia should be making those things on her own. That is all we know from the marrow so far.

Please just pray that her marrow is fully donor cells, fully functioning, no leukemia or pre-leukemia cells.

Katia just ordered Mashed Potatoes and Chocolate Icecream and it is here so I need to go get her set up to eat. At least she is eating reasonably well:)

Love, Tracy and Katia









June 21, 2004 9:45 AM
Day 137
WBC 1.72
ANC 619

As you can see the WBC count fell even more but the ANC came up. When you figure the ANC you use a few figures to get your total. One of those figures came up. There are 5 types of White Blood Cells; Lymphocytes, Monocytes, Neutrophils (the most abundant), Eosinophils and Basophils. Each have very important jobs. Neutrophils are the ones that attack invaders to your body.

I never planned, in my life, that I would be learning all of this and spending countless hours studying about blood counts and cells and such. The human body is an absolute miracle how it is put together and how it runs.

Well, hopefully the Bone Marrow will be checked early this morning because since Katia has to be completely sedated, she can't eat right now. Her weight is maintaining good right now and I want to keep it that way. Her potassium count is right where it should be as well as the rest of her electrolytes.

I will come back later after we are done but I assume I won't have any concrete answers on anything today.

Please continue your prayers. Myron and I are both VERY concerned as to what could be causing this.

Love, Tracy









June 20, 2004 10:00 PM

No news yet but Katia's doctor wants to check her bone marrow in the morning to see if there is a problem with the marrow. Please pray her marrow is clear of Leukemia and 100 percent donor cells.


Love, Tracy






Good Morning everyone! It's Daddybug!

Thank you so so much for your sweet father day greetings.

I am so blessed to be a father, it's such a gift from God, and a bond of love that cannot be compared. I know that you fathers out there know exactly what I am talking about, an you mommies know too.

I am personally bless to have a tremendous role model as a father. He has been a steady, strong and loving example all his life. Except for God, there is nothing more important to him than his family. I love you Pa.

By the way thank you Tracy for giving me the job! :)

It is a job that really has no training manual, but love guides you, and all that we are required to do is our very best. I certainly intent to do just that.

As you all know, Katia's journey has inspired me to be so much more, and because of her strenght I have learned to be stronger.

I am very bless to have Sharayah, Tatiana and Katia. Three little girls that I hope will look back on life and understand the things that are important in this life.

That through love and unity we can make changes in this world, and that with God's help we can help heal, the heart, the mind and the body.

I look forward to a wonderful day with my girls, Thak you again for your sweet wishes, and thank you for continuing your journey with us. God bless! and Happy Fathers Day to all you Daddies out there.

Luv, always Myron












June 20, 2004 10:13 AM Concerned
Day 136
WBC 1.99
ANC 358


Good morning.

Well this morning I am concerned... I don't know what is going on with Katia's counts. The WBC went from 3.5 yesterday to 1.99 today and her ANC has dropped from 1378 yesterday to 378 today (no that is not a typo) and her Hemoglobin has gone from 8.4 yesterday to 7.7 today. I really don't know what this is all linked to and what is causing this. My concerns right now are:

Brownish Red Spots on her back, shoulders, chest and neck
Drop in WBC count
Drop in ANC count
Drop in Hemoglobin count
Lowgrade Fevers

As far as Katia's attitude, it seems to be decent. I can tell she feels a little drained. She isn't too happy still about being here but she is dealing with it and acts okay with the nurses and such. She of course doesn't like having to show everyone these spots.

I will try to come back later with any updates but just pray for Katia, please.

Love, Tracy









June 19, 2004 10:40 PM

First, Happy Father's Day to each of you:) I know for some this is going to be a great day but for others, it will be a day of fond memories and an empty feeling in your heart. For some, they will have a new baby for Father's Day (I have always thought that would be so neat to have a baby born ON Mother's Day or Father's Day). Father's Day means so many different types of celebrations and feelings.

I want to say "Happy Father's Day, Myron!" Myron has been such a hero throughout all of this. He has been almost a sole parent to Sharayah and Tatiana since last August. He has done an awesome job with such a huge amount of love and patience. I have been so blessed to have such a great father for my kids and a great husband to me. Having a great husband that has a HUGE amount of patience for me, helps me to be a better mother. In our house, a great rule of thumb is, "If Mom is happy, the home is happy." Myron is great for that philosophy because some of my ways can be, well, let's just say it, DOWN RIGHT OBNOXIOUS sometimes but my dear little family works with me:)

I am the type of person that puts things in a certain place for a reason. I may be the only one that understands that reason but I just have to have it that way or I won't be able to find things when I need them or get flustered trying to look for something. I know it MUST get irritating but to my kids, that is the only "way" they know.

I will share something funny with you. When we arrived here yesterday and got into our room, we had come from downstairs getting the biopsy done. Well, since we spent so long in this room, I had it organized in a way that just made sense for me. The first thing I did when we got in here this time was rearrange the room. I think the nurses that had come up with me from down in O.R. must have thought, "What is wrong with this woman?" But in about 3 minutes, I had it all back to the way that made sense to me:) That way, I feel more comfortable with my surroundings.

Well, Katia is asleep so I am going to try to get myself ready for bed (my chair-it is the same chair I had last time for all those many naps).

Thank you for checking on us:)


Love, Tracy

PS One thing that came out of today's labs were that her platelets had gone from 30 down to 13? Not sure why but she is getting platelets right now. Her broviac had been clogged for the morning so we are a little behind on things. Also, her potassium was low but tonights labs look better for that level. The skin biopsy doesn't seem to be showing any WBCs or fungus so... not sure what that will lead to. She has more spots tonight than this morning but we still have no answers. Her temperature is still playing around a bit but still not going high.

Please pray we can find some answers.






June 19, 2004 11:30 AM
Day 135
WBC 3.5

Good morning:)

Well, we have no new news yet. The cultures of blood taken from her broviac on Thursday still look negative for anything growing. The biopsy results of the skin probably won't be ready until Monday.

Katia is doing okay. She isn't happy but she has a good attitude and I am very proud of how she is handling this "side trip". She is eating and drinking the same. I was worried she wouldn't want to eat again but she is doing okay. She is being very friendly with most everyone so that is great.

I saw Casie's Mom today and Casie is pretty well doing okay. She is having quite a bit of stomach pain and pain from the mouth and throat sores. She is sleeping a lot but she is doing okay. Please keep her in your prayers.

Also, I ask that you pray for Michaela. She did not receive good news from her last scans. Instead of her tumors shrinking, they have grown. Some have doubled in size. They are not sure what their next step will be but they have a lot of faith.

Also, please pray for Paige (
She has been fighting Neuroblastoma over this last year and is slowly growing her little Angel Wings. Paige will turn 3 on Monday, June 21. I am sure her parents could use words of encouragement. Their website is beautiful with Paige's pictures over the last few years.

Well, I will be back later today. Please pray for these results and also that this is a short hospital stay. I would like Katia to see that there is such a thing as short stays. We have rarely had short stays in the past and the last stay just seemed to last forever so pray this one is short.

Also, in the quest of having the ducts cleaned in our house, we are now being told there is mold in them and in the air unit so the air unit has to be taken totally out, cleaned (hopefully not replaced) and put back in. The ducts will have to be replaced throughout so that is another delay in the preparation of the house for Katia's homecoming. At least we will know it is all totally "up to par" but this is just a lot to be faced with right now.

Thankyou for checking on us:)

Love, Tracy




**************





June 18, 2004 11:26 PM

Yes, it is late but that is okay. I wanted to update. Remember in the hospital, go to bed late, get up early:)

Katia had her skin biopsy done today and all went well. No results yet. There are more spots now than she had this afternoon. I can tell this is sort of an unsure thing with the doctor and I feel unsure about it too. I have never seen anything like this. They are sort of like brownish-red, flat spots that are bigger than petichea. They aren't in places she should have petichea. The main place they are is on her back and some on her chest. She has one on her right arm and one on her left thigh? I am going to see if she has more in the morning. They don't itch or hurt her.

Katia is not very happy about being here but, as usual, the nurses and doctors have gone out of their way to make her feel at home and keep things fun for her. When Myron and the girls arrived, they were like her cheerleaders. We are in the same room she had her transplant, which for some kids wouldn't be a good thing but to Katia, it is familiar so she is better with that. She really BELIEVES this is her room.

The girls and Myron will be at RMH for the weekend so they will be over here more often.

Good case scenario, this is something simple, she gets put on some new meds and goes back to RMH early next week. Second case is they find nothing and kind of leaves the lowgrade fevers unexplained. Third case is it is something that requires one of Katia's normal types of stays (not the 249 days but more like 2 to 3 weeks.) I am of course going with Door #1.

While I am up here though, there are a few families I need to catch up with and talk to. Plus, Katia gets to order through Room Service which her and I both appreciate. They have good room service for the kids and good food.

Of course, we cannot leave the room but I think Katia associates the hospital with having to stay in her room anyway.

Please pray for the kids and families up here on the floor. I kind of walked around a bit tonight when I was coming back from getting a drink. I just see families really struggling and I know they just don't know what each day will bring. I like seeing when kids and parents load up their wagon and head home with all their belongings piled high like little gypsies escaping the hospital for a while, before they have to return for their next treatments.

Good night.

Love, Tracy








June 18, 2004 5:10 PM
Day 135
WBC 3.1
ANC 900

Well we have been admitted and just had a skin biopsy done because of some suspicious spots that have appeared on Katia's neck, arm and back. No news yet but we are hoping that really nothing shows up and this is a quick stay. We are back in our transplant room believe it or not.

Katia is not in a very good mood about having to sleep here so we are working on cheering her up. I am not too good of a mood about sleeping here either but we do what we have to do and for now, we are just her little cheerleading squad.

We are right next door to Casie so I will try to update you on her as well tonight. I have to go get my laptop and some stuff from RMH to bring over here for the next few days.

The slight fever is still going on so this may be the cause plus we are waiting still for the blood cultures ran yesterday from her lines.

Love, Tracy


PS Please pray:)









June 17, 2004 4:50 PM
Day 133
WBC 5.1
ANC 1700


From the numbers above, you can see that Katia's WBC count has come up as well as her immune system, which is good. We weren't supposed to go to clinic today for a blood count but Katia was unable to take all of her potassium yesterday (4/10) and she was running a low grade fever so I wanted them to get cultures of the blood from her broviac lines-to make sure there isn't an infection starting. The WBC count could have risen due to whatever is causing these lowgrade fevers. So, we will find out the answers to the Potassium by the end of today and the line cultures sometime Sunday or Monday. Just pray nothing grows in the cultures or she will be admitted for treatment BUT I pray we find whatever is causing her problems.

I didn't want to update this morning and I am pretty much still in shock over Donovan's passing. That just really caught me by surprise. I knew he was sick and having trouble but I didn't expect that at all. I really hate seeing these kids that have fought so hard have to leave their families who love and adore them the same way we love and adore our Katia. It really takes a piece of my heart that will never ever be replaced.

I didn't meet Donovan until after Katia relapsed. I remember he was in his room at the hospital, shortly before Christmas, and he was selling chocolate candies to raise money to buy a present for a friend of his. So, I went in and bought a Snickers Bar with a $20 bill. I told him to keep the change and he was just so so happy. He didn't know who I was then. I must also add that was the first Snicker Bar I had ever eaten and I learned to REALLY like them. I will never see a Snicker Bar again without a fond memory of Donovan. When he found out I was Katia's Mom, he told his mom I didn't look old enough to be a mom! Well that was a pretty big compliment to me:)

His parents just finished cleaning out his room at RMH and I just didn't know what to do. I have seen these situations more than I wish to count but I still find it very hard to know what to say or do. I just pretty well feel frozen inside. One thing I definitely felt and I want to share here.

Donovan had a perfect match lined up for transplant back in January and at the last minute, the donor changed their mind. They didn't want to be a marrow donor anymore. That is all I know of that situation. Instead Donovan had to get a "Critical Mismatched Transplant" giving him a very low prognosis and a lot of struggles to look forward to with Graft vs Host, etc. During all of the drives we did for Katia, we pushed the fact that people shouldn't be tested to just see if they are a match for one particular person or a certain age group. If a person registered and not found to be a match but later was called to be a donor for a 50 year old man or whatever, we wanted them to be just as willing to carry through. The way I see it, a life is a life. If we can save a life, we want to save it. Also if a person is on the registry and they move, changing their address, they need to contact the Marrow Program and give them their new mailing information so if they are a match, they can be located. All of this is so very important.

Katia believes Donovan got to go home. I don't want to go beyond that because I don't want her scared if she has to go back to the hospital sometime or if she feels sick. She has known, in the past of kids becoming Angels but at the time, she wasn't in the condition she is in now. It is very hard for other families and kids fighting the same situation to lose one of our friends. It puts things into a perspective that we know way too well. We learn not to relax too much or to plan too far ahead. We know our plans could have to change at a moment notice because of a fever, vomitting, whatever. This disease runs our life.

Myron and I are trying to take this situation and make a difference with it. Spread awareness in the English and Spanish communities. Get people on the registery. Let people know that blood and platelets really does SAVE LIVES. We are trying to put faces with diseases so that people can see these are real kids that have families that love them so much and just want the best for them. All parents want to see their kids happy and healthy. Some kids are given battles to fight, not because they did anything wrong, but just because. I don't know why and it really isn't my place, I guess, to know why.

Katia has let us see our mission in life. Our mission is to help people going through these situations and to raise awareness to Marrow Donation. A bone marrow transplant doesn't promise to heal someone but it gives them a lot of hope they wouldn't have without transplant.

I want to thank all of you who prayed for Donovan and his family last night and this morning. Please continue to pray for them as they must face the next few days, months, and years.

I need to get this update posted.


Love, Tracy











June 17, 2004 12:05 PM

Our friend Donovan passed away this morning around 9:00 AM. I spoke with his Mom and she said it was as though he just fell asleep. He had a small teardrop in his eye. Donovan had fought this battle over 4 years. He will be greatly missed by his friends and family. Please pray for this family during this time.

"Donovan, you will be greatly missed here by us."


Love, Tracy and Katia







June 16, 2004 8:30 PM


First, I have an urgent prayer request for a friend of ours, Donovan. He just recently had transplant for relapsed Leukemia ALL. He is our neighbor at RMH and his transplant was in January. Tonight he is in the hospital with a very low oxygen rate and very close to having to be incubated (oxygen tube inserted in his mouth) which he has specifically said he doesn't want to have done. Donovan is 11 years old and a very sweet boy who has been through a lot since transplant but especially these last few weeks. He told his doctor he can't even remember what his bedroom looks like. Due to all his body has been through, he is diabetic and has now retained a LOT of water weight and has just been very uncomfortable. He went back into the hospital to be treated for the excess water weight and then the oxygen became an issue and now it has worsened since yesterday. He has a Mom, Dad, sister and brother that are just worried sick for him. Please pray for them and especially for Donovan that he will show improvement and get better from this.

As far as Katia, well tonight she is playing with FEVER. Her temperature keeps going up and down. She hasn't used the bathroom for about a week I think and has quite a bit of mineral oil and Miralax in her. I am hoping she will go very soon. Please pray this fever doesn't persist.

Myron and the girls just left. Katia fell asleep before they left. She feels a lot punier than normal so she was just wiped out. She had a long day.

I want to thank each of you for your prayers because they make so much of a difference. I know alot of you share Katia's and other childrens' stories with your families, friends and coworkers and I really appreciate your doing this. Myron and I decided quite sometime back to make a difference in the fight against Leukemia. Help the people we see everyday, the families going through this. It is such a struggle to maintain family togetherness, work, finances, meals, just a whole lot of stuff. This is a time when things don't want to just work in place. Each day is a new day that we have to face and figure out. We have to deal with good news, great news, bad news, horrible news, normal day to day news, etc. Sometimes it feels like someone is just throwing knives your way and you don't have the strength to move.

When I started this site, I did so with the intention of sharing Katia's story but then I thought, "No, I am going to Katia's story AND our family's story." I mean we are all in this together. As I met more and more people going through the same struggles, I decided to turn Katia's page into a informational site of other diseases, as well as Leukemia. I decided to post prayer request or request for kids who need cheering up or visitors to their site, etc.

Myron and I were talking tonight about The Katia Solomon Fund and the many things we want to be able to reach out and do. We want to do this now. Not wait until we are passed all of this but right now. There are families, like Donovan's, that their heads are just spinning and a little sigh of relief via a bill being paid, groceries for a week, personal products, etc. could just really reach out to them at such a needing time. It is our hope to be able to just walk up to someone and say, "We know what you are going through and we want to help you." and just offer them some type of help with no questions, no embarrasment, etc. Myron has put countless hours into raising awareness for Marrow Donors and we know that has paid off. We know that, from Katia's drives, a few matches were found for other people waiting for transplant. We want to make this dream a success because this is a dream that really makes a difference here and now for people that sometimes don't even have the time or knowledge how to or who to ask for assistance.

So, please keep this in your prayers. If you can help The Katia Solomon Fund in even the smallest way, it really does make a difference. It has made a difference for us and it can make a difference for others.

All Children's Hospital raised over $4,000,000 in this last telethon and they said the major part of the contribution came from people calling in $10, $20, etc. Those really did add up. That hospital makes a difference in so many lives everyday. That is what we want to do (but on a smaller scale) for people.

Well, please pray for Donovan and all the children fighting diseases and illnesses over there in the hospital. Please keep Casie in your prayers. There is a lot of waiting going on with her right now. The first 30 days it seems is nothing but throwing up, IV meds, and waiting. Please pray for her parents to continue to have their strength. Please pray Katia's fever will stay down. It has gotten up to 37.4 and 38.0 means she goes into the hospital. Her normal temperature stays between 35.7- 36.3.


Love, Tracy









June 16, 2004 12:49 PM
Day 132



Good morning:)

Today is a day of practicing for Katia. We are practicing walking and sitting up and turning over. The sitting up and turning over, more on her own and the walking with me or her walker. Pray she will improve in both of these areas. She needs these feelings of independence.

Last night was a long night for both Katia and me. Her back was hurting her and not letting her sleep. I told her she needs to move around more and try to stretch out her back muscles. She is still complaining about it this morning. A big worry I always have is her spinal fluid. Both times, when she was originally diagnosed and with relapse, her spinal fluid was full of bad leukemia cells. Both times she would have back pains and headaches. She isn't saying anything about headaches right now and I don't ask. I am sure if her head really bothers her, she will tell me. Katia does hold back on her complaints because she doesn't like having to take medicine and she knows if she is hurting bad enough, she will get medicine.

She hasn't been acting like her eyes are bothering her at all for the past few days so I believe she isn't having a problem with them right now. I haven't called to line up the appointment with her optometrist and I may wait on that since I know it will very much upset her and it may not be necessary right now. I always try to weigh things out to see what is completely necessary and what isn't because she gets so stressed over everything and I don't want her to get overstressed. That does her body absolutely no good.

Let's see what else. My back has been doing good, for the most part. I really appreciate the fact that my back is feeling better. It is like a bad headache, you know when it is really bad but sometimes you don't realize when it is finally gone until you think about it. Well I think about the fact my back is feeling better and I enjoy it:)

So, that is about all for now. I still don't know anything about the ECHO and EKG but I assume they are fine or I would have heard otherwise. I will find out this afternoon though because I just called her doctor.

Katia hasn't been outside for 2 days right now. I am trying to see if her sinuses improve by not going outside. That would show me it is an allergy. I don't think I am right though because she still sounds pretty bad with her cough but she doesn't have any sniffles right now. Not sure?

I will be back later today. Thank you for checking up on us:) We very much appreciate your visit!

Love, Tracy


PS For those of you who were praying for Amy M , it worked!!! Go check out her page.







June 15, 2004 8:30 PM

Hello:)

We are here watching Charlotte's Web:) Katia loves this movie:)

One thing changed today... Myron has returned to work at the airport. They really needed him back. We were hoping to have me home by the time he went back to work so both his mind and schedule would be more freed up. But, they needed him so he is back. That is good though. He really enjoys his job. Sharayah and Tatiana will need to be over here more and there are still a few things needing to be done at the house before Katia can return. The last main thing being the Air Ducts cleaned out and then getting the last few things figured out. We should find out more about the duct work this week. We all will be so happy to be under one roof.

For those who have gone through this or similar situations, you know how hard it is to be "living" in two different locations. It is like running two homes and just the driving back and forth has to be wearing on Myron by now. He is such a good daddy though and won't miss seeing me and little Miss Katia. No matter how tired he is, he gets over here to us.

Sharayah and Tatiana spent the day at a friend's house swimming. They enjoyed it and they came over here in the afternoon with Myron.

With Myron back at work, he has to get to bed earlier because he gets up around 3:00 AM. Usually they can come over here and stay until around 10:00 or so at night but that will have to change.

Well, Katia is doing good with her eating. This evening she ate a WHOLE Turkey sandwich with cheese. Usually she nibbles at half a sandwich but she really liked eating this evening. She needs a poopie now though. It seems her appetite grows when she needs to have a bowel movement and her belly just gets bigger and bigger till it looks like it can't hold any more.

She got out of bed for a while today and did some walking between me and the bed. It is only about 2 steps each way but she did that about 5 or 6 times and then stood for a while. She gets irritated with me making her do this but she never refuses to so I just do what I can.

Well, Katia says she wants to hold my hand while she is watching TV so I better let this go. I just wanted to update a little more this evening:)

Love, Tracy

PS Please see the prayer request for Amy M.









June 15, 2004 12:13 PM
Day 131


Good morning:)

Right now I am working on updating pictures on Katia's site and getting the next Auction up and going. It should be ready around 1:30 PM or so today.

I added a prayer request above for Amy Mareck. She is in real need for your prayers for God to grant her a miracle. Amy was diagnosed with Osteosarcome back in October 1999 and has been in and out of the hospital over the last 4 1/2 years. Recently she has had more scans done which is showing it has possibly spread to her spine. Amy is a wonderful girl ! I have followed her site since I started Katia's site back in November 2003. Amy has prayed for Katia and right now, Amy needs our prayers for a miracle. I am sure she would appreciate any words of encouragment you could leave in her guestbook. Please take a chance to go "meet" Amy via her website. As we all know, prayers do make a difference in many ways.

Katia is doing okay today. She is pretty sore because I have been trying to get her to walk more. She is very wobbly so she holds onto me or the side of her bed and can only take a few steps at a time before she gets very shaky. She is determined though so she does try and try.

She worked hard on the stuff for this auction but she had a lot of fun. I had to finally call it a day to get her to stop painting. She was really on a roll and could probably have painted a hundred pieces. We decided to spice things up with ladybugs. I painted one of the pieces, a little house, but Katia got to tell me what to do so needless to say, IT IS VERY COLORFUL!!

Well let me finish working on the pictures and the auction. I wanted to get this prayer request up ASAP.

Love, Tracy












June 14, 2004 3:25PM
Day 130
WBC 3.5
ANC 1100 (up a pinch)

Good day:)

Well we are back from clinic and also the EKG and ECHO. Katia wasn't very happy to have to go back for the other tests. She is tired (I understand completely). Good news is that the doctor has discontinued 2 of Katia's antibiotics. Her urine and stool labs seem to be cleared of infection. Katia is very very very happy about those 2 medicines being gone now.

Another set of good news is her potassium levels are normal today so what we are doing is working. She gets potassium in her IV fluids for 8 hours at night plus she is taking 10 capsules (which I empty into Catsup) over 4 different times in a day (3 3 2 2). Katia takes that okay but I think she is getting sick of just having to take so many things. I don't blame her but she takes it all and understands it is to help her new blood grow good cells and keep her healthy.

Okay I have another small bit of good news:) The doctor wanted another urine test done and that is done by putting plastic urine bags (which we adhesively attach to her). A lot of times we have no luck and have to change bags (which hurts) over and over. Today, we got it on the 2nd try so that is behind us now:) Katia is so pleased with herself when we finally have the urine in the cup. I am happy to get it done to because I hate having to bug her over and over.

As you can see her immune system count has risen another 100, which is great, because it didn't drop any more. I am hoping it will continue to climb since these infections are behind us.

Right now, Katia is looking through the picture book of all of her Caringbridge Friends and playing with a bunch of postcards:) You can't imagine how many hours have been passed with her just going through her stuff or flipping the pages of her album. I like the postcards because she always notices new things she hadn't seen before and she is able to see other parts of our country and the world. The pictures make her happy because she knows everyone in there is a friend of hers. What a lot of friends!

With this, I will go so I can get this posted. I haven't been online yet today so I have some catching up to do:)

Lots of love, Tracy











June 13, 2004 11:14 PM

Good evening:)

I mainly just came by to say good night. We have clinic in the morning, an EKG and Echo to have done so it may be later in the afternoon before I get on. Just pray all the tests look good.

I think all will be well. I worry about Katia's counts and she is getting more and more stuffy it seems instead of her head clearing. She doesn't really let it bother her much or at least she doesn't show it. She doesn't want me to give her any more medicine I think. She tries to say she is feeling better all the time hoping I will stop with all the medicines. I tell her this will be going on for a long time because her new blood really needs it so that it can be strong and take good care of her.

Myron and the girls just left a short while ago. They had a lot of fun together. The like to act stupid to get Katia to laugh and it definitely WORKS! Katia was laughing and laughing.

I am praying for her to start building up some body strength and show some improvement in the physical part of all of this. I feel so bad that she can't walk. Today she tried to crawl and really couldn't do too well at that. She just finds it so hard to move. I expected some of this but not really for this long.

She gets so mad but I make her walk a few times each day. I just hope I am not hurting her more than helping her. It breaks my heart when she says how much it hurts. I just want to scoop her up and carry her everywhere but I know she needs to feel some independence again and that physical strength will help her heal completely.

So, pray for little Katia's legs and hips and such.

I love my little Ladybug!!

Love, Tracy









June 13 , 2004 3:30 PM
Day 129

Hello:)

Well, all is well in our little part of the world. Katia is here looking through some toys of hers and other than her sinuses bothering her, she is doing pretty good. Poor thing has a very stuffed up nose and bad cough. But, she seeems to be able to overlook this.

My sister came by today for bit and spent some time with Katia and me. It was nice to see her and Katia was amused by her.

This morning, Katia and I both slept in. We didn't get to sleep until around 3:30 AM when I unplugged her from her IV fluids, so we were really tired and sacked out. It felt good though. We got up around 8:00 AM and she did her medicines and had some milk but then we actually fell back to sleep until 11:00 AM. Wonderful!!!

Myron and the girls are almost here to spend the rest of today with us so I wanted to get an update in and let you know all is okay.

I handed in a urine and stool specimen for Katia yesterday but I haven't heard anything back yet...

Love, Tracy













June 12, 2004 3:06PM
Day 128


Good day:)

Katia and I have been having a nice morning and early afternoon. She really doesn't feel well, quite weak. So we decided to paint some. Her and I were painting pieces for the next auction (coming some time this week). Katia told me she loved me over and over so of course I have been having a good day. What mother doesn't like to hear those wonderful words from their kids? I do have to say, my family makes me feel very loved and, now, very needed:) Sharayah, Tatiana and Myron cannot wait to get me home. They miss my managment skills at keeping the house running smoothly. Although, like I have said over and over before, they have done an awesome job of running the house!

I talked to Casie's Mom for a while last night. Casie is sleeping a lot, which is good because when she is awake, she is nauseated. Those were the days in which Katia's best friend was her "puke bucket". Casie hasn't had any fevers and seems to be on track with her transplant thus far. So, please continue your prayers and thank you for going by and signing Casie's Page and signing her guestbook. I am sure, when she gets back online, she will feel very loved by all of the encouraging words and prayers for her.

Please pray for our little friend Donovan, who is here at the house with us following his transplant. He has not been feeling well and is retaining a LOT of water weight and is very very uncomfortable. Although Katia and Donovan can't play together, it is reassuring to know that another child, having just gone through transplant, is right here with us. So, please keep him in your prayers. He is 11 years old and doesn't have a Caringbridge site.

Well, that is about all for now. I am praying Katia's immune system counts will start to rise and these infections of hers are clearing up. We have a VERY small urine sample to go hand in as well as a new stool specimen. So hopefully they come back negative for any infections.

Enjoy your weekend:)

Love, Tracy










June 12, 2004 3:30 PM
Day 127
WBC 3.5
ANC 1000


Hello:)

Well, we are back from clinic and all went well. We had a treatment that takes 3 hours so Katia was getting very stir crazy and not in a good mood at all but it made her all the happier when she left:)

As you can see her WBC count went up some but they ANC didn't improve much. I am not sure what that WBC count is made up of but we need a better immune system. You WBC count is counting 5 types of cells (Lymphocytes, Monocytes, Neutrophils, Eosinophils, and Basolphils) and some of those cells are the ones that attack infections. So, we need more Neutrophils:)

As far as me, well I actually do feel better today. Maybe if I can just get the pain to go away for a few days, it won't come back. That is my hope. I am really not one who likes going to the doctor. I feel like I am just complaining. But, I also don't like to feel bad (who does?)

I would like to just wait until we are back in Tampa so that I don't have a problem keeping follow-up appointments and such because there are always follow-up appointments it seems.

I am also trying to change Katia's medicine schedule around so we can sleep more straight threw during the night. We will figure something out. At least I can stretch out on a real bed now. I didn't mind the chair at the hospital (really) but I do appreciate being able to stretch out and I am sure my back wasn't too happy with that chair. I am just someone that tries to adapt to a given situation. My back doesn't agree:)

Well, Katia is asleep right now so I am going to finish up some laundry I have going and lay down for a bit.

I am praying we will have a quiet weekend and that Katia will feel better over the weekend. She is very stuffed up and coughing right now so we are going to do a more steady dosing of Benedryl.

Take care and have a safe weekend.

Love, Tracy












June 11, 2004 11:09 PM


Hello.

Well I am tired so I hope this isn't too choppy sounding:)

Katia had a nice day with Myron and the girls and I went to the doctor. I called around to find a Walk-in Clinic and when I got there, they don't accept my insurance so I ended up at the Emergency Room of the Hospital right next to All Children's. Well that didn't go so well. After a long wait I was finally called back and then just briefly spoken to, told I was so sore due to stress and given 3 prescriptions for pain medicine, anti-inflammatory, and Flexoral (however that is spelled). Anyway, since my neck has been such a source of my pain, I asked to have an x-ray (which they did hesitantly) and that looked fine. Then just to make sure there isn't anything brewing in me, I asked to have a CBC (complete blood panel) to see how that looked. There are a few things low and high but for the most part, that looks good. So... I am going to call my regular doctor when I get home and just try to handle it from then. I would really really like to get a scan or x-ray of my WHOLE back because it just feels awful most of the time. I know stress can cause things but this doesn't feel like stress, it feels like something is out of place or displaced for that matter. My neck causes me pain every single day now and between the two, I get very little sleep. I am sure a LOT has to do with what we are going through right now but still, there has to be a way of fixing it. I don't know. But right now, I am just tired and Katia is snoring asleep (she is quite the snorer). So, I am going to bed.

We have an early day at clinic tomorrow so please pray her counts have come up some or at least not down. She has been very quiet for the most part of the day and is having poopie problems again. She hasn't smiled or laughes too much today so pray that returns tomorrow too (I love her smile).

Well, God bless:)

CASIE UPDATE: I know she is having quite a bit of nausea and I will try to see her mom tomorrow or call her. Today I couldn't get hold of her. Thank you for also keeping Casie, and the rest of our friends, in your prayers.

Love, Tracy




June 10, 2004 12:15 PM
Day 126


Good day:)

We had a decent night, not a lot of sleep but no real problems. We are both just insomniacs right now!

Myron and the girls are headed here right now. Katia is going out of her mind right now to see them so they are coming over a little earlier than usual. She had a rough time last night due to coughing and coughing but today, she sounds fine. Usually it is at its best when we go to clinic:) Isn't that always the case?

My PLAN today is to go to the doctor myself. I know I said that the other day but sometimes it just doesn't work out.

My biggest problem is my back and neck (they stay in a lot of pain) and then the headaches are still persisting but don't seem as bad- maybe I am getting used to them. The newest addition to the problems is my armpits are hurting now and just generally, my whole skeletal structure seems to hurt. I am sure it is something simple or just a complete lack of sleep. There have been a few nights where I feel like we catch up on our sleep but then I am still always completely tired. When I think of my life the last 10 months, I can pretty well see why I have all of these problems but I would like some relief from them. Myron and I both are just always going going and never really get a chance to just sit and breathe. This is a persistant problem among parents in general but especially parents of kids with life-threatening illnesses.

I feel like making a bumper sticker that just says, "Excuse my lack of thinking". That is for the times I move over in front of someone, forget to signal or any other action that appears to just not make any sense:)

Well, that is about it.

I am going to try to keep up with Casie's progress at the end of each of my journal entries or as often as possible but please take the time to go by Casie's Site and sign her guestbook. When she does get back online, I am sure she will appreciate your entries. I am the one that turned her guestbook purple (oops) but her Mom says that is her favorite color at least.

Love, Tracy

CASIE UPDATE: Casie had her Bone Marrow Transplant early this morning at 1:45am. It ran until 3:15am and she is doing okay. She is having some nausea which is to be expected. The match was an 8/10 adult female donor. If you would like to send her a card or postcard, you can send them to:


Casie S.

All Children's Hospital 2SW

801 6th Street South

St. Pete, FL 33701



I am sure she will appreciate it:)
















JUNE 9, 2004 10:22 PM
CASIE IS BACK UP ON 2SW FROM ICU. SHE GOT BACK UP AROUND 8:30 PM TONIGHT AND (HERE IS THE BIG NEWS) SHE IS HAVING HER BONE MARROW TRANSPLANT TONIGHT AT MIDNIGHT! PLEASE PRAY THAT ALL GOES WELL FOR CASIE. SHE IS STABALIZED FROM ICU AND HER DONOR IS AN 8/10 ADULT FEMALE MATCH. CASIE WILL REALLY APPRECIATE KNOWING THERE ARE PRAYERS GOING OUT FOR HER AND HER AND HER MOTHER HAVE PROMISED TO KEEP ME UPDATED AS WELL AS THEY CAN. I KNOW ONCE TRANSPLANT HAPPENS THERE IS A LOT OF HURRY UP AND WAIT BUT PRAY THIS GOES SMOOTHLY FOR CASIE.







June 9, 2004 8:30 PM

Please see the message above:)

Well, we have had a reasonably quiet evening. I took Katia in the kitchen here, to the dining room table, and let her color for a while, eat dinner and now she is laying in bed watching TV and flipping through her lab tests results:) "To each his own."

So, I am here updating and looking up a few things that are concerning me.

Thanks for checking on Katia. Also, from what I understand, Casie is heading back up to the Oncology floor, from ICU, so that is a good sign. I will really try to talk to either her or her mom tomorrow and get more news if I can. I am sure they are very anxious.

Your prayers are amazing!!


Love, Tracy









June 9, 2004 3:20 PM
Day 125
WBC 2.9 (concerning)
ANC (Immune Count) 900

Well we are back from clinic and Katia is munching on lunch:)

As you can see her WBC is 2.9 again and that is concerning. The other problem is the WBC count is not doing much for her immune system counts which are low. Her ANC (for those who know) is 900. It keeps getting down and we give her GCSF to boost it up but then it drops right back down again. Usually when her WBC count is around 2.9, her ANC is around 2,000? Not sure what is going on with this right now but I am thinking it may be due to the infections she is fighting. Her platelets went from 41 to 25 since Monday and they too are seeming to keep this up. We aren't sure why. I am getting a bit concerned here.

Her appetite has been good, her bruising is remaining about the same, her walking is not improving. She is complaining that her legs and back hurt.

All of this is just getting draining (I guess it has been draining all along but it seems to be getting more and more draining).

We didn't expect wonders at this time but we were hoping for some improvements. A lot of these kids we went through transplant with are having problems right now so Katia isn't the only one. Just pray for Katia and her little transplant team that they will show more and more improvements in all of their labs and tests.

We are still waiting on this air duct cleaning at the house to be finalized so hopefully that will be soon. This is a busy time of year for them as you can imagine. June in Florida and airconditioning... BUSY!

Well, that is about all for now. I will plan to catch up on how Casie is doing and be back. I know she had the second dose of the medicine that she reacted to (which put her in ICU) but I am not sure how she is doing yet. Please pray for Emily right now who is back in the hospital with some unexplained fevers. Her mom is really getting worried about her remission right now.

I have some laundry going here so I better go move it to the dryer:)

Love, Tracy




*******




June 8, 2004 10:55 PM

Good evening:)

Myron and the girls were here for a while tonight which was really nice. They got to watch the "Mommy and Me" video while I talked to a family whose son just relapsed and now needs a transplant. Please say a prayer for him.

Katia has not been in a good mood for the most part of the day. It is bothering her that she can't do as much as she wants to do. She really wants to walk and she does try but it hurts and she falls. Her eyes are so puffy and I am not really sure why. I think, sinuses, but then I am not sure. She is supposed to see the eye doctor tomorrow or Friday. She will not be happy about that.

Tonight after Myron and the girls left, Katia asked if we could go eat in the kitchen here. Well we had just had dinner (as a family!) so I didn't understand what she meant. She ate a LOT tonight, I mean a LOT. So, I asked her and she just wanted for me and her to go sit at the counter on the stools and eat rice and chicken. That made sense because she enjoy her and me sitting at the counter at home like that. I know she just wanted to do something special with me. So, I went in and prepared a few things for her and came back and did her medicines and changed her broviac dressing. I went back into the kitchen to check on things but it was just getting too late and we had our little "picnic" on the bed in the room. Maybe we will try our "counter picnic" tomorrow a little earlier in the day when I can better prepare.

Right now she is plugged in and asleep for the night so I thought I would jump online and update, send a few emails, and check a few things.

Thank you so much for all of you responding to the question in the journal from last night. They are really nice to read.

Well, I am going to finish up here and call it a night...

Love, Tracy

PS I didn't make it to the doctor today... I know... but I have been feeling better this afternoon and I just decided to give it a few more days and try to get some more rest:) I promise I will take care of myself:)







June 8, 2004 11:56 AM
Day 124


Good morning:)

We had a long but okay night:) Even Katia kept complaining that she was getting no sleep. It is funny because since she has been around me so much, she talks like me and it cracks me up!

Right now, she is leaning on me watching me type and telling me what to say...

So, we should have a slow day. I am planning on going to the doctor, for myself, today and find out what is going on with my back and these headaches. They are just ongoing and never cease. Hopefully I can get an x-ray today. I have put off going to the doctor because I don't like having to go back and forth to a few appointments to get one thing done. I can't keep appointments because something always comes up. This time last year I had a mammogram done, if you remember, and it took until August to finally get the final, but unresolved answers. I have been amazed at how well Katia's doctors have organized her care and treatment and all her many tests that she requires.

Myron is in the process of finalizing our house with getting the duct system cleaned out and ready for Katia. Hopefully all will go well with that and this "going home" will become a reality soon. That would be nice. I can't even imagine actually being home. We have been gone since August 2003 and it just seems so unreal to imagine all of us under one roof without having to say goodbyes at the end of the night to send half of us "home". Katia is so sick of goodbyes. She gets annoyed by it more and more.

I want to get online real quick and check on a few things and get this in the updates. I type all of this offline now (I am learning) so I don't tie up the phone line or risk getting disconnected.

I will be back later in the evening:)

Have a great day...

I am about to go read the guestbook when I get online. It is something I very much look forward to doing!

Love, Tracy


PS I would like to share a link with you. It is from a group of people that send out cards to sick children, kind of like MACS and Hugs and Hope. These deal with kids in the UK. They are Post Pals and are a really great organization!!! I hope you will bookmark their site and keep up with the new kids they post. I know how great mail is for these children!! THANKS:)










June 7, 2004 10:03 PM

Good evening:)

I am back, can you believe it? I miss getting on here more often but since we left the hospital, I have become a fulltime nurse to Katia and I just stay more busy than I ever imagined. Don't get me wrong, I AM TICKLED PINK TO BE HERE!!!

We do have a little more free time now that we have been at this routine over a month now so things have definitely smoothed out. Since I just have the one phone line here, I have to plug in my laptop anytime I want to go on and be on and offline pretty quickly so I am not tying up my phone. I miss checking on other pages. I have been checking on some people for so long that I feel lost when I don't check in. If you know something that has changed with one of the prayer request listed above, please email me and I will make it a point to get by there and make the updates on the request section. That is a very important part of this page that I feel a big need to keep updated.

Please pray for Casie. I haven't talked to her mom today but I just know she needs your prayers. The same medicine that has caused her to have to go to ICU is continuing to have be given to her and she has more harsh medicines to wipe out her marrow before her transplant. This is such a hard time in a transplant so I know she needs your prayers. Katia and I say prayers for her, on and off, all day.

Katia has been a good mood all day, full of talking. Well she wasn't in a good mood at clinic. She, for some reason, thought she was getting her broviac taken out? She assumed that since her hair is coming back that she is done, ready to get her broviac out and go have pancakes at Disney World. She has this all settled in her mind. I told her that she has more time to go and her hair will need to be quite a bit longer. Her broviac is her friend because it helps her not have to get poked to have blood drawn and it drinks a LOT of medicine for her! She calmed down and has had a good afternoon and evening.

We are watching the Tampa Bay Lightning Game right now and she is getting into that. I like it when she talks a lot (I don't know where she gets that from) because it means she feels more at ease. When she gets quiet, she is stressed and thinking about things ahead. She knows when the time is coming that she has medicines to take and she gets real quiet until that is behind her. She HATES taking them but she does it without giving me any problems or trying to spit anything out.

Well, that is about all I came back here to say. I do have a question:)

Okay, we are half way through the year of 2004. What has been your favorite memory this year or what have you learned this year that means a lot in your life?

Let me answer...

My favorite memory has to be Katia getting her "New Blood" and just how significant that was in all of our lives. That was like giving birth to her again and I gained a whole new appreciation for life in general.

What have I learned? Well, I definitely have to say I have learned a lot of medicical information (more than I ever thought I would need or want to know) but the thing that I have learned that will stay with me always, is a great deal of patience and flexibility. I have learned I am not in control of my day to life and how it may change but that I am in control of how I chose to handle the changes thrown my way, good or bad. I have always been a planning type of person, everything had to be worked out and organized well in advance. Okay, I am still that way... But I have learned that things WILL come in and put a "wrench in your plans" and the best thing to do is to just do what I have to do with as little (I can't say without any) complaining.

A big trial for that patience was the day we were packed and ready to leave the hospital, headed out the door and then WAM! We didn't get to leave. I wasn't happy about it but I was as understanding as I think I could have been and I just figured, it was better that they caught the problems with her labs before we left than for them to have to readmit her or Heaven forbid, it cause an emergency return due to medical problems that could have been avoided. Those next few days proved she really needed to remain in the hospital and get her labs worked out.

So, that is what this half of the year has taught me and brought to me:)

I appreciate each and everyone of you for coming and checking on us. I enjoy hearing from you and about you and your families. I feel like so many of you are my neighbors:) I thank God each day for the friends we have met along this journey, who have in some way or another, "held our hand" throughout this journey and will continue to keep up with Katia through the day she gets married (when she is like 45!)

THANK YOU!!!!


Love, Tracy







PS
I meant to post this message from Myron yesterday. I always like to post what he leaves in the guestbook with the journal entries because it is easier to look back on later.

This was left Sunday, June 6, 2004...




Good morning!

It's Daddybug just saying a quick hello.

Every time I come to this guess book I gain incredible strenght. The tremendous amount of love and support that is here just jumps of the page and warms the heart of all who read it.

Thank you for taking this journey with us, you are such a crucial part of Katia's recovery, we are so thankful for you.

I wish I could give you all a big hug! Maybe they will invent a computer with arms!:) Well... I guess I will just have to wait to meet you all in person one day.

As you all know Katia is holding strong, yet she seems so fragile and the fear of something trying to disrupt her progress looms overhead every day.

I so much look forward to the day she can be weened of some of the harsh medications and return to her normal activity level.

I dream of her running and jumping, swimming and doing all the little things that children should be doing.

At the same time as a family we have learned to count our victories.

Being a part of this years telethon is a reminder of the hundreds of families living their own nightmares and it humbles us and reminds us of how very precious every second is.

When I am with Katia, I am like a leech stuck to her. She is so lovable! She gives daddy all the loving right back.

I am so anxious to get her home...both her and Mommy.
Mommy is feeling the little aches and pain now its about time she comes home and rest.

Thank you for your continuous prayers, thank you for supporting our auctions and different fund raising events

Thank you for helping us find the different supplies and giving us the suggestions that make the journey so much more tolerable. I am so blown away by your kindness.

God bless you all, and hope you all have a wonderful week.

Luv, Myron








June 7, 2004 4:30 PM
Day 121
WBC= 3.2

Hello:)

I am so sorry these things get so late but I figured we would try to sneak in a small nap today and actually had some luck!!! We both really needed that as we had a long night.

As you can see Katia's WBC count is still low so we got another dose of GCSF today to help boost those counts BUT her platelets went from 25 on Friday to 41 so that is a good thing:)

Her eyes are still bothering her enough to ask her doctor to check them out so she will see an optometrist this week at one of her appointments.

I talked to her doctor about her walking not being any better and she agrees it is the steroids which are next on the weaning process. We are still trying to wean off another drug before that one in hopes it will be helping her platelets. It seems this may be working.

We had a nice but very busy weekend and are looking forward to someday getting out of here and back home. Katia is saying she wants to go to Disney but that is not possible for months so right now we are trying to concentrate our focus on home:)

One of our neighbors here let us borrow DADDY DAYCARE and she is laughing and watching that movie as I type. That is a funny movie!

Please continue to pray for Casie as she is still in ICU, last I heard. I spoke to her mom yesterday and Casie seems to be improving but needing to remain in ICU since she is continuing the medicine that put her there.

Well, Katia wants some Beenie Weenies! So, I am off to the kitchen:)

Thank you so much for all of your prayers and your visits!!!

Love, Tracy


PS GO LIGHTNING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!







June 6, 2004 12:02 PM
Day 121


I would like to start this off with a prayer request for Casie S. Casie is in the preparation days for transplant and due to a fluid overload, she is now in ICU. Please pray the doctors can get this quickly under control. I am going to try to find out some more info today and post it later this evening.

Katia is doing okay. She just finished eating about 1/4 sandwich and some chocolate milk so that is good:) We are watching the All Children's Hospital Telethon live on TV right now and seeing people we know and others we have never met. The telethon raises a lot of money for All Children's Hospital to continue giving the high-quality care they give each and every person. If you would like to call in a pledge, call 1-800-270-8642. You can call one in Honor of Katia and she will hear her name on the telethon. Every donation is appreciated and mentioned from $10 and up. They mentioned the little donations called in add up to more than even the coorporate donations in the long run. That is amazing!!! This will continue until 8PM tonight.

We had an interview last night at 10:55PM, which went well and today at 4:45PM we will go back over to the hospital floor to do another interview and see the nurses:)

So, I will close here. I am going to try to get hold of Casie's Mom and find out some more information.

Thanks for checking in and for your prayers!

Love, Tracy











June 5, 2004 12:36 PM
Day 120

Good day:)

Well we are doing fine here and I have 2 bits of good news that have been resolved over the past few days and the last two weeks.

First, the diaper situation of leaky diapers was resolved!!! Huggies Overnites are the answer:) Thankyou Karen for getting those and letting us see that they work!! That was getting so annoying for both Katia and myself having to deal with so many leaks!!! Dry nites now!! (They should say that on the diaper packing)

Next, the blood pressure monitor has been resolved. Thankyou Pebbles and Mom!!
It is a ReliOn Wrist Monitor. We had tried another wrist monitor and numerous other types of monitors and nothing was working. Well this one works perfect and Katia loves that it doesn't hurt. It is small enough to be easy to take around with us and it reads perfectly compared with manual readings:) Seeing that it is necessary to take her pressure a few times each day, we needed something that we could "Rely On" and amazing that is the monitor's company name:) So, that has been resolved.

Another bit of good news (knock on wood) is that my back is feeling fine right now. I got some of the "pain patches" and put them on yesterday and they worked. I forget the name of them right now but I had tried an off-name brand and it didn't work so I put off trying another type of patch. Well yesterday, I was at the pharmacy and picked up a pack of these and they work!!! My back gets very messed up by my lifestyle right now of having to continuously pick up Katia but this helps to ease the pain. The headaches? Still there but not as bad. I am sure that has something to do with my neck and back. So, I feel better:)

Someone asked the other day, in an email, when Katia started walking again. Well Katia isn't walking yet. She can take a few steps with her walker (about 15 steps) and a few if I hold her hands (about the same) but other than that she has to hold onto something and it only last a very very short bit. Katia is still VERY weak. She can't turn herself over in bed, she can't sit herself up in bed, she can't go from a chair to standing yet, she is just very very weak. I assume this is going to last until she starts weaning off her steroids and is able to start building back some muscles. Her legs are so so skinny and nothing but skin and bones with bruises all over them. Her upper body isn't as weak looking but it is just as weak. She tires feeding herself or sitting up too long without support behind her. Why do I say all of this? Well, I am sure Katia will get back to herself over the next few months and we will all know just how far she has come. She has a LONG way to go but she is a very determined little 4 year old!!! She is very proud of herself when she does something, even something very small like feeding herself without any help, while sitting up.

She does walk a bit, a few times each day. She really wants to do things but she doesn't want to hurt so we have to work together and meet halfway on trying.

Well, today is the Telethon through tomorrow so we are going to be having an interview late tonight at 10:30 PM and tomorrow at 4:30 PM. So, if you are local, you can see those live on Channel 8, NBC.

Last night didn't go too smoothly here. First, we had a spill of medicine. I am not sure how much I lost of it but the bathroom looked like a cow exploded vanilla milk!! I have never had such a mess to clean up. Sharayah and I had to wipe down everything including all of Katia's medicine containers because it got everywhere. Well then Katia took her medicines, only to throw them all up right after so that meant remixing everything again while she was upset that she had to retake it. Well, when she threw up she also had a bowel movement which leaves me at a guess as to where to start cleaning up. This happened a few times and then the night finally calmed down. I did a few loads of laundry of towels, sheets, and cloths and finally caught up late last night.

Today has gone MUCH better!!! Right now she is sitting down on the floor (on her pads and pillows) watching TV with Sharayah and Tatiana. I can tell she doesn't feel good but doesn't want to say anything. She keeps swallowing and making noises like she wants to throw up but she is trying not to. Poor thing. She also is saying her back hurts and she has a headache but she doesn't want any medicine for it.

Please just pray that Katia's health will start to improve. It seems she hasn't been improving at all over the last few weeks. We were hoping she would start building strength and eating better but she isn't. We were hoping she would be weaning off some medicines, but she is on more. We were hoping things wouldn't be so touch and go with her but they are.

I know Katia wants to get better and everyone wants her to start feeling better:)

Well, I have babbled enough:)

I need to go put some clothes in the dryer:)

Love, Tracy












June 4, 2004 Afternoon
Day 119
WBC = 6.2

Well we got Katia's WBC count up with the help of a dose of GCSF to build her immune system to fight off these infections. Hopefully this count will hold through the weekend and maybe into next week. I am not sure of the exact number but it was 6. something:)

Katia is feeling okay today. Her sisters are here with her and they are painting as I type (I almost typed "as we speak" but same thing I guess).

This weekend is the All Children's Hospital Telethon so it will be busy for us. If you are able to see the telethon, locally, they will play Katia's story a few times showing some footage they have previously taped throughout her hospital stay through our time over here. Myron and I will go for 2 interviews. The first will be Saturday night, the 5th at 10:30 PM and the other on Sunday (which will be on 2SW) at 4:45 PM. Both, we will just be sharing some of Katia's story and talking about the hospital. I don't think I can say enough words of how great this hospital has been to us!!! The Katia Solomon Fund plans to remember this hospital each year by a donation at the Telethons. Hopefully next year, Katia can show up herself:) That would just be fantastic.

Two years ago we were in the hospital for the telethon, last year we were HOME and this year we are at the Ronald McDonald House (another place where we have been treated superbly!!!).


Well, I am updating on another computer since the kids are playing with eachother in the room. I try to stay out of their way and let them just be sisters when they can. Katia pretty much runs the roost in there so I know all is well:) I get to do laundry!!!

Have a safe and happy weekend. I will update throughout the weekend and let you know how the telethon is going and you can keep up with it also via their website above.

Love, Tracy





June 3, 2004 5:00 PM
Day 118
WBC 3.5

Good day:)

I am sorry this is so late. We TRIED to lay down and take a nap but that didn't work out too well. Katia is doing good with taking her new medicines and she seems to be feeling a bit better when she pees:) I am glad to see that.

Tomorrow starts the All Children's Hospital Telethon so pray it doesn't rain and the weekend telethon goes well.

I have to cut this short (since I am tying up the phone line) because there seems to be some confusion with Katia's medicines that are supposed to be delivered right now. I don't want you worried as to why I hadn't posted.

One problem with today's counts is her potassium is dropping even though she is getting more both by IV and by mouth. Not sure why? We have to go tomorrow just for her labs.

Thank you so much for checking in and I am so sorry this is getting cut short.

Love, Tracy





June 2, 2004 11:00 PM

Well Katia is soundly sleeping next to me and I am about to go to sleep but I wanted to do a quick update.

I remember last June, a sweet little boy that I had followed earned his angel wings at 17 months of age. He too had fought AML and just couldn't get and stay in remission. Angel Jalen, his Mom Jeanette and his grandma Terry have remained close to us. Terry has even been to visit Katia a few times before her transplant. I realized when we were walking to clinic on Tuesday that with June upon us, so was the year anniversary of Jalen's passing. For some reason, I had an immediate attachement to Jalen and his mother and my heart just broke the day he passed. I wanted so much for him and Katia to some day meet and play together as his mom and I had spoken of. I am sure he is a beautiful angel in his little white tux but as with everyone taken from this earth too soon, Jalen is very missed. Please go by their site tomorrow and offer his Mom and grandma your words of encouragment. Jeanette is now is school for Massage Therapy and hopes to work with Oncology Kids. They will be releasing balloons tomorrow in honor and memory of Jalen.

Katia had an "okay" day. She isn't feeling well but yet she doesn't want to say she isn't feeling well. Mind you she knows she has an eye appointment coming up and she just had to start taking two more medicines due to not feeling well so she is keeping things to herself right now. In the hospital I could tell when she hurt because she her heart rate was monitored. Her rate would increase with pain. Now I don't have any sure way of knowing.

I do know she is coughing a lot more and is just worn out and sick of her sinuses and cough. The sides of her face seem more swollen with sinuses than last week. I do believe her peeing is not hurting as much because she seems to be peeing more frequently instead of holding it in. That could also be due to the fact she is in 4 more hours of fluid at night and seems to be drinking more fluid in the day.

Her and Tatiana were playing and laughing tonight and that was just like a musical to all of our ears. Tatiana and Sharayah are so patient with Katia and will do whatever it takes to please her and make her happy:) Katia likes to know that her family is feeling well also and having fun.

I have had a headache, back ache and neck ache that just will not go away all through the weekend and still today. I have taken everything, everyone has rubbed my back, shoulders, neck and head, etc. I just can't seem to shake this off. I never get sick but this is just becoming a complete nuisance! I don't like to be a complainer but I will ask for your prayers. Katia knows this is bothering me and today she asked for something (I forget what). I was laying down next to her waiting for Myron and the girls to get here. She suddenly took back what she asked for so I wouldn't have to get up. She is so so so sweet:) Those eyes of her go all the way to her soul and she has a very sweet and loving soul.

Well, I am going to close and lay down for some sleep. We have an early day tomorrow and since Katia is asleep, well I should be too:)

Have a good evening and I will update after clinic.

Love, Tracy










June 2, 2004 3:30 PM
Day 118


Hello:)

We have had a decent day so far. Katia and I went and got her new medicine to start for the C-Difficile in her stool. She is not happy to have another medicine and this is 3 times a day...

Myron was just here and he is headed to go pick up the girls to bring them back so Katia is very much looking forward to playing Hungry Hippo with them:) She knows she is going to win!

I am eager for our clinic appointment tomorrow so we can see how her weight is. She has been eating decently today but it is hard to say whether she is eating an amount enough to gain weight. She is tired of being bugged about eating so I have dropped the subject with her. I don't want to stress her out anymore than necessary.

I am waiting to call her doctor to see if anything else has come back from any labs and let her know how Katia is doing today. We aren't getting any walking in so far today because she says her legs are hurting too bad. She has a lot of busted blood vessels in her legs from the walking she does do and they do look like they must hurt.


Please just pray for Katia that her weight will not drop and that she will start improving in her sinuses and these infections. I am also very eager to see what her immune counts are tomorrow and the rest of her labs.

Thank you for checking in:)

Love, Tracy








June 1, 2004 10:00 PM

Good evening:)

Well, Katia is sitting here and says to say hello. She is watching the screen and watching me type. So, "Hello from Katia."

We have had a decent evening although she wasn't happy about having to start another medicine today. She was mad when we walked back to pharmacy to pick it up and she swore she felt fine and didn't need medicine BUT tonight she says that her pee hurts but the medicine is to make it better. At least she understands medicine is supposed to make you feel better, in the long run. I have also found out that her stool samples also shows that she has C-Difficile again which is something we have fought on and off for a long time so she will have another antibiotic to get tomorrow (she does not like the taste of this one!) I am hoping she is not able to read this.

She talks quite a bit to me and she is quite smart for her age, in so many ways. She is easy, for me, to carry on a conversation with - at her level of course. I enjoy spending time with Katia and she makes me laugh and feel good. We are watching the Ms. Universe Pageant right now on a very static-filled TV trying to pick it up via antenna at RMH.

Katia likes to talk about what she is going to do when she is big. She wants to wear pretty dresses and walk pretty. That is because the girls were modeling evening gowns. Of course she wants LONG LONG hair. She wants to drive a Barbie Car and she wants to cook in a real kitchen. Katia has said the thing about cooking in a real kitchen and the fact she wants to be a doctor for little children for quite sometime so I do believe her future holds one of those. Maybe she will be a Pediatrics Doctor and a gourmet chef! We never know.

This morning when we got back from clinic, I had a cup of coffee and I always tease her and say, "You want some?" She said, no (like she always does) and then she said she will drink coffee when she can be a doctor. Makes sense really:) I wonder what goes on in that mind of hers. I am sure a LOT more than we realize.

I was letting her try to walk around in here tonight and I realize, Katia is going to need quite sometime to fully recover from transplant. She is SO weak and so unstable. She really cannot stand in one place without holding on and if she tries to walk without holding onto anything, she falls. I feel so bad for her but then I see she is so determined. I get scared that she will break something, like her leg or arm if she falls. Her legs are so so small and have no muscle left in them. Her back shows every rib and her arms just seem longer now because they are so skinny. Her face and belly are the only things filled out on her.

I remember before transplant thinking that Katia wouldn't go through this because she just went through months without eating and always maintained some sort of strength and never seemed to look to skinny. I was wrong. It is very hard to watch her struggle to just sit up or put her food to her mouth. It is hard to see this 4-year old that should be running around, struggle to just take a step forward and in doing so, cause herself pain, but keep trying. Katia really amazes me. People ask how I am able to go from day to day? How can I not when I see her put up such a fight and still be able to smile? I never pictured Katia, myself, or my family in this situation but now that we are here, I am determined to get through this fight for Katia's life with the "best foot forward" and make a difference. Katia's team of doctors and nurses have been amazing. This hospital and its staff have just given us so much of their love and time. The staff and volunteers at the Ronald McDonald House treat us like family and take such good care of us! Just so many people have come forward to help us fight and live at the same time.


Myron and I talk all the time about how this webpage and the friends we have met through this page have just helped give us so much strength and courage when we have needed it most. It just shows how caring, compassionate and eager to help people really are.

Through the media we have seen the people of Tampa Bay and far away show us such an eagerness to come forward and help and register as marrow donors and do whatever they can do to help in the fight against cancer. So many people have been touched by Katia's story and have stepped forward to help everyone fighting cancer and other blood related disorders that can be treated by bone marrow transplants. So many people have now become regular blood and platelet donors which saves lives each and everyday!

Myron has met so many people that have so willingly just gone and registered without so much as a question but just an eagerness to do whatever they can do to help. I remember one of the bone marrow drives was held at a shop alongside a very busy road. They had people pulling in, right off the road, getting out of their cars and going inside to be tested and register for the National Marrow Donor Registry. Amazing!!!

I have received well over 500 emails from people who either are expectant mothers, or the family member of an expectant mother, wanting to know how to donate a baby's umbilical cord. I have had so many people email ideas on how to deal with complications we have faced from leaky diapers, urine sample collecting, getting Katia to eat, home remedies for other problems and even suggestions on how to deal with Sharayah and Tatiana through their problems. So many people have shown, in so many ways, how much they care and are eager to help.

When we had the urgent need to try to help Angel Yasmin's family deal with trying to get back her remains to Mexico for her burial, we had people step forward to help the Katia Solomon Fund be able to help the family during a time that families are just unable to deal with financial problems. Yasmin's family still stays in touch with Myron checking on how Katia is doing. Yasmin really really cared for Katia and was always so concerned if Katia felt bad. She was just so upset when she found out that Katia had relapsed and then shortly after, she found out she had relapsed. I wish more people could have known Yasmin.

Through all of these hospital stays, we have met so many wonderful children and their families and have realized just how many people are affected by cancer. I mean when someone is diagnosed, there is just such a web of other people involved from parents, to siblings, grandparents, cousins, friends, schoolmates and teachers, community and so on. Most of the people we have met didn't know HOW they could help but when we tell them how, they are more than willing to help. Our family has made it our mission to help for a long long long time and we are determined to continue to bring more and more people to the registry, to help more individuals and families handle a bill to ease the burden of finances, to offer a listening ear when needed, to help raise awareness to research, to educate people in anyway we can on the simplicity and importance of regular blood and platelet donation, etc.

At the same time, we want to raise peoples' awareness on having your loved ones well taken care of when they are not feeling well and having unexplained symptoms. Have blood test done ( a simple CBC panel which is a "complete blood count" tells a lot about a person's health). Never hesitate to ask a doctor questions and voice your concerns. Nobody knows you better than yourself or your child better than you.

Okay, I have babbled on enough. Actually since Katia is watching me type, she has a lot of patience for me updating. Most of the time she is trying to get my attention and I am in a rush but right now she is just patiently watching me type. Maybe she knows the message I am typing:) She may be small but she is on top of things more than I know:)

Well, I will close for now so you don't need to see your eye doctor tomorrow!


Love, Tracy










June 1, 2004 12:05 PM
Day 117
WBC 3.5


Good day:)

Well we are back from clinic. Katia had some concerning bruising but it seems her platelets are 30 and the limit is 20, so we are good to go. Normal is 150-450.

The urine is showing an infection so she will start on antibiotics for that today. Hopefully she will feel better real soon. I am not sure about the stool specimen yet since it just went in late yesterday afternoon. That can take a few days to show what/if there is anything there.

The stars Katia is seeing in her eyes? Well she will see her eye doctor this week for that. Not yet sure when but when she heard she had to see the eye doctor, (she hates the eye doctors because she doesn't like eye drops and they usually dilate her eyes to get a good look) her eyes were all of the sudden CURED. She definitely listens to EVERYTHING we are saying when the doctor and I talk. So, she will see him sometime this week. BUT now she won't tell me if she is seeing stars because she is afraid to have eyedrops. That is now a closed subject to her and I hate when she does that because I rely on her telling me when something isn't right.

Let's see what else? Oh yes, she has lost more weight. Remember she was 14.2kg and then dropped to 13.6kg. That was concerning. Then she got down to 13.2kg I think, up to 13.3kg and now she is back to 13.0kg. So if it goes below 13.0kg, she will be back on IV nutrition at night. Katia weighs about 29 pounds and is 36" tall so she is pretty low on her growth chart BUT she has a HUGE heart! Her cough is worsened so she doesn't want to eat... it is just an ongoing issue with her. We are also turning back up her fluids each night, from 6 hours to 10 hours because her potassium and magnesium is low again and also because of the urinary infection, we want to make sure she is getting enough fluid to flush her out.

Although it is Tuesday, it FEELS like Monday because of all the things that we are having to check and change today.

Well, Katia isn't too happy right now and I want to update her pictures (IT IS ABOUT TIME, HUH?) before she gets too mad at me. I also need to go in a bit and pick up her new medicines for the urine infection. It is a bacterial infection that she has had before (back in December).

So, let me fix up the pictures and get them on here for you:)


Love, Tracy










May 31, 2004 8:00 PM

Well I have been signed off a few times while trying to update so let me get this done quickly:)

We had a nice afternoon. The girls were all playing and laughing and it is nice to hear them all interacting with eachother. That is the best medicine for Katia.

She isn't feeling too well right now and has us a little concerned. She keeps kinda "zoning out" and opening her eyes wide. Well now she says she is seeing stars but she feels okay. I think her platelets are low (due to some bruising on her buttocks) so I am about to call her doctor. I just hope she will say we can lay low tonight and come into clinic first thing in the morning as planned anyway.

I don't know how Katia would handle an admit right now.

This coming weekend is the All Children's Hospital Telethon and Katia is one of the featured children so we will be doing two interviews and they will show footage of her departure after 149 days in the hospital. I am looking forward to seeing how much the Telethon can raise. All Children's Hospital here is a great hospital and has just been a fantastic part of Katia's successufl care!!! I am glad she is part of the telethon this year since they have been such a big part of our life this last year and us such a big part of their's:)

Well, I need to call her doctor and Katia wants something to eat so I better close this out:)

Love, Tracy










May 31, 2004 2:31 PM
Day 116

Hello:)

Well we have had a nice family weekend here at RMH. Katia has had fun with her sisters and they enjoy spending time with her as well:)

I know I said I would get some pictures up and I promise, I will. I need to work on that. I have just been energyless lately and I just can't seem to catch up on things. It will be nice when we get to go home and spread out and finally put things away. I have been living out of suitcases and storage boxes for the last 9 months and I am ready to finally be done with that.

I finally got both the pee and poopy specimens so hopefully we get some answers from that and see what her pains are coming from. I THINK she has held on to her platelets over the long weekend and I am eager to see if I am right when we do labs tomorrow morning. There are a few bruises around on her but nothing much.

Katia has walked a few times today which is twice as much as normal so I am so proud of her!!!

Her eating? Well, not the greatest so I am praying she isn't losing weight.

Not a whole lot seems to change here. Just hurry up and wait:)

Love, Tracy










May 30, 2004 12:27PM
Day 115


Long long night....
Yeh it has been one of those nights again. The problem is urine. We are trying to get a sample (which is proving to be impossible so far). Her urine is really bothering her. Then she had a very painful bowel movement in the night too so now I need to collect a bowel sample. I know there is something wrong (probably with both of them) so we need to get them to the lab and see what is wrong. I am sure it is something simple but without an answer, it is a problem to Katia and a concern to me.

So, that is what has been going on here. Katia is pretty put out with trying to get the sample accomplished also. We have tried going on the potty with a "hat" to catch the sample in but her and the potty just don't work out. I don't even want to think about the "potty training" again yet.

Okay enough pee and poop talk. I just walked over to the hospital (to get some supplies) and it is so quiet on the floor. There are hardly any patients up there right now (a lot of people will get passes or try to avoid being there during these long holiday weekends.) Some people get very stressed or a horrible feeling going back onto the floor but I have to say, I don't. I wouldn't want Katia to be readmitted right now, don't get me wrong. But, we are very very familiar with 2SW, the nurses, doctors, routines, etc. We forget what home feels like. Today is 278 days since Katia has seen her home. That seems less days than it feels like. I remember walking her out to get in the car - never knowing we would be gone this long. It has been over nine months! I don't know what feels longer, this or a pregnancy.

I am really not trying to complain, more thinking out loud. I have learned that complaining gets you nowhere and there are a lot of people with far more problems than what we are facing. I know some of them. I thank God for all he has seen us through and continues to see us through. I am thankful that Katia can rely on God. She prays when she feels bad or is really trying to do something. She was praying for her pee pee to come out and go in the potty this morning. She really does know what prayer is. In some ways she is way beyond her 4 years of age. Myron and I were talking about that the other day. In so many ways, Katia's aging stopped when she was diangosed. She has so many ways about her that are age appropriate for a 2 1/2 year old. I am sure when she is feeling well, she will move forward and close that age gap pretty quickly but for now, it is very hard to look at her as the 4 year that she is. I tell her she will ALWAYS be MY baby no matter how old she gets.

Do we spoil her? Well of course we do but in most ways, Katia isn't allowed to BE spoiled and she doesn't usually try to get away with things. Katia is a very sweet and loving baby who shows a lot of concern and compassion for her family and those around her. She just does things that make me want to squeeze the dickens out of her sometimes. She is just so dang loving and concerned about how I feel at times and it just tears my heart out that she can't be her loving self without having to go through all of this. I know that Katia's fight with cancer is giving her so much insight into life that we don't even know she sees.

Well, I have babbled long enough:) I do that a lot lately! Love, Tracy












May 29, 2004 7:00 PM
Day 114
WBC 3.9

Hello:)

As you can guess, I am a little sidetracked today.

Our day started off getting labs drawn and both the hemoglobin and white blood cells came up some but Katia's platelets dropped off. Hopefully these counts will work themselves out soon but her next appointment is on Tuesday morning. I am interested to see what her numbers are then. Her cyclosporin (antirejection) numbers are still low so we raised the dose for that medicine. Thank you for your prayers concerning Katia's counts:)

Sharayah and Tatiana have been around here all day so we have been just spending some time around here with Katia. We did go for a walk but that was HOT! Right now they are showing Katia the dance in "Cat and the Hat" and Katia is unsure how she feels about all of that:)

Well, let me figure out the dinner plans for tonight. You probably can't guess who is concerned about what is for dinner:) KATIA

Love, Tracy










May 28, 2004 9:12 PM

Good evening:)

While I type, Katia is of course eating:) I am still very happy to see that after her months and months of not eating anything. (She is waving at me right now!)

She says to say hello to everyone in the computer... I can imagine one day, when we are home, she will be walking by my computer and talking to the "people inside". At least I will know why and not have to worry. She already talks to herself but so does her mother:)

Okay enough of that. Tomorrow we go in first thing in the morning to run her labs. I should know the results about an hour or so after we have them drawn. I am just praying they straighten out. Later this afternoon, her doctor call and another level was low. It is a level of her cyclosporin (anti-rejection drug) so we are going to check that tomorrow as well. That is not critical though, we may just have to change the dose if needed.

I NEED to get some pictures tomorrow so you can see how her hair is growing:) It is growing slowly and she knows it. Her hand is on her head a lot, feeling her hair. She says, "It is coming back." Right now she is staring at me and rubbing my brown shirt (the shirt she tags along with her everywhere) in between her fingers. Usually that means something is stressing her and that gives her comfort. Katia has certainly learned to put up with a lot and usually only complains about things that really deserve being complained about or when she has just had enough.

I am in the process of reading Lance Armstrong's book "It's Not About the Bike." It is a really good book and I appreciate reading how others learn to face life's many situations. It is full of good lessons. One of the sayings in the book I really like is, "Make obstacles opportunities and turn negatives into postives." Very good advice. Some days I get so concerned and bothered by little things (or things that I really shouldn't let bother me) and I need to write a quote like that on the back of my hand so I keep seeing it over and over.

Well, Ms. Katia wants me to go get her something to eat (mind you she is eating a burito as she ask for something else) so I better put on my "Room Service Hat" and get to the kitchen:)


Love, Tracy











May 28, 2004 1:22 PM
Day 113
WBC 2.9

Well we are back from clinic. The appointment went fine but her counts are concerning to me... Her WBC dropped from 4.4 to 2.9. Her hemoglobin dropped from 9.1 to 7.8.

We did a recount and the recount just made lower numbers so we are going to the hospital lab tomorrow to check them and see what we will do. If the hemoglobin stays the same or goes down, she will need a transfusion. Just pray the labs are off for some reason and the numbers tomorrow are better.

I really don't have too long to be on here so I may sound choppy. We are also trying to catch a urine sample right now because her pee is burning her so I need to get it and get it back over to the clinic so we can get it in the lab before this long weekend... Things always happen on Fridays or the weekends? Do you notice that?

Other than that, she had her Pentamindine Transfusion treatment today and that went better than the last one. She didn't seem to get nauseated at all. She gets Zofran and Benedryl before but last time, she seemed to still get sick. This time was much much better:)

Well, Ms. Katia is asleep right now so I am going to do some laundry and such and get caught up around here. Pray the weekend goes without any complications and her labs improve by tomorrow:)

Also, I know the Cameron B. link above isn't working so if someone has his website, email me and I will get the link fixed when I get back on here.

Love, Tracy










May 27, 2004 1:33 PM
Day 112

Good day! Katia seems to be doing better today with her sinuses and her demeanor:) I am so glad to see this. I stayed up until about 2:45 AM watching her sleep and she is just so precious and really deserves to feel better and live a long healthy life. I really believe Katia has a very important mission in this life and she is going to continue making many changes in the lives of others and in the fight against Leukemia.

I want to thank you for your prayers on her behalf and the behalf of our family. Your prayers reach out and touch our lives and they do help. I really hope you know how much they help. Your willingness to follow Katia's daily progress, pray for our concerns and needs, and to do what you can to help fight Leukemia is changing the world. Big things can happen when people come together to make a difference.

Someone was talking to me the other day about the Ronald McDonald House and the fact that every McDonald's Restaraunt has a little place you can drop your change. If everyone that went to McDonalds dropped just a little bit of change in the jar, imagine how many families would be helped. I look around this house and their saying is so so true. This is definitely a "House Built of Love". Even down to the coffee maker, it was provided out of love.

We are wanting to do the same sort of thing with the Katia Solomon Fund. Right now, our family is in need of the assistance but through our experience and a first-hand look at the needs we face, it enables us to know the direct needs of other families in our situation and we are determined to help. Even though we have been in this ourselves right now, we have had the opportunity a few times to reach out and help someone else and that just feels good to us. We are helping a family (in a small way) to take care of something that is a big stress to them, at the time. We want to be there to help with Electric Bills or a car payment, help towards a mortgage or even the money to stay at RMH during their families time needing to be close by the hospital. We want to be able to help them with a meal in the hospital or a phone bill, phone cards, or just something. We know first hand how the little things (such as monthly bills) that we are so used to HAVING to deal with already, just become so much more stressful when your life is just completely out of your own control. A parent's mind is already so full of information and concerns that it seems the least little extra "straw" is there to break the "camel's back" if you know what I mean.

One thing Myron and I always talk about is the fact that everyone has their own set of problems. Some peoples' may seem bigger or more "life altering" than others but to THAT person, their problems are the things that need to be resolved. We have learned to respect that through this. I used to tell my dad that some of his problems, I considered "Cookie Problems". I mean they weren't urgent to me or something that was life or death BUT since then, I see they are the problems that keep him up at night and really do concern him. Everyone has those types of problems. BUT when we have problems that seem like the end of the world, for the most part, there is someone else out there whose life is in a far worse state and they would be happy to exchange their problems for our own. When I complain about something, I can always think of someone else who I know is having a harder time. I REALLY do TRY to let that keep me focused on what is truly important in life, LIFE.

Although our montly obligations DO have to be taken care of ( life doesn't seem to ever give a break in that aspect) we have to focus on our families, our hearts, our spirits and truly making a difference WITH our life not just IN our life.

Each of us can help in some way, shape or form. I think the best feeling in life is finding that way we can help. It gives you a sense of belonging and contributing.

I believe that things do happen for a reason, not always a reason we know about, but for a reason. It may not seem to directly related, but in some way, we are meant to make a difference.

I am sorry to have rambled on but I felt the need to ramble today:) I was up late and when I am awake, my mind is thinking.

Well, Katia is eyeballing me to go get her a tortilla with cheese! Maybe she will own a grocery store later in life.

God bless each of you and thank you for thinking of us, praying for us and keeping up with Katia and our family:) Thank you for sharing your lives with us.

Love, Tracy

PS I just clicked over to the guestbook and there was an entry from an anonymous person about Angel Kelly's site. I am not really sure about the whole situation there but I do always keep Katia's page and guestbook away from some of the negative situations that have sadly taken place on Caringbridge. When I post a prayer request, I do so to help families and patients. I am really not sure of what has become of Kelly's site but please let's keep Katia's guestbook to entries that are not negative to other pages. If there was something not on the up and up going on with Kelly's site then I think people just need to be prayed for. But again, I am not sure either way as to what happened to the site. If you have anything you would like to say about that subject, I ask that you would email me and not put postings in the guestbook about this. I have the guestbook printed and saved for Katia to have later in life:) Thank you.










May 26, 2004 12:08 AM


Well, I know I am late here but I just wanted to update on today. Our day has just kind of gone along. We did watch The American Idol Finale together (yeah Fantasia) and that was nice. Katia hasn't felt too good most of the day. She has had a headache and she has just not seemed like herself. I got her up for a while to walk and she wasn't at all agreeable with me.

She did have a few laughs this afternoon with me which was nice. We were playing around with some toys on the bed and a little bowl and she thought it was funny when I flipped the bowl over so we did it a few times and each time brought a bigger laugh.

Tonight, when Myron and the girls got here, I thought Katia would be happy but she basically was just pretty blah and we kept asking her if she felt okay. She says yes but she says her head hurts. When she pees, she says it burns her bottom so she tries to hold her pee and then gets really upset when she has to finally go. I plan to just take her into clinic tomorrow to see Dr. Petrovic. I am going to call over there and see when is a good time. Katia was a little pale to me and clammy feeling to Myron. She hasn't felt clammy for a while and she was sweating some which she hasn't done for a while now.

Just pray that all is well and this is just sinus related (that is my feeling right now). I am glad she just had the MRI of her head and recently the chest scans and sinus scans. That gives me a little confidence there that her lungs and head are fine. I am just concerned that her sinus drainage is thick and may be causing her not to be able to comfortably breathe. I am just not too sure.

So, pray she has a good evening and gets some rest. She is all plugged in and medicated for the night. I gave her some of her pain meds for her head but she says it still hurts. She can usually go ahead and fall asleep anyway. I hate that she has to deal with and put up with feeling bad. I know she just wants to feel good and be happy:) But, she still smiles at me and that is just great!!!! It makes my heart happy and she knows it makes me happy:)

I love that little baby!!!

Love, Tracy

PS Please see the updated Prayer Request on Lakota and Casie above.









May 26, 2004 12:25 PM
Day 111

Good day:)

Our night did improve but Katia is still coughing quite a bit so I have a call into her doctor and she is trying to figure out something else. We have really tried so many things and this coughing and gagging doesn't want to give Katia a break. The big problem from this is she doesn't want to eat and she loses very necessary weight. I am confident, in due time, this will finally be resolved. Katia is just so sick of coughing and she just can't seem to stop.

Last night ended up smoothing out a few hours after the update. Maybe around 2:00 AM I stopped checking her temperature every 15 minutes. I did have to give her blood pressure medicine to bring down her pressure which had raised and, that too, came down finally.

We don't have to go to clinic today since we were just there, unplanned, yesterday so we have a day off and hopefully tomorrow will be a free day also:) That would be super!!! Katia and I both need the free time.

Well, I got on here to update and then I got to checking on some other websites, updating prayer request and adding some names to the pulldown menus so my battery is about to lose power.

Thank you so very much for your prayers over the last few days.

Here are a few prayer request (not linked).

Please pray for Casie as she is supposed to be admitted tomorrow to start the countdown days to her transplant.(Link is above in the request and pulldown menus)

Please pray for our friend Donovan who had transplant in January. He is here at RMH with us and is having some complications. He may have to be readmitted (he doesn't have a website).

Please pray for our family's continued strength and finances. I know we have been going through this for so long and I REALLY do see the light at the end of the tunnel. We are almost there but we could really use the prayers. I have kept up this website to show the "full circle" of what a child and their family goes through as they fight this battle so I ask that you pray for us, as a family. Pray that we will soon all be under one roof, Myron will soon be back to work, Katia will soon be more and more stable each day, financial obligations will be met, and that our family can continue to make a difference in our community and throughout for other families in our same situation.

Please pray for the safety of all of our children during the summer. I always worry about kids during the summer and I pray for accidents to be prevented and for kids to stay safe and happy throughout the summer breaks.

As always, please pray for eachother. I thank God for knowing each of you and bringing you into our lives.

God bless. Love, Tracy









MAY 25, 2004 MINI-UPDATE AT 9:35 PM

I just wanted to get on here real quick and ask you to pray for Katia. She started feeling really crappy and then she just threw up (mainly just mucus and what she had just eaten) but still, I worry of course. I don't want her to get sick and have to return to the hospital. Am I really really worried? No. I asked her if she needs me to call her doctor or take her to the hospital and she says no. Why would I ask her, a 4 year old? Well, usually Katia knows if she needs help or to see a doctor. She can tell you if she is getting hot or if she has a pain that isn't normal (yes, some pains are normal for her) but I will just keep my eye on her and keep up with her temperature and blood pressure. We plan to lay low and have a quiet day tomorrow and I am sure she really needs to take it easy. Today and yesterday were both busy days.

So, just please pray for her that she will sleep well and not get any more sick. Thank you so much:)

Love, Tracy










May 25, 2004 8:13 PM

GOOD NEWS:)

The MRI looks good:)

There is some "white matter" (if I understood that correctly) but they feel that is due to radiation. There is no evidence of leukemia (which of course was my worry). Katia's brain and spinal fluid is what worries me more than her marrow because that has been her main problem, twice. I feel very good about the way her doctor stays behind checking on Katia and letting me voice my concerns. As I stated once before, our plan is to wait until Katia's platelets are stable (on their own) and begin spinal chemo again. We cannot afford to have Katia relapse in her spinal fluid or brain because she has had her maxium lifetime of radiation. I am not trying to damper a good set of reports. Quite the opposite. I am actually draining off my worry that I was feeling by explaining my worry:) It actually makes me feel better when people understand me (and I know that is not always easy, right?)

Okay, so we are actually watching American Idol right now. Katia is munching on a miniature Hamburger. She loves those microwavable hamburgers! She loves to eat! I am so glad for that because I feel that has gotten Katia through so much. That is why it bothered us so bad from September to March when she had stopped eating completely. That was not Katia. Now she ask for Beenie Weenies, Macaroni and Cheese with Weenies, Scrambled eggs with weenies (you notice the weenies are frequently ordered), mini-hamburgers, pancakes with syrup, oatmeal, etc. She has a healthy appetite! She is big about asking, "Do you have a lot of this when I am done?" She wants a large amount of backup groceries which is so funny. If she eats chips, she gets upset when she is halfway done because there isn't "alot" in the bag???? I tell her they are in her belly but that doesn't help. I have to pull out another bag so she sees there is more there. Maybe that is age-typical.

Sharayah and Tatiana finish school on Thursday which I am looking forward to. Katia and I came to the hospital just about 10 days after school started and now school is ending and we aren't home yet. I will be glad for this school year to finish because it has been (how can I word this?) CHALLENGING. Today is 273 days away from home and it has been very evident when it comes to school mainly. I will be so glad to get back home. My kids ALL need me, tremendously! That is all I can say.

So, that is about all going on right now I think. Please continue your prayers for our family. Thank you for your prayers for this MRI (you see how prayer works!) When you pray, thank God for all he has done with Katia and through Katia. Thank God for the wonderful smile Katia shares with us more and more each day. Thank God for bringing so many wonderful people into our life. Thank God for giving us the power of prayer:)

Love, Tracy


PS THIS IS THE FINAL WEEK OF THE CREATIVE MEMORIES FUNDRAISER FOR THE KATIA SOLOMON FUND
PLEASE PLACE YOUR ORDERS WITH JENNIFER BY JUNE 1ST. SEE THE AREA ABOVE THE JOURNAL ENTRIES TO LEARN MORE. JENNIFER IS OFFERING A LOT OF SAVINGS AND BONUSES FOR YOUR ORDERS AND 100 PERCENT OF THE PROFITS IS COMING DIRECTLY TO THE KATIA SOLOMON FUND. THANK YOU FOR YOUR ORDERS.

On a personal note, Katia has a Creative Memories Scrapbook that was put together especially for her (with lots of love and patience). She LOVES that scrapbook and we show it to all the nurses and doctors and people we run into. Scrapbooking is such a cool way of putting together your memories and Jennifer is offering an awesome chance to get a lot of supplies together to keep you scrapbooking for a long time.













May 25, 2004 9:30 AM
Day 110
WBC 4.4


Good morning:)
We are actually already over at the hospital. They called us in around 8:00 AM this morning for Katia to get platelets so she is ready for MRI.

I am just updating quickly in the Family Waiting room so you can pray that today goes well all the way around and we get back over to RMH so Katia can eat (she is NPO -nothing by mouth).

I came over here to pre-register for everything so I don't need to take her into any waiting areas, risking her to get sick.

I will be back later today to let you know how things go.

I am so sorry I haven't been behind this updating as much. Things have just been so busy and hectic lately (I am sure you understand).

Also, if you are in the Bay Area, you can watch Bay News 9 on Friday (all day) for the "On the Town" with Jen Halloway. She will have an interview with Katia that they came out and filmed yesterday. It will play all day at 53 minutes past the hour.

Pray pray pray:)

Love, Tracy





*******


May 24, 2004 11:00 AM
Day 109
WBC 3.8


Good morning:)

We are back from clinic and I will get to that in a bit.

First, we had a nice weekend, tiring, but nice. Today's alarm clock beeped way before I was ready. Katia nor I got much sleep over the last few nights until about 5:30 this morning and then, "BEEP BEEP BEEP". Neither one of us were ready for that. Katia can't sleep because her mind is on figuring out her menu:) I can't sleep because I am just stressed over things that I can't control. I am not used to being so out of control of what goes on in my life. I know things will never be "normal" again, I have accepted that. I just want things to somehow smooth out. Every month is the same thing when it gets close to the beginning of the month. If you know what I mean. Sometimes we are just to the point that, "We can't worry about our monthly obligations, we have to concentrate on getting Katia better and getting her home." That should be able to be our sole priority right now. But, we can't say that. When things seem to be the most stressful, it seems more stress is thrown at you. I know that God always seems to bring us through and I have faith that He always will. I have to say thank you to so many friends that have helped us out in so many ways and how much comfort we have in the fact that we have you as our friends. It is just such a feeling, that even I can't describe, to come here to this page and see how many people have visited and read the messages. How would I have done this without sharing Katia's story and getting all the prayers and support? How do other people go through this and cope without that? Please pray for our family's finances right now.

Why do I ask you to pray? Well, let me share with you now the power of prayer. Katia's weight went from 13.2 kg to 13.6 kg over the weekend:) You see what your prayers do. I was worried it would go down further but she really did do well with her eating and drinking (I am so proud of her) and it showed on the scale!! She needs to gain some more still but we are headed in the right direction.

Her appointment went well today. Katia's platelets are 23 which is above her limit of 20 so no transfusion was needed. Her hemoglobin has dropped some over the past few visits, not sure why? But, it is also above the limit of needing a transfusion. It is at 9.1 and the limit is 8.0.

The results are back from the marrow!! All is clear and all is donor!!! Those little cells from that donated cord blood is working inside of Katia's little body and working hard:) Again, thank you to the person that donated Katia's and all of you who have donated your child's cord, registered as a marrow donor or even plan to do so in the near future. You can be the link to saving someone's life, like Katia.

One concern the doctor has is from the sinus scans. It seems the radiologist is seeing some fluid around an area of Katia's brain. So, we are going to do an MRI to get a closer look. Pray this is nothing significant and pray that we can get this MRI done. Remember the last one was cancelled due to Katia's cough (which she still has) and her sinus drainage. They can't sedate her if she is at risk of choking. The last time we went to MRI, Katia was coughing and gagging the whole way there.

So, that is what is going on in the life of the Solomons right now.

You know me, I always try to keep this positive and informative but I also try to keep it honest to let you into our lives as we go through all of this. So, please keep upcoming tests, Katia's weight and our family's financial needs in your prayers. AND, Thankyou for your prayers!

Love, Tracy

PS The auction is ending in around 1:30 PM today if you haven't gotten by there. Remember the funds from that go directly into the Katia Solomon Fund.










May 23, 2004 3:16 PM
Day 108


I am sorry this is so so late...


Well, as you can see, I have been pretty occupied with the family around but that is a good good thing:)

Katia is having a lot of fun.

We are about to go outside for a little bit. Since she has lost weight, we are keeping up with what she is eating and you would think she is gaining 5 pounds a day... We will see.

Katia seems to be improving in the sinus area. She isn't coughing as much and she seems a little more peppy:)

We will be back to our regular routine tomorrow (boo hoo) so you will hear more from me then. We have clinic first thing in the morning and I will let you know how that goes. Pray she has gained some weight:)

Love, Tracy






May 22, 2004 12:55 PM

Good day:)

I am so sorry I didn't get to this journal last night. It has been a long time since I had all 3 of my girls for the whole night. Sharayah and Tatiana had a room here so we spent a huge part of yesterday out on the deck and had a pretty late night.

Katia didn't have a good night. She has a new sore on her bottom which put her in a lot of pain for a few hours last night and finally, after talking to Dr. Petrovic, we came up with a solution that worked. The sore is still there but, for now, it isn't bothering her. She gets these on and off but they really are not something you would ever get used to. They hurt when she sits, moves, pees, anything! They cause her to just scream and scream and scream. Hopefully this stays uninfected.

Let's see what else. We have been working on a very neat project with an Published /Publisher friend of mine, a book. Actually he was friends with my aunt who is also a published author. This man is writing a book about Katia and her fight, "THE LADYBUG AND THE DRAGON". It seems to be moving along an turning out very well and should be done by summer's end. I will put the information here then. Of course, the LADYBUG is Katia and the DRAGON is Leukemia. The book is fiction/non-fiction. I am very excited to get this project done. He has come down here to do interviews with all of us to close out the book.

What else?

I think that is about it. We had a small "Frasier Evening" last night with myself, Katia, Sharayah and Tatiana and of course, we enjoyed that (even though we were all wiped out).

So, I am going to close this out. Myron and his friend, Rene are on their way here and I look forward to a "Family Afternoon!"

Love, Tracy










May 21, 2004 10:45 AM
Day 106
WBC 4.7
PLT 46:)


Good morning:)

We are back from clinic and Katia is happily eating Beenie Weenies:) She loves those things and I just can't keep enough around for her. Those and Spagetti O's.

Our visit went well today. Her platelets are lower than I was hoping but she didn't need a transfusion so that was good to her. She had 6 units of platelets on Wednesday and I was hoping they would be in the 80's at least but they were 46.

Other than platelets, I didn't ask and I completely forgot to get the lab sheet. NO COFFEE YET.

The bad thing is she has lost 2 pounds since Monday so she has promised to eat more all weekend and see how things look on this coming Monday. If she doesn't improve then she will have to be plugged into TPN (IV nutrition) through the nights because she can't afford to lose too much weight. Her cough is really bugging her and she is always afraid to throw up (which the cough seems to cause to happen) so she is hungry but doesn't eat much. She started on Zyrtec today so I hope that will help her sinuses to improve quickly.

The scans taken yesterday seem to show some improvement in part of her sinuses but none in other parts. I think they are draining but then they just keep filling up and they are swollen also. At least the coloring of the drainage is clear. She looks very pretty today though:) Her eyes aren't puffy and her cheeks are pink and she just looks good and pretty:) I think if we can get these sinuses cleared up, Katia will improve hour by hour!

I haven't had a chance to read the guestbook or even check on other pages yet today. It has been a busy busy morning and will probably continue that way through the weekend. I will try to get back online and spend an hour or so catching up though.

The girls are coming her to spend the night. They are getting a room in the same house we are in so that will make Katia's weekend awesome!! Myron will spend tomorrow night here. He has a friend, Rene, coming in from Honduras today and plans to spend the day with him. He is a doctor friend of ours from the Island. We haven't seen him for a few years! He will have to hang around with Myron today as Myron has quite a bit to get done. Myron has had to take over a lot since I am never home. Not only does he have to take care of Sharayah and Tatiana but he also has all the errands to do and all the meetings with the Katia Solomon Fund. Myron is very determined to get this Katia Solomon Fund up and going so that we can reach out to other families and help them in some of the ways we are needing help right now. We have been right in the middle of it all and our minds are just full of things to do. At the same time, a lot of education needs to get out about the importance of registering as a marrow donor and also about parents donating the umbiblical cords. This is what is helping to save Katia's life and we want as EVERY patient to have that same chance. We still have a long road ahead of us as many post-transplant patients do, but at least we have the hope of moving forward. For a while we didn't know if we would have the opportunity for transplant. One of these days, Katia is going to be telling people about her fight to beat Cancer and how a donated cord saved her life. I like to look forward to that day.

Well, school is almost out here. I think it ends this coming Thursday. That will be very nice. It is hard sending the girls to school everyday and when we do finally go home, they will be able to spend ALL DAY with Katia!!! Katia is very happy to have them around. They take good care of Katia and do whatever it takes to make her happy and smiling:)

That will be a glorious day when we can all be together again, at home:)

Well, I have babbled enough. I am typing this offline so I can more take my time and not worry about getting disconnected.

Have a good day and please visit the auction if you haven't already. Katia is quite proud of her ARTWORK and would like to show it off:)

Maybe she can do some crafts with her sisters:)

Love, Tracy










May 20, 2004 7:15 PM

Hello:) I would say "Good evening" but it has been an evening of (well I don't know how to really describe it without sounding whiney).

I have been dropping everything, spilling things, knocking things over, etc. Katia has had about 4 or 5 different mini-meals which she ask for and then refuses to eat. Then she had a bad headache and refused to take medicine for it. She kept spitting it out. Finally she took it and then told me her headache was gone (with a big smile on her face).

I went to do laundry and take out trash and THOUGHT I left my keys in the room so I panicked:) Then I realized I had put them in the wash:) Not my day.

I went to the kitchen to get a cup of tea and sit down for a bit. I heard the phone ring in the room so I came in and Katia said that the phone rang (she answers it) so I asked her, "Was it daddy?" She said no that it was someone else. So I started listing off people that I may be expecting a call from and finally got an answer, which meant her IV fluids and medicines had been delivered upstairs so I thought it would be best to skip the tea and go get the stuff from upstairs. Well, to get up stairs here, you go up some stairs and then back down some stairs. On the way down the last stairs, I missed the last few and landed shoulder first into a wall!! OUCH! I do have to say thank goodness that wall was there or I would have just rolled out onto the floor in front of everyone. So, my shoulder is bruised a bit and my pride is bruised a bit more.

BUT now, the medicines are all put away, Katia is plugged into her fluids, the room is vacumed and cleaned and I am drinking tea as I type:) So, things got better!!

Okay, now to the news of the day (Medical)

We went over to get Katia's scans which I had preregistered and filled out any "necessary" paperwork for as of 2 days ago. I get over there ready to just go into the scan only to be told that I have to go register. I told them I already did and I filled out all the necessary papers. They said, "You couldn't have already done it" so I proceded to bite my tongue and fill out the same papers as I did the other day while Katia sat facing the wall in a room where quite a few other people were. I don't want to expose her to anything which is why I PRE did all of that! All the same papers filled out twice. Whatever. So, then we go to the scan which went very well (thanks to Verset- a drug that makes Katia pretty much willing to do whatever she is asked to do).

I have no results yet.

But, before the scan, I met with Dr. Petrovic in the hall and she said the preliminaries of Katia's marrow look good AND that they see some of the "Platelet Markers" which would mean Katia's marrow is - or should be- making its own platelets soon. We are still waiting for the results if there are any abnormal or leukemia cells in her marrow and also we are waiting to find out if she is still all donor cells (it shows all boy if she is full donor-since she had a cord from a boy). We are also waiting for some viral studies to come back still I think. But, I am happy they saw a few (a very very small amount) of platelet markers. I told Katia to ask those cells to bring some friends, smart friends that know how to make good platelets and only good cells:)

Okay, Katia's newest thing...

Talking to herself!!! Oh, my gosh! She just goes and goes. When I was taking a shower, I thought she was on the phone. When I asked she said she was talking to herself. When I was in the kitchen earlier today, I heard her talking. I asked and she was talking to herself. When she is going to clinic in her wheelchair, she talks to herself. It would be even better if I could really understand what she is saying, but if you are talking to yourself, I guess you don't have to speak up or speak clearly. She is talking to herself as I type this:)

Well, I will be back later IF I get any scan results but other than that, have a great evening:)

Love, Tracy

PS I am going to keep both of my feet on the flat floor for now. My arm is pretty sore and doesn't need any more action for tonight:)

PRAYER:



Heidi
Heidi was just very recently been diagnosed with a rare, end-stage lung disease. She and her family could very much use your support at this time. Her sister has followed Katia for quite some time now and they just received this news.














May 20, 2004 12:48 PM
Day 105

Good morning:) We are about to go for our CT SCAN but I wanted to get on here first. Please see the prayer request. Angel Kelly passed away last night after a very hard battle with Lupus. I was introduced to Kelly, not too long ago. I went to her page and there was a link to Katia's page on there. She had been following Katia's story and I realized how small this world is in so many ways.

Pray for Katia for the sinuses to have improved. We are scanning her sinuses and lungs and we need both of them to look better (well the lungs were clear on the last scan so pray they are remaining clear).

I will email later in the day. I hope to find out the results from this scan by the end of today.

As far as the biopsy yesterday. I didn't hear anything. That assures me the preliminaries must have looked normal and we wait for all the final results.

Thank you for checking up on Katia and the links on her page. We are all in this together and that includes you. You are a huge part of our success.

Love, Tracy

PS If you haven't visited the AUCTION please drop by there and help us make this a success. The funds from the auction go to the Katia Solomon Fund. You can learn more about the fund by visiting the Website.











May 19, 2004 8:39 PM

Good evening:)

The evening has gone well and for that I am THANKFUL!

Katia is already dreading the CT SCAN tomorrow and was really crying about it most of the afternoon but she finally stopped (she is more into a movie now-KIPPER). She hates the sinus scan because she has to put her head upside down. She does get some "Happy Juice" to do this but she frets all the way until that.

She asked for Beenie Weenies tonight and only picked all the Weenies out but she is happy and full and done with all of her medicines so I think tonight will go smoothly:)

Katia is a joy to be around. I mean she isn't one to really be upset for long periods of time, she isn't spoiled (well some but not a whole lot), she is very very loving and affectionate, she is funny, she is definitely squeezable and fun to hug and kiss, and she just has a way of bringing out the best in me:) I wonder if she realizes all of this. I mean Katia can make me keep a smile on my face at least 85 percent of the day and that is pretty darn good for all we go through:) I miss tickling her but I can't with her broviac and also she doesn't find that funny right now. She has always been one you could only tickle for a short bit and then you had to stop.

Today, we went in the library here (put aside for transplant patients) and we watched this adorable video of 3 and 4 year olds from a local church. They were decorating a big card for Katia and wearing ladybug masks and hats and they all were saying hello to her. It was so cute!!!! Katia smiled the whole way through watching it and so did I. That was so sweet. Katia has rarely been with a group of kids her age. Most of the time at church, she stayed with us. She has some cousins close to her age but really she has no concept of a room of kids her size. She was just staring in awe. I felt bad for her because they were all goofing around and playing with eachother, exchanging mask and just being kids. We always have to worry about her being too close to anyone or sharing things, what she touches and then not to touch her face, etc. BUT, it was so nice to get that video and Katia really really liked it:) Thank you to the Van Dyke Methodist Church 3 and 4 year olds (and their teachers!).

Well, with that I close. Katia says my typing is giving her a headache. I do type fast and hard so I have to believe her:)

See you tomorrow! Love, Tracy

PS I haven't checked about if anyone solved the riddle. I read part of the guestbook today at the hospital but I haven't been there tonight yet. So, I will let it ride till tomorrow morning:)








May 19, 2004 4:50 PM

We are back and Katia is comfy cozy right now resting. Her back is sore where the Bone Marrow Aspirate done so she doesn't want to get up.

We have no results yet but I am glad she got platelets today. I was worried about that.

I will be back later tonight. I actually came on here right now because Angel Maddie's link wasn't working and I wanted to fix it and check on a few kids that I have listed above.

Katia sends a big hello:)

Love, Tracy







May 19, 2004 10:17 AM
Day 104
WBC 5.68

Well we are here in SPU right now but I wanted to update the page (I am in Family Waiting downstairs) that her bone marrow aspirate went fine, the sedation and all. Her platelets were down to 12 so she got a platelet transfusion and is now getting the IVIG transfusion.

Just wanted to drop in for a second and update to let you know:) Thank you for your prayers. We have no results yet...

Please pray for Emily L. She was admitted last night with a fever and a WBC count of 1 so she needs your prayers that they can quickly get this cleared up.



Love, Tracy








May 18, 2004 10:00 PM

Well, this has been a pretty long day and I am really ready to call it a night. Katia hasn't felt too good today and that has pretty well lasted all day. She DID however go outside and walk around a bit with her walker. She is doing much better walking. She still has little to no balance and her legs are shaky but I have to say, she really really tries and it improves:)

Her appetite is good but the gagging from sinuses slows her down and makes her not want to eat although she ask for food. It is an ongoing circle with that right now.

She goes through a lot of little meals but usually only eats bits of it. I get her the little Toddler Meals so I am not wasting much, at least.

Tomorrow we have to go to Special Procedures Unit in the hospital at 6:00 AM so that we can get her labs and give her what she needs.

So, pray for us tomorrow that her sedation goes well (due to problems with her sinuses) and that her marrow looks good. We won't know the complete results till next week but we should get preliminaries tomorrow. Then we have a transfusion of IVIG which last for about 5 to 6 hours so we have a LONG day planned!

It will make tomorrow evening all the better though:) I look forward to tomorrow evening.

Then on Thursday, no Physical Therapy, because we have a CT SCAN of her sinuses at 2:30 PM. I am eager to see what they show.

Katia has been doing very well with her medicines and I am so very proud of her:)

She also has really improved with her emotional outburst (steroids haven't been weaning over the last few weeks) so that is a very pleasant change:)

I want to thank you all for your prayers because if you see one thing through Katia's story, I want you to see the power of prayer. Prayer does wonders for the physical, spiritual and emotional part of us. People always say, "I can't imagine how YOU (meaning me) have done all of this." Well, I haven't. God has enabled me and given me the strength and the courage I have needed each day. If I looked ahead and knew everything in advance that we have now gone through, I would probably be in a very thick padded room surrounded by a lawn of thick green grass. I have only been able to do this with the Grace of God and the help of you, my friends, and my family:)

God bless each of you for blessing me and my family!


Love, Tracy







May 18, 2004 1:40 PM
Day 103

Good day:)

Today has been a completely hectic day so far. It started off nicely after sleeping in a bit.

Katia has a few new bruises so I called her doctor and we are going to go to the hospital at 6:30 AM tomorrow instead of 8:00 AM so we can do a lab test before her Bone Marrow Aspirate. She will probably get platelets first thing in the morning as long as she doesn't bruise too much more today.

Then her sinuses are draining and causing her to vomit and gag. I will be so glad when these sinuses are behind us. We are scheduled to have a sinus CT Scan on Thursday afternnon. I am really hoping they don't look worse.

So, Katia is not a happy camper, we are bypassing Physical Therapy today (due to low platelets) and I have a pounding headache right now.

Well, I need to do some laundry of her blankies and all and hopefully the next few hours will be quiet and restful. She is asleep right now all cuddled up and cute with her blankie:)

Pray for those sinuses and that the Bone Marrow looks clear and good:)

Love, Tracy






May 17, 2004 9:25 PM

Well we have had a good day but our evening is not going all too well. Katia is having a lot of "butt pain". She did finally have a BM but it is still bothering her. She also has some new bruising which leads me to believe her platelet count may be going down tonight. I guess we will check that tomorrow.

She is not in a good mood right now at all. Nothing is going her way so I think it is best that we call it a night and start a new day tomorrow. We both like watching Frasier before bed which is a wind down for us. I think she likes it so much because it makes me laugh:)

Oh, that is true, we are also allowed to laugh around her more, not AT her but around her. Remember that used to really get under her skin.

Katia is a sweet sweet baby normally and I can see a lot of that coming back. She is very determined and set in what she wants but she is usually very bubbly and happy too so it equals out.

Oh, tonight I saw Casie and her mother. Casie is looking very good and, as it looks right now, due to go back into the hospital on the 24th of May to start at day -7. So please keep her in your prayers as I am sure she will be going "stir crazy" in there. She is already fretting being locked in. I told her to keep me updated until she can get to her page.

Well, Katia is in need of my attention right now:) Diaper!

Love, Tracy








May 17, 2004 11:09 AM
Day 102
WBC 4.7
Platelets 24 (no platelets needed for 11 days now!)

Good morning:)

We are back and Katia didn't need platelets. She thought she did but she didn't:) I am glad she thought wrong. On the way back to the Ronald McDonald House, she was in a cheery mood and wanted me to take her down to go see the water behind RMH. Well, I thought, "Okay I can do that". Yeh, right! That a steep hill down on the way there and a steep hill up on the way back. Pushing Katia in the wheelchair proved to be a little more than I could do so next time, we wait for Myron!

It was nice to be able to take her when she requested it but all we need is a runaway wheelchair or a smashed Mommy.

Okay, so I am dealing with a lot of geniuses here! YES, IT WAS THE MAID BECAUSE NO MAIL IS DELIVERED ON SUNDAYS. I like all the reasoning that went on in the guestbook as to who it could and couldn't be and why:) A lot of true detectives out there:) Well, I like riddles so here goes another one. I am sure you will get this right off. Myron laughed at how quick last night's was solved. We went to read the guestbook and the answer was right there, already!


RIDDLE:

Johnny's mother had four children. The first was April, the second was May, and the third was June. What was the name of her fourth child?



Let's see if this takes more than 5 minutes:)


Love, Tracy







May 16, 2004 9:56 PM

All is well here in our little world! We had a nice dinner together and then took a walk to go see the outside world!

Today, while Katia and I were outside on the deck, we saw the Cardinal Babies had arrived. You could hear them chirping and the parents kept going back and forth to the nest. We have been watching this nest since we arrived. I kept whistling like the cardinals and, I am not sure what I was saying, but they seemed to keep listening and flying right down to us to the table we were sitting at. It was pretty cool!!

Well Ms. Katia is asleep and I am short to follow. We have to be at clinic at 8:00 AM which means we get up about 6:30 AM. But, before I leave you, I leave you with this riddle.

The answer will be given tomorrow evening so let's see if someone answers this one as fast as the last one!


RIDDLE

A man was found murdered on Sunday morning. His wife immediately called the police. The police questioned the wife and staff and got these alibis:


The Wife said she was sleeping.

The Cook was cooking breakfast.

The Gardener was picking vegetables.

The Maid was getting the mail.

The Butler was cleaning the closet.



The police instantly arrested the murderer. Who did it and how did they know?


****
Can you solve this case?



Love, Tracy






May 16, 2004 12:55 PM
Day 101


Good Day!

Well, I finally shrunk down the journal entries so hopefully the page will load a little quicker:)

Katia is having a quiet day right now, sinuses are really bugging her and she is sneezing a lot. I am going to probably keep her inside today.

I think maybe she should be on some allergy medicine or something. I don't know but this is driving her nuts, all these sinus problems.

She wants to eat but her sinuses are holding her back right now. Please pray that these will just go away and her cough will finally be gone.

I was listening to Delilah on 94.9FM last night and I heard the end of someone who had called in. She said the best way to get over your problems is to realize there is someone out there praying they had YOUR problems. There is always someone out there with far more problems. That is so true. I really try my hardest not to have too many pity parties (of course we always need to feel sorry for ourselves some) and to remember to be grateful for where we are and what we have. I have HOPE and some people don't. I know that things seem to get really bad at times but when I look at the BIG PICTURE, it puts things back into perspective for me.

This morning when Katia woke up, she said she LOVES to sleep. She likes to tell me about her dreams. It is so cute when she talks and explains things. It is amazing how many more words she seems to pick up each day. Thankfully she doesn't learn her full vocabulary from SPONGE BOB but she really is a sponge that picks up on what is being said around her by people, TV and radio. She hears it all! I once heard that "Children are God's ears here on earth". Man, that is so true. We always have to watch what we say.

Well, have a nice day:)

Thank you for checking on us. Katia hasn't been painting the last few days. She is in a coloring mode right now. That ladybug picture is too too cute! She also drew a picture of a FRUIT BOWL. Is that artistic or what? It has an apple, banana, orange, and grapes in it.

I will be back later.

Love, Tracy




*****


May 15, 2004 9:30 PM

Good evening:)

I am going to make this short because I am uploading some pics to add on to here. We had a fantastic afternoon and I want to share some of the pictures with you:)

Katia is laying here watching me work with getting the pictures shrunk down for the site and telling me which ones are good and which ones aren't. Some she says she looks unhappy in (she isn't smiling) but she thinks they are cute:) I DO TOO! I don't believe in deleting pictures:)

Well, let me finish and I will have them on within the next 30 to 45 minutes.

Have a good evening:)

Love, Tracy AND KATIA!


PS I READ THE GUESTBOOK AND I AM DEALING WITH REAL SMART ONES OUT THERE!! YOU ARE EACH RIGHT! AMAZING. BUT, I NEVER DOUBTED SOMEONE WOULD GET IT AND QUICKLY! I WILL HAVE TO COME UP WITH ANOTHER RIDDLE:)







May 15, 2004 12:15 PM
Day 100

First, I thought I would start off with a list (I was going to say "small" list but who am I kidding?) of the things we appreciate about being away from the hospital setting. These are in no certain order...

1. People don't just walk in and out of the room at all hours a day.

2. Seeing Katia smiling and happy!

3. No beeping throughout the whole day and night.

4. Being able to go use a stove!

5. CARPET!

6. Being able to take Katia outside without having to wait for an okay.

7. Taking a shower and not having to worry about hearing a "Code Blue" on the floor. When you hear those, you don't know WHO they are talking about so you panic right away. That happened once while I was taking a shower and I have never gotten dressed (partially) so fast in my life!

8. Not having to walk the "Green Mile" down to the cafeteria. That is what that hallway always reminded me of as I would head down that direction. The movie "Green Mile".

9. No fire alarms!

10. Being able to pick up 94.9 FM and listen to the radio at night. What a great sleeping pill.


Well I could go on and on and I was smiling at each of those that I wrote.

Here is another set of thoughts.

OUR FAVORITES OUTSIDE

The birds chirping, GREEN grass and trees, walking past flowers, seeing squirrels up in the trees or on the fences, wind blowing on us, the feel of the sun (for a little bit), WALKING to and from clinic, the smell of the outdoors, etc.

Do you get the hint we are really liking being free? Well we do. The only thing Katia and I agree that we DO NOT like is flying insects (not speaking about ladybugs). We also have not seen ONE ladybug yet! We are looking. I am sure Katia will be the first to spot one:)

Katia is sitting here eating a sandwich and chips. Dr. Petrovic says she needs more salt in her diet. Her levels were looking good yesterday for the most part. Her cyclosporing (anti-rejection medicine) level was high so we are lowering the dose of that. Her potassium and magnesium levels were okay though.

Today and all last night, Katia's cough is driving her quite buggy!! She is tired of coughing. Her nose looks a lot cleaner this morning so MAYBE things are clearing up. She did throw up in the middle of the night from all the mucus. The LAST thing Katia would need right now is a cold of some sort or a sickness in any other way. She is moving ahead so well and has pulled through so many things. We want to go home soon so we are doing all we can do to keep away even the smallest of germs. I feel like I get a little over cautious at times but then I think, no I HAVE to be this way. I HAVE to get this little baby home to her family so we can all be under one roof. That could be in the next few weeks if things keep on going well and I can hold out for another few weeks. OF COURSE when we go home, the same rules apply for a long time but then we will be home!!! Katia is working on her walking so she can walk out to her swingset. That is what she says. I am going to need to get her some cotton pants and long sleeve shirts that aren't hot to protect her from any bugs or even the sun when we go home. It seems there are more bugs now than when I was a kid (long long time ago) and she HATES them.

Okay, enough babbling. Thank you for checking on us, even though it is a weekend. I have a question for you, actually it is more of a game:)

Can you come up with 21 coins (United States money) that equal $1.00? Let's see who can get it in the guestbook the quickest. Make sure you double check your answer before you list it:)

My dad used to always tell people that.

Love, Tracy


PS Seeing that I like to try to keep a positive outlook on things, I like jokes and riddles:) Anyway, I added a fun link up on the site. If you scroll up to where the ladybug is picking the flowers up on the site, you will see a link with a lot of fun riddles. Have fun:)








May 14, 2004 7:30 PM

Good evening:) Thank you so much for all the guestbook entries about the journal. I feel good coming here and writing. SOMEDAY Katia can sit and read everything!!!

Well, we had a nice relaxing afternoon. Katia doesn't want to get up but I know she feels yucky so she has been watching TV. She is watching Jungle Book 2 which is a GREAT break from Kipper which we have watched for a few days straight! WE did take a break last night to have a "Frasier Party" with popcorn. Katia and I both watch Frasier all the time. I think she likes to hear me laugh and she likes their funny ways. I LOVE FRASIER and I am really going to miss seeing new episodes! I feel like I have been watching that forever. I started watching cheers right after it started and then when Frasier came around, I have been a faithful watcher. Every night I watch the reruns. I have the Season 2 DVDs and I want to collect them all in due time. It has to be one of my favorite all time shows! Okay, I think I have made myself clear on that. Great cast and I am sure they could use the break now.

Well, I went outside and took some pictures of flowers a while ago. It was nice. I had forgotten how GREEN that "GREEN" looked in pictures! I was so used to indoor hospital pictures.


It is such a pretty color if you really look at it long enough. I also love the blue sky:) BEAUTIFUL!!! The whole way back and forth to clinic, that is what Katia and I do. We look at all the things along the way.

She is sitting here grinning and waving at me and blowing me kisses so how can I pass that up? I will take a break and enjoy the evening:) She is such a sweetie!!! I guess you can see that now by the news clips. Above there are links to older news stories also.

Love, Tracy









May 14, 2004 12:54 PM
Day 99
WBC 6.6

We are back from clinic and although Katia's belly is not happy at all, she did well with her Pentamindine treatment. She was really "holding it together" although we could tell she was feeling very pukey. Her heart rate was in the 150's and she was quiet and making little noises here and there, but nothing came up. Right now, she is at RMH and sound to sleep snoring. She periodically wakes up coughing but maybe this will pass without puking. ~~Knock on wood here~~

So, we have the weekend free!

Oh, let me tell you what is appearing to be very good news. Her platelets were 22 today and on Wednesday they were 21 BUT she hasn't had a platelet transfusion for 8 days now!!! I am thinking and praying that means she has engrafted her platelets. I told her to tell the platelets in her to go get some friends and build up their numbers for Monday:) She was so happy with her platelets. I think she really understands that more than she lets on.

We are doing okay though. I thought I would be going insane at RMH but actually we have gotten into a good routine and the comfort of having the hospital right here is good for me. I will be much more relaxed when these sinuses clear up. (Nasty mucus talk coming up) She gags on mucus that is draining down her throat and then finds it hard to catch her breath. I handle it fine just because I know that help is right outside the front door. I just want these sinus to drain out and leave her alone. She told me on the way to clinic, "I hate coughing!" Katia never uses the word "hate" so it must really have her hot and bothered for her to say that. That is really what I think keeps her from even being more playful. She is tired because she coughs ALL night long and gags periodically through the night. It also makes it difficult to take her medicines which would make her gag anyway. So, I ask that you pray for these sinuses to clear up, quickly.

Not much else is up. We are going to try to have a relatively quiet weekend and maybe work on some crafts and walking a bit.

I want to thank you for dropping by here. I know I say that all the time but REALLY I think about that everytime I sign on and read the guestbook. I feel like I know so many of you and well, Lord knows, you get to hear from me all the time! Sometimes too much, huh?

So, I will chat at you later:)

Love, Tracy









May 13, 2004 4:15 PM

Katia did really wonderful at her Physical Therapy but finally wore out in the last 20 minutes of her hour so we left a little early. I jumped on here mainly to share the link the latest news story on Katia this past Monday. The footage is really good and you can hear Katia talk and see her in action!

Enjoy and thank you to our friends at TampaBay's 10 News!

Love, Tracy







May 13, 2004 12:20 PM
Day 98

Good morning:)

We are off to a late start today but that is okay:) We enjoy slow mornings. Katia is doing much better today as far as her cough is concerned. I am hoping that means her sinuses are clearing up. She isn't so puffy looking around her eyes either, probably slept better last night without coughing so much.

We are off to PT with Charlene. Katia doesn't want to go today because she says her feet will hurt but once we get there, she has fun.

It is also a nice walk over there, kind of hot, but nice.

So, I will be back later:)


Love, Tracy








May 12, 2004 6:25 PM

Today's clinic visit was quite quick. No platelets needed! They were 21 and the limit is 20:) Katia was very happy and so was I. Friday she will go in at 8:00 AM and we will have our regular labs, Pentamindine treatment (which last 2 hours and gets Katia dizzy and nauseated). She will probably need platelets by then BUT we will see. That Pentamindine was always done once she was asleep in the hospital but in clinic, we don't have that luxury. We will give her Benedryl and Zofran to see if we can help her out some with the side effects. She gets this every 14 days to help her fight certain infections. Then on the 19th she will have her next Bone Marrow Aspiration done in SPU at the hospital. She is due to have CT SCANS that day also. We are praying that all is clear, she is 100 percent donor AND that we see Platelet Markers in her marrow.

So, that sums up all the medical stuff.

Like I said, I wanted to take the scenic route which we SORT OF did but we ended up getting a call as soon as I finished updating that we could come in early so we left pretty quickly and went the short way on the way there. Of course, Katia likes to see all the squirrels and birds, lizards and even the Bumble Bees on the way over there so we can't go too fast.

Katia is back to being more of a chatterbox now so she was quite talkative while we were waiting in our room at clinic. She always drills me to make sure we are going back to RMH and not the hospital. She always takes a polaroid picture to give to Dr. Petrovic. She likes doing that so we usually snap the picture right before we head to clinic. She really likes her doctors and Dr. Petrovic has really become very familiar to Katia and she likes her a lot!

So, that sums up our whole day in a nut shell.

If you look above the journal entries, there is a Pampered Chef Fundraiser going on for The Katia Solomon Fund. I will leave the link up there for as long as it last. When you go to the Pampered Chef Site, go to the OUR PRODUCTS section, find the items you want and enter TRACY SOLOMON as your hostess and it will be taken care of from there. If you have any questions, you can contact Darlene at csanford@fulbright.com.

Katia is sitting here watching TV with her cloth up on her head and this smirk on her face:) I LOVE THAT LITTLE SMIRK!! It means she is happy and content right now.

Love, Tracy











May 12, 2004 12:05 PM
Day 97
WBC 8.8


Well today is a clinic day. We will leave very shortly but I wanted to update. There is a new prayer request above that I needed to add on for Allie.

Katia had a good night and is in quite a good mood today. That is nice. I want to take her early to clinic so we can walk the "long way" and see the pretty scenery:)

I will be back!

Love, Tracy







May 11, 2004 6:00 PM

HIYA

Katia had a very nice day and afternoon. She was filmed today for a news broadcast here so we went out for a walk and really had a nice time:)

Then, we went to Physical Therapy. She had a good visit. We played with some cool markers, rode 2 different bikes, did a little "Sesame Street Shopping" and just all in all, pooped her out. She really does try very hard. She can't stand up yet or get herself up from a chair. Her knees and hips are very weak but we are working on that. She is very determined.

Right now she is asleep so I am getting her meds together for tonight and getting ready to plug her into her fluids. I wanted to update because when I start all of that, all the sudden it is 10:00 PM and the day is done.

Thank you so much for always checking on Katia:) I am so glad I am able to share her story and her ups and downs. I look forward to more and more ups to share as the days go on!! Love, Tracy








May 11, 2004 11:40 AM
Day 96

First, Happy Birthday CASIE. I am glad you aren't in the hospital today!

All is okay here. We just came back from a stroll outside. Katia walked across a bridge both ways! She wants to go back out again but we need to get lunch and then we have PT at 1:30 today.

I just wanted to update quickly and let you know we are having a nice nice day:)

Love, Tracy

PS There is a link above for Connor H. Please pray for him and his family today as they are meeting with the doctors to find out the next plan due to his relapse.





Well,




May 10, 2004 6:18PM

Hello again my friends:)

We are hoping to wind down early here tonight (hoping hoping hoping) so I thought I should update a little early tonight. Katia is plugged into her medicines, she has had dinner and is pretty much into watching a movie. Thank goodness for MOVIES! They are really such a great thing right now to take her mind off of things. I have definitely had a HUGE dose of kid movies! I have every word memorized of all her movies basically:)

Well, let's see. What is up? Well I saw Casie S. today and she is looking really well. She was over here getting prepared for her radiation treatments so she brought her dad over to show him the Ronald McDonald House. Casie used to volunteer here a couple of years back and up till not too long ago really. She is an amazing teenager:) Anyway, they are working on her transplant which will hopefully be very soon. She needs her "new blood" to get on her way to a full recovery:) Her and Katia have a nice little bond! Katia had never seen Casie outside of the hospital until today. Casie is having to take care of her health and wear a mask too so she won't get sick. She can NOT get sick so please pray for Casie that they can be on their way to her transplant with no further complications. I told Casie I would update on here as she lets me know what is going on. She hasn't been feeling well and isn't really eating so she doesn't get online much at all.

So, let's see. What else? I want to thank those of you signing the guestbook. Sometimes that is just like medicine for me during the day. I can get pretty glum feeling and I easily get worried about day to day problems and bills. I try to stay positive and upbeat but it gets hard. I go to the guestbook and it always reminds me just how many people come by to check on my little ladybug each day. I read your kind words and it brings me alot of comfort and strength. More than words can ever express. I read the entries to Katia a lot of times and, well we just like the guestbook a lot!! Thank you:)

I know so many people wonder how I get through each day and how I haven't pulled all of my hair out and ran into oncoming traffic... I have to say that it is all due to God's grace. God's grace gets me through and your prayers bring that grace. Any family going through this really needs a lot of prayers and help and just love. Knowing you are loved and have people supporting you, caring about you, and backing you up brings strength beyond comprehension. I can definitely say that I FEEL it. Through all of this, I have had many bad days but there are also days (a lot of them) that I can find genuine peace and happiness and smile. I love to smile. It really feels good to smile or laugh. I am so happy Katia has again found her smile and a little bit of her laughing:) She still is serious a lot of the time (totally unlike her old self) but she is getting more and more chipper and talkative each day. She is quite a chatterbox usually that has a lot of quorky (however that is spelled) little remarks and funny things to say or do. She has always been a joy to spend the days with. Katia and I are just two peas in a pod each day and always have been. We enjoy spending our days together (especially when we are home and feeling well). Katia requires a lot of attention but mainly is just being heard. When we are home, she just follows me around and does what I do but she has always TRIED to communicate and now that communication is getting better and better as she grows older and gets a better vocabulary. Now that I look back, I think I have had a good understanding of her for a long long time though even when nobody else did. I can't remember ever being baffled by her words like, "What in the world is she trying to say?" She LOVES to see that she is understood though:) LOVES IT!!!

Well, speaking of communicating, I have babbled on enough. She wants something to eat but she wants me to pick it for her. This usually leads to her changing her mind but we will see:)

Good night.

Thank you each so much for making the auctions a success. It is really fun knowing that Katia's stuff is getting sent out all over the U.S. If you have won something, can you (if you get a chance) take a picture of yourself with it so she can see how this is working.

OH, by the way, the scrapbook is coming along great. There are a LOT of pictures in it and it is so neat putting names and faces together. PLEASE if you haven't mailed me yours, don't forget. Any picture is a good picture! Just remember to put your name, location and maybe an email address on the back. The largest they can be is 4 X 6. They can be mailed to the PO BOX. Any mail is going to the PO BOX now so I will put the address here again:)

KATIA SOLOMON
PO BOX 22375
TAMPA, FL 33622

Thank you so much!

Love, Tracy and Katia












May 10, 2004 11:00 AM
Day 95
WBC 4.3

We are back from clinic (nice quick trip). Katia's platelets were 110 on Friday and today they were 30. She doesn't get transfused until they drop to 20 so we got to return without them today:) She was happy.

She is doing well though. That cough is still really bothering her and it keeps her pretty well upset when it gets really bad. Hopefully that will clear up quicker than later.

She is keeping me on my toes today with feeding her. She has had oatmeal, balogna sandwich (half) and now she wants milk and cereal:)

Let me cut this short, she is coughing a lot which usually makes her sick and throw up.

Love, Tracy







MAY 9, 2004 8:50 PM

I wanted to share these pictures with you (I am about to upload them) and let you know I had a splendid day with Myron and my 3 wonderful daughters!!! I got my precious handmade cards plus a very funny one the girls picked out about me being stuck with them for life (I pray so). They got me a necklace with their initials engraved in it and a beautiful card, from Myron, that just really said the sweetest stuff. I truly have been blessed with a wonderful and loving family and a LOT of awesome friends!! YOU!

Love, Tracy

PS We have clinic at 8:00 AM to see our new report card in the morning:)







MAY 9, 2004 10:30 AM
HAPPY MOTHER'S DAY
DAY 94

I WILL LEAVE TODAY'S JOURNAL UP TO MYRON:)



Greetings Everyone! Happy Mother's Day to all you Mommies out there!

What a special day Mother's Day is. A day to celebrate Mom's!

I for one have been blessed double! God gave my brothers an I a mother with a heart of pure gold, a sweet and loving disposition. Till this day, my mother devotes her everything for her kids, and she pray's for us without ceasing.

I miss my mom every day... but today especially... I thank God for blessing me with her.

Then... There is my Childrens' Mommy... Again, a woman with a heart of gold who gives her everything for her kids, devotes her every waking moment to there well being and loves them with a love that is there for the whole world to see.

My kids adore their Mommy, and they speak wonders of her... You know... they say that is how success is measured...

Someone asked me the other day, were Sharayah and Tatiana jealous of all the attention that Katia is getting.
Did they feel abandonded by Mom...

Well the anwser is no, Not at all!

They certainly feel the void of mom not being home, and it's evident in alot of their actions. But mommy is always there! She still keeps track of their every move, and is there for whatever they need of her...

Can't wait till Mommy is home...

Both Sharayah and Tatiana have shared with me that they know that if it were them going through what Katia is enduring, mommy would be right there too, 24/7.

It also brings them comfort to know that Katia has mommy there, and they feel that because she is there Katia is going to be all right.

Thank you God for blessing me with the mother of my children.

Happy Mother's Day Tracy!!! We all love you so very much!

And again, Happy Mother's Day to all of you Mommies out there!

Luv always, Myron










May 8, 2004 9:00 PM

Good evening:)

We have had a reasonably quiet day (which is very nice!) I just wanted to drop by here and update. Remember the auction ends tomorrow so see that you get your bids in. Any ideas for another auction? What would you like to see? Katia wants to make another heart but for me:) She wants it for Mother's Day! She is too too sweet.

She has had a good day. She isn't very active and says she just doesn't feel good. I am not pushing her right now because I can understand that she needs her rest. She has really been quite active this last week compared to the hospital.

I heard her pray last night (well actually about 3AM) that her head hurt. She hates medicine and she said that in her prayer. I acted like I didn't hear her but when she woke up this morning, I asked her if she had a headache and she said no but it was hurting in the night. I am still going to say that is due to sinuses because I know that has to be bothering her. She puts a cloth on her head if it is bothering her and it is on there 90 percent of the time. So, I just pray these sinuses will soon be a thing of the past.

Something I have been thinking about today is all the Moms that have lost their children, not only to cancer but so many other things also. So many tragedies out there. I cannot imagine how they feel but I think Mother's Day must be such a difficult and endless day for them. I pray God will give them comfort somehow. I try hard not to let things get to me too much but I am human and they do. I can't help but to always put myself in someone else's place. I can't watch scary movies because of that because I can only imagine...

I am just grateful I have my 3 daughters to celebrate tomorrow with. I have to be thankful for that! God has blessed me tremendously this year in that way. I have 3 beautiful daughters who love me very much! I have a wonderful husband who sees that his daughters always treat their Mom like a queen and with great respect. "Thank you, God for my children." When I was around 11 years old, I made up my mind that someday I just wanted to be a very good Mom. I didn't have my Mom and I wanted to really BE a Mom. I have been blessed to be able to be there for my children. I feel honored to be a FULL TIME MOTHER. Some of my friends have said they couldn't BEAR to be home all day and I am sure they are probably right. Although I have a very active mind and would be great in a career, I just really wanted to be MOM. When all my kids are grown and out of my house, I will concentrate on something else (go drive some other people crazy all day) but for now, this is what I want to do and I believe I am really meant to be doing this. I never get a "burnt out" feeling. I am so grateful for that.

Well, I was just working on the Katia Solomon Fund webpage and I have been working uploading some pictures (I will try to change out pictures in a day or so) so my back is telling me to get off this computer! I better listen to it because it pretty much rules my mornings if I abuse it:)

So, HAPPY MOTHER'S DAY and since I was raised by my father, I must say HAPPY MOTHER'S DAY to fathers also or grandparents, aunts/uncles, etc. that are raising kids. My cards I used to make at school were far different than my friends' cards to their Moms. My said, "HAPPY MOTHER'S DAY DADDY".

Love, Tracy







May 8, 2004 1:45 PM
Day 93

Hiya:)

Well we are doing swell here. Had a nice night (not too many dilemas) and tomorrow is Mother's Day. I am so glad to not be spending tomorrow in the hospital! That is the best Mother's Day present for me!

What do I LIKE to do on the weekends... Well I LIKE to have nice quiet days around our house and maybe have company over one of those nights, watch TV, go outside, maybe visit a park and let the kids play.

What I DO on the weekends right now... A lot of nursing and cleaning but I enjoy that too because it is working towards our long goal of going home. That is why I really try to live by that statement from King George V. "The secret of happiness is not to do what you like to do, but to learn to like what you have to do."
That is so true and it really makes a person see daily life quite differently. We can't always do what we would like to be doing but we can try to be happy with where we are and what we are having to do.

Katia is sitting here eating a bologna sandwich right now with cheese. She is so CUTE!

Our plans for tomorrow? Well I am not sure yet. I leave that up to my family. They take very good care of me on a daily basis but they make Mother's Day very special for me. I like homemade cards from my kids and a present from the heart. I am really not into clothes, jewelry, etc. I LOVE when they cook for me or just do something extra nice. I am pretty easy to please, really. We always call Myron's Mom on Mother's Day. She is a very special woman. I grew up without my mother but I have had an awesome Mom since Myron came into my life. His mom had 6 boys and from the time I met her, she has treated me like her very own daughter. We get along great and we both admire eachother:) Myron's Mom is the kind of person you can't help but to love!!! Her name is Aminta which is also Sharayah's middle name. I call her "Ma".

Well, HAPPY MOTHER'S DAY to each of you who are Moms are even just like a Mom to someone. I hope you each have a blessed day. I know quite a few mothers who are spending this mother's day without one of their children due to death and my heart will be praying for you tomorrow. I cannot imagine...

Love, Tracy










May 7, 2004 11:56 PM

First, I have to start this out with an update on Angel Maddie P. I had followed Maddie for quite some time and she had sent Katia little Ladybug cards and toys she had found. Not too long ago, she was on HGTV on a show for having her room made over. I was in tears seeing her actually "live" and in person (well as in person as we can get here on Caringbridge). Tonight I sign on and find out that she has gone to heaven. As I read her mom's words I couldn't help but to feel assured that Maddie is healed and happy and a beautiful beautiful angel!!! Her mom said that Maddie had said either things would get good or better for her. Good to find healing on earth or better to have complete healing in heaven. Maddie dreamed of being a teacher and I think she taught me (and many people) many things in her 14 short, but filled, years here on this earth. I haven't been as in touch with all the websites I used to visit so this really shocked me tonight.

Secondly, I have found out that Connor H. has relapsed. Oh, how I hate that word!!! He has fought Rhabdomyosarcoma and his last scans show it is back in the same area of his pelvis. Please keep him and his family in your prayers. Connor has not been told yet but it is okay to use the guestbook or email to his family.

Katia is doing well. She had a pretty quiet afternoon but tonight she got had a good time watching movies and eating a good dinner (bologna and cheese sandwich on hamburger bread with seeds...). I have to say, she picks a "Katia diet".

Well, I am tired and with the news of Maddie, I just want to say some prayers and go to sleep. Oh how I hate this disease.

We plan to have a good weekend though with NO doctor visits!!! This will be our first FREE weekend!!!

Question: What do you LIKE to do on your weekends? What do you USUALLY DO for your weekends? I know how those answers can be so opposite so I figure I better ask both:)

Love, Tracy





May 7, 2004 10:44 AM
Day 92
WBC 4.8

Good morning:)

We had a good, quick trip to clinic this morning. Had a CBC done and then some labs to check her potassium levels and such. The CBC looks good. Her WBC count kind of bounces up and down but it is okay.

The platelets she got yesterday gave her a good boost to 110 so that is nice for the weekend. They will be rechecked on Monday. As far as the other test yesterday they took to look into her platelets, everything looks good that is back already.

Katia is pretty pukey right now so I am going to have to update more later. This drainage in her throat is causing her a lot of grief and she is mad about it (she should be) so have a good weekend. I will be back later today:)

Love, Tracy







May 6, 2004 9:55 PM

Good evening.

Well today didn't go quite as planned. We had planned to go to PT at 2:30. When I was getting Katia dressed to go, I noticed a decent size bruise (the size of my thumb) on her ribcage and then I noticed more marks on her and some petechiae (small red spots) on her skin. These usually only occur with Katia when her platelets get really really low. So, I called the doctor. We had just gotten to PT and when she called, she said to bring Katia to clinic right away to get platelets. I think the doctor and I both expected Katia's platelet count (which was 21 yesterday) to be below 10 today since all this bruising was going on BUT they were 28!!! Okay that shocked us that it went up for one and secondly that, if it was that high, why was she just bruising suddenly. She hadn't even been walking or anything during her morning. She was being pretty sluggish really.

Anyway, we gave her platelets and ran some blood tests (should hear back in a few days) checking what platelets she does have.

We had eaten earlier in the day but planned to eat after PT around 3:00 PM.
We didn't get back to RMH until 6:30 PM and then I had some medicines that had been delivered to get into the refrigerator, give Katia her medicines, plug her into her fluids (so she could be done in time for us to leave in the morning for clinic at 8:00 AM) and just so many things to do all at once. We were both pretty worn out. There have been numerous added stresses on us today that I won't even go into but needless to say, I am ready to take a shower and call it a night.

I have never been a big fan of STRESS but right now, I just HATE it. I guess we all do but I just wish it would leave us alone for a while. I promise I will let it know when it can come back and harrass me but just not right now, you know?

Well Katia was sleeping fine earlier (about 30 minutes ago) and then she woke up throwing up. It was a lot of mucus mainly (and her dinner) but I hope that is a good sign her sinuses are draining. She was mad to have been waken up like that. She didn't get anything anywhere except in her little puke bowl so she was at least happy we didn't repeat the mess from last night (me too!).

So, I must say good night and I pray tomorrow will be a better day.

I am off to a HOT shower.

Love, Tracy






May 6, 2004 1:06 PM
Day 91
WBC 7.1

All is well here but just very very busy. Katia doesn't feel well today. She is just blah feeling. We have PT today so I am hoping that will cheer her up. She drank some gatorade last night and then through up so we did laundry at 3AM. That upsets her when she throws up (it got on her blankie and "the brown shirt") so maybe she is down because of that. Of course we washed, dried and got the brown shirt back to her in about 1 hour. She ate breakfast fine (noodles) and just had lunch (pancakes) and she is fine with all of that.

She had her first post-transplant interview today on TV but this will be used later for something more in depth. She was all happy to be outside talking. There were birds and squirrels and she was just all smiles. We have a cardinal nest right outside our window that we are keeping an eye on. Our family has always liked cardinals and it is just neat that they built this nest right here:) Good luck!!

Well, that is all for now. We are about to head out to PT and she is looking forward to that:)

Love, Tracy


PS All good ideas about the Blood Pressures. We are working on a lot of different tactics. Katia is the guinea pig:)







May 5, 2004 8:18 PM


Good evening:) Well all went well today. We arrived at clinic and Katia just didn't want to be there at all. She didn't want to get plugged in, she didn't want to get weighed, etc. etc.

Well she didn't have to be plugged in. The platelet limit for Katia 20 and she was 21 so we get to wait until Friday!!! You couldn't get the grin off her face then:) I was happy. She was happy and we came back to RMH:)

Her counts look good. I don't know her potassium and all of that stuff from today but the ones we did on Wednesday all look good except the phosphorus is still pretty low. Her potassium and magnesium, as well as sodium, is maintaining by giving her the supplements and the fluids at night (these things are contained in her bag of fluids).

I have pretty much got all the medicine giving down to memory and into a routine so that feels much much better:) It was pretty overwhelming to start but I got it. The blood pressure is the hardest thing to me mainly because Katia won't sit still and be quiet. If I tell her to sit still or get quiet, that upsets her which kind of throws off the whole idea of checking her blood pressure since she raises it with her temper. We try:)

Well, that is about it for now. I am about to go check out how the Auctions are going and then get offline. Katia wants me to watch a movie with her.

Tomorrow we have Physical Therapy (PT) so she is looking forward to that:)

Love, Tracy








May 5, 2004 12:08 PM
Day 90 (Moving right along)
WBC 6.60

Well we are on our way out to clinic right now but I wanted to come say hello first. We will probably be over there for a while today because Katia will be getting platelets. She had a long night because her sinuses are really giving her a hard time so I need to talk to them about that plus we are having a very hard time getting accurate blood pressure readings. I am sure all of this can be worked out some how:)

Katia ate 2 breakfast this morning!! She hasn't had lunch though but just to say, she is eating and drinking very good. Pooping is going well. She is just really doing quite well.

She still gets headaches (hopefully just sinuses) but she swears that putting her cloth on her head solves everything:)

Well, we better get out of here so we aren't late. I HATE to be late! I like to get everywhere at least 10 minutes early:)

Love, Tracy







May 5, 2004 12:31 AM

Better late than never, right? Sorry I am so late. All is well here. Myron just left from here. We were watching a movie with Katia and she was so happy to have both of us there.

She said I could wear my brown shirt tonight... but then she asked for it back. I happily changed and gave it to her. I think she was just really trying to be extra nice because I was talking about how nice the shirt is:)

Physical therapy was a highlight for Katia. She really enjoyed it a lot. Her new physical therapist is Charlene and Katia and her hit it off right away. Katia got to swing on some really cool swings (different than most swings) and then she got to use this bike that you work with your arms. There is a plastic skeleton in there which we named Skully:) She wants to visit him again on Thursday. She REALLY did like the new environment and play area. It is all big and padded. There is a huge mirror on one whole wall so she can watch herself play. I think this will be very good for Katia.

When we came back to RMH, we were in the room and I asked Katia to walk to me without any assistance. She did. I was about 5 steps away and she came all by herself, no walker, no hands holding her. She was wobbly but she didn't fall and she felt really good about that. I am glad to see she was happy with herself! I love that little baby!!!

Well, I must say goodnight because I am exausted. We stay very busy through the day believe it or not. I never seem to stop. BUT that is all okay!!!

Love, Tracy







May 4, 2004 12:12PM
Day 89

Good morning.

We had a good night. Katia woke up 3 different times soaked. She is on fluids at night and regular baby diapers are just not doing the trick. I need to find some larger ones like for kids.

Other than that, her medicines are all going well and she is improving a little each day with being up more and more and more active.

Today we have physical therapy to go to. That is in a little bit. I need to find out where I am supposed to go but I wanted to get on here and update. Katia definitely keeps me busy especially in the mornings and evenings. The middle of the day gives me more free time to catch up and prepare meds and stuff for the evening:)

So, I will be back to tell you how physical therapy went with Katia:)

Thank you to all of you bidding! I can't wait to see her has the winning bids on the items. Love, Tracy








May 3, 2004 10:45 PM

Good evening:)

We had a nice and slow afternoon. Katia and I took a nice long nap, watched some movies and had popcorn. I love being able to spend time with her without so many interuptions and she definitely enjoys our one on one time!

Katia said she wanted to watch one of MY movies and eat popcorn. That was a FIRST. Normally we watch ALL Katia movies.

We couldn't go outside today (rain, rain, rain) so we just made the most of being indoors. Katia was on the local NBC and WB news tonight so she got to watch that on a TV here in a livingroom we can lock off for a short bit. They were updates about her "ESCAPE"!

Neither is available online for viewing. The next big thing will hopefully be the day she GOES HOME!

So, that is a summary of our fantastically boring day! Boring is good, great, awesome!

So, tomorrow we have Physical Therapy later in the day and hopefully Katia will be very agreeable with the new Physical Therapist and do what she is supposed to do. She did realize she can crawl on her knees today so she got herself around that way in the room. Normally she just has to be picked up and taken from point A to point B or I have to prop her up next to the bed and she will walk around holding onto the bed. Crawling is good exercise for her legs too and we were having fun crawling around together (I wouldn't even TRY to picture that!) All I can say is, as a parent, you do whatever it takes to make your child happy:) She was happy.

Well, I will be back tomorrow. Have a good nights sleep. Love, Tracy








May 3, 2004 11:30 AM
Day 88
WBC 4.9 HGB 11.9 PLT 46

All went well at clinic today:) Thank you, God! I am so glad Katia didn't need platelets even because she got to get in and out of there quickly which gives her more trust for our upcoming visits. She just kept asking all morning if we got to come back to RMH.

I don't yet know about her potassium, sodium, magnesium and other levels but all of what I do know looks good. So Wednesday we will get platelets. We can plan on that and take a few things with us to do.

It was pretty hectic going to clinic this morning. It was raining on and off (cleared up right when we went to walk over there-nice) and then the regular clinic has construction going on so we went to another location. Well, there was some confusion at first as to why we were there and did we have to register or not (we did) and then finally it all got worked out. I am sure Katia was happy to see Mati (our transplant coordinator) and Dr. Petrovic today because there were no familiar faces to her. Although she didn't say much, I know Katia was okay with the appointment. She walked to go get weighed and measured, they drew labs, looked her over from head to toe (skin looks good) and we were out of there:)

As you can see from above, the AUCTION is going and will end on May 9th. Katia had fun doing these pieces because she got to do them in freedom!! She does use a lot of paint though but they somehow end up looking quite nice. She will put a surprise, in the ones that open, for the winning bidders:)

So, we are going to have a quiet day (it is raining a lot here today) and hopefully have a good day tomorrow with Physical Therapy. She has a new Physical Therapist and we will go to a new location for that also. Katia is doing well with being flexable to these changes. I am so proud of her:)

Well, I have to do some work online so I better do that before I get cut off (gotta love dialup).

Love, Tracy



*****


May 2, 2004 10:30 PM

Good evening:)

Well tomorrow begins another week so we start off at clinic at 8:00 AM for labs, probably platelets and just a general check over of Katia. She is very full of questions making sure we get to come back here and not to the hospital (poor little thing).

She has had a good day:) I love seeing her smile!!! It is so perfect and pretty:)

Well, right now I am working on the EBAY auction so there should be a link to it in the morning on the page. It is taking longer than I thought to get it going. Katia keeps me quite busy. I have replaced her nurses and room service:) That is okay though.

So, I bid you goodnight and I will update after clinic tomorrow:) Pray that all looks good and we come back here like I have told Katia we will:)

Love, Tracy


250 days closer to home sweet home!!






May 2, 2004 12:45 PM
Day 87

Good morning:)

Well we had a good night and a really nice morning:)

Last night, it stormed here. It thundered so hard, I jumped out of bed! I mean straight out of bed!!!! I hate storms. You couldn't hear them really at the hospital so that was new to me and Katia. She woke up also. It took us quite a while to go back to sleep so we slept in a little today.

She is doing very well with her medicines. I am so proud of her. She got up and walked around the room a bit actually looking for some toy I have no idea what she is talking about. She must have dreamed it.

She got a Video Now viewer yesterday, in the mail, and she has been busying herself with that quite a bit this morning. She likes that she can work it all by herself. She has been watching the SpongeBob episode that came with it over and over and over. She doesn't get bored too easily which is a very big blessing!

She is not liking this manual blood pressure at all. She doesn't sit still too well and she says it hurts her arm. I have to put the stethoscope there so I can listen to it and she doesn't like me having to hold her arm so she whines and moves around which makes me have to do it again. So far, there has been no luck in finding a digital one. Thank you for those who have been keeping an eye out. It needs to be a pediatric digital blood pressure monitor and small cuff for Katia's arm. If you know of one (that doesn't cost an arm and a leg) please forward me the link via my email.

Well, I am going to give Katia her bath and get her up again to exercise:)

Love, Tracy






May 1, 2004 11:16 PM

Hello:)

Well we had a nice day. I must say this is a bit overwhelming at times with all the meds and the fluids but I will get it all under control after a few days. Tonight the little pump for her fluids was acting up but after about an hour and a half of messing with it, it was a bad cartridge, I changed it a it worked! So here I am finally updating. Since I didn't get her started till 10:30 tonight, she will be going until 10:30 tomorrow morning. That is okay though:) We are here and we are happy!!!

She played outside today on the deck and really had a very nice time. She was really laughing and laughing. Myron was pushing her around in a car and she just loved it. Before that we played a few games and sang songs with her and she really gets a kick out of us making nuts of ourselves playing Sharades (however that is spelled).

We will do whatever it takes to make her laugh! I am just so thankful we have been here for over 24 hours and all is well:) Her levels were good today, she looks good, she is eating okay, drinking pretty good but the best part is she is happy and playing. She walks a little bit each day. I can tell it is very hard on her but she is determined! That is the Katia we all know and love.

Well, I better close for now. I was updating some of the prayer request and the drop down menus with updated links for some kids. So I am TIRED! Tomorrow we have no place to go so we get to be around here ALL day! That will be super!!!!!!


Love, Tracy

249 Days closer to home:)







May 1, 2004 12:08 PM
Day 86

Good morning:)

We had a very nice night. Did all of all medicines last night, ran fluids through the night and did our medicines this morning. We had to go in to the lab to have some blood drawn to check her levels and we did that and we are back. Katia is napping right now but she ate breakfast and played a little bit. She is very happy to be here!

Well, I am not going to be on here too long. Myron will be over here soon and I am going to try to organize a few things. I am bumping into things when I look for stuff. I have to aquaint myself with my surroundings:)

Thank you so much for checking in. Oh, remember to check out Creative Memories today. It is free shipping for the 48 states. Today, May 1, is NATIONAL SCRAPBOOKING DAY.

Also here is a little update from Myron today:)

Good Morning Everyone!!! It's Daddybug...
And what a wonderful morning it is!! Yesterday's prison break has brought such happiness to our family that words cannot bring it justice!

I wish you could have seen us walking around... OUTSIDE, looking at everything as though we were seeing them for the first time!

It was almost a spiritual experience.

My little Katia... although still not feeling well, fluttered her little ladybug wings and spread joy all over the place!!! She has regained her laugh! her sweet little smile couldn't be contained.

Thank you God for allowing this so very special moment!!!

I found myself taking really deep breaths, like if I couldnt get enough of the fresh air!

Thank you all for Celebrating this joyous occasion with us.

Tracy is so excited! ever so much closer to home...
Sharayah and Tatiana have been doing the happy dance none stop...

Such a long awaited moment of hope, a recharging of our spirits that for so long have been in a slump.

We pray that there will be no back tracking, and that soon, we will all be together at Home...

My mind wanders today toward the so many other families who pray for a moment of relief such as we are experiencing.
I pray that day will come for you too...

My heart aches for those who are not able to... I so much wish I could change that...

The Katia Solomon Fund, Inc. is made a comitment to be there... and in some small way, make a difference in this huge war against these devastating illnesses.

Well I've said a mouth full today!!
Thank you again for all that you do... Your presence is felt, ohh so much!!
God Bless you always.

Luv, Myron



I will be back later:)

Love, Tracy





APRIL 30, 2004 11:00 PM

LET ME SUMMARIZE...

WE ARE OUT!!!!!!!!!!!!!!!!

I CAN'T SAY MUCH MORE THAN THAT:)

THIS HAS JUST BEEN A SUPER SUPER DAY. THINGS CAME OUT GOOD WITH LABS AND WE WERE GONE!!!! I MEAN IT WAS SUCH A QUICK THING, REALLY:) IT WAS GREAT THAT WAY. NO MORE LEAD UPS AND LET DOWNS, JUST OUT!

KATIA IS SO HAPPY.

SHE HAS HAD HER MAC AND CHEESE AND SOME BREAD. WE TOOK A LONG WALK!! WE PLAYED OUTSIDE. SHE HAS JUST BEEN SUPER! DO I HAVE ENOUGH "!"?

OKAY, I TOOK ABOUT 150 PICTURES TODAY BUT I HAVE SPACE FOR 4. THE COVER PICTURE SUMS IT ALL UP AND THE OTHERS ARE JUST TO SHOW WHAT OUR DAY WAS IN 3 PICTURES...

I AM SURE I WILL BE UPDATING PICS A LOT MORE OFTEN NOW. KATIA TOOK ALL HER MEDS TONIGHT AFTER I (YES, NURSE TRACY) MIXED THEM ALL UP AND MEASURED EVERYTHING. SHE IS ON 10 HOURS OF FLUIDS WHICH IS NOW RUNNING SMOOTHLY AND SHE IS SNORING ASLEEP. I AM EXAUSTED BUT HAPPY:)

SO LET ME UPDATE THE PICTURES. WE ARE STILL WORKING ON OUR WAY HOME BUT...

WE ARE OUT OF THE HOSPITAL, FINALLY!!!!

SO...
THE COUNTDOWN TO HOME CONTINUES BUT WE ARE BREATHING IN REAL AIR AND SLEEPING IN REAL BEDS:)

THANK YOU GOD!!

LOVE, TRACY

248 DAYS CLOSER TO HOME AND FEELING VERY GOOD:)








April 30, 2004 1:00 PM
Day 85
WBC 3.18 (Going up...)

Katia's labs are looking good today so far:) She is getting platelets and having her Pentamindine treatment (which gets her quite pukey feeling). I am glad to see her WBC count coming up some. I was getting very nervous about that. We were going to do a skin and bone marrow biopsy today but we are going to hold off on that, since it was done not too long ago, and wait to see what the counts continue to do.

Katia has been feeling more chipper these last few days and is definitely not being so demanding. She doesn't cry so much as she used to. I do think she is having "hospital burn-out" and her doctors and nurses all know this too. She just really really needs a break. We all do. Our family has just been hit hard lately in a few different ways. Not to say we don't have blessings to count, we do. Things have just been so difficult emotionally, financially, physically. I just wish sometimes I could say, "Okay, enough is enough right now, we need a breather!"

On that note though, I have two prayer request to share with you. One was sent to me via email this morning.

It is for a little girl, Savannah who is in the process of earing her angel wings as I type. Her whole family needs prayer but they specifically want Savannah to be pain free.

Another prayer request is for Angel Brittany's whole family. I cannot begin to imagine how their heads must be spinning. Patty, Brittany's mom, has been going through a very rough treatment for breast cancer and their two sons were involved in a bad car accident this past week. Brittany just passed away this last September after a long battle with cancer. So much for this family to endure but they do so with grace and faith and they could just really use prayers right now.

As always, please continue to pray for everyone. Everyone has their problems and everyone could use prayers. Pray for yourselves and your families. Please continue to keep Katia and our family in your prayers. We could really use your prayers specifically for some emotional and financial relief. Specifically for Katia to get a very very needed break and for her levels to get where they need to be and stay there. I am so ready to be her "nurse" and I am ready to get Katia out of the hospital to see she is improving and she can live and play:) I want to see her playing and smiling. I want to take pictures of her outside. That would just be beautiful.

One thing specific that Katia is really enjoying is painting these little wooden projects like houses and boxes and such. She KNOWS she is good and that we really like to see them. She is very good about being very detailed and not missing spots. She spends a lot of time and takes pride in her work. It is also good exercise for her fine motor skills. She tried to paint a little ceramic birdhouse the other day but she broke it and it got her upset cause it did look pretty but we will stick to the wood stuff:)

Well, I better go. I am doing some laundry and stuff. I told her I would be right back so I better move along and get back to the hospital.

Love, Tracy










April 29, 2004 6:30 PM

Good evening...

Not many news today. I did meet with Infectious Disease and they have a few new ideas for her sinuses but nothing concrete yet. I know a lot of that could be dealt with outpatient also though.

Katia got up and walked 3 different times today!!!! She is really really trying very hard today. I think she WANTS to feel better finally.

She is coughing a LOT and I am not sure why but I am hoping the walking will maybe help that to. We went out on the rooftop playground for a little bit (I will post some of the pics tomorrow when I go over to RMH to my computer) and she had fun out there. She was actually smiling and asking to do things. This is a HUGE improvement for Katia. I just pray the inside of her little body is improving right now too and her WBCs will not go any lower, her platelets and Red Blood Cells will start to stick around longer and her new marrow will learn to reproduce them. All of this is very important in keeping her moving along with this transplant. I am sure everything will happen in its own time.

Well, I am supposed to be eating right now and I haven't. I told Katia I was going to eat. She told me I looked "White". I think she hears I look pale from people and this is her way of telling me. I feel fine though:) I am just very very light:)

Well, I am going to run. Please, if you haven't, keep up with more information on our family at this time and about the upcoming planned auction on the Katia Solomon Fund website.

Here is an update from Jenny with Creative Memories. Saturday, May 1, is National Scrapbooking Day so all things ordered on that day will have FREE SHIPPING within the 48 states. She is doing this fundraiser for The Katia Solomon Fund and we appreciate Jenny so much and all who have participated:)


Love, Tracy

247 Days closer to home:)



April 29, 2004 2:30 PM

Small update. The next auction is in the works of getting up right now. You can learn more about this by clicking here and scrolling down to the auction information.

Right now, we are urgently trying to raise funds to The Katia Solomon Fund. There is a printable flyer that can be printed from the KSF website if you would like to share this with your family and friends.

I will be back later with any new results and maybe (if I can) some new pictures. Katia is TAKING quite a few pictures but not GETTING to many pictures taken. I leave that up to her. She is a little more puffy today in the face, not too sure why and she keeps a cloth on her head (kinda cute, actually).

I will be back.

Love, Tracy






April 29, 2004 9:50 AM
Day 84
WBC 2.66

Good morning:)

First things... I updated all the WBC counts that I haven't been filling in. I am not sure what is going on with them. Today it dropped down in the 2's again? Normal is 4.0 - 12.0 so, not sure what the plan is for that. Her other levels are not back up but they are not as low either. This is like a never ending cycle but I didn't expect the WBCs to start acting up also.

Anyway, I am downstairs in the family waiting area on my way to go have some breakfast in the cafeteria. I thought I would check to see if the computer was available and it is!! So, I wanted to update earlier today.

There is a family down here waiting for someone to come out of emergency surgery and they are really upset. That makes me count my blessings. Although, to me, Katia's case is critical and can always turn for the worse, or the better, today is not one of those days. This is another day of waiting and wondering as to what is going on. Please pray for people facing emergency situations.

Sometimes when I used to be in Walmart (I really love that place) or on the road and someone was rushing around and cutting through traffic or people, I used to tell myself, "Maybe they aren't just being rude or in a hurry, there could be something serious going on in their life." That really helps me to try to be more understanding and not get so jumpy when someone bumps into me or cuts in front of my car on the road. We have been that family rushing to an emergency room or in a hurry in the store because of a phonecall or an appointment time for a CT SCAN or such.

Katia is having headaches right now that won't leave her alone but since we now know her sinuses are still packed, I am assuming that is the cause. She is not a happy person this morning due to that. I want to get her up and active earlier today, if I can. She can't go out of her room in the days because there are too many people around and she risk getting sick to easily that way.

She wants to paint something this morning, so that sounds good:) I am going to try to work on a few more items for EBAY.

Well, someone is staring at me to use this computer so I should go. They are here for the reason of updating webpages.

I will be back later today:)

Love, Tracy







April 28, 2004 8:15 PM

Hello:)

Well some good news finally. Katia's lungs look clear so they are discontinuing the Ampho which is part of the problem with all of these levels being off. She will stay on one of the antifungal drugs to protect her lungs.

As far as the sinuses, her ears look clearer but the sinuses look worse so we are going the doctor is going to talk to pathology and infectious disease to find another alternative.

Katia was in a pleasant mood this evening. We went out on the bridge for a while. She hasn't walked yet today so... I am going to go work on that some.

Right now, Myron and the girls are here so of course that cheers her up:)

I have no ideas really of anything else. I appreciate all of the prayers. I am sure you are praying for my sanity because so far, I still have it:) No screaming on the bridge recently so that is a good thing, right?

I hope to get a cute picture of her soon to get up on the site. I really like her "Thumbs Up" picture. It gives me hope and makes me smile:)

"I love you, Katia."

Love, Tracy

246 Days closer to home...








April 28, 2004 2:15 PM
Day 83
WBC 3.81

Sorry for the late update. I did update last night but I don't see it here...

Things here are not improving it seems. Her levels are coming up but we are finding out her sinuses are worse. I am not sure of how much worse yet. I am also not sure of the chest scan results yet. I am at RMH right now and will head back in an hour or so for an update hopefully. I PROMISE I will update later today with any news. Getting out of the hospital? No idea. I don't even want to try to figure that one out right now. I do know that Katia is in the lowest slump right now and I feel pretty down too right now. I don't want her to get out and just end up back in there with an infection, in a lot of pain or with bad levels.

Her potassium and sodium levels look better. Phosphorus is still down. Magnesium looks better. Her WBC count is falling some so something must be up. It is 3.?? I don't have the labs right here with me.

She needed blood today. That I thought was not going to be needed but she did. Her platelets went from 121 yesterday to 55 today....

Just not much good to say right now. This blood pressure (manual one they sent) is way to hard for me to read so I am still looking for a digital one. If you know of anything, please let me know. It has to be pediatric with a Toddler or large infant cuff. Small child cuff is too big for her.

You see that smile in the picture on the border... I miss that, you know? That is the most important thing in the world to me right now. I want Katia healthy and happy.

Love, Tracy








April 27, 2004 1:19 PM
Day 82
WBC 5.38

Hello:)

Well we are still hanging out at ACH (All Children's Hospital).

Katia is still in her little slump. We went to MRI today but it was cancelled because she was coughing so much that they didn't think it was safe to sedate her. I agree.

Anyway, we can do a CT SCAN tonight and find out most of what we need to.

Her potassium levels are rising but still too low. Her sodium and magnesium are doing better. Her phosphorous also. All of these things are messed up due to some medicines she is on. That is the conclusion. We are going to scan her lungs tonight and if they look good, we will discontinue one of the medicines that seem to be a culpret to dragging down everything else. So pray her lungs are clear. Katia's feet are hurting a lot but that could be due to them not being used for so long and also the steroids can cause that pain. We are trying to walk a little each day. I think she will do better at RMH with that since there is carpet. We will see:)

So, lets see. No luck on the pediatric blood pressure monitor? So, we will use a manual one (I should be a nurse by now) until something else comes up.

Our night went okay last night. Not much sleep but not a lot of activity either. Neither one of us can really sleep. My brain is too active with so many things to be concerned over and I think Katia is both frusterated with the old and nervous about any changes.

Well, I will be back later, of course:)

Love, Tracy

245 Days closer to home....





April 26, 2004 7:00 PM

I thought I should update while I have the chance. Not much else has changed. Katia's levels are still going up and down. Now we need to watch her phosphorous levels also. They are off. I worry about Katia and her state of mind more than anything right now. I worry about the levels of course also. I just hate to see her so unhappy.

I am over at RMH right now and about to head back over to the hospital. I was trying to get some paperwork and bills organized. The auction went really well and I appreciate all that went and looked and those that bid:)

Katia had a lot of fun doing that so maybe we will repeat it with some new ideas.

Well, I appreciate each of you so much and all of your encouragment. I felt like I had been stepped on today and then I go to the guestbook and I am immediately uplifted. Thank you so much.

So, I will bid you each a good and restful night:) Hopefully tomorrow will show improvement.

Love, Tracy

244 days closer to home:)



April 26, 2004 1:50 PM
Day 81
WBC 3.93

So sorry for the delay in update. Things are just hectic right now. Katia is about the same, levels still off. We think we have a way of getting them evened out but are not sure how long this will take. It seems for the most part, it is just going up and down all the time.

Katia is not in good spirits right now, at all. She is getting pretty withdrawn from even Myron and myself. I feel so bad for her because I just can't explain things to her. It isn't worth trying to explain because it upsets her more. I am really hoping and praying this slump will end when we do finally go to RMH. She is getting very picky with who she wants in her room and what she wants to do. Her main thing is to just not be bothered. She has been having quite a few headaches so we will do an MRI tomorrow to check on the status of the eye tumor and her brain. I am just praying all of this is clear. Her sinuses? I am not really sure. We will scan that this week too.

I just wish Katia would smile more and even laugh but I can understand how hard that is for her. I just gave her a good bath and put her in a pretty Disney Princess t-shirt but she just laid back down and said she was tired. She is getting platelets right now, then hopefully I can get her up for a while.

Her legs are so so weak looking and feeling and when she walks, she says they hurt but I want her to walk a bit each day. I think she will build up strength over time. I know she can.

Well, I told her I was going for coffee (that allows me about 20 minutes) so she will be asking for me soon. God bless each of you. Love, Tracy


PS Please pray for Ian. I was sent his link this morning. Ian is fighting Rhabdomyosarcoma and was just found to have 3 new tumors now. His family really wants your prayers.





April 25, 2004 5:50 PM

Okay:) I am feeling much better now. I have had a few hours of sleep and that is exactly "what the doctor ordered".

Myron is with Katia right now so I will walk back over there in a bit. I wanted to update first to say thank you for all of you who bidded at Katia's auction. The auction has completed.

Katia is a sweet little baby with a very messed up little clock right now. She TRIES to settle down at night but right now everything to her is so "not normal". I can't imagine what she must be thinking about all of this. I feel bad when I can't really explain to her and see that she definitely understands what the "plans" are and why she still is there at the hospital.

Things will improve for Katia and she will be smiling again here soon. I can just feel that. Something has to "snap in place" here with her levels. Overall I do think Katia's sinuses are clearing up more and more. We will rescan this week to check. She seems to be able to hear better and a lot more often.

Sometimes people wonder why I don't walk away and let others step in? Well, I am just so used to ALWAYS being around Katia (I have only been away from her a few nights her whole life) and that is just the type of person I am. I do know when I reach my limit and I will take care of myself (like today) because I know I am no good to her or me when I get worn down. I am the kind of person that a few hours of real, uniterupted sleep is amazing! If I am just frusterated but not so tired, I can easily resolve that with a 30 minute break over hot tea. I am definitely one to take a few minutes each day out for myself. I used to always talk about my walks over to RMH. I do that again now, except to another RMH house. I have also begun going to the parent conference room a few times each day and just "escaping" over tea. I used to always do that in the room with Katia but right now, I find it best, to step out. She doesn't mind and it is good for both of us.

Of course, as soon as I walk out, she calls a nurse in (usually someone specific that she has seen in the hall). Katia hates to be left alone, hates it. The nurses have always been good about going in with her and sitting with her, playing with her or talking to her. Katia is part of the ALL CHILDREN'S FAMILY. She has just been around, up on 2SW, for so long that she is just part of their daily routine to come by and visit.

Well, let me get back over there. I miss my little sweetie:)

Sharayah and Tatiana have spent the day with some friends of ours so I am sure they are having a nice time and Myron is with Katia. Some day, soon, we will all be together again but for now, we are

243 days closer to home:)

Love, Tracy









April 25, 2004 11:14 AM
Day 80
WBC 6.21

LONG LONG NIGHT!

Katia's clock is totally mixed up (but she doesn't sleep in the day either). She was up all night and so was I. I am actually about to get some "shut-eye" right now. We were up throughout the entire night. Her nurse was trying to get her to go to sleep, I was trying, then we decided to just stop trying and see if Katia would just give up. NO.

She spent her night bargaining with me about her "button" (like would she get a new one since she is still there), rubbing her head, movies to watch through the night, me sitting up and looking and her (she didn't want me to lay down), etc. etc. I am too tired to remember all of it.

All I can say, is I can usually manage to get through without letting it bother me but last night, I felt like I was at the end of my rope. So, I basically just gave up and decided to come over to RMH and sleep during the day. I guess that equals out in the long run.

Okay onto her levels...

Not so good.

We gave her potassium in a few different forms yesterday and through the night. Yesterday we started out her day with a 2.0 level and ended with a 2.4 level. This morning, 1.8. That is a critical limit for her so we are going to step up the doses. Also her sodium level is a concern. It didn't drop back as low as it was yesterday around 129 but it is down to 132. So, I don't see us going anywhere for a few days. I really hate to say that but at the same time, I am hopeful that it isn't longer than that AND that we don't just get out to be readmitted either. That would be even worse!

Well, I am too tired to really go on and I am going to hopefully get some sleep right now.

I will upate later from downstairs at the hospital.

Oh, to answer some questions. Katia's kidney functions are normal and her urine tests all came back clear except for glucose so we are still looking into why she is dropping so low in these levels.

Love, Tracy

PS THE AUCTION ENDS IN A FEW HOURS:)






April 24, 2004 9:45 PM

Still here:)

We had a decent day today. We went out on the bridge for quite a while and had the whole place, just Katia and me, for about 3 hours. She did some walking and we did some talking and some sulking. I talked to her about her new blood had to be in tiptop shape when we leave so that we don't end up right back in here. I told her that would mean we would have to come back and be in another room at the hospital but for right now, we are still in "Katia's New Blood Room." She seemed to accept that but it was hard to get that cute little smile to pop up. All last night she was upset because I had packed her sippy cups. Well today I looked and looked at RMH so she would have them tonight, no cups. Come to find out, they were in the bag I had with me ALL LAST NIGHT but in a little seperate area. I just couldn't (and still don't) remember putting them there. I am losing my brain!

Another problem we are having is finding a portable pediatric blood pressure machine and cuff. We had one that was sent as pediatric but it ends up not being "pediatric enough". It picks up Tatiana's pressure but not Katia's. Well now it is the weekend and we can't even call around. That is delaying us too. It has to be specifically for pediatrics with a large infant cuff. At the time, I am learning (trying to learn) to do it manually-GO DIGITAL!

On a down note, her levels are not coming up like they should. She has taken both IV supplements and oral supplements and they just keep going back down? Not too sure why all of this is going on. We are making changes here and there and trying to get all the levels of her medicines to work together. One problem was potassium. Normal is 3.4 - 4.7 and hers was like 2.4 yesterday. Problem. Well this morning it was 2.0 and that was after trying to correct it overnight. So we added something else, orally, and gave her another dose through her IV also. Plus it is in her IV fluids. I did finally find a way to give her oral potassium. First, we got a different kind that is granuals. Then guess what I mixed it in? KETCHUP!! She took it with no problem. That got the level up to 2.4 with all we did over the day. Still not there. I am hoping she can get out of here by just doing that twice a day once we get the levels up. Hopefully that will maintain them to stay where they belong. Another problem is her Sodium Levels. Well, we got them to go from like 127 up to 131 (normal is 138-145 ) but then they came right back down to 129? Not sure what we will do about that yet. First we have to get it where it belongs and THEN figure out how to maintain that. The third level off was magnesium which was okay by this morning and we also gave her an oral dose of that to see if it will maintain.

All of this is just a lot of waiting and wondering and trying new things. Katia even offered to eat a banana and she did eat half. She is really trying to do whatever I ask of her. I was giving her meds tonight and she was gagging. I told her to let's wait a bit so she wouldn't throw up and have to repeat them all. She said, "Mommy I won't throw up, I promise." So we finished it all and after a little gagging, she held it down.

I want to throw her a big party sometime because she is just so brave!!!

Well, I am tearing up so I better close this out. Just please pray we can straighten out all of these levels. Not just for the fact that we want to leave but also for her wellbeing and overall health to maintain her donor cells and protect her new marrow.

Thank you for all the encouraging messages.

Love, Tracy







April 24, 2004
Day 79
WBC 6.48


Well not much word of what is going to be going on today. All the sudden today, her potassium bottomed out even lower so...

Katia is in a pretty low mood today. She was very unhappy all night and wouldn't sleep. She wanted to have her pain button back and be plugged in. She hates being unplugged from the IV poles and she likes to see a lot of medicines hanging up there while she is there (weird, but hey-that has just been her life).

Anyway, this morning one of the other doctors came in and is pretty much making it sound like Katia will stay in throughout the weekend, at least. I haven't talked to Dr. Petrovic yet. Katia will have some more oral medicines added, ones that she hates. I am going to just have to figure out a way to work them into her daily routine without her getting the point she won't be able to keep all her other medicines down. That is a big problem with Katia. Once she throws up, her gag reflex is very easily triggered. If she starts throwing up her medicines, then she can't leave the hospital or we will have to do the G-tube in her belly for medicines.

Oh, everything was perfectly good yesterday and then all of this came up. I knew things could change but I really didn't think we would run into all of this.

I am just thankful there is nothing critically wrong with Katia. All of this is workable but just takes time.

Well, I will try to update again when I get the chance to let you know what the plans are. For now, just pray these levels stabilize and pray for Katia to not be so miserable. I am okay. I just want her to be healthy and happy. I can roll with the puches but she doesn't understand too well why everything suddenly changed.

Love, Tracy







April 23, 2004 8:30 PM

Well we are still here and will at least be here overnight. It all depends. Katia's sodium, potassium, and magnesium levels all dropped so we have to get them back up. If they stay low, she can have seizures.

This is probably caused by the medicines she is on and the decrease maybe in her IV fluids.

So, right now, Myron and the girls are still here. We had everything out of the room, pictures off the window, even sheets off the bed. There was a newsteam here (the hospital's) to film Katia's departure and we just all had to wait. We tried to give her a bolace of fluids to raise the levels but it didn't work. I felt bad with everyone just waiting around BUT everything happens for a reason? Maybe Katia wasn't ready today.

I don't have my laptop here (yes, I already plugged it in at RMH) so I will have to update when I can tomorrow with the lab results and what the plans are.

I am really hoping we can leave this weekend BUT at the same time, I don't want to leave to just come right back so we have to fix this problem.

Thanks for all of your well wishes and happy messages. They still made me smile:)

Love, Tracy

241 Days closer to home:)





April 23, 2004 10:40 AM
Day 78
WBC 4.40

Good morning:)

Tomorrow morning we will be at RMH waking up. We still have to come over here to the floor tomorrow to have some labs drawn. Katia's potassium is low today.

We are getting everything finished up. All her prescriptions are in the process of getting filled, her room is packed and sometime late this afternoon, we should be on our way:)

Katia is in a pretty miserable mood right now. She doesn't deal well with change. She doesn't like her room being cleared out and she doesn't want to leave her bed or her button. I think once we get her over to RMH she will be happy.

I am sure there will be a lot of tears leaving here and not just from her.

Well, I have to cut this short. There is still quite a bit to do. I have to go pick up a prescription that had to be filled at another hospital. It is her pain medicine (can't be without that).

Oh, some good news. She did have 2 good poopies last night so she is leaving here in good condition for that matter.

Her sinuses will be scanned next week to see how they are doing. She is still having plugged up ears.

So, I will be back:)

Love, Tracy






April 22, 2004 10:00 PM

Good evening:)

Well, I have been a busy little bee today. A lot of information and organizing things. I am going to have to get myself into a routine and then I can breathe. I figure after doing everything about 5 times, I will have it down to an art:)

I made up a webpage about Katia's Post-Transplant Guidelines and Care so that you can click on it and just see the restrictions and medicines that are involved.

I am so so so looking forward to getting out of here tomorrow. I have to say that I love All Children's Hospital and all of its staff. Really, they have made this a better time than it really should have been. Everyone has been so helpful and friendly and just plan terriffic. They listen to my babbling:) They answer all my millions of questions!! They are so sweet with Katia. They show tons of care and concern for not only Katia, but also myself and my family.

Then the people at the Ronald McDonald House have always just been super. I would say they have been like MOMS to me but they would probably clobber me AND they really aren't old enough to be my MOMS. But, they have just really looked out for me. They too have had to listen to a lot of babbling. The West house (which is where we are going now) hasn't really had to deal with me too much, YET. But, the East house has had me around quite a bit:) So, now we are going WEST!

Then, I have to say thank you to each of YOU. It isn't over yet though, far far from over. I have a lot more babble for you:) We still have to "do our time" away from home and some day, some sweet day, you will finally hear that we will return home. But for now, we go on to our next adventure and get Katia yet another day closer to home.

Well, I have to close this. Katia is having quite a bit of butt pain and I don't want her to think I am ignoring her.

I couldn't have done any of this if Katia wasn't the type of baby she is! She is super and a great companion. Very funny, so easy to love and just a joy to be around. She is so easy to take care of and she loves to tell me that she loves me so I get that reward many many times each day. I am grateful she can tell me that:)

Love, Tracy








April 22, 2004 1:45PM
Day 77
WBC 4.54


WHY AM I SO LATE? WELL WE HAVE BEEN BUSY BUSY BUSY!!!

GUESS WHAT!!!WE ARE GOING TO RMH PROBABLY TOMORROW. THAT IS A PRETTY DEFINITE THING:)

FINALLY BUSTING OUT OF THIS JOINT AFTER 8 MONTHS!!

WE WON'T BE ABLE TO GO HOME FOR ANOTHER 4 TO 6 WEEKS LIKE I THOUGHT AND WE WILL GO TO CLINIC MONDAY, WEDNESDAY AND FRIDAY MORNINGS.

OUR COUNTDOWN TO HOME HASN'T ENDED BUT I AM SURE THE DAYS WILL GO BY A LOT LOT FASTER NOW:) I AM SO HAPPY. I AM TRYING TO CONVINCE KATIA OF THE HAPPINESS ISSUE BUT I THINK SHE IS JUST UNSURE RIGHT NOW. I MEAN THIS HAS BECOME HOME TO HER SO TO HER IT IS LIKE WE ARE MOVING. I HAVE TO SAY, I AM QUITE NERVOUS TOO ABOUT HAVING HER AWAY FROM THE HOSPITAL AND THE DAILY BLOOD LEVEL CHECKS BUT THAT IS WHAT WE DO TO GET CLOSER TO HOME:)

I CAN'T WAIT TILL TOMORROW!!! I AM THINKING IT WILL BE EARLY EVENING BEFORE WE GET OUT OF HERE.

SO, I WANTED TO JUMP ON HERE AND LET YOU KNOW THE GOOD NEWS.

I DIDN'T WANT YOU TO WORRY AS TO WHY I HAVEN'T UPDATED. ONCE WE GET OUT OF HERE, I WILL UPDATE AT LEAST ONE TIME A DAY, MAYBE MORE BUT I HAVE TO GET SET UP AND SEE HOW THINGS GO.

I AM NOT GOING TO MISS THE BEEPS IN THE HOSPITAL AT ALL. IT IS GOING TO BE SO QUIET AT RMH. BUT WE PLAN TO DO LOTS OF CRAFTS, PLAY AND JUST GET SOME CHANGE OF SCENERY:)

LOTS OF LOVE,
TRACY:)


240 DAYS CLOSER TO HOME:)


********



April 21, 2004 10:30 PM

Good evening:)

Well, we had a good day, not as good as the last few but things are remaining stable and moving along. I am very pleased with her WBC count.

RESULTS:

Well the skin biopsy looks very good. Just a little bit of a trace of GVHD of her skin so things are improving there and she continues to wean from her steroids. She has switched from IV steroids to PO (by mouth) so I am not sure if that change will make a difference but she is doing well.

The platelets, not too sure. The test wasn't very clear but it doesn't look like they are there yet. That isn't too unusual though. But, she did go 4 days this time in between the need for a platelet transfusion so at least they are holding better.

I am hoping to get out of here maybe in the next few days but I don't want to say anything and then it get messed up so one day you will just see, "UPDATING FROM RMH" and that will be another step closer to home.

Well, other than all of that. Please pray for Casie. She has Influenza 3. I guess that means a really bad cold but the treatments are pretty tough. So, pray for her. She thought she would have a few days break at home. I feel so bad for her. She had all her stuff packed to go and then this...

Well, I am going to get to bed. I am so so tired right now. There has just been so much going on lately using my brain and my energy and I need to recharge:)

Good night, sleep tight and don't let the ladybugs bite:) Don't worry, they won't!

Love, Tracy








April 21, 2004 11:30 AM
Day 76
WBC 6.20

Good morning:)

I am so sorry these updates are running late into the mornings but for some reason, either Caringbridge or AOL's access numbers, are really giving me a hard time.

Well, still no results. I did see Katia's transplant doctor pretty late last night (she practically lives here- we love this doctor!) and she was headed over to the lab to see the samples under the scope. Her name is Dr. Petrovic. She is newer here, maybe since about January, and she is just wonderful. She really takes time to talk to the parents (I have never had a problem with the other doctors) and she is so easy to understand and doesn't seem to be in a rush when you talk to her. Dr. Petrovic is very patient with Katia-which takes a lot sometimes and Katia really does like her, even though it doesn't show all the time. Dr. Petrovic is one of these doctors that covers all the bases with all the "What ifs" and "What abouts" so she is always a step ahead of me on figuring things out. I appreciate her time and dedication to her job.

I will come back with an update as soon as I know though. One of the transplant kids went over to RMH late last night and then hopefully we will get out soon and head over there too. I am basically packed. I wanted to just organize but I decided to pack and live out of my plastic bins:) It feels good to feel so ready. A lot rides on these results and Katia switching to the last few meds by mouth. I think she will do fine.

Well, that is about all for now. Thank you everyone who has been placing the bids on Katia's Auction. It is for a very much needed cause right now and we really appreciate your help. I have an idea that Katia and I can work on in the next week or so. She is excited about it but I have to get a few things together to do it. Then we will put that up probably the last week in April or 1st week in May:) I bet you can't guess what it is...


Well, Katia is very sleepy headed today but she has taken all of her medicines this morning. She needs to pick up on her eating. Her appetite has dropped way down and she has lost some weight, about a pound in the last 2 days. So, she needs to pick that back up. Pray for her on that.

What does Katia want to do at RMH?

1. Bake cookies (she likes the ready to bake cookie squares with the sprinkles and such)

2. Watch me wash clothes (okay?)

3. Eat Macaroni and Cheese

4. Draw, Cut Paper, Glue things and paint

5. Take Polaroid Pictures

6. Sleep ( I so agree! )

7. Watch TV

and her list goes on and on.

Well, I better post this.

Love, Tracy












April 20, 2004 6:15 PM

Well, we have had a busy day but no results on the biopsies yet? No sure why. Anyway, I walked over and saw the Ronald McDonald House's Transplant rooms:) Very nice. They are like a bedroom and bathroom combination. Katia will have a crib to sleep in and I will have a DOUBLE BED!!! Oh mercy, what am I going to do with all that sleeping space. Katia likes the idea of the crib which is good. I really don't want to risk her sleeping with me and getting sick (not that I am sickly).

Anyway, hopefully not too much longer here. It is going to be a big adjustment and I am now ready for all the changes!! I am so excited and so is she. She wants to leave her bed and she understands her faithful pain button stays with the hospital. She will have oral pain medicines though.

I am going to have to get groceries and diapers together for us. Those are the main things. I haven't had to buy diapers for quite a while and now she is larger than she was (not many transplant kids can say that) but she is puffier due to steroids too. Her appetite is still pretty tremendous so I will have to be ready with quick foods that she is allowed to eat. Of course, her rice pilaf. She asked me if they had Bread and Butter over there and Rice Pilaf. I think our minds are on different things.

There will be a small living room area, play area and a kitchen that we can block off when we want to use it. I will be using a lot of clorox wipes everywhere we go. I DO NOT want to end up right back in here!! I am praying Katia gets out of here in the next few days and STAYS out of here!!!!

Oh, I am so excited! Everyday we countdown (or count up) feels like another day closer to home now. I am seeing the light at the end of this long long tunnel and that light is PRETTY!

Well, I have some organizing to do and Katia is asleep so perfect timing!

Love, Tracy

PS I will update later tonight about any results.






April 20, 2004 12:30 PM
Day 75
WBC 6.18


Good late morning:)

I tried to update earlier but it wouldn't go through. We just got back from Katia's bone marrow aspiration. All went well and we are waiting for some results on the skin biopsy and what is going on with her platelets. The rest will take a week or so to get back.

So, I can't update long right now. I have to order Katia her food and get some medicines down and then hopefully we are going to play some. The skin biopsy was taken from her leg so hopefully she will feel like walking still. I think she will.

Thank you so much for checking up on Katia. I was telling some of the nurses how many friends Katia has that check on her everyday, some a few times each day. God has really blessed us with a lot of friends that love and care about Katia so much.

If you haven't already, please send your picture for Katia's scrapbook. We are really enjoying putting names with faces. I get emails from people saying they don't sign much so do we still want a picture? Yes, of course. If you care about Katia, we want to see YOU:) I also get emails from people who don't feel comfortable leaving a message in the guestbook because they feel like it is just for family and close friends. NONSENSE:) You are our friends! So, we love to hear from you, about you, how your family is and such.

So, let us hear from you and PLEASE send your picture for the scrapbook.

I am changing the address to use though to Katia's PO BOX address. Since we will be going to RMH soon, I want to go ahead and start using the PO BOX from now.

Katia Solomon
PO BOX 22375
Tampa, FL 33622

We will still get things sent to the hospital though. They will forward it to us.

Thank you so much for the mail and packages and donations to the Katia Solomon Fund as they are all very appreciated. Everything that we get is just so appreciated. We love your postcards and cards and stickers, crafts to paint, donations, each and every thing. Katia is very into her socks right now and her T-shirts. I love when she wears a T-shirt from a specific state or city. I always tell people, "Katia has a good friend there." We have had so many reach out to Katia that our hearts are just full of love and gratification for each of you. THANK YOU. THANK YOU. THANK YOU!!!

I am really still hoping to go home some time in June. I had to change that from May to June but Katia is doing well and we are very very thankful for that even though we aren't home yet. God has blessed us throughout all of this so much.

We love you.


Love, Tracy, Katia and the whole Solomon Family!



PO BOX 22375
TAMPA, FL 33622

That address is good from now until forever:)










April 19, 2004 10:15 PM

Hello :)

We had a very nice day today again. Katia and I went out on the rooftop playground. We couldn't go out in the sun so we just enjoyed the breeze in the picnic area. Our first trip out there was cut short due to a birthday party out there but we went out again about 5:30 PM and it was even better. No sun and the breeze was perfect for Katia. She walked around and visited the little playhouses. I pretty much have to always hold her hand or she has to have her walker but she is doing a lot better! If she keeps this up, in two months, she will be very stirdy, stable and strong:) I can see it!!! She is really really trying. She fell down a few times even while holding my hand and that is every embarassing to her more than anything because she looks around to see who saw her. The worst thing someone can do is say something like, "Oh, Katia are you okay?" But, the nurses up here know better than to make a big fuss over Katia.

Well, tomorrow is a big day. We check her marrow again and we are looking to see what is going on with her platelets and to make sure she is still 100 percent donor (or 99.9 percent should I say). Katia looks good, she is eating good and her blood counts looks decent:)

So please pray for tomorrow's results to show the following:


1. No Leukemia Cells

2. All donor cells

3. Platelet marker cells


Also, since she will be sedated, we need to look at her bottom because she has been having alot of pain there. I hate to hear her crying in pain.

Thankyou for all of your prayers. You see how well they are moving Katia closer to home each and every day:)
Please pray we go to Ronald McDonald House very very soon, do our 4 - 6 weeks there and get home. I would really like to be home early June:) That would be nice.

Day 237 away from home, BEHIND US:)

Love, Tracy








April 19, 2004 9:15 AM
Day 74
WBC 4.16


Good morning:)

Let's see if we can have some fun today also:) I enjoyed seeing Katia so happy yesterday. Right now she has been coughing and coughing. I am not sure if sinuses are draining or there is more to it but I am not going to worry about it too much. She just had a scan done that looked okay.

She is about to have "Breakfast" which is a PBJ sandwich and Rice Pilaf. I don't know how I am going to do her "food supply" when we get to RMH. I am going to have to somehow get to the grocery store and figure something out. Things that are easy to instantly prepare like Instant Oatmeal, RICE PILAF, Kids Lunchables and Toddler Meals, some quick stuff like that. I am sure once we get settled over there and I have my groceries and supplies and all her medical stuff together, I will get into a routine. Myron said whatever I set my mind to I can do. "Thank you, Myron."

Hold on, medicine time:) Be back...



9:40 AM

Okay, all done. Katia is such a good girl. She had all her meds, including the yuckies, Cyclosporin (that is an anti-rejection drug she gets) and she takes all of it well:)

Well, I am off for coffee and some oatmeal. That is my way of starting my day. Katia says she wants to go outside today so I told her to tell her doctor. Her main doctor is Dr. Petrovic and Katia just really likes her. Dr. Petrovic may not know how much Katia likes her because Katia gives her a hard time most of time but when she isn't here, Katia talks nice things about her. Right now, they have a SECRET together and Katia just thinks that is super!

Love, Tracy







April 18, 2004 10:07 PM

SMALL UPDATE BELOW THIS

We had a very nice day today and I am working, right now, on putting some new pictures up:) I am not going to say much more because the pictures speak for themselves:)

OKAY:) IT TOOK ME TWO HOURS (LOTS OF INTERUPTIONS) BUT WE HAD A GREAT DAY SO ENJOY THE PHOTOS:) KATIA WAS ALLOWED TO BASICALLY ROAM THE HALLS TODAY. THERE WERE PEOPLE OUT ON PASSES AND THERE AREN'T ALOT OF ADMISSIONS SO THERE WASN'T MUCH ACTIVITY IN THE HALL. WE KINDA HAD THE PLACE TO OURSELVES!!WE HAD A VERY NICE TIME:)



Love, Tracy



April 18, 2004 10:14 AM
Day 73
WBC 4.00

Good morning:)

We actually had a full and good night of sleep. I got up and thanked Katia because she woke up ahead of me. She was so sweet:) She said she was being quiet. Isn't she adorable!

I really thought I updated yesterday evening but I guess I didn't come back by here. See why I need the sleep?

Well, I feel better and Katia looks good. I am waiting for her labs to see how her platelets are doing. She had a transfusion yesterday and I hope they stayed in there. I hate when they just drop right back down.

Well, I will update when I have the labwork.

Pray for Katia's bone marrow aspiration this week that all looks good in her marrow. That will clear us for another month.

Love, Tracy

PS Please pray for Kelly as she is on a ventilator. Her lungs are filled with fluid and it seems the pneumonia is winning this fight. So let's just pray that she will start improving, rapidly.








April 17, 2004 4:15 PM

SCAN RESULTS...

Okay, the sinuses seem to be breaking up a little so that is good. I wish they were a lot better but a little better is better than them being worse. They have discontinued one of her antibiotics now. The Gatifloxican. The chest doesn't show that spot anymore but there is a little "fogginess" around the site where her lung surgery was done. That can be due to inactivity. We are going to keep an eye on all of this through scans. Her ears are a little less plugged but still has quite a bit of fluid in them so... Not much better but no worse:)

Katia is so funny....Here is a funny little story. Katia hates to be FREE right now because she doesn't want to walk or get out of bed. She LOVES her bed. Well she knows the only way she can't be free is if she is having a medicine run through her broviac. So, now she is always saying, "I want a LOT of medicines. I don't want to be free!" Okay, does that not sound opposite your typical 4 year old? It just cracks us up. She is going to have "Hospital Withdrawl" when she gets out of this place.

I have been pretty stressed out today going over a lot of paperwork and bills and such. I told Myron last night that I really miss just laughing! Whenever I get home, I am going to rent some good comedy movies and have a "Day of Laughter". Things are just really stressed right now and we have so many things to figure out along with the typical household bills and groceries. I just can't wait till things slow up, I am home, and Myron can return back to work. Work is going to seem like a dream after all the stuff he has had to take over, by himself, at home. This is just all so much to deal with and it really does catch up with us a lot more now than it used to. Everyday things that seem like they should be more insignifant during these times seem to cause so much more stress than the big things. Where is that "World Gets a Break Day"?

Okay, I have babbled on enough:) It does feel good to just babble sometimes. Maybe I should get a radio show job. YIKES!

Love, Tracy








April 17, 2004 8:00 AM
Day 72
WBC 3.74

Good morning:) Katia's heartrate came down during the night back to normal. She actually had a bowel movement and then shortly after her heartrate went down so two good things happened nearly at the same time. I am pretty sure it was due to the two treatments she got yesterday with the IVIG and the Pentamindine but also the fact she was probably holding in some pain. BUT, I am glad it is back to normmal:)


Wow, the auction is going great! If you haven't dropped by yet, please do by Clicking Here and going down the page till you get to the part about the auctions:) Katia wanted to do some painting yesterday but I held off on it because it was hurting her to sit up so I didn't want her to start on something that was going to be causing her pain. So she just "kinda" sat up and played cards with me. It was fun anyway.

Well, I am going to go get some coffee made up and get me some oatmeal:) That is the best way to start my day. Katia can't eat this morning. She is having her CT SCANS of her sinuses and chest to see what is going on in there (hopefully it shows she is more clear). I should know this afternoon what it shows. She will also need to get more platelets today. Next week they will do another Bone Marrow Aspirate to check her Marrow and make sure she is doing good and also try to figure out why her platelets are dropping more often. I am not sure yet what day. That has to be lined up with ICU so I am pretty sure it won't be on Monday.

Have a good Saturday:)

Love, Tracy








April 16, 2004 10:55 PM

Sorry it is so late but I am going to just do a quick update. Katia's heartrate is kinda racing right now in the high 160's and into the 170's so we are dealing with that. Could be due to some medicines she is on but not really sure.

She didn't have too great of a day due to butt pain. She did however sit up for a while and play "Old Maid" with me (she had to win each time) and then we did some shape and color recognition games. She did very well with them.

Well, let me cut this short. They are calling the doctor so I want to be done when they come back in here. Pray for little Katia:)

Love, Tracy

PS Please say a prayer for Casie. She hasn't been feeling well today and now has a fever.










April 16, 2004 8:50 AM
Day 71
WBC 4.07


Good morning:)

Well, Katia's platelets made it through the night. She is at 22, the transfuse at 20 so tomorrow. That was the big thing for me today to see if they held. They usually drop in half each day and that is exactly what it did. I am so glad because today is a long 5 hour transfusion of the IVIG and I want her to be able to get out of bed sometime. She wants to paint. So, that is what she can do while the transfusion goes in. I am glad she found something she really likes:) That makes me happy.

The auctioning is going well. I am really surprised by that. Not that I don't know Katia is a budding little artist but just how the bidding is going on. Katia is very proud of her accomplishements and she had fun. That is what matters. "Thank you, Lin for the idea of auctioning Katia's masterpieces. As long as Katia is having fun, I will keep adding stuff or maybe plan to do this once a month for a while with different pieces. When I was taking the pictures of them to put them on EBAY, Katia told the dinosaur to smile. I thought that was funny. AND the Treasure box has a little sticker ladybug painted into the top of it. She said, "It has to have a ladybug". I thought she meant a live on inside but she pulled off a sticker and stuck it there. Finishing touches I suppose.

Katia hasn't taken her medicines yet today. She knows they are on their way in just a while. She is very smart about what is expected of her. I would figure she would start arguing with me but she doesn't. She actually just wants to get it behind her and be done with it. After she takes her medicines, I brush her teeth. I can say, she has very very clean teeth:)

Well, I am going to close this up. I know her breakfast (Rice Pilaf) is about to get here and I want to be ready. She wants to paint "a house" today. Doesn't that sound funny? Anyway, I am going to go track something down for her. Maybe a little wooden house of some sort. She is very precise when she paints. She wants to fill in every area with paint and not miss a spot so it takes quite a while to finish something. But, what else does she have to do right now?

Oh, medicine time.

Love, Tracy


ADDED: Just a reminder. Today is the last TAX FREE day at CREATIVE MEMORIES scrapbooking site. Thanks Jennifer for offering this. I am sure it is very appreciated at "Tax Time" by many people.










April 15, 2004 10:30 PM

Hello:)

Well we are having a bit of a medicine problem tonight. Katia took them all and then threw them ALL up so we had to start over. The problem is they are so necessary that they have to be repeated. She turned on one of them so we are going to have to figure something else out. She "refuses" that. BUT she has no choice on the rest. She is up to about 8 to 10 medicines two times a day right now. Maybe more. I haven't counted lately. All I know is it is a lot for her to manage especially since she doesn't really understand WHY they are so important.

Her belly and bootie are still bothering her but she is plugged back into her pain medicine and seems to be more comfortable. I told her since she took all medicines TWO TIMES she could pick whatever movie she wanted so we are watching BOB THE BUILDER:)

I showed Katia her pictures on the computer tonight and I told her she has a store. She was happy:) Then the nurse came in with her last two meds... Goodbye happiness.

She is so sweet. I can't stand to see her unhappy or upset but most of all, sick and not feeling well. I sometimes wonder what made God think we could handle this but then I realize, God knows best. I don't believe that people have to go through this because of anything they ever did though. I think it is more of a blessing being entrusted with such a gentle and important opportunity to give extra love and care and patience. I know that is a weird way to look at things but it does help me get through this.

Someone here one time asked me how I could walk through the hall with a smile on my face. Well, I think probably something funny had just happened but also I believe in TRYING to make the best of a bad situation and try to make others around me not feel like they have to pity or feel sorry for me.

We definitely have our struggles and our very trying times but I know God is right beside me, helping give me strength. I never feel alone in this.

Our family has met some, actually a LOT, of very wonderful people throughout these last years of going through this. We have learned so much from so many we have met. I learned from a Mom, Jane, that I met up here just a few days after Katia was diagnosed, that you have to take things in order of importance. She didn't tell me this BUT she lived this. If your child gets sick all over the room and makes a huge, disgusting and smelly mess, just get it cleaned up as best you can and don't let it beat you down. You know why? It will happen again and again. Jane and I ran into eachother enough in the hallway, on the way to the linen closet, to know we were fighting the same fight even though our kids were 16 years apart. I cannot begin to count how many beds I have changed since this began but I do have to say, I think of Jane alot of those times and her sweet son, Angel Robert.

Well, Katia is going to sleep and her medicines have all stayed down:) So, I should be calling it a night also.

Thank you for those of you visiting the auctions above. It really means a lot to me. So many of you share in my love for Katia. I think I would have fallen in love with her too, even if she wasn't mine:)

"Sweet dreams, Katia."



Love, Tracy








April 15, 2004 5:45 PM

Well all is well here. I just wanted to come post the information about "Katia's Auction". She is enjoying this painting and I think it would be a nice way to earn money for THE KATIA SOLOMON FUND plus give people the chance, who may want, to have some stuff done by Katia herself.

Now about Katia...

Katia's butt is giving her a lot of problems today so we are trying to work out another way to get more activity out of her that will help this problem.

I am going to cut this short because Myron and "The Kids", as Katia calls them, are almost here:)

Happy Bidding.

Love, Tracy










April 15, 2004 8:30 AM
Day 70
WBC 4.19


Good Morning:)

Long night...

I am not going to go into why the night was long because I don't want to sound like I am complaining. I really have to tell myself that over and over. Thank goodness she is well enough to keep me up:) Right? Yes.

Today is 2 years since Katia was diagnosed. I can't believe how much has gone on during the last 2 years. It didn't all start two years ago like most people would think. In January 2002, Katia started with the tumor behind her eye so we had a lot of appointments with just that. THEN in April came the news of Leukemia. At the time we were dealing with the fact she had Leukemia. By the time we heard that, it was more of an answer and explination to all the other things that were going on with her. Bruising, paleness, so easily to get sick, etc. I wish now that I knew more back then about just asking her pediatrician to do a CBC (Complete Blood Count). I wish I had known how long she had Leukemia before we knew about it. I get a LOT of emails asking me about symptoms. People that are concerned of how their kids are looking or acting. All I can say is the first thing that should be done when things seem to be "not so ordinary" is a CBC. Don't ever be afraid to ask for that from your pediatrician. Our blood tells doctors a lot about us. A few of Katia's symptoms just wouldn't go away. Bruising was a very big issue with her. It looked like she was rolled up and down stairs or something. But that was written off as her being a "typical active two year old". In my heart, I knew Katia was nowhere near that active but I didn't know what to ask for. Another thing was just sores that looked like bug bites but I knew she wasn't getting bitten by bugs. She would also just get very quiet at times and turn bluish around her mouth and finger tips. She would get very sick with just a common cold. I could go on and on. These symptoms alone wouldn't have seemed like much. But, she had ALL of them for quite a while.

Well, now is a whole new day because she has her "New Blood" and she is on her way to a great recovery and another chance at life! It is a lot harder than even I imagined. I didn't think she would get this weak but she is and we are working on building her strength back up:) I am determined to see her run around (slow as it may be), playing with a ball in her back yard over the summer. That is my goal!! I want to see her WANT to be more active. Right now she is very content spending all day in bed.

Let me update about Casie. She walked, yes walked down here last night to tell me how she is doing. She did have her lung surgery. Two incisions. So far it is looking like just scar tissue and nothing more serious. That is great. As it looks right now, she will begin her countdown to transplant on May 1st, her mom's birthday and have her transplant on May 11th, which is Casie's birthday. She likes the idea of having it on her birthday. That is pretty unique that her "New Birthday" will be on her birthday:) What a great present. It seems they will be using a 4/6 cord blood for her. She looked better than I expected yesterday when she came down here. Casie is a very strong person with a great heart. I know being stuck in a transplant room for a long period of time isn't going to be easy. She is very energetic and outgoing. She is getting into scrapbooking and a few other hobbies to try to help pass her time while she is "locked in". She wants to update her page but it too weak and tired to really sit up and type. So, she asked me to update you:) "Casie, we will praying that your time will just fly by:)"

Well, Katia's breakfast is here. I am going to start trying to build up some stock on her "groceries" to get us through our days at RMH. I am starting to send home more of her stuff and try to just keep here the few things I will take to RMH. The room over there is small and I don't like being cramped cause I like to keep things open and clean:) Katia's doctor is going to go over there tomorrow to see the setup of the transplant rooms and how the cooking and stuff takes place in the kitchen. I am going to mainly use instant stuff just because the kitchens are shared by everyone and Katia won't be able to just hang out in there while I cook so we are going to live like Bachelors:)

One concern I have right now is her platelets. Today, again, they are low. Not low enough to transfuse but yesterday she needed platelets for the second day in a row. Today I figured they would be in the 70's (norm is 150-450) but they are in the low 40's? Not sure why. They transfuse her when she is under 20. It seemed they were improving for a few days but now they seem to be reversing. I need to ask.

Well, this is getting long and I keep getting interupted:) I need to go eat.

So, have a good day and thank you for checking on our day:)

ADDED:
ALL ORDERS PLACED TODAY AT THE CREATIVE MEMORIES WEBSITE, THROUGH JENNIFER ARE TAX FREE FOR TODAY AND TOMORROW ONLY!!!! DON'T MISS THIS OPPORTUNITY. THIS IS A FUNDRAISER GOING ON FOR KATIA.

If you try to go to the site and have a problem, please email Jennifer.
creativejenny@comcast.net



Our family appreciates any fundraisers and we sincerely thank Jennifer for this opportunity.


Love, Tracy








April 14, 2004 8:15 PM

(Tomorrow, April 15th, will be 2 years since Katia was diagnosed with Leukemia AML)


Good evening:) WE PLAYED OUTSIDE OF OUR ROOM TODAY!!!! YEAH!!

Yes, we escaped. Normally we just get out late at night for a CT SCAN but today, Katia got to walk down the hall of 2 Southwest and head for a play area all cleaned up and just for her:) It took her a while to walk down there but she did walk ALL THE WAY and she was proud of herself. I could tell:)

Merritt had such nice toys out there (Katia's favorite is The Twinkler! I have to say that was my favorite too. You push a button music plays, lights flash and confetti is thrown all over inside the ball (see a pic in the photo album). Then, Katia painted a pretty fan for herself. That took a while but it came out very nice! (Pic in photo album).

After she was done with the painting, it was time to head back and relax a little (didn't want to overdo it) so she got in a MERCEDES car and went back to her room (pic in album).

What a great room. She was very very happy and we plan to repeat it tomorrow. She did very very well and showed great strength by walking all that way! I am so proud of her:)

Other than that, not much else. That was the highlight of her day and mine so I want to end it on that note:)


Thank you for always checking on us and, "Merritt, thank you for a great afternoon!"


Love, Tracy

PS I am about to put the new pics:)





April 14, 2004 11:20 AM
Day 69
WBC 4.80


Good morning:)

Yes, we slept good and we just got up not too long ago. That was very nice. "Thank you, Katia." I feel so much better today. It is amazing what some rest will do.

Aside from that, Katia got platelets yesterday and needs them again today? Not sure why. Some of those platelets yesterday leaked out and weren't transfused into her but I didn't think it would be enough to make a substantial difference. We will see. If she gets a full transfusion today and again needs them tomorrow, then I will worry a bit.
Her ears are still very very plugged up to the point she can't hear her button beeping (I can hear it very well) so I am not sure if the sinuses are improving or not. We will probably rescan tomorrow to see if it has improved.

Well, let me run and get something to eat. I think parents should be able to eat for free here or at least very very discounted. I hate going downstairs and spending money. One thing hospitals need to really really improve on is the quality of their foods to be healthier and not so expensive.

Love, Tracy


Sent via Email

ODD FACTS

In George Washington's days, there were no cameras. One's image was either sculpted or painted. Some paintings of George Washington showed him standing behind a desk with one arm behind his back while others showed both legs and both arms. Prices charged by painters were not based on how many people were to be painted, but by how many limbs were to be painted. Arms and legs are "limbs," therefore painting them would cost the buyer more. Hence the expression. "Okay, but it'll cost you an arm and a leg."


As incredible as it sounds, men and women took baths only twice a year! (May and October) Women kept their hair covered, while men shaved their heads (because of lice and bugs) and wore wigs. Wealthy men could afford good wigs made from wool. The wigs couldn't be washed, so to clean them, they would carve out a loaf of bread, put the wig in the shell, and bake it for 30 minutes. The heat would make the wig big and fluffy; hence the term "big wig." Today we often use the term "here comes the Big Wig" because someone appears to be or is powerful and wealthy.


In the late 1700s many houses consisted of a large room with only one chair. Commonly, a long, wide board was folded down from the wall and used for dining. The "head of the household" always sat in the chair, while everyone else ate sitting on the floor. Once in a while, a guest (who was almost always a man) would be invited to sit in this chair during a meal. To sit in the chair meant you were important and in charge. Sitting in the chair, one was called the "chair man." Today, in business we use the expression or title "Chairman or "Chairman of the Board."


Needless to say, personal hygiene left much room for improvement. As a result, many women and men had developed acne scars by adulthood. The women would spread bee's wax over their facial skin to smooth out their complexions. When they were speaking to each other if a woman began to stare at another woman's face, she was told "mind your own bee's wax." Should the woman smile, the wax would crack; hence the term "crack a smile." Also, when they sat too close to the fire, the wax would melt and therefore the expression "losing face."


Ladies wore corsets which would lace up in the front. A tightly tied lace was worn by a proper and dignified lady as in "straight laced."


Common entertainment included playing cards. However, there was a tax levied when purchasing playing cards but only applicable to the "ace of spades." To avoid paying the tax, people would instead purchase 51 cards. Yet, since most games require 52 cards, these people were thought to be stupid or dumb because they weren't "playing with a full deck."


Early politicians required feedback from the public to determine what was considered important to the people. Since there were no telephones, TVs, or radios, the politicians sent their assistants to local taverns, pubs, and bars. They were told to "go sip some ale" and listen to people's conversations and political concerns. Many assistants were dispatched at different times: "You go sip here" and "You go sip there." The two words "go sip" were eventually combined when referring to the local opinion, and thus we have the term "gossip."


At local taverns, pubs, and bars, people drank from pint- and quart-sized containers. A bar maid's job was to keep an eye on the customers and keep the drinks coming. She had to pay close attention and remember who was drinking in "pints" and who was drinking in "quarts"; hence the term:"minding your "P's and Q's".




I have heard this before but I thought I would post it to give you a smile:)










April 13, 2004 10:30 PM


Good evening:)

Okay, we are GOING to have a better night tonight. Katia and I just had a talk:) She agrees.

I would also like to send my sincere condolences to the family of Michael. He was a patient here on the floor that passed away. He did not have a website but up here, we are all close up here and going through many of the same things. I cannot imagine how is mother and family is feeling right now.

Katia had an okay day. She is seeming to be in quite a bit of pain and complaining of headaches. She was very persistant about the headache when she was walking. Then she threw up, twice. I got worried and let her sit in her little chair. She was content but wanted to lay over on my lap. As I sat there, I got very nervous because these are close to the same complaints she was having at the time of relapse. I talked to her doctor about my concerns and I feel a lot better. I am hoping the headaches are maybe caused by medicines she is on or even from her sinuses. We went up on her pain medicine. The throwing up could be caused by her switching from IV meds to oral on two different medicines this week. So we are going to keep an eye on her through Thursday. They may scope her belly and intestines to make sure there is no GVHD in her gut. It depends how she is doing.

She had a nice evening with her sisters. She hadn't seen them for a few days since they were at my sister's house. She was very happy to see them tonight so they just left, even though it is late and they have school tomorrow.

Sharayah and Tatiana are very good big sisters to Katia. They take good care of her and really like to see her happy. I can't wait to get Katia home and start taking pictures more of the three of them playing. Sharayah being 15 and Tatiana at 11, they are very good at making sure Katia is safe and happy at the same time. They know what she can and can't do, what she can and can't eat and they know when things just aren't right with her.

Well, for a small update on Casie. She did have her surgeries yesterday. They did a lung biopsy (no results yet) and replaced her broviac since it had been infected. They will usually replace this before transplant if there were ANY problems with it just to prevent any extra concerns during transplant. I haven't seen Casie but I understand she has been having quite a bit of pain. I am sure she appreciates your concerns for her.

Well, I am going to wind down tonight and say a prayer with Katia that we can sleep good. Katia really likes to pray. It gives her peace and I like to see that about her. Right now, she is laying here watching TV at quite a loud volume.

OH one more thing, tomorrow we are hoping to go visit "Merritt's Playground". We are going to try to take Katia to the physical therapy area upstairs to see if she will participate better. Katia seems happy about this. It would be a nice change of scenery for her too. I really do hope this gets her happy about being active:) GO KATIA!!!

Love, Tracy











April 13, 2004 8:00 AM
Day 68
WBC 5.24

Good morning:) No night... (Let me explain)

Katia was literally up all night. As I type, she is snoring asleep. I want to lay back down because I am exausted but it seems Katia knows when I close my eyes because hers open right back up. I don't get it.

Anyway, she was up and crying most of the night. She would wet a diaper and then want it immediately changed. That would be fine except that happens at least every 20 to 30 minutes. The nurses were in and out all night. She kept calling them on her button. Then she would call them if I said no to her about putting on a new movie or TV or whatever. Then she wanted COLD milk or juice. Well cold things warm if you don't drink them, then she would want it cold again. There was all sorts of things like this. One nurse "didn't know how to put the diaper on right" so another one was called. Finally I just took her button away so she couldn't call them in and out. She just screamed and screamed for about 30 minutes straight. Usually I get up and change her diapers but this was just really getting out of hand.

After all of that, it is so hard to face a new day. I really try to snap out of things and just "roll with the punches" but it takes a while to get a move on this morning.

I am not a "napping" kind of person. I would rather not sleep than to go to sleep and keep having to wake up and stuff. I see other parents that can nap on and off and that must just be great.

Last night I took the "long way" to Katia's room which takes me past everyone else's rooms. I see all of these families that have just been thrown into termoil. Nobody expected this or deserved this but somehow, they were chosen to go through it. I really wish this wasn't such a common thing. I know when we weren't part of this, I didn't hear about cancer much except on TV telethons. Now it is like everyone I know is dealing with it. There are kids of all ages, adults, all races and religions. It is just so sad to think of. Do I believe a cure will be found? Yes, I do and in my lifetime too. I really do think there is something really close but just hasn't been perfected. I think it will be something discovered more accidentally than planned and on purpose. I think, in a way, Bone Marrow Transplants, are a cure but it is just all the life-threatening issues that go along with transplant that needs to be worked out. The Bone Marrow Transplant alone can kill someone. All the chemo drugs have so many side effects. Some of those side effects are none other than, CANCER. So, I do believe there is a cure, close but just not quite here yet.

I have to really say how much I appreciate the researchers, doctors and nurses that deal with this day in and day out. They really have to get so close to the patient and get to know them and their parents personally. Also, the hospital staff of cleaning crew, food service personel, etc. All of them are in and out of here so much that they KNOW the patients and their families. I just wish I could do something really nice for each and everyone of them.

Also, so far nothing has grown on the samples from Katia's sinuses the other day. No fungus, bacterial or viral. Not sure if that is good or bad but I do hope that they are clearing up. I THINK they are a little bit but her ears are still very very much a problem to her. They constantly plug up. She did use the bathroom, #2 (sorry to share that Katia) yesterday so that was a big relief for her. It had been 3 days. She is eager to use her walker today so maybe she will get more time on that than she did yesterday. She really does like it because she doesn't wobble when she walks. I am sure it gives her more security.

Well, I am off for coffee so my eyes will stop all of this blinking:)

Love, Tracy


PS I am going to try to find out today how Casie is doing. I will post here later when I know something more. Just please pray for her as she goes through her lung biopsies and heads to transplant. Casie is such a very sweet girl and I really have grown to adore Casie. She is just brilliant and so sweet for her age. A lot of teenagers are more self-absorbed but Casie is a very caring and outgoing individual and I know her life will be filled with many great deeds and adventures.








April 12, 2004 7:31 PM


First, I want to wish my nephew Casey a happy 12th birthday today:) HAPPY BIRTHDAY, CASEY!

Well, we had an okay day. Not much new going on. Katia got a new walker today to help her balance and maybe want to walk some more. Merrit and Katia decorated it all up so pretty during their physical therapy session. "Thank you Merrit for all you do and your extreme level of patience."

Katia did use the walker with Merrit and then again with me and she works it well. My favorite part, the sunglasses:) Great decorating.

I think we are going to start the Cyclosporin by mouth tonight (yuck) but don't tell Katia it is bad. Maybe she won't realize it.

So, that is about all today, I think. If anything else comes up (since I am updating early) I will come back. Have a good evening and enjoy your family time. Things are usually so rushed in the evenings that family time just rushes by. I am going to really concentrate on more family time when we get home. Less TV (yes, that is right Sharayah and Tatiana) and spend more time talking or just doing something together.

I have to say, the scrapbook is coming along nicely:) Thank you to all of you who have sent and are sending in your pictures. Even if you don't sign the guestbook or are new to Katia's page, we would love your picture to add in the scrapbook.

Also, if you haven't had a chance to go by Jennifer's site at Creative Memories and order some scrapbooking merchandise for yourself, please do. This is a fundraiser going on for Katia and an excellent time to stock up. She has a really great site:) Again, thank you Jennifer. We really appreciate anything done to help during this time.

Oh, our next step for Katia is a wheelchair to get her out of bed more and a little more mobile. Then, maybe maybe, a trip to the rooftop playground, at night. She isn't too thrilled about that but I think once we got out there, she would like it more than she thinks.

Katia has been so sleepy lately so I figure her body is teaching that new marrow in her to make its own red cells and platelets:) You think?



Love, Tracy










April 12, 2004 11:30 AM
Day 67
WBC 5.53


Good morning:)

Well last night was very nice. Myron, myself and Katia were all here through the night. I am not going to say we ALL slept all night but 1 out of 3 of us did and that was me:) Myron was up and down with Katia.

Katia was pretty flushed looking last night so we are discontinuing one medicine. It was going to be d/c (discontinued) today anyway. We are also switching another one of IV meds to be taken by mouth starting tonight. Just one of the two doses each day. This is the challenging one, from what I hear. The Cyclosporin. I think Katia will do good though:)

If things continue going well, we may be over to RMH in two weeks time and then do our stay time over there. I just hope that Katia will be in much better spirits over there. I think the change will be nice for her. I just want to see her gaining some strength, drain these sinuses and unclog her ears.

Her sugar levels seem to be okay now so that is a very good thing:) She also has her eyelashes back (so pretty) and her hair is growing in. I look at my baby and she is doing so well for all she has been through since April 15, 2002 but mainly over the last 231 days in here. Our family has just had to completely adjust to a totally different life and we have learned so much. We have met such wonderful people and also lost some wonderful friends. This is something we never expected to go through but we know all things happen for a reason. I think the reason for this is to spread the word of marrow donations and to meet each and every person we have come to meet.

Well, let me post this before noon gets here and I have you worried:)

Love, Tracy




******


April 11, 2004 11:30 PM


Good night:)

Sorry it is so late. WE (yes, Myron and I) were here watching a movie, "Something's Got to Give" and it just finished so here I am. Katia is so happy to have the two of us here sleeping:) I am happy that she is happy.

Things here are okay. Katia is a bit flushed looking tonight all over her head and face. Not sure what that is about. We will see. She seems to feel like she normally does though, not too good and not too bad. We are enjoying being here together for her. She is being waited on hand and foot:) That makes her happy.

Well, I will update in the morning once I have some lab results and maybe some answers as to why she is flushed. I hope you had a wonderful Easter:)


Love, Tracy









April 11, 2004 12:40 PM
Day 66
WBC 5.51





HAPPY EASTER TO YOU AND YOURS




Good morning and I am sorry I am so late here. Nothing is wrong but the fact that we SLEPT IN today! That was nice! Very very nice! "Thank you, Katia."

Our night went well. I am working on organizing some pictures for a slide show and all the sudden, I realized it was passed 1:30 AM. I wasn't even tired because my mind was focused on my project. I am not one to stop something once I have started but I gave in and went to sleep.

Let me explain this sleep to you:) Katia has been watching this Ronald McDonald in Outerspace movie over and over for the last 8 hours or more and that was my dream. Yes, I was in outerspace with Ronald McDonald? Okay, that was a bit weird for me and I feel like I didn't miss a beat because she is watching the movie again today:)

So, not much going on here. Myron is on his way here and tonight, Myron AND me are going to sleep here at the hospital with Katia. She likes that idea a lot. Two parents all to herself!!! Sharayah and Tatiana are over at my sister's still and will come home tomorrow. "Thank you, Donna for watching them for the weekend."

Well let me post this before you think I fell off the globe.

I want to share this story with you that came to me via email.




The Hospital Window



A great note for all to read it will take just 37 seconds to read this and change your thinking.

Two men, both seriously ill, occupied the same hospital room. One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs. His bed was next to the room's only window. The other man had to spend all his time flat on his back. The men talked for hours on end. They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation.

Every afternoon when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window.

The man in the other bed began to live for those one hour periods where his world would be broadened and enlivened by all the activity and color of the world outside.

The window overlooked a park with a lovely lake. Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every color and a fine view of the city skyline could be seen in the distance.

As the man by the window described all this in exquisite detail, the man on the other side of the room would close his eyes and imagine the picturesque scene.

One warm afternoon the man by the window described a parade passing by.

Although the other man couldn't hear the band - he could see it. In his mind's eye as the gentleman by the window portrayed it with descriptive words.

Days and weeks passed.

One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep. She was saddened and called the hospital attendants to take the body away.

As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone.

Slowly, painfully, he propped himself up on one elbow to take his first look at the real world outside.

He strained to slowly turn to look out the window beside the bed.

It faced a blank wall. The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window.

The nurse responded that the man was blind and could not even see the wall.

She said, "Perhaps he just wanted to encourage you."

Epilogue:

There is tremendous happiness in making others happy, despite our own situations.

Shared grief is half the sorrow, but happiness when shared, is doubled.

If you want to feel rich, just count all the things you have that money can't buy.

"Today is a gift, that's why it is called the present."

The origin of this letter is unknown, but it brings good luck to everyone who passes it on.









April 10, 2004 11:00 PM

Hello:)

Our evening is going okay. Katia is in the process of emptying the kitchen downstairs. They laugh when I call for more food. She doesn't eat all of what they send up but she does eat a little to half of what she orders so that is good. Her variety is getting better too. Right now she just had rice pilaf and we are waiting for pizza. She is trying out some apple juice slowly tonight also. For the last week or so it has just been a lot of milk and a little bit of water.

One of her meds have now totally been turned over to be taken by mouth so that is good. It frees up some time off the IV so we have more time to exercise (not that she likes that). Today we did "upper body aerobics-Katia style" and she was happy with that. We just sat in our chairs and raised our hands up above our head and shook them around. We reached them out to the side and brought them in one at a time to touch our nose and our cheeks and make a few faces at eachother. She did walk around (crying and screaming the whole time) for about 30 minutes. That is an improvement.

I was thinking over the whole thing about the Ronald McDonald House and I have to look at it this way. There are some teenagers up here who have to go through transplant. They are used to being out with their friends or at school and such. So, to be locked in a transplant room for 2 months or so is just horrible for them. So, I figure I will have to look at it in the sense that...

"This too shall pass."


Sooner or later, we will get home and Katia will be very happy to get there and so will I!!

There are a lot of things to figure out about RMH as far as Katia's food (everything is best just microwavable and a lot of it) and what kind of condition she will be in as far as being able to play and such. I hope she is feeling much better than she is now. If she can't play outside or at least get out of bed and play in a living room, it will be a lot harder because it would be like being stuck in a motel room for all of that time. BUT, if she is feeling better, she can play out in a certain area for her or in a closed off living room.

I am sure the staff will help to keep me from going out of my mind:)

Well Katia wants my attention:)

Take care and thanks for checking up on us. I know the last few days I have been in a slump which I WILL get out of:)

Love,Tracy










April 10, 2004 12:24 PM


I am back:)

I was reading over the guestbook (I didn't get a chance yesterday) and I appreciate so much when you leave words of prayers and encouragment, funny little jokes or stories, etc. That really puts a break in our day. I like to hear about your families (although I am horrible with names). I am really really enjoying putting this scrapbook together. I am going to keep a count going of how many pictures are sent in so if you haven't, make sure you get in Katia's scrapbook so she can see you:)

Well, I wanted to also tell you that Katia is getting some hair in. It is dark but that is all I know. It was dark and curly. I know it will probably come in somehow differently. Her eyebrows are darker and thicker. It will be quite some time before Katia looks like herself again. She will be puffy from steroids and medicines for a while. But she is still BEAUTIFUL!!! I just want to see more smiles:) :) :) We will work on that.

About the Ronald McDonald House. I know, just like me, everyone wants to see us get home and I know her doctors truly want to see Katia go home - home home! We live about 35 minutes away from the hospital. That is one of the main problems since Katia is still needing platelets so often. I hope we get there sooner than later but I definitely want to make sure Katia is ready. Remember the big scare we had in November 2002. She was throwing up and running a simple fever around 101. I called her doctor and when she called back just a few minutes later, the fever was almost 102. We headed on our way to the hospital (all of this took place in about 10 - 15 minutes) and Katia's fever was nearing 103. About 3 minutes after we left, she stopped breathing in the car. We had to turn around and go to an emergency room right by our house (not set up at all for cancer patients). We got there (now this is about 15-20 minutes from the time I noticed she had a fever and all of this had happened. Her fever was up to 107.8 and she was just a mess. They gave her a Tylenol suppository (a big NO for a Leukemia patient). Myron and I were so scared and especially since she wasn't at All Children's Hospital where she belonged. We ended up just undressing her and putting cool towels on her and heading over to All Children's in an Ambulance. We got to the hospital about 45 minutes later, with a temperature of 105.6, started her on IV fluids, antibiotics, gave her Tylenol, took labs to send off, etc. It was then that I could breathe since I knew what was supposed to be happening was happening. Myron and I have never been that scared before in our lives! We agreed that any other time, we would call an ambulance to the house even if it seems simple! Needless to say, that all ended up being caused from a very bad infection (a few different infections) in her broviac. So much can happen so quickly. I am not saying all of that would happen again, but it certainly could. It is very important that Katia maintain her platelets better because it is bad enough having to make a car trip with low platelets but worse with bottomed out plateletsk, not too safe.

My thought now is that we will be home near the very end of May. That is reasonable I think. I just don't want to go home and have to turn right back around for another admit into the hospital because she gets sick. Today is day #65 post transplant. I really think Katia will be very ready for home closer to day #100. I just have to suck it up and get her feeling better:) That is the goal right now.

When we do get to go to the Ronald McDonald House, we will need to do a good grocery shopping trip to support Katia's eating habits right now. If you have ever been on or known someone on steroids, all they do is eat. Not full meals so much but bits here and bits there. We won't have our ROOM SERVICE at RMH. I am not sure if I can have a microwave in the room there. I am really thinking ahead but hey, that gets me feeling better:) I like to plan things out.

Okay this is getting ridiculously long:)

Katia is sleeping so I am sorta bored:)

Love, Tracy



PS I have a good question for you...

What is your favorite thing to do when you have "Free Time"?

I like to read or watch a movie usually but right now, SLEEP!






April 10, 2004 10:50 AM
Day 65
WBC 3.51

Good morning:)

I actually stayed at the house last night and spent the night. Myron stayed here at the hospital:) It was very quiet. Sharayah and Tatiana are over at my sister's house for the weekend.

I did some laundry and organized a few things of mine. I watched TV and went to bed! What a dream. That felt like a vacation. Oh, I also raided our refrigerator and had some shrimp pasta (leftovers-even better). I really do miss being home. I think I miss it more since I went there for the first time a few weeks ago. I am glad I went though because it really eased my mind seeing how clean the place is:)

Katia's blood count dropped (Hemoglobin) from 9.0 yesterday to 7.8 today so she is needing blood today. She should be okay on platelets for another 2 days because she was packed so full yesterday prior to the procedure. They are at a whopping 133 today. If you want to know what "Normal Blood Counts" are, just look above the journal entries:)

So, that is about all for now. I really want to get Katia out of bed today. She is so weak looking and tired. Even if she just gets up and sits in a chair is better than laying in bed.

Well, I know some of you go away for the holidays so have a very nice time and be safe:) I feel like we are all family. Love, Tracy








April 9, 2004 7:11 PM


Hello. Well, the procedure went well and we got back upstairs fine. Katia has just been very "glummy" today. She really is not happy right now. I am assuming she is just tired of feeling bad. She doesn't like to talk (probably echos in her ears), she is tired of being bothered, and she is just tired of being "put away".

I have no word on any results yet.

I am actually home right now, came here to do some laundry and gather my thoughts.

We talked to her doctor and our goal is to try to wean her from the IV meds and get her more taking her medicines by mouth. I think Katia will do well with that. She is physically very weak and not improving. She really needs more activity but she just feels so poorly most of the time. I am hoping that clearing up her head may help her feel better but I really do miss that pretty smile you see on the border picture with me and her.

We talked about the idea of when we would get to go to the Ronald McDonald House and home. Well, the idea of the Ronald McDonald house? Maybe in a few weeks or so BUT then they want us to stay there for 4 - 6 more weeks. That didn't make me feel very good. I want to do whatever is needed for Katia's sake.

Although the Ronald McDonald House is nice and there is a nice environment there, the fact is will Katia be eager enough to try to play or will we just be spending most of our time in our room (which is like being in a hotel room). I can't really take her to the kitchen with me to do anything (that is more of a shared area). There are living room types of areas that I can block off and keep private a few hours of the day. I don't know, I just really did hope that we could be HOME in May. I guess it isn't totally decided yet.

Katia is still needing platelets every other day or so. She is still on her antifungals each day which one is IV. She is questionable with the spot on her lungs and definitely has a sinus dilema going on.

I would rather ride out of our time away from home in the hospital where things are familiar, just a short stay at the Ronald McDonald House (if necessary) and then HOME!

This is just bugging me so I thought I would share it. I LOVE the people at the Ronald McDonald House and the environment but when I look at Katia, I just think SHE and I would do better either in the hospital longer and home quicker. Maybe I am wrong and I haven't given it a chance at RMH. It may be that she likes it a lot and gets more active and less frail. I just want Katia to smile again and laugh and be able to at least walk around and play.

She is already going to need outpatient physical therapy and a lot of work on getting some muscles back into her arms and legs. They are so so small. She is weaning from the steroids which should end in May sometime. Her eating is good.

I miss my little Katia that I had before. We all do. She was such a bundle of energy and laughs and just wouldn't sit still.

Please pray for her to be happy:)

Well, I guess that is about all for now. I need to finish up my laundry and eat and get back to the hospital. I hate being home and not having her here.

Oh, her broviac was tugged somehow right after her procedure this morning but they x-rayed it and it looks like it is still placed fine:) That was good that there was no need for replacement or repair.

Love, Tracy











April 9, 2004 12:12 PM
Day 64
WBC 3.40

Sorry I am getting to this so late. We got called to the O.R. and hour early this morning and then ended up going in after the orginal scheduled time. Gotta love that expected flexability:)

Anyway, she is back there right now. They are just trying to go further up the nose to get some type of a sample to send off for testing to figure out exactly what this is. If it all goes accordingly, she should only be under sedation back there for about 45 minutes.

I just wanted to quickly update so that nobody worried about why I hadn't updated. Things just got out of schedule.

Katia's spirits are definitely down today. Instead of the lack of smiling, she is frowning more and seems to be withdrawing so we need to perk her up today:) Mommy and Daddy will put a smile on that face today! That is our goal. Well, that is about all for now. I have to get back to where I am supposed to be waiting:)

Love, Tracy

PS They ran her platelets before so bleeding shouldn't be too big of a risk right now.



April 8, 2004 8:14 PM

UPDATE ON SCAN RESULTS AND TOMORROW...

Well, I don't know all the results but the results on the lungs shows another spot? Not sure what to make of that yet but they have increased her antifungal meds again. I just hope this isn't more fungus.

Tomorrow, Katia is scheduled to go down to the O.R. at 11:30 for the sinus cultures. We will have 8 units of platelets there to protect her and run so in case she starts bleeding. This should take around 2 hours. This will be a long day because to start, she can't eat breakfast in the morning which Katia LOVES!

Just pray that all of this is not mounting into big problems. I will be back later tonight with the results of the sinus scans, hopefully.


Love, Tracy






April 8, 2004 3:30 PM

Well, I am back! That was wonderful, very nice! The Vanoy Resort is just beautiful and everyone there was so very kind.

While I was gone, Katia got a platelet transfusion which she is still needing every 2 to 3 days. That went well. She was very happy to have her daddy here first thing this morning. SO, he MAY come spend the night with me and Katia either tonight or tomorrow night. Sharayah and Tatiana will be spending the weekend with my sister.

I have no new information on the lung scan we did last night and when the sinus scan will be done or even what the plan is for that. I haven't seen the doctor. I know she came in while I was gone and has been working with the other specialist to find the best plan of action on finding out what Katia is dealing with and how to even treat it. So, I will update when I know more.

It is also with a very sad heart that I let you know Jake G. earned his angel wings early this morning. I cannot imagine how they are feeling. This just happens way too much. Jake you will be very missed!

Love, Tracy







April 8, 2004 8:15 AM
Day 63
WBC 3.30


Good morning. First off, I just found out that Billy G. is right back here in the hospital. I can't believe that. He has a fever. I have to say that is always a huge fear. Even though the fevers can be caused by almost anything, it is just a worry and the fact, he was so happy and JUST left yesterday! All you want to do when you leave the hospital (especially after a long time) is go home to stay home. Please pray for him and his parents that this can just be a short short stay.

Katia is doing okay this morning. She is eager for daddy to get here and spend the day with her while I go to my little outing:)

I am so looking forward to today!!! Some friends of ours gave this Spa Day to me and I am taking one of Katia's nurses with me also. Instead of a full spa day, I wanted to kinda split it with someone else. So, it is kinda like a girls' day out:)

Well, I have no idea about the CT SCAN plans yet for sinuses or really what the next step will be. I don't know the results from last night's scans. I am kinda leary about leaving here without knowing but I really can't delay today.

So, have a good day and I will update as soon as I am done and back at the hospital:)

Love, Tracy








April 7, 2004 6:30 PM

Good evening:) Okay I have had hot tea (a few times today) and some coffee. I got away for about an hour and I feel better. Tomorrow I have a SPA DAY!!! (Thanks to a friend of ours) I can't wait. It is at the Vanoy here in St. Pete. It is for a manicure, pedicure and massage. Oh, I can feel it now.

Right now, we are waiting for a CT SCAN. We are going tonight. This is of the chest (Katia's not sounding too great right now and her cough is worse) but I am trying to get them to write for the Sinus Scan to be done at the same time. Hopefully they will so she won't have to go again tomorrow.

Myron is going to be with Katia all day tomorrow so I may actually go home for another evening to finish out my SPA DAY on a really nice comfy bed:) I don't know. It depends on how Katia is feeling and what is found in these scans.

So, pray the scans show the problem but not a HUGE problem. That way we can start whatever treatment is necessary and get things moving along.

Katia had an Easter Egg Hunt today with Merrit and had a lot of fun. There will be a new photo in the photo album of her today with her bunny mask on. I have to shrink it down and place it there but I am getting to that right now.

Thanks for checking back:)

Love, Tracy













April 7, 2004 10:55 AM
Day 62
WBC 4.33 :)


Good morning. LONG LONG NIGHT...

Katia had a long night and a very difficult time of winding down. She literally just wanted me to basically stand by her bed all night. Well since that wasn't going to work, she was very upset. I finally called Myron around midnight to talk to her. A lot of times, he can get her to calm down or vise versa if he is here and I am not. You know how kids are, they will more likely listen to someone not involved in the given situation at that time. Anyway, it made for a very very long night.

This morning hasn't started out much better. Katia is very high strung this morning. If this keeps up, I am going to get them to give her some Ativan (medicine that calms her) because it is no good for either of us. She ordered breakfast (strawberry oatmeal, RICE PILAF, French Toast Sticks) but when it got here, she didn't want that. She wanted something else. The food was here in about 20 minutes. So, she just started crying and crying. I miss her smiles.

Well, I am determined we will have a better day and that is what I am sticking to. I am going to go out on "the bridge" and have some hot tea and then come back and start over:)

So, I will be back with any updated information on tests and such. I know we scan her sinuses again tomorrow and I want her chest scanned too because she has been having this awful cough all night and all morning that is just getting worse.

Have a good day and enjoy the story below:) It really makes such good sense to me. Thank you, Judy.






PUT THE GLASS DOWN


A lecturer was giving a lecture to his students on stress management. He raised a glass of water and asked the audience, "How heavy do you think this glass of water is?" The students answers ranged from 20gm to 500 gm.
"It does not matter on the absolute weight. It depends on how long you hold it. If I hold it for a minute, it is OK. If I hold it for an hour, I will have an ache in my right arm. If I hold it for a day, you will have to call an ambulance. It is the exact same weight, but the longer I hold it, the heavier it becomes."
"If we carry our burdens all the time, sooner or later, we will not be able to carry on, the burden becoming increasingly heavy. What you have to do is to put the glass down, rest for a while before holding it up again. We have to put down the burden periodically, so that we can feel refreshed and are able to carry on. So before you return home from work tonight, put the burden of work down. Don't carry it back home. You can pick it up again tomorrow."
"Whatever burdens you are having now on your shoulders, lay them down for a moment, if you can. Pick it up again later when you have rested...rest and relax. Life is short, enjoy it!!






Love, Tracy









April 6, 2004 7:40 PM

Good evening.

Absolutely no new news today. I really don't know what the plan is. I am talking about for Katia's sinuses. Other than that, we had a good day. Katia is eating and drinking good, she had her poopie and she even played with Merrit for almost an hour today. They "cooked" in Katia's kitchen and made me a "delicious lunch". That was good that they were able to play some. Merrit thinks Katia is in need of physical therapy each day so she is going to try to visit with Katia each day.

Our plan for tonight is to try to get some early rest. I don't know how that will pan out but I am tired. Katia spent most of her day napping and watching and TV. I doubt she is tired but we will see. Sometimes she will surprise me and fall asleep and then stay asleep for the night.

Our neighbor, Billy G is scheduled to go home tomorrow. It will be his Day #34 but he had a regular marrow transplant, not a cord transplant. He is fully engrafted:) Way to go Billy! Such a sweet boy and what an awesome family:) "Thank you guys for being such great neighbors on the floor.

Okay, well I spoke to Katia's doctor just now. No news yet on the next procedure but the very good news is that Katia remains fully donor cells. Her marrow is holding very well:) "Great job, Katia!" Her RBC seem like they are trying to engraft so that will probably start showing very soon and then hopefully the platelets right after. I am not sure if her blood type has changed yet from her old O to the donor's A yet. I am waiting to ask. I don't think so but I want to check.

We will probably do her lumbar puncture (spinal chemo) around Day 70 (today is 61). They waiting to see if her platelets would engraft first.

I am very pleased with Katia's progress. It has been a long hard road and taken a lot of time but it is SO worth it!!!! I really do believe this is Katia's cure.

Our day going home will get here when it should get here. God has a reason for working things the way He is working things.

Myron was able to go to Clearwater Central Catholic tonight and speak to an awesome group of Key Club Students. These students put together a fundraiser for the Katia Solomon Fund and we were so grateful. Myron wanted to go by and thank them in person and in return, he met some wonderful young adults. He was so impressed by them. "Thank you so much to the student body."

Thank you so much for following Katia's journey with us and for all of your prayers and support. We appreciate each of you so very very much. God bless you and your families.


Love, Tracy










April 6, 2004 10:00 AM
Day 61
WBC 3.29


Good morning:)

Today is off to a good start (other than being waken up by an ENT doctor today). Katia is eating well and now she is resting. The ENT doctor came in and looked her over in her ears, up her nose and in her mouth. She wasn't too happy about all of that. He wants to talk to her doctor about taking her down to O.R. tomorrow and getting a sample out of her nose (up there pretty far) and really see what it is up there. I am not sure if Katia's Transplant Doctor is going to agree to this right away but we will see today. It is a hard decision to poke anywhere on Katia right now so close to transplant day. BUT we do need to see what is there and test it to see what it medicines it will respond to.

The Infectious Disease doctor came by yesterday (her regular one) and he feels he wants to start her back on vancomycin to see if that works. So, they all need to get together and see what is agreeable and best for Katia at this time.

I am going to keep this short and sweet so I can go make me a cup of coffee (no coffee as of yet) and eat something. When I worry about ANYTHING, it gets to my stomach. The last few days have been pretty hard for a few reasons. It seems like a lot of things need attention all at one time. I know you each know how that goes.

Katia did finally ask to do something not in her room. I was really surprised to hear that. Normally she just wants to stay right here, on her bed, and do nothing but either eat or play a little. Well this morning she wanted to go to the playroom and watch Barney on the big TV. She likes that TV because everything is "big like her". To a parent, the bigger the Barney, the... I will let you fill that in however you feel about it. I know Katia would love to have her OWN big TV (what 4 year old wouldn't?) BUT, now she is asleep. She is snoring so cute and she even has a slight smirk on her face but then she makes faces like something is bothering her. I always watch her sleep. I have been like that with all 3 of my girls. I always wonder what they are dreaming. One thing I want to do when we get home is watch ALL the home movies!!! That would be cool to watch LIFESIZE! I love to watch old home movies except I hate the way my voice sounds on TV. We watched all of them about a year ago (maybe longer) and it was nice to sit down and see. Katia thought when we watched baby movies of Sharayah and Tatiana that it was her so maybe now she would better understand. It is amazing how I, however, just seem to age so quickly on film:)

Well, that is about all. I need to clean up some around here and look for a lost toy of hers. The one thing I can't find, she wants.

Love, Tracy










April 5, 2004 9:30 PM

Good evening:)

I have to make this quick because Katia really isn't feel well this evening. She hasn't had a "poopie" (sorry Katia for telling your business) for 2 days and she is trying to force herself not to go BUT that is about to pass (literally).

She had a good day because Sharayah came to the hospital with me and spent the day (missed the school bus). Anyways, although she was not in a playful mood at all, they watched movies and Sharayah played with playdoh and Katia basically just watched.

I really hate to see Katia feeling so poorly when she should be feeling a lot better. I feel like such small things are holding her back but I know those small things could get really out of hand and I don't want that either. I just want Katia to be happy, healthy and feeling good. I want to see her smiling more just because she is happy and not just because she wants to make me happy. She tries to force smiles for me. Poor thing, right now she is absolutely miserable and she gets into so much pain at times, she shakes trying to get the pain to go away.

WE JUST HAD A POOPIE!!! Not a whole lot but enough to take the "edge" off.

I want to thank those of you who have recently made contributions to the Katia Solomon Fund. This is so very appreciated and we are equally grateful for each contribution. During this last 7 months in the hospital, I have to say we have met so many kind and loving people. People, all over the world, are praying for Katia and sharing her story with others. I pray, that as Katia's story is shared and we share her story, for many many years, more people will join the National Marrow Registry and so many more lives can be shared. I wish that each and every woman, expecting a baby, was told about how their baby's cord could save someone's life. I wish that every person that received a driver's license was also handed an imformative pamphlet on blood, platelet, marrow and organ donation. All are equally important.

Let me again put in my "Tell 5 people statement here". Please tell 5 people (5 more if you have already told 5, 10, 15...) about the importance of registering as a Marrow Donor and also the importance of regularly donating blood and platelets. Tell them to tell 5 more people and so on and so forth. The best way to spread the word is simply word of mouth. I wish we could share Katia's story nationally like we have been able to locally. I feel so many people have really been touched by Katia's story and maybe that is the "reason" behind her having to face this battle. Please pass on this website address to those you meet and maybe just by passing this on, more people will learn about Bone Marrow Transplants and more people will register.

There is also a PRINTABLE FLYER on the Katia Solomon Fund website that people can print and hand out. This talks about the fund and why it was established. It also has the website address and her PO BOX address. So, please help us spread the word to those you come in contact with. The flyer prints on one sheet of paper.

Well, Katia is really not feeling too well right now so I am going to go try to rub her down with some lotion and see if that will relax her. The lotion is really good for her skin. She gets really dry and that lotion helps more than anything I have ever seen! It is called Kerodex and it isn't greasy and it is water-resistant. Very good lotion for those of you bothered by dry skin and we have tried a lot. It is okay for her sensitive skin also.

Thank you for checking in on Katia tonight. Please just pray for her tummy, booty, and mainly for her sinuses and ears. God bless you.

Love, Tracy









April 5, 2004 11:50 AM
Day 60
WBC 2.95 (Dropped)

Good morning:)

I am back to the hospital. I am going to do a very quick update because I know I will have people in and out of here for a bit.

All went well last night. Myron and Katia had a good evening which I am so glad of. Katia was a bit emotional this morning but when I got here she just seems tired and cranky. She ate her breakfast decently but the last few days, she hasn't eaten or drank near as much as she was. I know she is sad that Myron had to leave. Poor baby just wants all of us again.

We are coming up to April 15th (two years of diagnosis) and it has just been running through my mind a lot today. It feels really like 5 or more years. Just so many things have gone on and such an emotional and physical roller coaster! WOW!

Katia's blood sugar levels have been rising over the last few days which concerns me. Two days they were at 156 but today they are at 148. I want to find out why. I know it could be due to medications but for the most part she is weaning off of medicines more than starting them so I would think she would be getting away from reactions to medicines. I don't know?

So, let me post this quickly. Pray she has a good day:)

Love, Tracy







April 4, 2004 9:14 PM

From the desk of Tracy Solomon:)

Yes, I am home again this Sunday night and I am very impressed, once again, with the house and how everything, absolutely everything, is in order:) Thank you sweet Myron, Sharayah and Tatiana for your hard work and your many efforts:)

Katia, I miss you so much right now sweetie, I really do. I know you have an upset belly right now but I know daddy takes your mind off of that because you are so happy to have daddy for a "sleepover" tonight!!! I am praying for your belly right now {{pause}}. You are so sweet and tough and so very brave for all you have to endure and mommy is so very very proud of you! I love you.

Katia and I had a really great afternoon. WE, yes BOTH of us, played inside her very small tent full of balls! I am not sure how I got in or out of there and I must have looked ridiculous, because Katia was just a bowl of laughs watching me. I would fall on my face like SpongeBob to hear that laugh though:) She was really playing and being herself. She tuckered out very quickly, after only about 15 minutes of laughter, and had to lay down but we DID stay inside that little tent until Myron came there with the girls so we could "hide" from them and they could "find" us! (Thank you Myron for getting over there so quickly - I was CRAMPED!)

Katia finished her rainbow picture so I will post a pic of it tomorrow. She worked very very hard on that picture and was so happy to present it to daddy! She really is so loving and eager to bring happiness:) How did we get so lucky to have her brought into our lives!

I have to say, even though Sharayah and Tatiana do stupid stuff, I am very lucky to have my 3 girls. I am very proud of them and I thank God each day for them. Shhhh, don't tell them that! No, I am joking. They know I love them and the three of them are just so perfect together. They were little souls in Heaven and God placed them purposely together, with us.

Then there is Myron (another perfect match sent to me by God). I mean it isn't like we just ran into eachother. Literally it was destiny for me to go to the Island and Myron to be right there at the airport at the time of my arrival. There is not a day that goes by that I don't realize God answered so many of my nagging childhood prayers for that perfect little family. He really answered my prayers with each of them.

Well, I am going to wind down, take a nice hot shower, maybe go sit out on the back porch a bit and call it a night. I actually had to stop at Walmart, with the girls, for some school supplies and things they needed at home (I felt like such a real Mom) so we are just getting home. OH I LOVE BEING HOME!

Next Sunday we are going to do a little Easter Egg with Katia in her room BUT I have promised her we will celebrate Easter at home (whenever she gets home). Last year we hunted Easter eggs on the backporch and she wants to do that again and I want to video tape that again. She REALLY must have enjoyed that and making the Easter cookies with me because she is very persistant in asking to do this. She wants to dress up in a pretty dress with "Clip Clop Shoes" (dress shoes that make noise when she walks). I will see to it to make that come true!

Well, I bid you good night, sleep tight, and the Ladybugs WON'T bite:)

Love, Tracy









April 4, 2004 9:00 AM
Day 59
WBC 3.84



Good morning:)

We had an "okay" evening. It took a while for Katia to wind down for some reason. She slept okay after that just getting up a few times. Her heart rate has seemed pretty well back to normal:)

This morning, Katia has a good appetite! She has had 2 French Toast sticks and some Cream of Wheat and now we are waiting for.... of course, RICE PILAF! That seems to be her staple food right now. She is over the Beefaroni it seems.

Tonight, we plan to repeat last week, sending me home and Myron to stay overnight here. Yesterday they were working on organizing the garage (I am looking forward to seeing the progress) and they were working on the backporch some. I am planning to have my coffee out there on Monday morning:)

When we return home (that glorious day) I plan to have my coffee out there each morning and just breathe in the fresh air:) I am usually pretty early to rise on the weekdays. I like mornings because they are quiet and crisp feeling outside. Did you ever notice the crispiness in the air? Especially in the fall and spring. I LOVE IT!

I think Myron is even beginning to like coffee, well at least a Cappucino (I really don't make those-not sure how). I grew up around a coffee-drinking family and I always thought when I grew up (and was allowed to drink coffee) that I would go visit these family members and have coffee. Most of them have passed away and are now at a luxurious coffee shop up in Heaven. I miss them. Every single time I have a cup of coffee, I remember my great-aunt, Mae (Bubba) and a few of my Aunts (Shirley, Libby, Jerry Dot, Nell, etc.) and I can just picture the kitchen that always seemed so full of life and good smells:) I really wish I could go there now and have coffee. Anytime I sat down by the counter, they handed me toast and juice:) That was really good, too. Have you ever noticed that just about anything that someone else makes, taste better? Especially if they are the ones cleaning up the mess too:)

Well, let me get this posted. I just thought I would share another piece of my little world with you:)

Love, Tracy











April 3, 2004 10:22 PM

Good evening:)

Sorry I am getting to this so late (actually with the time change coming, it is later than it seems really). I didn't even know the time change was tonight. I always forget about those changeovers so as a reminder, if you don't know, clocks go ahead by one hour tonight:) Maybe I am not the last one to know.

We had a good day. Katia was happy and sat and played with me on the mat for about 2 hours. She colored and talked and seemed to be happy to be there. Of course, she was clinging to her blanket and my brown shirt and she had to be sitting on a pillow cause her bottom hurts, but the fact is, she was out of bed and doing something. I always at least make her walk to the door and then all the way over to to the mat so she gets some exercise.

Katia hates the nasal spray, hates it! I am not sure if it is really doing much of anything other than upsetting her. She sounds about the same and is still having a lot of problems, on and off, with her ears. I really really hope this new plan will get her some relief. I had hoped that she would have really drained by now. She says she feels something in her throat but I don't know what. Her nose is not at all runny. She does seem to be coughing more and more. Last time, we thought that was due to drainage but it turned out not to be I guess.

I drew her some pictures today and she colored them in. One thing she is working on (for daddy) is a picture of a rainbow. The awesome thing is, she colored in one whole color of the rainbow and stayed within the lines. I was very impressed with her coloring ability. She is liking coloring a lot better but she really doesn't have patience when she messes up. She just balls it up and I am like, "That was so cute!"

Another things she is seeming to enjoy more, is laughing. If I am talking to her or playing with her and something funny happens, she doesn't get all mad when I laugh and she will smirk or laugh with me. That is so nice to see because I really missed her sense of humor. I LOVE seeing her smile or hearing her laugh.

Last night, I was asking her a bunch of questions like about things being bigger or smaller, or the colors of things she sees on TV, or about shapes and just a lot of different things. She amazed me with almost every answer being right. I taught her some sign language and she remembered everything I showed her. I taught her Mommy, Daddy, Milk, Hungry, CRAZY (she knew that one), Kitty, Doggy (she can't do that because it is snapping), and a few others. This morning she remembered all of them! I try to do little test with her without her knowing and see where she is and what she needs help with.

When we get home, I want to work with her a little each day. I used to homeschool Sharayah and Tatiana and I enjoy teaching. I taught for a while on the island (Roatan, Honduras) where we used to live. I enjoyed teaching. I had first grade for Math and English, 3rd Grade for English, and 7th-11th graders for Computer Courses. I was a "no-nonsense" kind of teacher and my classes always moved ahead really well. I miss the teaching but not all of the lesson planning. Sharayah and Tatiana were very easy to homeschool because they were very self motivated but it allowed me to see where they needed help and really pinpoint some key areas to concentrate on.

Okay, I am babbling and I am really really tired tonight. Today was a busy day around here but I am not so sure why.

Take care and remember to set your clocks:)

Love, Tracy










April 3, 2004 11:00 AM
Day 58
WBC 4.80

Good morning:)

We had a good night last night. Katia slept well and her heart rates have gotten down to the low 100's. That is more normal for Katia. She says she has something in her throat so I hope that is sinus drainage (sounds sick but that would be a good thing).

She didn't have much of an appetite last night or this morning cause she says she can't swallow. I think it is just because of drainage. We looked in her mouth and it looks fine. She didn't wake up till about 9:30 this morning so she was resting well. I like to see that.

Katia is doing very well taking the medicines she has to take by mouth right now. She is only taking the blood pressure ones, the Mineral Oil, and one diuretic but she does that well:) She will have a lot more to take by mouth before she can go home.

First things first, the sinuses have to clear. Her platelets need to engraft.

Well, I will be back later in the day. I keep getting interupted so I better post this before a few hours go by:) (LOL)

Love, Tracy








*****


April 2, 2004 9:20 PM

Good evening.

Well this has not been the best of days for Katia. She doesn't feel well at all. She did get out of bed for a short bit but then ended up taking a long nap, with daddy, sitting in a chair. She did really need the rest.

We have changed her medicines around again. She is still on the Gatifloxacin, the Claritin has been discontinued. We are trying some Afrin Nasal Spray twice a day. We are just trying to break it up in there. Somehow, we will probably try to sample this and see WHAT it is but for now we are just trying to get her some relief and break it up. We really can't go doing anything evasive in her nose due to the fact she just had tranpslant so we can't go in and clean out the sinuses. Possibly, we will TRY to go in and get a sample. The ENT doctor has to figure that out. Today, we saw the Infectious Disease Doctors. Katia is definitely coughing more and her ears are staying the center of her problems.

Her heart rate is down in the 130's so that seems to be better. The EKG looked fine. She has no fevers or rashes and although she doesn't want to get up, for anything in the world, her energy level is about the same.

So, what does all this mean?

Don't know. We will see what the next plan is by how she reacts to these nasal medications over the next few days.

Her chest and lungs sound fine though. I know some of you were asking about her lungs but they sound and look good in the scans and observations.

So, just pray for Ms. Katia that she can get some relief from the new meds and that this isn't a bigger problem than just congestion (like fungal, bacterial or viral).

Well, her food is here tonight so I am going to get her up to eat. She sits up for that!!!

Love, Tracy









April 2, 2004 3:09 PM

I am back with some more news. The sinuses are worse. Now, we have to figure out some other plan of action. The fluid in her ears looks the same. Katia's heart rate is down to the 130's so that is improving, still too high because she is sleeping right now after having benedryl for platelets today. All of this started shortly before the platelet transfusion. Usually following benedryl and platelets, her heart rate is around the 90's.

I am not sure what is going on but that light at the end of the tunnel, seems to be getting further away.

Love, Tracy






April 2, 2004 12:50 PM

No CT SCAN results yet or sugar but we are having a bit of a problem with Katia's heart rate speeding up. It is staying around the 160's and getting up to the 170's for really no apparent reasons. We just did an EKG? I am not sure why this is going on. She isn't spiking a fever, crying or upset and really no reason. So, just pray this isn't anything to be concerned about.

Tracy











April 2, 2004 9:30 AM
Day 57
WBC 3.56


Good morning:)

We had a good night....

By the way, the mention of the puke bucket was only decorating, she hasn't used it in weeks!!!! YEAH! We don't miss that at all. Actually she just has a bucket ( a new one of what she uses for puke-it is actually not for puke but she won't use the ones that are) and we just put the diapers and such in this bucket so they are in reach when I change a diaper. I guess they made them an ugly yellow color so kids would feel the need to decorate them. Katia says she LIKES arts and crafts now. She is into glueing the spongy things on paper. She likes the texture and of course the messiness! I LOVE THIS LITTLE BABY I SPEND MY DAYS WITH!

Anyway, I will update today as soon as I hear about the SCANS and any other results back (we are testing for her sugar levels again right now) so I am eager to hear what is going on with that also. I don't think it would end up with her needing insulin but rather an adjustment of medicine levels. I have been reading into it.

I have to share this with you cause I know you will appreciate it as much as me. Katia has been miserable the last few days but, yesterday, she smiled much more than she has in weeks! I went to sleep last night happy about that (and happy that I found that paper I was looking for). You see, although we pray certain things, and we don't always see the exact answer come back, God does answer our prayers. Sometimes we just have to wait longer or adjust our "needs and wants". Sometimes some of our prayers of "wants" will mess up what we really "need". Although we all strive for happiness in life, our life can find extreme happiness in things we don't realize for ourselves. So, I try to pray for God to show me happiness in my life, not to just change my life, but let me learn to enjoy what I am living.

Remember the quote from King George V?
"The secret of happiness is not to do what you like to do, but to learn to like what you have to do".

That was so very wise and so true, isn't it?

Well, I am going to go grab me some coffee and oatmeal. I will be back with any new results. Love, Tracy













April 1, 2004 8:45 PM

Good evening:)

Well today has been busy and hectic. I have been looking for something which I finally found (but that is so annoying when you can't find something).

Katia has kept me quite busy today but this afternoon she played with a new thing she got, a CareBear tent with the plastic balls inside!! She really likes it alot. I have to stay right with her so she doesn't fall down or roll over but she really likes it. She kept crawling in and out of the doorway. She tried to stand up in the middle of the tent, which would allow her to put her head out the top which is opened, but she toppled over and got pretty upset. She gave up and just wanted to come sit down (but that is okay, it was still out of her bed.

Then, we went and had her CT SCAN done of her sinuses and ears so hopefully tomorrow we find out that is clearing up. She is acting like it isn't clearing up, though. Her ears are still really bothering her and causing her to not hear good alot of the time. She rubs and rubs at them and cries but then she gets okay for a while. Her face is so swollen and puffy right now, it is hard to see if it is from steroids or sinuses.

I just feel really bad for Katia right now because I know she is misearble most of the time. She used to be easier to distract but now she isn't. She is getting depressed and irritated and I can't blame her. We have been here 218 days so far. She says she can't go home yet, though. She says she is sick feeling and has to be better first. That is her wording. She is a very strong baby, but she is still a baby. She is definitely far from a typical 4 year old. She is closer to a 2 year old in most ways. She is in most every way, the same as she was when she was diagnosed at age 2 1/2. She gets frusterated more because I know this bothers her. I see her sometimes when she is watching Barney and stuff and she sees kids in preschool and she knows she is different. First, they all have hair. Secondly, they are jumping, skipping and running around. Thirdly, they are free to roam and play. I can see this in her eyes. I think that is why she is more into the regular Disney movies now instead of realistic things. She would rather watch Lion King, Jungle Book, Winnie the Pooh, etc. because they aren't even real. She does follow the story lines a lot better because she laughs at some of the funny jokes.

Don't get me wrong. I love my baby to death and I am so pleased with how well she is doing, so pleased beyond what I imagined. Katia has pleasantly surprised me through transplant. No mom wants to see her child go through this, at any age. No parent ever wants to see their child suffer and hurt. We want to see them doing things kids should be doing like playing and running and knocking things over. Katia doesn't even have a chance to get into trouble. She throws temper tantrums and gets mad about being bothered and looked at but we all know, she deserves that.

I only remember one thing Katia has ever done and got in trouble that was pretty typical for her age. One night, when we were home and she was in remission, she was being quiet, too quiet (as Shrek would say). Well, she had been wondering back and forth between me at the computer and Myron and the girls in the livingroom. She had been stalled! I walked to see why she was being so quiet and what was "entertaining" her. Do you know what she had done?
She had used a black crayon and colored on the refrigerator, stove front, dishwasher, walls, cabinets, just everything in the kitchen. As soon as I saw it, Katia just stood and looked at me like, "Isn't that pretty?" Well I got all over her case and sent her to my room and put her up on my bed to just sit. I began to clean it up and with quite a bit of scrubbing, it all came off. Meanwhile she was in my room calling out that she was sorry. Well, I am a real pushover with Katia so I went in and told her it was okay but don't do it again! Then, she got teary eyed and pointed to her highchair which was in the dining room which is right off of our bedroom. I went out and looked and she had colored all over the legs, the sides of the tray and the wall behind the high chair. I hadn't seen this because the light was off in there. She just started bawling because by this time, she knew what she had done was wrong. Part of me was happy to be cleaning it up but the other half was saying, "She better not pull this stunt again!" Katia is so easy to love and you just want to see her smiling and happy and to hear her laugh? Well that is heaven!!!

I am sorry this has gotten so long. I just had that on my mind. Right now she is putting stickers all over one of those puke buckets. She is having fun and I love to see that:)


Love, Tracy









April 1, 2004 11:00 AM
Day 56
WBC 3.56

Good morning:)

As I type, Katia is laying here watching the Muppets. I have gone over with her MY plans for HER day and she seems to be okay with a little more play time:)

She had a good night. She is really peeing a lot. They are weaning her down from her fluids each day. She wakes up a lot in the night just to look at me and make sure I am looking at her. Somehow our clocks connect and I usually am looking over there. She probably thinks I stay awake all night.

I am in the process of cleaning out my Ronald McDonald House room and giving that up. I think that will make us feel like we are closer to going home. When Katia is able to go to the Ronald McDonald House, it would be a different one than where I am at. The one she would go to has rooms set up for Transplant Patients. I am still planning to walk over each day and talk to the wonderful staff at the house and still do my laundry over there, maybe sit down and have some coffee. These people have become closer than friends, they are part of our family. They have been there for us since Katia was originally diagnosed. This April 15th will mark 2 years since Katia was diagnosed. Tax Day took on a whole new meaning for us. I will talk more about that day on the April 15th journal entry.

Myron is staying very very busy right now trying to establish The Katia Solomon Fund and also filling in as MOM with the other two girls. I have to say his plate is very very full. He has done a wonderful job of maintaining our house and keeping up behind Sharayah and Tatiana. For me and Katia, Myron is only a phone call away and he is willing to drop what he is doing to head over this way if we need him. I do end up calling him a LOT just so he can talk to Katia to calm her down or get her to take medicine or stop crying.

So, I better get this post up before you think we disappeared:)

Love, Tracy








March 31, 2004 9:30 PM

Good evening:)

Our day has been nice and nothing really new going on here. Myron and the girls just left and Katia enjoyed having them here. (Me too)

Katia is going to start some Claritin or something to help break up her sinuses better. She is still very bothered by this. The sugar showed up in her urine again today but we will just check it every other day right now. Her other bother is she is saying her feet hurt when she walks but we really think this is due to lack of walking for so long. So, tomorrow we are going to call her doctor in, during those few minutes Katia will walk, to see her walking and make sure she is walking right. I think she just needs to do more exercise (walk walk walk). Even if it is just on her mat barefoot, she needs to walk.

She says she will walk when she goes home but then her main thing she talks about is sitting on the sofa watching movies and eating cheese sandwiches (that sounds like a plan?) So, we are working on her motivation. I have a few ideas up my sleeve. I can handle this.

Katia is beginning to give me a little more free time to come and go or just to sit and read or watch a movie and I have to say, I saw Mona Lisa's Smile the other night. Great movie!!! I like "Chick Flicks". I like to see things that are from true stories or just entertaining. I like to "escape".

Well, I was thinking today about a good idea for the whole world and I came up with the following. Tell me what you think.


"World Gets A Break Day"

1. Whatever you chose to eat will not make a difference in your weight or health status

2. Shop till you drop for free

3. This day (since it is so so good) will be extended to 168 hours (one normal drudging week).

4. All daily duties, like chores and responsibilites, would be done by little "Task Doers" (those are people that can't take a day off due to their anal need to work)

5. Of course, you would be abundantly paid for this wonderful day because it goes under the category of "Holiday Pay".

6. Time spent sleeping is not deducted from your 168 hours (this is free time)

7. Travel is not necessary on this day as you can just "poof" wherever you wish to be to spend time with whomever and wherever you wish.

8. Nothing bad can happen during this time.

9. Since you will most likely want to do some foreign "poofing" to visit othere countries, obviously you can speak any language.

10. At the end of the "World Gets A Break Day", you will be given a good supply of "Weaning Pills" so that life is not a shock when you are rapidly thrown back into it!




So, I thought that was a good idea so if anyone wants to pass that onto congress?

I have a prayer request to pass on tonight.



Jenna
Jenna was diagnosed this past Saturday, March 27, with medullblastoma - a tumor that occurs typically in children. Sunday was rough, her condition worsened rapidly and they rushed her to emergency surgery at 9pm Sunday night, the original surgery was scheduled for 11:45am Monday. They finished up the surgery about 1am Monday morning and she's been stable since. They are trying to get prayers for Jenna from all over the world.




Well, Ms. Katia wants some Apple Dumpling...

That means I am done. I will be back tomorrow:)

Love, Tracy










March 31, 2004 9:45 AM
Day 55
WBC 3.52 (Up more)


Good morning:)

We did have a very good night. Katia slept through the night (although I kept waking up to see if she was awake) and that was great!!! This morning, she got up in a better mood than most mornings. I told her we are going to have a good day.

I have just really been thinking and praying a lot about this sugar in her urine. I really pray that will subside because I just don't want anymore on "Katia's plate" than she has right now.

She is waiting for her breakfast right now, RICE PILAF! She really likes that stuff:) She is over the Beefaroni kick right now, hasn't had it for a few days. She is into Broccoli and her rice pilaf. She is drinking nearly a gallon of milk a day, no joke! That is okay with me.

Katia is so puffy right now and I know it is bothering her. Her legs are skinny and her upper body and head are just extremely puffy. I don't post the pictures that show this the most but I have always wanted the journal to tell what Katia goes through. I know when we have something coming up, I try to find other sites of kids who have recently faced what we will, and learn about things ahead of time. I hope Katia's site can be a site that someone can learn ahead of time what they will be facing. Everyone reacts differently to medicines and transplants though.

The main thing keeping Katia unhappy right now is her head and ears. I do believe this is clearing up some and we will find out by Friday if it is. I am very pleased with the progress she has made with her poopies:) I think her belly pain is gone and that was a tough thing for her to deal with. She has pretty much no control over her urine and bowel movements and that is something we need to work on. I think she is closer to being potty trained if she can especially learn to control when she goes. She says she doesn't want to use a potty (she basically hates the idea) but I think she will be more able to communicate now than she used to.

Although she is 4, in so many ways she is so much younger than that. Her motor skills and physical activity more resembles an early 3 year old. Her walking is improving each day but she still will fall down a lot so we have to hold her hands. I think partially because she gets dizzy. I know, once she gets home, she will improve quickly. She really lacks in the area of having patience and that is something I pray will improve as the steroid dose gets weaned down each week.

Well, I keep losing my train of thought and having to get up and down so let me post this:)

Please know that each of you are in my prayers. I do go to more sites and check up on people but I don't get to sign many guestbooks. I pray for each of you:)

Love, Tracy










March 30, 2004 8:00 PM

American Idol is on and we are watching that right now:) Katia likes this show, a LOT! She just got back into bed after being out for about an hour. She walked a short bit (I am posting some new pics tonight) and then we just sat in the big chair together with me holding her. She loves that! So do I!!!

Today has been okay for her. She got platelets (which she still needs every other day) and some of her other medicines discontinued so things are moving along. I really hope this sinus infection is clearing up. We will rescan on Thursday to check things out.

There is some sugar showing up in her urine so we will retest that tomorrow also. Pray this stabalizes because I do not want Katia to have to get insulin injections. We are going to test it for a while though. I don't think any decisions will be made too quickly. But, just pray and we will see.

Let me go get the pictures resized so I can place them in a bit.

Thank you so much for all your loving messages today in the guestbook.

Oh, the picture scrapbook is moving along great!!!! This is turning out just like I wanted it. I am still missing a lot of pictures so if you haven't sent yours (pictures must be sent through the postal service no larger than about a 4x6) then please try to. Katia is wondering what I am working on. They are all going into a lovely ladybug photo album so it is just perfect!

Love, Tracy






March 30, 2004 9:15 AM
Day 54
WBC 3.30 (They have come up)

Good morning:)

As I type, Katia is eating her morning serving of Rice Pilaf. It is great that she can have anything, anytime she wants. Last night she had scrambled eggs also. She likes Room Service and they laugh that we call so much. They used to call us asking if she wanted to order anything and day after day, week after week, and month after month, the answer was, "No thankyou." NOW! She is making up for lost time.

Katia had a good night. She slept most of it through. She gets up periodically to check to see that I am here and of course ask me some questions to make sure I am awake:)

I am so glad to see her WBC count came up. That makes me happy.

We have also decided to hold off on her belly tube for medicines. Katia is really trying hard and doing well with the medicines they are giving her right now and her mineral oil. She will, someday, go home and have quite a list of medicines to take (all in a certain line of priority) and we are going to try. I have been assured, it would be easy to make the decision later, if needed, to get that belly tube placed. So, for now, we will try to take medicines by mouth and I think she will do really well. I really hope it stays that way. One less thing to get infected is better.

So, that is about all for now.

I was emailed a prayer request today about a young girl and I will place that here. I hope you will visit her, if you can, and offer some words of encouragement.

Corinna

Corinna was diagnosed with a Diffuse Intrinsic Brain Stem Glioma October 2003.

Well, I will close now. Katia must be full. She has just had rice and 13 ounces of milk in the last 30 minutes!!! Where does all of that go? I am glad she is going "poopie" now or I would be worried about all of that food.

Here is a post from Myron. He really enjoyed his time here with Katia and he left this in the guestbook. I always like to move it over into the journal also so that his post and mine go together in the Journal History.






Hello Everyone!It's Daddy ladybug!

Just wanted to share a little with you about little Katia's and My time last night.

I really could not put in to proper wording the bond that my little sweetie and I share. You know how some of you mentioned that you could see the bond in some of our pictures together? Well when we are together you can cut the love with a knife its so thick!

She is so sweet and wonderful, and loves her daddy with a love so pure and without compare and visa versa.

I love so much to see her little smile... I told Tracy it's like a warm explosion inside me when she smiles...

You know, it's just amazing that she does smile, even when she is hurting.

The sad thing is we talk about her addiction to her pain button sometimes and it may even seem funny how many time she presses that button, but in reality, every time my little girl presses that button, my baby feels discomfort, and it hurts me too...

Even though she was not feeling the best, I sang to her and rubbed wherever she ached, mainly her little ears last night. Lots of kisses and huggs!

Thank you God for my precious little baby... and for bringing her this far.

I am so happy that Tracy finally decided to come home, she had a wonderful time... Her baby missed her, and loved up her shirt all night and shared half with daddy...

Sharayah and Tatiana sure did love having mommy around. Today Tatiana called me and said to me "when I came in the house from school I could still smell my mommy in the house, it smelled so good"... they miss even her scent!...:)

Thank you all for being there for us... again know that we are soo thankful for each of you.

This sure has been a long journey and the days are crawling by now more than ever... but still we pray that soon, Katia will be home... Please God... soon...

Luv, Myron








March 29, 2004 8:00 PM

Good evening:)

We have had a nice day. Katia is smiling a lot more, she got out of bed for a bit and she has been eating and "pooping" well. One bad thing is her ears are driving her nuts. I think it is because they are popping. She can't chew gum (she just swallows it) and she doesn't understand the thing of opening and closing her mouth. The thing is she doesn't want them to pop. Tomorrow, ENT doctors are supposed to come visit and figure out a type of decongestant to put her on and see if that will help clear her head and sinuses faster. In that aspect, she is pretty miserable right now. When her ears hurt, she just tries to busy herself cause it is hard to watch TV if her ears are ringing, hurting or plugged up. She really tries to stay happy as much as possible.

She has been quite talkative today and that is nice cause I like hearing her talk and seeing her pretty smile. Myron said that smile just warms his heart. It is something to us that words can't explain to see her smile:) WE LOVE IT!!

Katia is drinking a lot of milk now which is great because she went so long without all of these very needed foods. She is ordering dinner right now:) Rice pilaf, broccoli, bagel, milk and water. Works for me!

Okay, let me answer a few quick questions:)

The chair I sleep in is a recliner chair. It is a vinyl material that is easily wiped off and it reclines and lays back all the way. Although a lot of people say they are very hard, I am quite okay with it. I did look at the air mattresses but I thought they would be difficult to blow up and release the air. I really don't want something that is out and in the way all day. I had seen something at one time that blew up easy and deflated easy but I thought it cost too much. So, I figure I will just deal with the chair (didn't realize it would be for so many days) but the chair is easy to just click back into position and it works okay for me:)

The little meals Katia eats are the little Toddler meals. I have never actually tried the Lunchables. They are cute though. She used to eat these when she turned 2 and they are really good to keep around. She likes the little containers and with the picture on the front, it is easy for her to pick what she wants.

So, I guess that is all for now:)

I am going to go heat up some soup for me! YUMMMMMMMMMMMMM

Love, Tracy








March 29, 2004 9:22 AM (From Home)
Day 53
WBC 2.78


Good good good morning:)

Man, it is nice to be sitting at my desk. WOW! I am drinking coffee from MY coffee maker! Oh, the little things in life...

Katia did fine over night. I talked to Myron this morning and all is well.

Okay, first, I read in the guestbook about the "brown thing" Katia is holding in a picture and has wrapped around her neck with the Game Boy. This is a cute story:)

That is a maternity shirt of mine from when I was pregnant with Katia. It was my favorite one because it was super big and super soft (not very pretty though). Anyway, Katia has had that since her first night in this world. She wouldn't sleep the night she was delivered. Nothing seemed to make her happy so I took that shirt out of my bag (I read they like things that smell like Mom) and I put it with her and put one of the arms around her (just like in the picture) and she went to sleep!!! She has had it every since! When I am home, I like to use it as a nightshirt and Katia holds on to a piece of the shirt (she sleeps with us) all night. She likes to rub the shirt in between two fingers and those two fingers just go and go even when she is asleep. So that is the story of the shirt:) Yesterday, she got it dirty so I had to go right over to the Ronald McDonald House and wash it up. Trust me, Myron wouldn't want to be there if she didn't have that shirt. She told him last night, "It is me, you and Mommy's shirt". When she feels bad, she kisses the shirt or hugs the shirt. The reason it is around her neck in that picture is because she was coughing and she wanted the shirt to "make her cough better". She has her little ways of making herself happy:) I asked her if she wanted me to cut the arms and make it into a blankie but she didn't want that because the shirt can hug her. Cute, huh?

I also am glad so many of you are getting your CDs of the "Katia Song". It turned out very professionally and Katia loves to hear it so I knew others would. We have made it a free gift when anyone donates to The Katia Solomon Fund. We want to share it with the world. I read that on and off in the guestbook but I always forget to respond and say, "Thankyou for your comments on the song." Katia is an easy inspiration:)

Well, I am going to finish up around here. I just called my dad, in Honduras, and he was shocked to actually hear from me. I can only call him when I come home. I tried to use calling cards from the hospital but a 60 minute calling card= 4 minutes to Honduras! Yeah, it is a lot! So, he was glad to hear from me. Myron calls him to update him on Katia but we don't call my dad or Myron's parents as often as we would like because of the calling cost. Honduras is 0.47 cents a minute. I don't know why. Europe is like 0.07 cents or less?

So, I miss my little babybug! So, I am going to get back to the hospital and hug her up and kiss her and try to get her out of bed some today (don't tell her I am planning that).

Oh, someone asked who stayed with Katia when I came home on Saturday (2 days ago). Remember Nurse Sarah that came in on her day off that time and let me leave for a while? Well, she was her nurse that day so I decided that would be a good time to run home:) Katia does really good with some of the nurses, she does good with all of them. Sometimes she really tries to push the limits with or others she will miss me more but with Sarah, Katia is very happy with:) I know these nurses, their life stories, etc. more than I know most of my family. I love the nurses, doctors and all the staff. They make a wonderful and awesome team for Katia!


Let me finish my coffee and get out of here:)

Love, Tracy








March 28, 2004 7:20 PM


Guess where I am? I am updating from my desk at home!!! Myron is with Katia and I am sure they are having tons of fun!

I felt bad leaving her but I know it is best and she is in good hands. I just know she will be so happy when she will cross that bridge with me. Tonight, I can spend time with Sharayah and Tatiana. Sharayah is actually cooking me dinner right now. Fish, rice and veggies:) Pretty good, huh.

Tomorrow morning I will get up and have my coffee on my backporch.

Wow, how did life get so out of whack? I never would have imagined all of this. But, I guess this all builds strength and character and pulls us closer together (not literally I guess) but we are all in this together.

I think about all the friends we have made, the priceless moments we have shared, and just how much we really appreciate life and every little thing each day. I think of all the extra times we say, "I love you" that may not have been if we weren't going through this. I think of how each smile is captured like a photo (probably more than half are in photos) and how we spend everyday making memories. I guess it is a life lesson that I wish we could have just signed a paper saying, "I promise I will appreciate life as if..." and never had to go through any of this. Do I feel sorry for myself? Not at all. I think we were literally chosen by God to go through this. I don't believe God would ever make someone purposely suffer but if they must, he surrounds them with people that love them and will see them through. I feel like our family is a puzzle and each piece has a very special purpose and without one, the puzzle wouldn't be able to click together. Right now, a piece of that puzzle, Sharayah, is making a meal that smells fantastic so I am going to close and go eat or at least savor the flavor!! The cafeteria sure doesn't smell like this at all!

Thank you each and everyone for being a part of our life. You are a big part of us getting through each day. You help bring smiles to our faces, you share your lives with us, and you honor us with your caring, prayers and encouragment. God bless you.


Love, Tracy








March 28, 2004 9:15 AM
Day 52
WBC 2.81

Good morning:)

New pictures!!! YEAH! I went through and found some good ones for you:)

I don't have a chance to really update but I just wanted to add those pictures.

Katia isn't in too good of a mood this morning. Her ears are "being loud". I think they are ringing some.

Her WBC count came up some! I am glad to see that.

I will be back later. Love, Tracy


*******


March 27, 2004 9:00 PM

Good evening:)

I had a great time going home today (we did miss Katia though). I went home just to relax and that is exactly what I did. The house is looking wonderful. I couldn't find anything dirty if I tried! It was so nice to make that trip home. I was all in tears going over the bridge to Tampa cause I felt bad not bringing Katia but I am REALLY glad I went over there today. It makes me feel good to know the place is doing so well and I am so very proud of Myron and the girls. They took care of me like a princess while I was home:) I knew everything would be in order. That is just the way they are. They were so eager to show me:)

Well, I guess you can tell by all the :) s that all was well.

When we got back (Katia doesn't know where I went, "shhhhhhh"), Katia was happy that I had Myron, Sharayah, and Tatiana came with me.

I may go back and spend the night there tomorrow night while Myron spends the night here at the hospital. I just can't wait to get Katia there. I could just picture her in the house, happy and content. Man, I can't wait!!

Well, Katia is still feeling about the same. She has only had 2 doses of the new antibiotic so I am sure it should kick in over the next few days and make her feel better. She is supposed to be on this medicine at least for 3 weeks. I just hope that makes her better and does the trick with this sinus infection. The problem is these kids get sick so much and are on so many antibiotics for long periods of time, the body starts to resist them and just not respond. This is a newer medicine so that is good.

Let's see, what else? Oh someone asked about Katia having a LeapPad. She does have the MY FIRST LEAPPAD and she really likes it. She doesn't understand it a lot so she gets upset but she does try. She also has LEAPSTER and she has the STORY READER that reads her books. That is just a cool little invention there. It knows what page she is on when she goes back and forth and it reads with such clarity. The books have such colorful pages. She has BEAUTY AND THE BEAST, LITTLE MERMAID, LION KING, & SNOW WHITE. You just slip in the book and the little cartridge and WALAHH, it reads! She caught onto that very quickly. We try to keep her busy with these things and she does like them but she has a VERY VERY short attention span and she gets frusterated very easily. She likes things that are more automatic and do things on their own. That is why she just loves MOVIES! Oh, she also really likes the Crayola Markers and books that only color on the paper. She got those for Christmas (mind you these are all gifts to her and I thank each of you for keeping her content and educationally challenged).

Our main concern right now is Katia's ears and sinuses. I want to know this is clearing up because it is keeping her quite upset and uncomfortable. She doesn't sleep well and she is cranky most of the time. She normally is a happy baby (well not much over the last 7 months) and I would like to see her feel better. I know she would just improve so much quicker if she was happier.

Right now she is eating Rice Pilaf and Beefaroni. She has the two bowls next to eachother and dipping back and forth between the two. I am very pleased with her abilities to feed herself. That was a long time in the making and she is really doing well. I know you know how pleased and happy we are to see Ms. Katia eat.

She had 2 good sized poopy diapers today (sorry Katia, but I just had to tell them) and I think she is doing well in that "area".

I think that is about all for tonight:)

Please pray for Michaela from South Dakota. She is needing some prayers and encouragement. Her link is above in the prayer request area.

Have a good weekend:)


Love, Tracy








March 27, 2004 9:00 AM
Day 51
WBC 2.70


Good morning:)

I forgot to mention yesterday about the WBC counts dropping. Katia is being tested for Viral infections or anything in her nose. She had a nasal wash done twice yesterday to catch "samples" (we call them boogers!). Anyway so we wait for that.

Katia had a good night basically. She wakes up a lot. There should be little "Toddler Devices" like timers inside of toddlers that get set for eating, sleeping and such:) Someone invent that!!

I am actually plan on sneaking over to Tampa today! Yes, I am going to go see how the house is coming along:) I know a few things I want to do especially in our bedroom and Katia's bedroom. Some organizing. I want to get the plastic utility drawers and closet organizers. Both rooms have "not so big" closets and need some space saving ideas. I was looking at Walmart yesterday for what I can do. I think I have some good ideas. My belief is "A place for everything and everything in its place". My kids are probably sick of hearing those words.

Well, I am going to get my coffee:)

I wanted to chat with you guys first this morning.

Also, some of you suggested a few things and I really appreciate suggestions. I like "input". As far as sinus masks for Katia, she will not have anything on her face, nothing. No cloths, pads, eye packs, etc. This presents a real problem when she needs oxygen because she won't wear a mask or the nose pieces. Although, I am the opposite. I plead with her to try things but... (that would be another good thing to put in that "Toddler Device")

Katia is also not particular to popsicles. Unless it is her idea first (that is rare) she puts nothing in her mouth.

Oh, I just thought of this. This happened this morning. Katia got oatmeal on her cheek when she was eating and she went to rub it off. She said, "My face is big!" I said, "You have some puffy cheeks right now." So, she wanted to see a mirror. She really is kind of vain for her age I guess. Anyway, she didn't like what she saw. She said, she doesn't want this "in the camera". So I guess she doesn't want me to take her picture right now. I said, "Katia is so pretty, she is a princess." She said, "That isn't Katia." So we talked a bit and I got her to feel better but I am not going to even try to take her picture right now. She also has her eyebrows coming back but they are darker and thicker and she didn't care for those either. All of that is due to steroids and another medicine she is on. She isn't pleased with her appearance right now. I think she is just adorable and I know all of that will go away over the next few months. I have a good idea for a cute picture though so I am going to try that this afternoon. I think she will have fun with it but I won't do it if she doesn't like it.

Well, let me go.

I will chat later:)

Love, Tracy


PS Also, Katia got two videos in the mail. Both are hours of TV programs like Barney, Blue's Clues, Dora, etc. Thankyou:) But the cutest thing was the intro message from the kids who sent it. Katia thought that was awesome. She said, "They said my name!" "They know me!" I had to rewind it and watch. Very cool idea:)







March 26, 2004 9:00 PM



Hello there:)

Okay, first, the results of the CT SCAN. They do show all of the sinus infection still there and also fluid in both ears so they discontinued two of the other antibiotics and started her on a new antibiotic, for at least 3 weeks, since the other ones didn't clear up the sinus infection. This one is stronger, newer, and I guess more directed to the type of infection. She will be on the Gatifloxacin. I feel so bad for her because her head is really bothering her and I guess it is just making her feel like there is a lot of pressure. She is always digging at her ears and rubbing her head.

I got away for a bit today and actually went to Walmart again!! I am glad I found that over here in St. Pete. I was able to get a few things I needed, for us, all on my own. It feels good to have that independence! WOW! Very refreshing:) I was trying to find her something to ease her mind but she is so frusterated right now, she really just watches TV or tries to sleep. I have to say I could get lost in the toy section of Walmart and also housewares. You have to love Walmart. That is like a relaxation therapy session to me.

Katia got some platelets today. She is still needing them every 2 to 3 days. She slept the whole time I was gone. She is eating a little meal I got her and she REALLY likes it!!! Nevermind, she just lost interest. I think she doesn't really taste things too well right now. She is definitely more into snacking so the little meals get wasted too much.

Katia is still very puffy so that is why we really haven't been taking pictures much. She isn't a happy camper right now and you can easily see that. When she does get out of bed, we need to hold her hands so she doesn't fall over and then our full attention stays on watching her and enjoying her being out of bed. So, that is why there haven't been any new pics posted:) Sorry.

Thank you so much for those of you sending the pics. This is turning out to be a very nice and successful little project. I am very happy with the way things are turning out and you all are just beautiful people!

Well, I need to get Katia her medicines down. She has 3 to take at night (there are more than that but some get mixed together) and she really is a challenge to get her to take these.

Love, Tracy









March 26, 2004 9:30 AM
Day 50
WBC 2.85 (??)

Good morning:)

Okay night...

Katia did well during the night. She didn't want anyone to bother with her (who would) so she got upset a few times with her blood pressure being taken and of course had to take meds in the night because it rose high. This morning, she is doing the same thing. Her pressure being taken is not at the top of her "favorites list".

She has eaten this morning but not as much as normal. That is okay though. She is doing good. I will find out today the results from the CT SCAN and she will probably have a belly x-ray done today also. I think her "stools" are finally emptying out though (*sigh of relief).

I am not sure why her counts are still going down but I am going to ask today. They may do some GCSF to help bring them back up again.

I will be back later.

Here is a prayer request from today that was sent to me via email.


Crystal Rose
I received this request via email. "She is a teenaged girl in Arkansas and it looks like she may be losing her cancer battle. She has been on a ventillator for weeks and the doctors are now pessimistic about her chances for recovery. Her mother seems to be dealing with this all alone and she doesn't have very many visitors to her site (compared with others I visit). I just thought her mother might gain some comfort from knowing prayers were being said for her little girl, and she might could use some additional support." I am sure some encouraging messages would be very uplifting in this matter. Thank you.

Please pray for everyone in general today. I can't think of one person in the world not in need of prayer. Our government needs prayer, our teachers, our doctors and nurses, our children, our parents, etc. Everyone needs prayer for some reason. Pray for yourself, too:) I always tell Katia to talk to God just like He was right in the room watching her (because He is).

Love, Tracy










March 25, 2004 9:00 PM

I guess I should update sooner than later today. We are scheduled to go down and have a CT SCAN done in a few minutes of Katia's head. She hates the sinus one because she has to put her head upside down and it hurts her eye where the tumor is and she gets scared so she will get some medicine (Verset) to help take the edge off her worries. We are looking to see why her ears are so sore and she is saying she can't hear at times. She can hear most of the time though. I think it is fluid so if this doesn't show then we will have to see an ENT doctor.

Katia has been pooping so I think that problem MAY be clearing itself up but I believe they have decided to give her Citrate Magnesia for a few days just to really clean her out good and then let her stay on the Mineral Oil to maintain her. It isn't that she has been constipated, it was just such a build up. Even though she was going, and she was not passing hard stools, (they were just right for her) she just wasn't going enough. It is just her body hadn't eaten for so long and when she did eat, she got packed from top to bottom. BUT she seems to be clearing up:) The GASTRO doctor said the Mineral Oil seems to be doing the trick though.

She did get out of bed for a bit today and walked a few steps and then rode her little bike some so that was nice. I got to hold her with me for in the chair with me, all unplugged and that is always nice cause I can hug and squeeze her:)

So, that is about for now. Let me update cause they are here for us!


Love, Tracy








March 25, 2004 10:00 AM
Day 49
WBC 2.99 (Going down?)



Good morning:)

I think today is headed for a repeat of yesterday... I hope not.

Katia's ears are still bothering her. We put some stuff in to break up any wax to see if that helps but the wax isn't enough that it should be bothering her.

The night went okay. She is using her pain button a lot but right now I think it is because her ears are bothering her so much. The hard thing with her age, lack of communication ability. One minute she wants the TV up loud and then all the sudden, she wants it turned down. She won't leave her ears alone right now.

Her belly doesn't seem as puffy this morning but she is loading it all up again right now. I like to see her eat but I wish her bowels would start emptying themselves out. The GASTRO docs are supposed to be in here in the earlier part of today. I really hope they have a good idea.

Anyway, not much else is going on. Myron and I were talking last night about whether I want him to spend more time here. He is ALWAYS available to come stay the night or spend the days. All I have to do is let him no but I really really prefer to be here. I am just more on top of what is going on with Katia and he is more on top of EVERYTHING else. We have this worked out to the best possible way for us in this given situation. I, of course, would rather all of us be home but, for now, my place is here with Katia until I can take her home. This definitely takes teamwork and I am glad we have a good team:)

Okay, well Katia is not having a good morning. She is cranky, doesn't feel good, etc. so I bettter finish this up and post it.

Please pray for her to have a better day, all the way around.

Love, Tracy








March 24, 2004 10:00 PM



Hello...

Long long day but Katia is now sleeping.

All I can say is WOW! There was a lot of temper, pain, etc. today. Katia did a lot of screaming and getting mad and feeling bad.

Our day...

No new news on the poopies. One doctor came by today and another will come by in the morning. We aren't just looking to empty out all of this stool (although that is a MUST) but we need a solution also. Katia has been on just about every laxative there is and for extended amounts of time and higher doses. This isn't an easy problem to solve. I mean she used to be in the hospital most of her time because of "butt problems". She is sick of "butt exams" and drinking yucky stuff just to do something yucky in her diaper that has to be cleaned up. To her this makes no sense whatsoever. To answer a few emails all in one about sitting Katia on a potty and letting gravity take effect, Katia will not sit on a potty. She has tried a selection of potty seats and even real toilets and toilet covers, etc. She just won't. She screams until she is red and sweater and sobbing saying it hurts her bottom (no matter how thick the little seat pads) so that idea has just been thrown out. This has seriously been a problem and we have tried, and the doctors have tried, a lot of solutions and ideas. We landed on the mineral oil pretty reluctantly but we had nothing to lose and it worked! We were all happy. The main problem, to me, is to empty out the build up right now. I think the mineral oil will then maintain her. Since she just had transplant, she can't have suppositories or enemas, etc. We have to work from the top part of her, not the bottom.


Her main problem today would have to be more temper. I will give you an example. Katia loves Rice Pilaf. She orders it a lot. Anyway, today the kitchen's idea of Rice Pilaf was plain yellow rice. Katia is a little rice expert and that doesn't go over with her. So, she has lived on Beefaroni today.

Another big temper blowout came because she SAID there was a wet spot on her bed pad (*there wasn't). So, I told her to show me where it was and I would change her bed pad. OH, SHE GOT MAD AT ME! She was slapping all over trying to say where it was but she couldn't show me. I usually have to change her shirts, bed pad, pillow cases, blankies, etc. about 5 times or more a day because of a water spot or even a tear drop from her crying over "a water spot". I tell her, "Tears make waterspots," but she doesn't get it. Well today, I just get tired of changing a "wet" beds and "wet" shirts so I told her to show me. Needless to say, she needed Ativan to calm her down but I decided first, I would just take a break and walk away. Her nurse (poor Ethel) had seen what was going on and she tried to get Katia to show her the "wet spot" but it just wasn't there to be shown. Anyways, I came back shortly and Ethel had put a white wash cloth over "the wet spot" and Katia was happy:) You got to love the nurses!

Another example. A "runaway beefaroni noodle" tonight. Well, I offered to help her all the time cause those little suckers are slippery. Well she didn't want my help. She wanted to do it so she chased this little thing all over with a spoon trying to pick it back up off the drop cloth and she couldn't but then... she flicked it onto the bed by accident. OH MY GOODNESS!!! She was mad! She lost it over the fact it left a spot on the sheet and that she lost it. I couldn't do anything to end that problem. I offered to feed her, to change the sheets, etc. but nothing was going to work so... little white wash cloth covered it up. I wiped off the little spot but that left the spot wet so I just covered it up with a cloth (that works). By the end of a day, I am going to have 20 washcloths laid across her bed.

Then, tonight she was saying she couldn't hear anymore and her ears hurt. That scared me. She was screaming and screaming and yelling she couldn't hear. She does have some wax in there but nothing that should be really bothering her. She had her hearing checked prior to transplant and all was perfect. They are going to check back with her tomorrow. One idea I have, Molars? Maybe she is teething...

Long day!

Day is done....

Tomorrow will be better:)

Love, Tracy









March 24, 2004 10:30 AM (started at 7:30 this morning)
Day 48
WBC 3.82



Good morning:) (LONG night)

Well, I have actually started this update since 7:30 AM but I keep having to pause and walk away so I will make it very quick:) Yeah, right.

Katia had an okay night. All she wants to do right now is eat and watch TV. The problems with this is the eating is making her more full of bowels and the movie after movie, she gets no sleep. It is a lot of going back and forth all night with her asking and me having to say no and then she ask again and again so it makes the nights (and days) very long. Today is day #211 in the hospital and I am really feeling it. I have a lot of patience for the most part but I would be lying if I said this doesn't get to me. Of course it does. I really try to not complain. When I get to the point of complaining, I think of those families who have lost their children or are spending their last days, weeks, or months with their child. But, I am human and I just really want to get back to my house and around my family and be able to settle in. I know that when we go home, there is always the prospect of a fever or sickness to bring us right back in here. Any fever is at least 3 days stay to run test and such. Any low levels with her potassium and such means an admit or a line infection in her broviac, etc. etc. But, I will be glad to have a break. When we pulled out of our driveway 211 days ago to come back here, just 12 hours after finding out that Katia relapsed, I knew we were in for a whole new fight, but I didn't know it would be a solid, long hospital stay with all of the ups and downs we have gone through. I really didn't expect more than a month or so and then a break home and then back again for transplant. Even transplant is usually in the hospital less than 100 days. So, in my mind, I didn't realize she wouldn't see the house for so long again. I remember thinking the whole way over that I felt like I had just stolen her childhood away by bringing her back to the hospital. I knew all the risk we were facing and I just really feared not bringing her back home. I really really want to get her back in that house just to be able to reach that milestone. That was a HUGE HUGE fear of mine driving over here. Transplant can have so many life-threatening complications (more so than the cancer itself). I am so pleased with how well Katia has done. She has her problems but nowhere near what it could have been. I am grateful to God for bringing Katia to day #48 post transplant. Thank you, God for also getting Katia to eat again. Months without eating were tearing her up.

Anyway, someone asked in the guestbook about Katia's ANC (which is her Absolute Neutrophic Count-someone's immune count). I will answer it and then explain why I don't include this in her updates. Her ANC today is 2750. Back when Katia was just getting chemo, I trusted those counts a lot more to really let me know what she could and couldn't do and how easy she would be able to catch a bug or virus. At 2750, she would normally be able to go to preschool if she was in school. Things are totally different now. Katia will at least be out of public places including churches, malls, stores, schools, etc. for at least 6-12 months. She has no antibodies. A normal child her age would have the antibodies given from the mother at the time of birth and also the immune backup given by all her childhood immunizations up to now. Katia has none of these so therefore she can catch anything that drifts by her. I do keep up with her WBC count but not so much as a way to know what she is able to fight but as a way of knowing that her new bone marrow is producing these cells, the her red blood cells and finally her platelets. I hope that explains the difference.

Okay, well let me post this before it becomes tomorrow:)

Love, Tracy

PS This little graphic here was sent via email from Brenda:)

















March 23, 2004 8:30 PM


Hello:)

Well we have had a long afternoon. Katia did get her CT SCAN. The good news is, no sores or absesses. The bad news is she is PACKED with bowel, VERY PACKED. The plan? Not sure yet. The doctor is talking to the Gastro docs. I am thinking, maybe GoLYTELY. I am not sure though. First, that is a laxative (Polyethylene Glycol-Electrolyte Solution. It would most definitely empty her out (unless there is blockage-which we don't know yet). The problem is, it would be a LOT for Katia to drink and in a small amount of time. That is pretty well, impossible. She is so bloated and full, she is not going to want to get more and more bloated. She will eat, she is hungry should I say. She only eats a few bites of this and that but she does that often, causing more to be packed in there. This is a tough situation for her right now. I know we can clear it up but I just don't know how. I am waiting to hear the new ideas from her doctor.

Katia just went so long without eating and then, BAM! She is in LOVE with food, a LOT. I just feel really really bad to see her in pain. You know?

Anyways, that is about it for now. I will update later if I find out more tonight. Her doctor is still around here.

We have also placed more pictures in her scrapbook:) Thank you. Love, Tracy









March 23, 2004 9:50 AM
Day 47
WBC 3.44 (Going back up-yeah)

Good morning:)

Our night went reasonably well once Katia's pain med was turned up. I think she slept better last night than she has the last few nights but, of course, she was up before the sun.

I have had coffee and oatmeal this morning so I am ready to type now:)

We should be going for the CT SCAN around 11:30 this morning so maybe we will hear something early afternoon. I am really hoping they find something because then we can solve her pain problem. If nothing shows, then we are back to figuring out why she is hurting.

I have a request for you. This is not a health request but Cheyenne is a 12 year old girl with a Brain Tumor. She goes to Public school and yesterday, kids were quite mean to her and hit her head with a basketball. I really don't understand how kids can tease a child with a serious health problem but I guess to kids, everything is open for poking fun at. I just know that it had to be hard to deal with and just the fear over getting hit in her head. At 12, she knows how serious that could have been.

Also, please pray for another AML patient up here, Nicole. She doesn't have a website. She is 18 and she was diagnosed in December 2003. She has really had a rough time from day one. She has a fungus in her nose and had to have a pretty extensive surgery yesterday taking a lot of this out of her nose. She will probably require more surgeries and then plastic surgery to fix her nose after all of this. Her parents are just so nice and we see eachother quite a bit up here. So, please just keep Nicole in your prayers.

So, I guess I will close for now. Katia wants to eat and she can't but she does get to drink... CONTRAST! YUCK! So, I need to help her get this contrast stuff down for the CT SCAN and cheer her up some. Daddy and sisters are on their way here in an hour or so. That should cheer her up.

Love, Tracy








March 22, 2004 10:00 PM

Good evening.

Well another long day is done. Katia has been through a lot of pain today but she is resting peacefully now. We had to turn back up her pain meds we were trying to wean her from. Tomorrow she will have a CT SCAN of her bottom to see why it is hurting so much. She ate very well today, drank very well today, had good bowel and bowel and urinary movements. All of that seems to be going good right now.

I asked about her WBC count dropping and the doctor is not worried about it, yet. Katia did get blood and potassium transfusions today. Both levels should be good by tomorrow's labs.

I want to thank those of you sending pictures. I am already placing them in the book. It is a Ladybug Photo Album (how appropriate). I can't wait to fill it up!!! We have about 20 pics so far and many more to go. I also have a little book of Katia's that I have kept for a long time of the Caringbridge kids we check on (by Caringbridge, that includes even kids not using Caringbridge sites). I haven't been printing pictures of the new children we keep up with so I am trying to organize that now. It is Katia's little prayer book (even though our prayers include everyone).

I think Katia really understands the power of prayer. She was praying today for the Doctor to make her butt pain go away and later she said she felt better. I am glad to see she knows where to turn in case of a need. I have learned to be more thankful to God during these times. I think I used to more just pray in a time of need but I pray a lot more when I am thankful now.

Well, I will keep this short. It is 10:00 PM and I haven't eaten yet:) That is me. Love, Tracy









March 22, 2004 9:30 AM
Day 46
WBC 3.24 (Down more?)

Good morning:) We had a good night, not much sleep but no real problems. Katia's clock is just really out off of schedule. I was trying to get a couple of catnaps but that doesn't work. Katia's mornings are busy with medicines starting and ending and then when they gave me her blood counts, I am concerned about the WBC count dropping again so I can't really rest. Am I worried? A little. Mainly because I just don't understand when I should be concerned. I am going to talk to the doctor about this today.

Last night her teeth were bothering her with pain on and off. I really was at a lost of what to do and why they would be hurting but we gave her Tylenol and that seemed to work. And (there's more), her butt pain was still there and I can't imagine how bad that feels to her. I just really feel bad for her because she does have a high tolerance for pain, usually, and she was just sore and really nothing can take that pain away when she gets it. We have been through this many times in the past.

Well, I am going to sum this up and go get some coffee (no coffee in me yet). I went earlier but, where I get hot water, the room was closed for a conference so I need to go try again so I can wake up completely.

The girls are on Spring Break so I am sure they will be around here more. Maybe that will help get Katia more active. I don't want to keep making her get out of bed till I find out more about her butt.

OH GOOD NEWS! No platelets needed today either. They are at 20 (normal is 150-450 but they don't expect that yet) which is right at her transfusion limit so they will wait till tomorrow. She is however getting blood and potassium transfusions today because both of those have dropped.

I will be back later:) Love, Tracy



***********

March 21, 2004 7:13 PM

Katia did get out of bed for a bit and wobbled around crying so finally we just went back to her playmat, she laid on my lap and we read books together (works for me!!!)

She is sleeping right now and she said she was going to sleep to dream about a hotdog? I didn't know what she meant so I asked if she wanted one and she said no that she just wants to dream about one. Then, I remembered, she did that a few mornings back and then woke up and ate most of a hotdog:) She is four so what can I say?

Well, the project I have been working on is just a page of Katia's Helpful Links. Nothing big but I am trying to get a lot of the different available organizations out there and Katia's stuff all on one easy page to just click on the icon. A lot of those links, you may have heard of and others you may not have heard of. I will keep adding them. Right now, I am also updating the "Medical Links" pulldown menu above with more links. There are a lot of diseases I did not have on there and still many many more. That is sad. I like to have an area where people can quickly gather information about a vast number of things.

So, that is about all right now.

The "Katia's Helpful Links" will remain in the links section at the bottom of the page for you to always go back to.

Love, Tracy


March 21, 2004 5:00 PM

Good afternoon. I have a prayer request for Katia. She is saying she can't go poopy because she has a sore. Please pray she only has the "feeling" of a sore because, in the past, when she has had rectal tears or sores, they have taken a very very long time to go away and have caused her a lot of pain and grief.

Other than that, she is eating well today and I am about to try to get her out of bed right now. Same thing though, if it is a sore, that will not work for her. I know something is up because she complains about even sitting on the soft mat. She just wants to lay down. I have a feeling we will be doing an MRI of that area early in the week to see what is up.

I will be back later. Love, Tracy

PS I have been working on a small project for a webpage. I hope to get it up tonight and add a link here to it and then I will let it grow with time.









March 21, 2004 10:31 AM
Day 45
WBC 3.37 (Down?)

Good morning:) I am not sure what is going on with Katia's White Blood Cells... It isn't a huge drop and I don't think it is a concern unless it continues to go down. Her platelets however held so this is the first time, since transplant, that she will go 2 days without a transfusion:) That is good, very good!

We had a good night. We had 4 straight hours of sleep from 12:30 AM - 4:30 AM. I LOVE undisturbed sleep:)

Then Katia got up bright and early wanting breakfast but when it got here about 20 minutes later, she was too sleepy. I told her, "That is why we sleep until at least 7:00 AM." She doesn't understand that idea too much. Oh well, I try.

I have really enjoyed reading how everyone has found Caringbridge and I know that each of you read other people's entries. It is nice to sit down and read (better than most books!)

I do have something here to add. A lot of people say they don't want to sign the guestbook because they figure that isn't for "strangers" (what is a stranger?)
Anyway, out of the guestbook, I am going to say that 98 percent of entries come from people I have never had the privilege of meeting. So, please never hesitate to sign the guestbook. Once you do, you are no longer a stranger:) I am going to leave this at the top of the journals so that everyone feels welcome to sign.

I get quite a few emails from others about the guestbook and how uplifting and encouraging it must be. It is very very uplifting and encouraging. I think the day Katia sits down and can really read and comprehend those entries, she will be all in tears but smiling. So much love and concern is shown there. I also love to hear about your families or your daily things too:) It gives us all something to look back on. I also appreciate those of you who tell others about Katia's page. It means the world to me that Katia's story be heard because I really think she has a special mission and that is to expand the Marrow Registry and just to make people aware of how precious life is each and everyday (even those little handprints on the windows or the missing things from my dresser that I later find in the trash). I have learned so much from my own little baby:)

Well, I am going to "Scadaddle" right now and clean up a little around here. I enjoy cleaning:)

Myron and the girls are home doing yardwork and housework. We want to do something in our backyard like put a pond in or landscape a part of it for a few reasons; to make it look very relaxing and an escape, to cut down on the mowing area, and to give the kids a place they can go "hang out" without really "hanging out" (if you know what I mean). But today they are just edging, mowing and clipping and housecleaning. They are very proud of their cleaning so I think I am going to make a trip home just to pat them all on the back. I am glad that my kids participate in all of this. I think it is a good life lesson. Myron has just been so amazing with what he is able to do at the house and also work on bringing awareness to The Katia Solomon Fund and find time each day to get over here. He is such a great daddy and husband! I am very blessed to have him as I am each member of our family:)

I will be back later.

Love, Tracy









March 20, 2004 9:24 PM


Good evening:)

WOW! I just read a lot of your replies about "How you came to Caringbridge Sites" and I am just amazed at what a small world this really is. I don't mean small in the way it sounds but when you look for help or people to pray for, we are all the same. We all need prayers and when we see someone else in need, our hearts fill with compassion. Through all of this with Katia, I have learned there are so many good, caring and just gracious people in this world. I have also learned how easy it is to help others. I mean, if someone needs prayers and you pass their name on, it is amazing how word of mouth really spreads that prayer request. I am amazed when I link to a site and when I go back to their guestbook I see, "I found you from Katia's site..." I am just so thankful to see that. What warm hearts. And I know so many more people are praying for those people even if they don't sign the guestbook. I go to a LOT of sites and don't sign often especially now. I used to be a lot better about signing guestbooks, a LOT but now, I barely do since I just get signed off so much or the length of time it takes to open a guestbook on my internet connection. BUT I do pray for everyone in general and then when I open a site and read their daily updates. I really really believe in the power of prayer. Through all of this, my faith has grown, my tolerance has definitely grown and my level of patience has been raised a LOT!!! Thank you, God for that! Boy, it comes in handy...

Katia had a good day. Myron and the girls spent quite a bit of time here today and this evening and it was very nice. Myron and I went and got coffee together downstairs while Sharayah and Tatiana entertained Katia and then Myron and I went to the conference room to eat lunch together while the girls all played together. That is a nice escape:)

I am getting very eager to go home right now. I just can't wait. I understand Katia has a lot of things to complete and a LOT of medicines to wean off of and quite a few to change from IV to oral. She has to get her blood pressure under control. She needs to get her potassium levels good and she needs to be a lot more comfortable walking and more willing to do that. All in good time and I really feel she will start rapidly improving since she is eating so much better. She also needs to get her bowel movements more regular and into a routine.

I have updated a lot of the prayer request so again, thank you for keeping up with these children. If you followed a child I previously had listed but you don't see them in that section any longer, please check the pulldown menus above:)

Love, Tracy






March 20, 2004 11:00 AM
Day 44
WBC 4.26 (Hanging on good)

Good morning:) Nearly afternoon. I haven't even had coffee yet. We are having a LAZY morning! Those are good though. Katia has been having booty pains this morning but she continues to eat despite that. Her determination and will power is what will get her through this. She is very DETERMINED! Hey, that is a nice way of saying stubborn, isn't it?

Well, she slept okay last night but she was up early this morning and ready to eat about 6:30 this morning so she had oatmeal and bacon with milk. I am so very happy she is eating. I appreciate every little bit she takes.

Well, I am going to run and get my coffee.

She asked me earlier why I had no coffee... Cute, huh? Maybe she is asking me to leave. Well, I will be back:)

Oh, thank you to all of you who have ordered Katia T-shirts, CDs and such. It will be a neat thing when I run into someone wearing one of her shirts in a store or something:) Small world.

Love, Tracy












March 19, 2004 11:00 PM

Sorry so late:)

All is okay here. I was talking to some other moms and well you know how talking can get out of hand:) We all need that.

Katia had a good day. She did get out of bed and she WALKED on the hopscotch and we call it a "bridge" so we made a few trips across the bridge. She wasn't happy too much but she did it because she was told she had to do it. At least she listens, I guess.

Then, we sat on the playmat for a while and read some books together and walked around a little bit more. All in all, she was out of bed for about 2 hours actually, maybe a bit more.

I know she will probably sleep better tonight and hopefully she will see that it helped her to feel better but she knows our plans are to repeat it each day.

Well, I am really tired and my eyes are really tired. I have misplaced my glasses somewhere so I am using reading glasses right now. I have to get used to this. They aren't bad though. They are easier to take on and off than my glasses and I really don't like having anything on my face.

I appreciate all the visits to the prayer request sites I mention. I do get emails giving thanks to each of you and that is just so uplifting to come to your guestbook and see that someone came over from another site just to show encouragement.

I have a question:) You know me.

I hear from all of you, quite often, in the guestbook and you know all about Katia and our family. What lead you to Caringbridge? I know a lot of people have found Katia's site through other Caringbridge sites but what brought you to Caringbridge? I wonder if I would have ever known about this had Katia not been diagnosed. I believe God leads us places for a reason.

Love, Tracy









March 19, 2004 9:30 AM
Day 43
WBC 4.30


Good morning:)

I am going to update quickly because I need to go do some laundry at RMH this morning. Katia wants me back soon so when she gets unplugged from her IV, she can WALK!!! Yes, she is asking:)

One of the nurses bought her a hopscotch thing that she is very eager to use so she wants to finish up and get out of bed!!

She had a good night. A lot of talking and being awake but overall it was okay, no getting sick so that is good.

She has had 3/4 serving of strawberry oatmeal and one piece of bacon today, 3 ounces of milk and now she is eating some scrambled eggs (ooh I would hate for that to come back up). She is doing well this morning:)

So, let me run so I can get back for some Hopscotching Fun!!


Love, Tracy


PS I will definitely try to get a picture of this:)









March 18, 2004 8:35 PM

Good evening:)

We are here watching this "Extreme Home Makeover Show". I love this show. It always makes my eyes get all watered up to see what awesome things they do! WOW! Such a good family show to watch. Those are nice.

Katia is resting on and off. The infusion of the IV IgG is still going. She has done well with it:) It goes over 5 hours.

I think that will be once a month.

I sit back sometime and just think how amazing medicine is. How amazing doctors are. All of this is by the grace of God. God allows the scientist and researchers to learn about new ways to help us and He helps the doctors be able to go through school and have clarity of mind to know when to do what. Not to say that everything runs perfectly and everyone is healed or saved but it still does amaze me. I think back to not too long ago when so many things that are now easily cured or avoided used to kill so many people. Amazing. Thank you, God.

Katia has had a pretty painful late afternoon. She did have a few poopy diapers but after quite a bit of pain. I feel so bad for her but I do think that once she gets into more of a routine with her bowels and her eating, her body will learn to again, work together. I think she understands that too, actually. Over the last few weeks, she has been having high blood pressure and is taking 2 different medicines for this. When she gets all upset, we worry about it shooting up because normally, her pressure used to stay low. Hopefully she will become happier and her pressure more stable with time. She really HATES taking her blood pressure medicines along with her other oral medicines right now, so that kind of raises her blood pressure? Anyway, hopefully this will work itself out soon.

Please pray for all of our neighbors on this floor. As I walk around and see everyone, the parents, the patients and the families visiting, I just wish nobody else had to ever face this. It is just so much more than I ever imagined. I used to always watch the St. Jude Telethons and it touched my heart but I never knew it was all of this. Not only do we see our own child going through this but it breaks my heart to see the other kids and families suffering. I hate to see people relapse and have to start over. I hate to see newly diagnosed patients and I hate to see the patients and families that find out they are no longer responding to treatments and there is nothing more that can be done. It is just so heartbreaking. Only by God's grace can I keep a positive attitude and wake up each day without being completely depressed and crying. I would have never dreamed I would have been capable to go through this if I knew all that was involved.

I also tell so many people and my family how much this Caringbridge site means to me. It gives me a chance to journal and share my thoughts and feelings, Katia's daily progress, our hopes and dreams and also other prayer request. There is nothing like telling someone, "Sure, I will ask my friends to pray for you." and know just how many people will actually be praying. What a source of togetherness and inspiration. I gather so much encouragment by the friends I have made through this page and I have learned so much about you and your families (even with my very bad memories of names) and I appreciate your sharing yourselves with our family.

Well my prayer for tomorrow is that Katia's WBC count will stay the same or go up on its own. I pray that she will feel better tomorrow and be able to get out of bed. Love, Tracy






March 18, 2004 5:16 PM

Well we have started this IV IgG treatment and so far so good, no bad effects.

I will update more later.

Love, Tracy







March 18, 2004 10:00 AM
Day 42
WBC 4.28

Good morning:)

Our day is going well so far and that is good. Katia started her day with a hotdog and she just ordered Strawberry Oatmeal. I can't wait to see what my grocery list will look like at home:)

The doctor says Katia must must must walk more each day. I have a very hard time getting her to walk without screaming and crying. But, she has to. Our hopes, the doctor says, is to get her out of here before 50 days from now. There are a lot of things to wean and plan on how to continue. I think when we get out of here, Katia will be very stable to go home. Over the next 2 to 3 weeks, we are going to try to wean her off of her IV fluids completely. Katia has shown she will eat and drink better and better as the days go on. Just please pray for her to get more walking in. She really worries about falling down and she says her belly hurts. She still gets quite shaky on her feet. But, we HAVE to get her up and walking and that is what we will do:)

Katia is still needing platelets about every other day. She is holding them for about 36 hours. Some of that is due to the GVHD (Graft vs Host Disease) she is currently having so hopefully as that improves, her platelets will do better. Do you notice her WBC count came up quite a bit on their own? So we consider her to be 100BC engrafted now! That is a step ahead. Next will be her Hemoglobin (which she is doing well with) and then finally her platelets. When we can go about 5 days without platelets, that will be a big thing.

Today she is getting IV IgG (Immunoglobin) transfusion.

Well, she just got a little sick and threw up but I think she is just over doing it sometimes with food and drink. She needs to slow down a pinch:) I know she is trying ot make up for lost time but...

So, that is about all for now. We will probably scan her sinuses early next week so she is longer into her treatment but they seem better and her cough, although more persistant right now, is loose so it seems to be working and draining the sinuses.

Have a good and safe day and give your kids (and grownup family members) a hug:)

Love, Tracy



PS About has Katia ever seen snow? Not yet:)





March 17, 2004 9:03 PM

Good evening.

Well our day went okay, after 2PM. Katia had her procedure done in O.R. to remove the left over stitch and come to find out, it isn't a stitch. It is the broviac connection partly pulled out. It seems to be okay though. They cleaned up the area around it and we will keep an eye on it. I THINK they feel they want to replace it but we will see. I am hoping it will just be able to do its time and not have to be replaced.

Katia was so so mad that she couldn't eat so when she got back to her room, boy did she make up for lost time. She has had a super appetite today!!! I am so very pleased.

Somone asked about the feeding tube. Yes, you can still eat if you have one. Why would Katia need one if she is eating? Well, although she is eating, her calorie and fluid intake is nowhere close to what she needs AND Katia has a problem with the few oral meds she is on now (2 meds 2 times a day).She will go home on a lot of meds that she will HAVE to take and KEEP DOWN without throwing up. So, at this point, the feeding tube is still in the plans. It would be in her belly and flush with her skin so it isn't something too unpractical for her.

Katia is okay with it just for the fact of being able to take medicine through it. I am happy she would get adequate nutrition and the supplements (like potassium) she may need. I also think it will help get us out of here on time.

For those of you who keep up with Casie S., she promises to update her page in the next 36 hours. I talked to her quite a while today and she was actually OUT AND WALKING AWAY FROM HER ROOM! Casie is also having a lot of problems with her lungs, like Katia. I know she is just getting worn out and it is very very hard to stay positive in this situation. She is such a sweet and compassionate person. I just want to see her do so well and be able to get back to living her life. She is a good kid. I talk to her mom quite a bit and she is such a comfort to me. Us parents up here learn to rely on eachother and I wanted Casie to start her Caringbridge site because of the support and love we get. She has just felt so bad lately and it is hard to get out her laptop and gear up to update but she PROMISES. She really does want to. She wanted to tonight but she was getting some IV Benedryl so that is GOOD NITE.

Also, in the prayer request above, Michelle (a teenage girl that has been fighting Neuroblastoma), passed away yesterday evening. I am sure her Mom Jacqui will really miss her but it sounds like she feels comfortable with Michelle not having to suffer. This is a very unselfish feeling that no parent should have to go through. God bless you, Jacqui.

Please keep our friends in your prayers, even if you don't go by their site. We all could use prayers. These kids are just fighting so hard, beyond my comprehension. I cannot imagine what some of them must feel or what their thoughts are.

Also, Bailee D. is back on the floor and in the room next door to us. I know their heads must be swimming tomorrow as they know everything starts again tomorrow and it will be another long road. Bailee is just such a happy-go-lucky little girl.


God bless each of you.

Love, Tracy






March 17, 2004 9:50 AM
Day 41
WBC 3.68


Please pray for our friend Bailee as she has to start this fight all over again. She has relapsed with Leukemia ALL and I just know they are scared and frusterated all at the same time. Bailee is in the Brownies and has a really cute picture on her site. When I see that, I just think, "Why can't she just be a kid?" Please go by their site and offer some words of encouragment. I know they could really use it. I remember what it felt like coming back to the hospital and I just felt so empty and worn out inside. The drive over here was so rough. I didn't know we would be here so long then but that is what dealing with Cancer is, you just don't know what each day holds. It literally just runs your life and your emotions. Right now, Robyn, Bailee's Mom, is probably just boiling over with emotions.

Also, I am working on getting Casie to update her page. I visited with her, finally, the other day and I just know she is also getting worn out from just having to fight. She is a teenager and she wants to just go live. Please (even though she hasn't updated) go by her page and offer her some "Cheering up and words of strength and encouragment". She had 98 people register at her Bone Marrow Drive!!



Good morning and Happy St. Patrick's Day.

All is okay here. We actually had a good night. We aren't having too good of a morning because Katia can't eat until after she gets that stitch out in SPU which is scheduled around noon, hopefully a little before noon.

I have no lab reports yet but I do know she needs platelets, I think they are like 15. I know her WBC count stayed around 3.7 somewhere which is good.

I hate when she can't eat! She doesn't understand the reasoning at all. She is sitting here counting to herself right now and periodically crying. She just told me, "Mommy look, I have tears in my eyes." These are the times I just want to scream, you know?

Well, let me finish this up. I can play a game with her and get her mind off of food:)

Love, Tracy











March 16, 2004 9:20 PM

Good evening. Tonight is going well. Katia did get out of bed today but cried the whole time so we gave up. She really says her belly hurts so I want them to do an ultrasound. Tomorrow we start the day NPO (can't eat) and we will have that leftover stitch in her broviac removed in SPU (Special Procedures Unit). She will not be happy about no food in the morning. So, if there are any cancellations, we will move that up.

Today her doctor was talking to me about the feeding tube in her belly. It will probably be done next week sometime. We need to get her off of the IV fluids and be able to give her more medicines by mouth (by tube). The G Tube goes in belly and is flush with the skin. When you want to use it, you just snap in a tube and wahlah. Katia can't wait to get it. It will also enable us to up her calorie intake. So that will help, too.

Let's see what else. I am about to change out the pictures as soon as I am done with this and I hope there will be more smiles, more often, in the days to come.

Katia's potassium raised up today with just one bolace (IV DOSE OF POTASSIUM) so that is good. Hopefully it will maintain overnight.

Katia has been very sleepy this evening (same as last night) and then she puked so I am praying this is not a repeat situation. I still don't know what could have gotten her that sick. I just hope she didn't have it today.

So, let me do the pictures and then I plan to relax some. I have been working organizing digital pictures (some friends got me an external CD Writer for my laptop) so I feel like I have just repeated the last 7 months.

So, let me update the pics:)

Love, Tracy







March 16, 2004 11:00 AM
Day 40
WBC 3.70


Good morning:)

All is better here this morning. We had a long long night but not because of throwing up. Katia's just messed up on when to sleep and my body wants to sleep at night so...

Good news is her CT SCANS appear to be doing better so the lungs are in good shape!!!! There is a little area that looks "shrunk" but that is okay and probably just because of the areas taken during the previous surgeries. So that is all okay.

She is showing signs of the GVHD on her feet and a little on her palms so she is staying on steroids (lucky us) until that clears up more.

The biggest problem and concern is her potassium levels keep dropping way to low and she requires bolaces to bring them up so we are trying to wean off medicines that could be causing this problem. One is the Lasix but she can't have fluid retention either. They have been trying her on Spironolactone which is another diuretic but more potassium saving. They have now made that dose two times a day and maybe try to turn down her fluids and take away one of the lasix doses. It is just a real balancing act to keep her from swelling back up so much. She is still puffy.

The other thing is to start weaning her off the Amphotericin but that is what is really protecting her lungs so they need to discuss that with infectious disease to see how to go about doing that and still protect her lungs. Those lungs really can just mess up so quickly, even when we go home. That is why we are needing to do the Ionic Breeze Air Purifiers. The house is spic and span, every nook and cranny cleaned. Shower heads and shower drains, kitchen cabinets, just everything. We can't use some of the cleaning stuff we used to anymore so I am changing a lot of "my ways" so she will stay healthy. I know we can take good care of her as a family:)

Well, other than that. I was trying to catch a few cat naps this morning but I am up. So many people come in and out of the room and there are so many medicines running in the mornings that they beep every 15 minutes or so.

Katia had oatmeal today and then a plain hotdog later:) Hopefully the STAY DOWN! Love, Tracy



*****


March 15, 2004 9:00 PM

Hello:)

Today has been a good day for a few reasons. We had our CT SCAN done (no results yet) and Katia went poopy two big times!!!!! That is the best. She says her tummy feels some better but not a lot. I am sure she has quite a bit more to go but it shows the mineral oil has made its way through and "unplugged" her. She isn't in pain when she goes poopy so that is a big thing too. There used to be days (that would go on month in and month out) that she would just shrill and scream when trying to go and then she wouldn't go and a few minutes later, screaming again. It was horrible! We finally had her "normal" a couple months before she relapsed. Then we started over again and I am praying that we have her on the road to normal and painless bowel movements again. That is one of the biggest physical challenges with Katia over these last 2 years.

She has slept a lot today so hopefully she will be tired tonight and sleep. Last night was a good night I would be willing to repeat tonight.

You know what I miss the most right now? I miss her laughing. Katia was always a giggly baby and I miss that right now. I hope she will feel better soon and be laughing more. I am sure that will happen in time.

I want to thank each of you for checking up on us. I know I say that a lot but I truly mean it. Like I said the other day, you have become like our neighbors in the "Caringbridge Neighborhood" and you get me through some very rough days and give me someone to share the good and bad with. I want to ask each of you a favor. Can you mail me a family photo of you and your family? Put your names on the back and the ages of the kids (you don't have to put your own age if you don't want) so I can make a big "Scrap Book" of each of you. You have become so known to me by your names and email addresses but I want Katia to see ALL her friends and the people that pray for her and love her. You can mail them here to the hospital. The address is below. Let me know there is a photo enclosed. I really really appreciate this.


10:00 PM

Well Katia just threw up and threw up a lot!!! I don't know why really but maybe because she is so new back to eating and her tummy just had enough. She has gone 30 minutes without throwing up so hopefully that was all. That was a LOT! I used to not be able to deal with vomit at all but by God's grace, I can deal with Katia (talk about good timing). Okay enough of the "puke talk".

Pray for Katia that her WBC count will come up some on its own tomorrow and that she won't go far down or have to be started back on GCSF again. It would make me feel much better to see them working on their very own without any help.

I keep getting interupted so I better close this out before you think I am not going to update tonight:)


Thank you in advance for your pictures. (Even if you don't sign the guestbook, please send the pictures. Your thoughts and prayers mean just as much.)



Love, Tracy

PS I have new pictures but I will change them out tomorrow:)



March 15, 2004 11:15 AM
Day 39
WBC 3.70

Just a quick update for right now. We have been up since a little after 7AM but I just realized I hadn't updated. We had a better night than over the last few weeks:)

We are headed down to do the CT SCAN of her lungs right now which is good because Katia can't eat (now that she wants to eat) before the CT SCAN so she is miserable. Maybe she will order something big when she comes back!!!

I will be back later. Love, Tracy









March 14, 2004 7:30 PM

Myron and the girls just left:) We actually had a few cute pics from today so I am posting those:) These pics Myron took. I have some cute ones that I will change out in 2 days or so (maybe sooner). Katia has been in a good mood today. We had a long talk with her about the "night time problems" and "being nice". I have been putting in little mini-lectures on and off all day. Hopefully tonight will go smoother.

She is having problems keeping her potassium levels up. They keep getting very low and even after 2 bolace's (good size dose) they remain low. So...

I asked if this will be messing her up as far as getting out of here when we hope and it could...

Pray this straightens out.

Sometime this week we are going to do a SCAN of her sinuses and an MRI of her brain, eyes and such. She is a little more puffy today then usual and is having headaches (not so bad today) so we just need to know what is going on in there. I don't even want to use the "R" word and the doctor believes it is too soon after transplant for that to even happen. Just please pray that all is clear and Katia will just start feeling better and it is all due to sinuses.

We probably will scan her lungs again soon to so we can see how that spot is looking so we know if the medicines are doing their job. I have a good feeling in that area that her lungs are going to be fine. I pray I am right.

Well, I think that is it (that is enough) so just have a good evening and thank you so so very much for checking on Katia. I wish I could just hug each of you so here goes...


{{{{{{{{{{BIG HUGE HUG}}}}}}}}}}}}}

Love, Tracy

PS Katia says, "Hi, you out there." (I think she believes you live in my computer because sometimes I am reading emails or the guestbook and I laugh and she ask what I am laughing it. I say, "Oh just something someone said in your guestbook."

Hey, she is 4:)




March 14, 2004 11:00 AM
Day 38
WBC 4.40

Good morning:)

Not much news here. Katia's counts are coming down so I think they will put her back on the GCSF at a small dose. I don't think we want them below 5.0.

Her belly is still giving her problems but she did have a poopy yesterday. I know there is far more blocked up in there so she still feels bad. I can tell when she is really in pain by her heart rate. It is beating pretty fast this morning so hopefully she is building up to something and then can relax.

Her oxygen levels are again dropping but I think that is due to her not getting out of bed these last few days. I want her to get out this afternoon, or at least by tomorrow, and walk around some.

Katia doesn't sleep much these days. She has little brief naps in the day and maybe a couple hours of sleep in the night but mostly she watches TV, nibbles on food, or just does nothing.

Here is a funny little thing from today. Katia was laying down. She had order mashed potatoes and they had arrived. I told her to sit up so she could eat and when she sat up, she moaned and sighed. Then she said, "I sound like you and daddy!" Well that just cracked her up (and me) so she laughed for a good 2 or 3 minutes straight. Everytime she would stop laughing, I guess she would think of it again and laugh. It was good to see her laugh.

Well, I will be back later today. Enjoy your Sunday.

Love, Tracy




March 13, 2004 9:00 PM

I have 2 prayer request for you this evening.



Jake G
Please pray for 5 year old Jake, as he has been feeling very bad these days. Jake has Diffuse Pontine Glioma (Brain Tumor) and from what I understand is now suffering with Necrosis. This can be just as dangerous as the Brain Tumor itself. Please keep Jake and his family in your prayers.



Michael D.
Michael also has a brain tumor. He went for an MRI March 11th. More details soon but please please pray for him and his family at this time.




It has just really kept me upset today about Abby's passing. She too was battling AML like Katia. Abby was one of the first kids I kept up with on Caringbridge and I just always thought she was so sweet. I just can't imagine how Bert and Suzanne are feeling. I am just, I don't know what to say, but I am just so upset about so many kids being taken away from their parents. I have kept up with adults too, through Caringbridge, and watched parents be taken away from their children. I can't help but to not understand. I don't really think anybody can.

I can honestly say, I never thought we would have ever faced one of our children having cancer and I never imagined spending so much time in a hospital, away from eachother as a family. WOW! I can say that through all of this, I have learned so much and met so many wonderful people I would have never met. That too would have been sad. I am more willing to talk to people I don't know now. I think everyone has something to give and we can honestly learn SOMETHING from EVERYONE. These young kids are no different. From following them and reading about them, I have grown. A lot of people ask why I follow other people battling cancer. Doesn't it upset me when they pass? Of course! But, they have a right to be known and to shine their light and boy, do their lights shine BRIGHT!!!

I went out tonight and looked at the stars (it is not often they are visible from here-but tonight it seems they wanted me to see them). I can only imagine those are all the angels holding candles and looking down upon us here on earth. I do believe Angels are everywhere. Did you ever watch "Highway to Heaven"? That was a good show and I believe that could very well be true. We probably do meet angels in our daily lives. Maybe they are sent to show us a right direction, to listen to us, or just to help us in some way. So many things have happened in my life that lets me know God is right there with me.

Let me share a story with you. This is the honest to goodness truth (no I didn't see a UFO). I was a senior and I was driving to school. The road I took was very busy in the morning and I had to turn across an oncoming lane to enter the road my highschool was on. Well, I consider myself a very (overly) cautious driver. BUT, as soon as I turned to go, I saw a car RIGHT ABOUT TO HIT ME! There was nothing I could do but it felt like time froze! I drove an AMC Pacer at the time (I loved my car!) and I had plenty of windows to see and I KNOW I SAW THAT CAR! Anyway, the next thing I knew I was across the street and just clammy feeling. It was like my car was picked up and put across! I told everyone at school about that! Some people thought I was crazy (I was in highschool) and others thought, WOW! I have been in a bad accident since then and I had the same feeling before the SMASH! That freeze in time feeling, except this time I got hit really hard but God was there to protect me from what should have been a fatal car accident. This could have been an Angel. Yes, I believe in Angels. I just believe we really need a lot of angels right here on earth in our everyday life. Living and breathing and just here!

I can never question God. I wonder a lot but I just can't question. I think if I did, I wouldn't be able to live the life we do day to day. I have faith that God holds Katia in his hands and I pray he has BIG plans for her for many many years to come. I trust he does. I have faith that Katia's new blood is circulating through her right now giving her all those years! And soon, we will go home and she can play and sleep and eat and just get up each day and LIVE.

Please pray for all the families that have lost their loved ones due to any circumstances. They are all missed the same.

Love, Tracy









Myron's entry from guestbook

Good Morning, Mommy and Babybug,

After last night's restlesness I am sure you find that nickname Babybug appropriate ha Tracy!

My poor little Ladybug is hurting so much, and I know she feels like there is just no end to this misery... Hold on just a little bit longer Baby, both of you!

Tracy, thank you so much for your sacrifice.. Love you so much for that, and more...:)

200 days...just think about that...it hurts just to say it!
WAY TOO LONG! But we know that among all the pain, God is working a miracle...both in Katia, and in all of us...

Our hearts go out to Abby's family this morning, I know that there are really no words that I can say to ease the pain... please know that our hearts and prayers are with your family today...

We've had the opportunity to share with the community through radio and Tv of Katia's total engraphment, Everyone celebrates with us this news.
I am always amazed at the way the local media has taken such a heartfealt concern about Katia's recovery, she has certainly won alot of hearts...

This is why it is so important that we use this time to bring awareness to everyone. To let them know that there are thousands of Katias out there that need love and support, and mostly,to find a cure for these horrible diseases that haunt our lives.

In the meantime, let's continue to be blood and platelet donors, and make sure that another day does not go by without you being on that National Marrow Donor Registry, we will never be able to emphasize this enough.

The work at home is endless! Tracy will tell you, we usually move into a place in one day, but the preparations that we are making are taking certainly more detailed and tedious work so the job is endless!! HELP!!! just kidding:)

As most who know us can tell you, both Tracy and I, for the most part are very neat and organized people ... this mess is driving me mad!:)

However we know that it is working toward making this place Katia worthy...God I can't wait to have her backkkkk...

This is the most I have rambled on, so I am sure you've heard enough:)

Thank you again for your continued love and support, God bless each one of you for caring so much!

Katia baby, Daddy is coming to see you...we will have to play some new games today,OK!
Take care all... Luv, Myron






March 13, 2004 11:46 AM
Day 37 (Day 200 in the hospital)
WBC 7.80


First, please know that Abby became an Angel yesterday evening around 5:40 PM. She really fought and fought and oh, how I wish her parents were returning home with their sweet Abby. Although she had been fighting so hard and had so many complications, I always held on to hope for Abby. I know she is Cancerfree in Heaven and she is happy but I just really do feel bad for the parents and family left behind. I am sure there is a huge void. If you read their page, Bert and Suzanne say they are okay. I know they must be. They do have a great faith and although they will miss Abby, they know they will all be reunited in Heaven someday and share an eternity together. I just wish she could be here with them.

Good morning:) LONG LONG night. Katia needs her clocks reset. She sleeps a lot in the day and is awake all night. Last night she had a few too many temper tantrums over simple things. Finally around 7:00 AM she calmed down until around 10:30 AM. Her belly is REALLY bothering her today but she hasn't had a bowel movement for a few days and she is probably close to one. But, she is in quite a bit of pain so pray the pain will leave her alone and she can go poopy and be done with it. This has been an ongoing problem for her. (She is going to be mad at me, later in life, when she reads this. "You told everybody that, Mommy?")

Anyway, so I am going to cut this short.

Thanks for checking on us. I know it is hard sometimes on the weekend to get to the computer.

Love, Tracy







March 12, 2004 7:20 PM

Pray for little Katia today. She has been having quite a bit of headaches and her back hurts. This started yesterday so we lessened the dose of GCSF last night but with the rising in her WBC today to 10.6 from 7.51 yesterday, that shows a lot of activity in her marrow. Hopefully this is what is causing the pain. Also, remember she has the sinus infection (which was quite a lot) so maybe that has something to do with the headaches. No matter what, she hurts and I don't like to see that. She couldn't get out of bed today because I didn't want her to just be crying again. I believe she really does hurt when she is trying to walk so I am giving her a few days of a break.

I have also updated the prayer request today so glance up there for any new additions or updates. I appreciate your keeping up with our friends.

Also please pray for Tomas. He doesn't have a website but he used to be here at this hospital and then transferred up to Minnesota. I believe he is on Day 11 after his Bone Marrow Transplant so I am sure they could use your prayers.

Aside from that, Myron is working VERY HARD at home. I am so very very proud of him. I wish I could be there to help but I know he is taking great pride in doing this work for Katia and I both. He wants everything just right and I know he is doing a thorough job of cleaning. He is moving all the appliances out of the way, cleaning everything inside of every cabinet, drawer, closet, etc. The kids cleaned out their rooms and closets. The kitchen is getting just totally CLEANED OUT. All I can say is WOW! I can't wait to see it all. I hope that day will come earlier than May but May is good, too:)

Well I think that is about all I have for now.

What are my hopes for tomorrow? Well, we don't want the WBC count to go any higher now, it would be okay to lower down a few like to 7.0 or something. I think that would be more comfortable for her. I would like to see her continue to eat and today she has done well. She had a decent breakfast (good selections at least and a few bites from each). For lunch she had some Spagetti O's with some cut up hotdogs and a little bit of Apple Dumpling:) Not bad. Right now she is saying she is hungry:)

Oh, let me share something funny with you. Definitely "Katia".

She has this habit of waking me up in the night just to tell me something or when I am busy she will talk and I can't hear her so I will tell her to wait, not to talk to me right then or wait till morning. Now she tells me, "I am not talking to YOU, I am talking to MYSELF". Well she then goes on and on repeating herself louder and louder so I can hear WHAT she is telling herself like what movie she wants to see, or that she is bored or whatever. If I tell her to hold on or something, WOW! She doesn't like to wait at all. PLEASE LET THIS BE BECAUSE OF THE STEROIDS. Anyway, I think it is funny how she is trying to find a way around me. She knows what she is doing.

So, that is all of my babbling for now:)

Love, Tracy







March 12, 2004 10:15 AM
Day 36
WBC 10.60 !!!!!

Good morning:)

Things here are good. I don't know Katia's counts yet this morning (I actually haven't asked...) so I will post her WBC count in a little bit.

Katia actually "ordered" eggs and bacon and a bagel this morning. Real breakfast foods. She ate 1/4 bagel and 3 bites of the eggs. Now she is ordering oatmeal, strawberry oatmeal. This may be headed back to Katia's old breakfast habits. Hopefully each day she will take more and more bites.

Not much else is going on.

Someone asked in the guestbook if Katia likes Dora? She loves Dora. She likes the same cartoons as most kids her age. SpongeBob, Dora, Bob the Builder, Baby Mozarts, Strawberry Shortcake, CareBears, Disney World Sing-a-Longs, Blue's clue, Sesame Street, Barney, Raffi, etc. She really does like the voices and singing of cartoons and Barney (even though they most all sing the same songs). They can play 24 hours and I really have learned to block them out. They don't really bother me. Some of them I actually like! I can explain that. I have been here 200 days tomorrow so I think our minds are blending:)

Last night when the kids and Myron were here, Sharayah and Myron gave me a good backrub! That felt really really good:) My back sounds like an accordion when I stand up. I have never heard so much popping. When we escape from here, I promise to go to my doctor. My legs look a lot better now. It seems the diuretics did their job. I usually stay away from medicines but that actually worked so I am happy.

You know what I did yesterday? I found Walmart over here:) WOW! I got Katia and I some soups (the Campbell's Soup at Hand) and I was just so happy to be in a very familiar place. That used to very relaxing to me to walk around a store. I really don't care to shop but I do like to be able to browse around. It is hard for me to make decisions on stuff. When I am home, everything I do is at the SuperWalmart. I love that place!! Yesterday when I went in the grocery section, I felt like my house was close by. I wish I could have just walked out of there and driven back to my normal life. It is nice to know there is a Super Walmart close by. I really don't leave the hospital grounds much, I just go to the Ronald McDonald House but that was nice yesterday. It was SUPER going to the SuperWalmart. It is amazing how the small things bring such joy!

Well, I need to go track down our lab reports for today:)

Love, Tracy




March 11, 2004 9:30 PM

Okay, I just typed this really long update (mostly babbling) and AOL shut off and BAMM, it was all gone. I hate when that happens but I guess we all know how that feels.

Anyway, Katia had a decent day. She doesn't feel too well because she has a headache and her legs and back hurt but I really think that is due to one of her medicines, GCSF, which is actually being decreased by almost 50 percent. So, our hopes is as this decreases her WBC count will not go below 5.0. I really think Katia is on her way up and her platelets will hopefully start producing on their own:) That would be great!

Someone asked how to pronounce Katia. Well, a good place to HEAR it is in the Newstories listed above the journals. But if I were to type it, I would say
Kah-tee-ah (with the stress on the first syllable:) Hope that helps. Most people mispronounce it until they actually hear it.

Well, Katia just ordered Apple Dumpling! I hope she likes it and eats it:) Man, it is already here. I just hung up from ordering:) They really want Katia to eat.

Well, I guess that is all I had to say earlier. If not, it must not have been important:)

Love, Tracy








March 11, 2004 10:34 AM
Day 35
WBC 7.51

Good morning:)

Ms. Katia is sleeping right now and she just looks so cute. I am looking at her thinking how much she has been going through and she doesn't complain. She only complains about being "bothered" but she doesn't complain about HAVING to do this at all. To her, this is just the way it is and we must do this.

I am so blessed to have Katia. People ask do I ever say, "Why me"? Well of course I do. I am human. But then I think that God sent us Katia knowing we would have the strength to see her through all of this. So, for that reason, I feel blessed. God entrusted us with Katia.

The night went good. Katia's alarm on her Pulsox Machine keeps going off. Either her heart rate or her oxygen is too low. She is weird about that. Sometimes she has such low blood pressure that it seems it should be making her sick. The same thing with her oxygen levels. But, for her, she is fine. She looks fine, she feels fine.

Okay, there was a question in the guestbook and I try to read over questions and answer them here. It was about DNA. I said, in yesterday's update, about Katia's actual DNA not changing. The only thing that changes is the chromosomes and DNA of the Bone Marrow itself. I asked that because I had heard otherwise. Her doctor said that if Katia was to go have a blood test or that swab test they do for finding out a child's parents, that test would still be the same. She would still show as our daughter and as Katia. The only way they would see any different DNA is if they took the sample directly from her bone marrow. Katia's Blood Type does change but when they are doing DNA, it has nothing to do with that, it is the genes and her genes haven't changed. I hope that will clear that up:) Always feel free to ask a question (there are no dumb questions) and if I don't know I will definitely do my best to find out.

Well, that is about it for now.

Oh, as far as my legs. The swelling seems to be less but definitely still there. It just appears like water retention so I am keeping an eye on it. It could be from a lack of movement like I am used to (I am normally a busybody) and also the fact that I wear jeans so much. I try to wear slacks here and there but in this situation, jeans are most convenient:) They don't wrinkle, they always look good, and they wash easy without needing any special care. Plus I am a VERY VERY casual kind of person. I believe in comfort ahead of everything else. I like to look nice, of course, but I have to be comfortable and dressed practically for what I am doing. I should just wear nursing scrubs in here! Anyway, thank you for your concern and prayers.

I am really working on hard on some new pictures to post:) I can't wait until they are pictures outside (even if it is at the Ronald McDonald House), or sitting on a sofa or just something different. Katia says she wants to go home and sit on the big sofa and watch TV. She wants a "Movie Screen TV" to watch Barney. That is what we need, a Life-size Barney singing in the house! I am glad she is so easily entertained and happy by watching her little shows and movies. Whatever makes her happy:)


Love, Tracy







March 10, 2004 9:08 PM


Okay, let me have a ladybug drumroll! Katia is all donor cells!!!


I don't want to say 100 percent because they really can't by all rights say that because they didn't study every single little cell in her marrow but they took a lot and every single thing they see, DONOR!!!! I am so happy! Her counts are doing great, her marrow is doing great! WOW!!!!!

I asked about what we want to see next and they want to see her new marrow making its own platelets without needing transfusions. How will we know this? When she can go at least 5 days at a time without a transfusion. Then she would go longer and longer without needing them. Then she would be considered to have platelet engraftment. So, that is next on our "To Do" list:)

I am so very pleased with Katia all the way around. She is eating better, she is looking better, she is trying to walk, she is happier and sleeping better. She still has a "Strong Personality" when she is not pleased and happy but hey, that runs in the family. They didn't change her DNA!!!

So, we have had a good day. I wanted to update a few hours ago but I wanted to understand better about the difference between 100 percent engraftment and 100 percent donor and how true the "100 percent" statement is. I like to learn before I speak and understand what is fully going on and what to expect and look for.

So, Myron and the girls are preparing the house and we really hope to be there beginning of May. I am really shooting for that date and praying we make it there for the springtime. Maybe a small break at the Ronald McDonald House in April. Who knows?

She does have some spot on her lung that we will look at again and make sure it isn't changing. Since they found that last week, she has been on more antifungals to protect her.

She also is on day 5 of 21 of a few antibiotics for the sinus infections which seem to be clearing up a little. Her oxygen levels are still dropping down to the low 90's and upper 80's but once she sits up and coughs and takes some deep breaths that get back up to the mid-90's.

We are watching American Idol tonight and we are happy!!!

I am working on keeping The Katia Solomon Fund webpage updated with any new information or needs concerning the Fund and I so much appreciate your checking that page regularly. Thank you to those who have made contributions. Someday, Katia can run that and she can go around speaking and helping and educating and showing how all of this can SAVE LIVES!!!

Today, I am a little more able to picture Katia in the future. I talk to parents up here and a lot of us have a problem looking too far ahead. I had an email from someone about a dream they had about Katia in the future and that just warmed my heart!!! Thank you for sharing that with me.

Well, I am going to work on the KSF (Katia Solomon Fund) site.

Love, Tracy


PS Katia is happy but she isn't too sure why:)





March 10, 2004 10:30 AM
Day 34
WBC 5.03



Good morning:) Long night! But, not a bad night. All I can say, is Katia prefers I stay awake and watch her. OKAY:)

Anyway, I am not going to make this too long right now. I am hoping to get a few results today. Maybe the percentage of donor cells and a clean bill of health as far as continued remission. Both, I hope to find out today.

Katia's belly is puffy and grew 2cm overnight. Last night it was 1cm bigger than in the morning so.... we have to find out why. Hoping it is just gas.

I did MAKE her get out of bed and walk around on her own yesterday. She was very mad but she slowly, very slowly, made her way around her bed. She was mad cause she says she "walks like an old lady". Then I asked her, "If the doctor says okay, do you want to put on a mask and go walk in the hallway?" She had a definite NO because she says people will laugh at her. Remember Katia does not like anybody laughing at her and sometimes people do just because she does something funny or cute or they are just happy to see her doing something. Well, she doesn't catch onto that at all and she just burst in tears. If I tell people NOT to laugh at her, they get another look on their face, trying to hold back a laugh, that she gets mad at too. I hope this all ends and goes back to normal when she gets out of here. At first she thought people were laughing cause her hair was gone and now she thinks they laugh at the way she sits up or walks.

Well, last night my legs got very swollen and sore so I am going to TRY to stay off my feet as much as I can today and sit back in the recliner. But, I will update later (hopefully with some answers!)

Love, Tracy




*****



March 9, 2004 7:22 PM

Hello:)

Katia's theme today? Beefaroni!! That is good though. I am happy. We STILL have no word on her results from her marrow. I am SURE we will find something out tomorrow. Her transplant doctor is planning to return tomorrow.

Let's see what else? Oh, the left over stitch in her broviac? Well the IV team came by and we all agree to wait until tomorrow and see when the next safe time to sedate her will be. It is such a tricky little area and Katia WILL NOT be still. The process requires scissors around her broviac whichm is not a time you want to slip and cut something so she HAS to be still. There is no reasoning with her so we just have to sedate her. It is looking a little worse today than yesterday and we don't want it to become a source of infection.

I am very pleased with her counts but I also know they have come up with the use of medicine (GCSF) so we are now weaning her little by little. We don't want the counts to go too low because of the problems with her lungs and the last scan showed a "spot" so I think we are safer keeping the counts (even if they are a little false) higher than lower. The medicine only MAKES her body produce the White Blood Cells but they are REAL White Blood Cells. She did need platelets today so she got those with no bad reactions this time. THANK YOU TO EVERYONE WHO REGULARLY DONATED BLOOD AND PLATELETS. I KNOW THIS HOSPITAL ALONE GOES THROUGH QUITE A FEW OF THOSE EACH DAY.

That is a big thing we are trying to also make more known with advertising through The Katia Solomon Fund. Everyone really relies on Blood and Platelets. If you are in a car accident and need blood immediately, you expect they will be there. If you have surgery and start losing blood, you will need them. If a child is hit by a car or has a bad accident somehow, they may need blood. So, my point is to just always keep the blood supplied because it is for each of us and it is a safety net when we need it the most. For people being treated for cancer and other blood disorders, their life depends on it.

I think with The Katia Solomon Fund a big thing I want to accomplish is education either through advertisements by radio or TV or pamplets at high-traffic locations. I think more people need to learn about how to go about registering as a marrow donor and about donating Cord Blood.

As Myron will soon have to return back to work, we don't want to lessen the time we spend on spreading information and attending drives. We also want to be able to step in (when we are able to) and help familes pay an electric bill or mortgage payment or car payment. These things don't ease up when you are facing one of the hardest times in your life and we want to be there to help ease a stress for others. We have been able to do a few things when we have been blessed with a little extra money but at the same time, we face these stresses here and now. I look around the floor and I know all the families up here have been thrown into our same turmoil and we have to be here for eachother.

It is just so sad that anyone has to go through THIS and there are so many other awful situations and tragedies that people face. We were introduced to this one when Katia was diagnosed and I never really imagined what families went through as their child fought cancer. I am glad I know now but I wish I had found out in a different way.

Thank you for fighting this battle with us. Thank you for your ongoing prayers and encouraging words in the guestbook. Thank you for your very appreciated contributions. Thank you for caring and loving so much and just reaching out to a family you did not know before. I am so grateful to have met each of you. The guestbook is like a neighborhood to me, a neighborhood I love to drive home to a few times each day. God bless you for living in our Caringbridge Neighborhood:)

Love, Tracy

PS For those of you who have ordered the Katia T-Shirts, thankyou. I am very pleased with the quality of them. Approximately $3.00 from each shirt goes to The Katia Solomon Fund. I have added a few new items in her store. I plan to keep adding different things as I come out with them. When I go home, maybe we can find a better way to produce them so more of the money goes to The Katia Solomon Fund, but for now this was the best way I could think of. We don't have to make, pack or ship them and we really liked the quality of the shirts and screen work.










March 9, 2004 11:57 AM

Well, the WBC count is 5.68 so she is moving along quite well:) I am very pleased. I wanted to put Myron's message in here and I forgot earlier so here it is now. I like when Myron leaves messages because I know you each follow Katia AND our whole family.

This is from Myron:


Hey Baby Ladybug and Mommy,

I'ts Daddy Ladybug! I am so happy you got to finally unveil your masterpiece! we are so proud of the improvements you are making on a daily basis and most of all I am so happy that you are eating again...

We are counting the milliseconds till you both get home time sure does drag when you are "Not" having fun!

To all our friends in cyberland Thank you again for being there! You are and incredible life line. Please continue to keep Mama Ladybug smiling, she certainly gets weary, but with each day come new strength as we slowly approach the finish line.

These days their is a lot of work being done in preparation for that glorious day when mommy and baby come home again!

We continue to be involved in the community, and recieving continued love and support from all who have fallen in love with Katia.

Last night Katia and I had a very pleasant conversation of what we would do when she gets home,from the foods we will eat, to the toys we will play with and then we fell asleep and dreamed all about it... Please time... fly bye!

Our lives have changed forever, and we so much look forward to creating new and exciting memories, and of course sharing them with you, our friends, our family...

Luv, Myron
Myron
Tampa, Fl USA - Monday, March 8, 2004 8:10 PM CST


Thank you so much for keeping up with Katia. It is so very important to us to share her story.

Love, Tracy









March 9, 2004 9:30 AM
Day 33
WBC 5.68

Good morning:)

As I type, Katia is trying out some French Toast Sticks and syrup. She said she wouldn't like them but....

We had a decent but long night. Katia wakes up a LOT during the night just to tell me something or ask for a marshmellow or to have ice put back in her sippy cup (which melts) but she wants to be able to shake the cup and hear ice:) Cute, huh.

Please also, pray for a friend of ours, Bailee. She has relapsed with ALL. She has gone through treatment for 3 years and hadn't really finished yet but now, it is sure, she has relapsed. They are hoping to find out that her brother will be a perfect match for a bone marrow transplant. This little girl is just one of the girls that you would just want to go hug. She is so sweet and cute and so outgoing. She is treated here in this hospital also.

Also, another prayer request is for our very own family. There seems to be so many things going on right now and quite a few things to get done. Finances are getting very stressed and hard to figure out. So many priorities. We are SO looking forward to the day we get out of the hospital. This has just been a straight through stay with no little breaks home. When we do get home, we really have to be prepared to keep Katia healthy and thriving. At the same time, we just want to see her have fun. Myron still isn't back to work. Our hopes are for the end of this month if he can get the house in order by then. He is doing carpet and painting and then they literally have to move everything around in the house and garage and really clean the areas and the items good. The yard had gotten ahead of him so they are working on that. I know it is very hard for Myron and the girls to see Katia's swingset and toys just sitting around the house but now they get to clean each of them thoroughly. We are looking forward to seeing her play again or at least be home:)


Katia is eating some oatmeal now:) YUMMY! She is so sweet and she really does try to do what she needs to do even though she may not feel like it. She really does give it her all. The hardest thing for her is getting out of bed and standing on her own. But we try and hopefully she will soon see that the hard work is paying off. I LOVE TO SEE HER EAT!!! I AM WATCHING HER PUT EACH LITTLE BITE IN HER MOUTH AND THAT IS JUST SO COOL!!! SHE IS SO CUTE CHEWING HER FOOD:) Am I a mother or what?

Well, I will go so I can help her clean up when she is done. Love, Tracy









March 8, 2004 8:10 PM

Good evening. We have had a nice day. Not much going on here. I didn't learn any results yet from the bone marrow aspiration, maybe tomorrow.

Katia has been on a Beefaroni kick today and this evening has added Broccoli to her menu. Both are healthy and she is happy:) That is great!

I am tired so I am planning on having an early evening, even if Katia is still awake and watching TV. I just want to "chill" for a while. I am getting stiff I guess from being in here so long. I do get out and walk each day outside and then I go downstairs to the cafeteria. I even go to get a drink down there instead of in the breakroom here, just for the added exercise. Katia is getting better with allowing me to leave the room on and off.

Well, I am going to go now and be back in the morning. I tried to get Katia to draw me something today but she didn't feel like it. She wasn't happy to leave her bed at all. She gets very shaky on her feet so we just practiced standing up and down on her bed. She can't pull herself up without my holding her hands or under her arms. She still needs that extra support. But, we are working on that.

Love, Tracy







March 8, 2004 8:30 AM
Day 32
WBC 4.43


Did you see that WBC count? That is great! They are starting to wean her off of the medicine GCSF that helps to raise that up. Hopefully that WBC count will stay there on its own and her marrow will produce them itself. I am so happy to see those numbers. Today, we should find out preliminaries on the Marrow results.

Okay, here is the big surprise!!! I am sure you have already scrolled and seen it:) But let me tell you about this. Katia hasn't done as much as draw a circle (on purpose) and the other day, she wasn't happy about having to be out of bed and exercising. I told her she had to be a "strong little ladybug" and stay away from her bed for a bit. Well, she wanted to sit down so I told her she could sit at her little drawing table. I expected her to sit there and actually just cry and beg to go back to bed but she started drawing. She normally just draws lines on there and says they are worms. Well, I wasn't paying attention and I took the chance to straighten up her bed. I turned around to see what she what she was doing and "WAH LAH" (if that is a word), she had the beginnings of what appeared to be a ladybug! So, of course, I started to take a bunch of pictures!!! I was just amazed at her detail and her happiness sitting there. I was so proud of my little baby. Well, she worked and worked on her little ladybug and was coloring the red parts. I noticed she colored one of the spots red but I didn't say anything. Then she colored another spot red. She sat back and looked at it and she got very mad and said spots were black, not red. She tried to erase with the eraser and erased something she didn't want to. Meanwhile I got down by her and told her it was beautiful and how proud I was and that I wanted to show daddy and the nurses. She told me to take a picture:) (That has to be my baby)
So, I took the pictures and I asked her if she would just get up and leave it but she wanted to erase it because it wasn't "right". I let her do what she wanted but I was sooooooo proud of her. I showed the pictures, on my camera, to her doctors and nurses and we were all just shocked and so proud.

I miss the fact of Katia not playing with other kids her age and doing things they do but this just really assured me that she has it inside her:) I am just so happy with my LADYBUG!!! It is appropriate that is the first thing ever that she has drawn!!!

So here is her pic!




I am updating the other pictures right now to show her drawing her masterpiece!

I hope you guys had fun trying to guess:) I had fun reading your guesses (which by the way all of them sound good and fun!)

Love, Tracy



March 7, 2004 7:17 PM

Hello:)

Myron and the girls just left from visiting. I hate seeing them leave. It is just so weird that we have been here so so long. Today is day #194 in the hospital. I will need a map when I go home to find my way around our neighborhood and the house:)

Anyway, Katia got her platelets today and actually had a reaction to them this time. She gets premedicated with benedryl to keep her from reacting but today, she broke out in hives (bad) on her head mainly and her back and arms and belly. It just came on suddenly and scared me. I just wanted to show it to the doctor right away because it was getting so bad all of the sudden and she didn't feel good. The doctor assured me it was a reaction to the donor's platelets so we sent in a form to not use that particular donor again. Just sometimes that happens but it just hadn't happened to Katia yet. They gave her IV Hydrocortosone and over the last couple of hours, it has gone away mostly.

Well, tomorrow I promise I will let you in on Katia's little surprise to us. Maybe it will post it up here before I go to bed. I want to show you, too! I will give you another hint and this isn't a one-word kind of hint.

Hint #2: Although Katia is 4 years old now, she doesn't do a lot of things kids her age do. She can't ride a tricycle or bike like most 4 year olds. She can't really run or jump like most 4 year olds. She can't color or draw like most 4 year olds. She can, however, tell you all about the hospital and things doctors and nurses do. She can warm your heart with the biggest smile and the sweetest words of I LOVE YOU. She can bring sheer joy by taking a few bites of food. The surprise was just so perfectly done and so suprising to me that I took about 40 pictures of the process. I was so happy that I just had to show everyone. Katia is our little baby and she loves to make us happy:) We love to see her happy! So, I will share with you what she shared with me and hope it brings you even a fraction of the smile and happiness it brought me:)

Love, Tracy

PS TOMORROW:)




March 7, 2004 11:13 AM
Day 31

Good morning:)
WBC counts 3.42!!

All good guesses on what Katia did...

Well, this morning Katia FINALLY tried Oatmeal for breakfast and some bacon! That is a lot closer to the Katia she used to be. It used to be before Katia's eyes were totally open in the morning, she was sitting at the bar in the kitchen waiting for Breakfast #1 then an hour later, more food and this went on all day. She was definitely in love with the kitchen (either at home or in the hospital). I think she will get back there soon:) She is definitely trying to. She WANTS to eat but she needs to realize now that she CAN eat and not get sick. She had about 2 ounces of oatmeal and 1/2 slice of bacon and 4 ounces of gatorade (that is to up that potassium). She hasn't gotten back into bananas yet. She says the smell makes her sick but I am sure, in due time, she will like them again.

Myron, Sharayah and Tatiana did a lot of work around the house yesterday and yard work. They are really working hard to get everything as it should be. The only thing that will be lacking is getting the Ionic Breeze Air Purifiers for each room in the house. We still have a good while before we go home. They have just been gutting out the place and cleaning every "nook and cranny" as I like to say. They are taking great pride in making sure all is clean and germ-free for Ms. Katia.

Well that is about it for now. I will be back later today:)

Love, Tracy





March 6, 2004 8:32 PM

Katia is sitting here eating more Rice Pilaf:) Plus she tried, and LIKED, the hospital's idea of Beefaroni:)

She is doing very well right now and I am so happy and pleased!

Okay, here is a hint as to what Katia did. Ready! Like they say in Blue's Clues, here's your first hint of three hints...

Hint: Ladybug!


More later (tomorrow)

Love, Tracy






March 6, 2004 1:56 PM

Well we are back from SICU and her bone marrow aspirate is done. Man, she takes a lot of sedation. More than double what she needed last time but she is awake and all back to "normal". We will know preliminary results on Monday and the real ones by the end of next week. We are hoping her old marrow is totally gone and she is all new marrow. The send it off for a complete cytogenics test so that will tell us what we need to know. Like for instance, she HAD a certain "inverted 16 chromosome" and now they are saying that we HOPE we don't see that. Not seeing that would be a good thing. So, we wait.

I have gotten a lot of emails asking about the bump on her back. Well, although it is still there, feels smaller to me, it is not showing up on any of the x-rays or scans but we just feel it so... not much of an answer. Since it isn't showing up, that tells us it is probably just stress related maybe to her coughing and not a "growth" that we should worry about. We are just keeping an eye (or should I say hand) on it.

So, now Ms. Katia can eat and she order Rice Pilaf (a favorite of hers right now) so it should be arriving to the door soon:)

Thank you for your prayers. Love, Tracy







March 6, 2004 9:36 AM

Well, I know I said I wouldn't be back until after the bone marrow aspirate but... Well, you know me:)

We had the most peaceful night we have had since transplant. I think Katia only woke up one time. The good thing about me, I forget things quickly:) So, I don't remember how many times I get up in the night and what the reasons were. I guess we can call that selective memory.

Katia is mad right now because she wants to eat marshmellows and she is NPO (can't eat). Poor thing. All this time she couldn't careless about eating and now that she does, she can't eat this morning. She SAYS when she can eat, she is going to order CHEESE GRITS! Yummmmmmy.

So, hopefully we will get this done soon. Katia's doctor (Dr. Petrovic-I don't think I use names much) just went to go see what time and if they are ready now.

The other problem Katia has been having is her potassium levels dropping quite low. She gets a bolace to bring it up and they add extra amounts to her fluids but they still don't come up like they should. Hopefully they will start staying where they belong. They get down to 2.1 or 2.4 and they need to stay between 3.4 to 4.7. Her kidney and liver functions are good though and we are happy about that:)

I have some new pictures to post but I think I will wait till Monday and leave these Survivor ones (they go so well with the fact today is DAY #30)

Anyway, you will be shocked by what Katia did! I was. I think I am a little more happy than most but I was really just in awe of her ability. What did she do? Well, you will have to wait to see the photo:) I may not be able to hold out till Monday but I am going to try. I am just glad I got photos of it:) Curious?

Well, I will let you go for now. I will be back after the bone marrow aspirate.

Love, Tracy






March 6, 2004 12:04 AM
Day 30
WBC count 2.57

Wow! 30 days already! Well, it is just a few minutes into the 6th of March but I am still up.

Tomorrow we are scheduled for the bone marrow aspirate so pray all of that goes well. She does go under a good amount of sedation for that (more than she used to) so pray she wakes up feeling fine:) Katia is too strong for even 4 of us to hold her down under consious sedation so she has to be fully out.

Also, please please pray for dear Abby O.

She has taken such a bad turn for the worse. She now has double pneumonia. She was really improving over this last week. Remember she just had transplant January 23, 2004.

Her parents, Bert and Suzanne, could sure use your prayers and encouraging words.

So, I will be back (maybe later tomorrow) to let you know how the aspirate goes.

Love, Tracy









March 5, 2004 4:00 PM

Well, I have some results:)
The CT SCAN shows there is definitely a sinus infection so that probably explains the cough and even her counts bouncing up and down. By the way, today her WBC count is 2.27 so that is moving in the right direction.

One of the CT SCANS of her lungs did show a spot on one of her lower lobes in the lung and we really can't be sure what that is so they have added another antifungal drug. Hopefully it is not that aspergillus showing its ugly face.

Her Bone Marrow Aspirate is now scheduled for tomorrow in the ICU but not sure what time. I am not sure if the brochoscopy will take place or not. Since the CT SCAN showed the sinus infection that may also explain the drops in her oxygen levels so...
If she has it, I will let you know. She will be completely sedated for the Bone Marrow Aspirate so if they need to do anything else, that is the time to do it.

Her platelets are at 32 today and the limit is 30 or below so she isn't getting them today. She will definitely get them tomorrow though both because she will need them by then and also she needs them before the bone marrow aspirate.

She had a few bites of pound cake, some jello and a couple of marshmellows so that is good.

She doesn't know yet, but I am about to get her out of bed to walk a little. She is not liking the walking exercises but I can see it is definitely doing her good. We walk a bit and then sit on her playmat and have a "tea party" and then she can go back to her bed. It is a lot for her to handle but it is good for her body.

So, that is about it now:) That is enough.

Love, Tracy







March 5, 2004 11:00 AM
Day 29
WBC count 2.27

Right now, Katia is looking at her MENU:) It is of interest to her again! She just ordered Pound Cake, Fruit Rollup and Strawberry Milk? Okay, whatever works.

No bone marrow aspirate today. We are trying to plan the brochoscopy and bone marrow aspirate together so...
I will let you know when it will be done as soon as I know.

Her oxygen levels are staying above 95 so far today so that is better:)

I can't make this too long. Mornings have become a busier time due to medicines she is on, the main one being Lasix which keeps her peeing so I have a lot of diapers to go through and I have to catch them before they leak out. She hates ever getting wet in any way:)

Thanks for dropping by and checking on Ms. Katia.

Love, Tracy

PS Daddy is on his way right now!




March 4, 2004 8:18 PM

Well, we are back from CT SCAN. She doesn't like that much (the sinus scans) because she has to have her head tilted back upside down. But, she was a trooper and racked up a lot of stickers! AND we got back in time to watch SURVIVOR which we are doing right now:)

Hopefully we get results back tomorrow which explains what is going on and is easy to fix. God bless each of you and thank you for checking on our little Ladybug!

Love, Tracy







March 4, 2004 3:30 PM

Figured I would come update so that I don't forget things as the day moves on. We have to go get another CT SCAN done tonight (these nightly trips are adding up). This one will be of her sinuses. If that doesn't show a reason for her oxygen levels to be dropping, then tomorrow she will have a bronchoscopy done at the time she goes to have her Bone Marrow Aspirate. That will be done in an operating room (that should be sterile enough).

They have added another anti-fungal drug to protect her from the fungals that have gone after her lungs before. A viral infection can be just as bad and cause Katia way too many problems so they don't want to hold off on doing this bronchoscopy. They need some good samples to send off for lab tests. She has had numerous blood samples sent over the last few days which the first one coming back was negative. Something really has to show so we know what to fight with.

Katia is asleep right now. She was doing some breathing exercises which wore her out.

A piece of good news... She ASKED to have Merritt (the physical therapist she has been running off) to come play with her today! Of course, she fell asleep right after that but hey, she wants to play with Merritt.

Another nice bit of news is what she has eaten today:)

3 ounces water
3 sips strawberry milk
2 animal crackers
2 bites of babyfood
1/2 piece of pound cake
2 ounces of water

Pretty good, huh?

She is trying and she REALLY liked that pound cake!

I will update later. Please pray they find out what they need to know so Katia can begin to improve with her breathing and coughing. Love, Tracy






March 4, 2004 10:32 AM
Day 28
WBC count 1.81

Good morning:)

First news is the Bone Marrow Aspirate has been delayed until tomorrow. Since Katia has to be sedated using the drugs she uses, it takes a little more planning than usual. Remember we usually leave the floor and either go to ICU or SPU. They are trying to see if anestesia can come here to her room. If not than we have to make a sterile environment there. Anyway, it has been delayed.

Secondly, I don't know anything about the CT SCAN from last night yet. I do know that Katia's cough is worse over the last few days and her oxygen levels keep going down to the upper 80's and low 90's. They do climb back up to the upper 90's but I am not sure why they keep dropping. Hopefully this CT will answer that. Like she is just hanging around an oxygen level of 90-93 percent right now. So....

She did drink a little strawberry milk today (a few sips) and eat a couple small bites of babyfood (oatmeal) but I am sure they are going to plug her back into the TPN and Lipids (IV nutrition). She has gone from 15.3kg to 14.5kg. in just 2 days. That is almost a lost of 2 pounds so that can't continue but her belly is better:) It doesn't hurt she says.

Let's see, I think that is about all. The bump is still there on her back? We are just waiting to get a few answers.

I will be back later:)

Love, Tracy



PS I want to start adding in the WBC counts here so let me catch up with the past days:)



DAY 27 WBC 1.57
DAY 26 WBC 1.91
DAY 25 WBC 1.62
DAY 24 WBC 1.89
DAY 23 WBC 2.00
DAY 22 WBC 1.83
DAY 21 WBC 1.54
DAY 20 WBC 1.55
DAY 19 WBC 1.28
DAY 18 WBC 0.93
DAY 17 WBC 0.62
DAY 16 WBC 0.68
DAY 15 WBC 0.47
DAY 14 WBC 0.38
DAY 13 WBC 0.27
DAY 12 WBC 0.24
DAY 11 WBC 0.20
DAY 10 WBC 0.17
DAY 09 WBC 0.12
DAY 08 WBC 0.04
DAY 07 WBC 0.01
DAY 06 WBC 0.01
DAY 05 WBC 0.03
DAY 04 WBC 0.02
DAY 03 WBC 0.02
DAY 02 WBC 0.06
DAY 01 WBC 0.17
DAY 0 WBC 0.58
DAY -1 WBC 2.74
DAY -2 WBC 3.58
DAY -3 WBC 3.52
DAY -4 WBC 1.93
DAY -5 WBC 2.07
DAY -6 WBC 2.10
DAY -7 WBC 1.35
DAY -8 WBC 1.52






******

March 3, 2004 10:13 PM

Well, we are back from our CT SCAN. Katia likes that because she says it is a big ride:) Whatever works!

Myron's mom is leaving tomorrow (Grammie) and we are going to surely miss her. She made me a good dinner tonight! "Thank you, Ma!"

Just to share with each of you, I do still get out each day (most days) for a big breath of fresh air. I very much enjoy that and it is amazing what 5 minutes of that can do for your body and soul. I love this time of year. I am a big fan of Spring and Fall. I love the weather during those months. In Florida, it seems like one day is Spring and the next day is Summer but Summer is good too. Who am I kidding, Florida just has fabulous weather most of the year around:)

Well, I will bid you goodnight. Katia is getting sleepy so I am going to watch a little TV and go to sleep. Last night she woke up at 2:15 AM and wanted some bread and butter. Well, the kitchen was closed so she settled for animal crackers. She took one out of the bag and held onto and fell back asleep. Since she has tried to eat a little last night and some today (we got her to eat a few bites of bread and butter twice today) then they are going to leave her off her IV nutrition another day. It really seems to be helping her belly a LOT. She hasn't complained about her belly all day and it isn't near so puffy. THANK YOU, GOD. One problem seems to be solved.

We should find out the results from the CT SCAN tomorrow.

Oh, for those of you watching American Idol (or I guess for those who didn't), Heather didn't make it through to the final twelve. But she did a fabulous job and went a very long way and we are all very proud of her. "You were great, Heather!"

Myron, the girls and Grammie were here watching American Idol. That is our family time. We like that and survivor a lot. Myron had a great time with Katia last night, a lot of belly laughs from Katia and we all like to hear that. Daddy gets down right silly with her! I got a laugh out of her today but it was because I ran smack into Shrek (the big stand up one in her room) and down he came on me! She found that funny. BUT, Daddy can always get a good giggle out of Katia. "Two peas in a pod!"

Goodnight:)

Love, Tracy







March 3, 2004 6:12 PM

Well now we need to go have a CT SCAN done tonight at 8PM. We have to wait until the hospital has less people so that we don't risk getting Katia sick when we go downstairs.

I am not sure really what is going on but now we won't know anything until tomorrow. Also, her bone marrow is due to be checked some time tomorrow.

I got an email from Angel Dustin's mom, Stacie. She is in the hospital right now. She has been diagnosed with some type of kidney disease. I think people should only have to face so much in a year and they have really gone through so much just losing Dustin. Please keep Stacie in your prayers.

Pray that this thing with Katia is nothing serious and can be explained and handled easily. Also pray that those cells have grown for tomorrow's test:)

I think, and hope, she will be over 50onor and I pray she is 100onor cells!

Love, Tracy





March 3, 2004 9:50 AM
Day 27

Good morning:)

As I type, Katia is sitting on her bed eating some bread. If she eats half a piece I will be happy:)

No news yet on the x-ray. I should know sometime early in the day. The doctors are in rounds right now. The bump does have me concerned though because it feels hard, not like fluid build up or fatty tissue. It doesn't move around though if you press it with your fingers. It literally feels like pure bone attached.

Well, she is full and wants me to put the rest away for later. She had 2 bites (hey, that is a start).

Love, Tracy






March 2, 2004 7:24 PM

Well, we have to go get an x-ray (actually out of the room-yuck!) because Katia has some bump now on her back by her ribs. It feels like a bone growing from her rib and it hurts her so pray this turns out to be nothing much. It just came out of nowhere.

Remember American Idol tonight! Heather performs:) Call in and vote for her:)

Love, Tracy







March 2, 2004 11:10 AM
Day 26

Good morning:)

We have had a semi-busy morning but all is okay here. Katia's oxygen level is still going up and down but more up than down so that is good. They are about to stop the IV nutrition so hopefully that will improve her belly. Right now she is sitting up playing on her bed. I am going to put pics of that up when I am done here so it may take 20 or 30 minutes.

She is a chatter box right now. She still won't have ANYTHING to do with any of the "play therapist". She doesn't want to play with anyone but us.

So, let me go work on the pictures so you can see her today:)

I will be back.

Love, Tracy






March 1, 2004 10:30 PM

Just a quick update. Katia's belly seems to be big mainly because she has just been on the IV nutrition far too long. We are going to take her off for 24 hours to see if that helps. If it helps, then we need to figure out another way to feed her (probably a feeding tube in her belly) or find a way to lessen the amount she is receiving through the IV. Won't she just eat? Well, she hasn't eaten for so long that her belly has just shrunk up leaving her no real interest in food or the real ability to hold down enough. We expected this so now we have to work on that.

Other than that, she is just about the same. Her belly hurts and is making a lot of noise. Sounds like a mad volcano when you listen with a stethescope.

So, I bid you good night. Thursday we will check her marrow but we won't find out the results until early the following week:)

Pray she is all donor cells.

Love, Tracy






March 1, 2004 5:47 PM

Well little Katia has a pretty big belly right now that is not being very friendly to her. It hurts her a lot. They turned up her pain medicine again, which we had been weaning down, so hopefully that will help some.

Right now she is watching TV but she will not sit up. She screams. I just pray it is gas or something. I think all this time of her not eating is really causing more problems than we think.

Just pray it isn't anything that can't be easily dealt with.

God has been taking very good care of Katia. He is right here holding her hand and that is due to all the prayers and love and faith. Katia prays to feel better and she has a lot of faith for a 4 year old. She also gets mad when she doesn't feel better especially if I give her medicine and SAY it will make her feel better. She waste no time telling me when she doesn't feel better.

You gotta love her:)

Well, I will be back later. I should know the results later this evening.
Love, Tracy





March 1, 2004 10:20 AM
Day 25

Moving right along on these days. I can't believe it is already March! I am glad time seems to be speeding by right now.

Katia had a sore belly throughout the night so I am requesting an ultrasound to make sure there is nothing going on in there that shouldn't be going on. I can tell she is in pain or discomfort because her heart rate stays high.

Her cough seems to be somewhat improved though. It is hard to tell because she is always clearing her throat.

Don't forget to watch American Idol tomorrow night on FOX to see Heather perform. Hopefully she makes it through to the next round:) Go Heather!

Please pray for our friends up there in the prayer request area. We also have a friend right next door to us, Billy G. and he is about to have his bone marrow transplant in the next few days. Please keep him in your prayers. If you visit his website, they are currently on page 35 I think for the recent updates. He has a very nice page that his dad keeps up. His mom is very sweet and we of course see eachother quite a bit up here. Billy has quite a story.

Well, I think that is about it for now. I will keep you up on what is going on with Katia's tummy. She is crying right now so I need to tend to her:)

Love, Tracy

PS THANK YOU SO MUCH FOR ALL OF THE CAREBEAR LINKS! I FOUND WHAT I NEEDED WITH YOUR HELP. WOW, DID YOU RESPOND OR WHAT! YOU GUYS ARE SOME GREAT INTERNET RESEARCHERS:)





February 29, 2004 10:19 PM

Hello. First please see the prayer request as I have added two very important request up there. Thank you:)

Katia is doing okay this evening. She seems to really be bothered by this runny nose and cough. Her oxygen levels have been getting down to 90-93 most of the afternoon. Her blood pressure is slightly high tonight, quite a bit higher than her normal though, and she just is tired and wants to go to sleep. Her tummy is sore again. I feel so bad because all I can do is give her horrible medicines and they don't make her FEEL better. They just keep her blood pressure right at the limit before she has to take it again.

Why is her blood pressure high? Well she is on a few medicines which can cause this and all of them she HAS to have to keep her body from rejecting the new marrow.

She tries to ignore things and just watch movies. Thank goodness for movies!!

My main concern is her oxygen levels but we may clear this up with some benedryl if it is in fact being caused by cold symptoms. They have listened to her lungs many times and they sound fine.

Just pray tonight that this is a small problem and will go away over the next few days. If she is coming down with a viral infection, that would explain her drop in WBC today.

Okay, I have a question. I am looking for a website, book, something to show me a picture and all of the names for the many CareBears out there. As a mother of a curious 4 year old, I am asked this a lot (I feel like she is testing me) so if there is a good website that someone can point me to...)

Thankyou:)

Good night.

Love, Tracy and Katia







February 29, 2004 2:23 PM

Katia had her stitches removed and the nasal tests done to check for viruses (she wasn't happy about either) and now she is just watching TV. She is munching on crackers (2 little bites but better than nothing).

I have a prayer request. It will stay listed above but I want to add it here right now.


MAXIE L
I have had a link to Maxie for quite some time but now he really needs prayers. He is 10 years old and has been fighting Rhabdomyosarcoma for some time but he is hospitalized again and undergoing tests. He is really sick and they fear it has spread to his brain. He is down to 61 pounds. Please drop by and offer some words of encouragement.




February 29, 2004 11:06 AM
Day 24

Well I am back and I feel much better!!! I slept from 9:30 PM to 9:30 AM. Although that was great and Myron had a fine time here with Katia, I still prefer to be here. I just need to take the break when I feel I need it and Myron is more than willing to hop over here. They had a very nice night and Katia did well.

Ms. Katia is getting platelets right now. They dropped all the way down to 8 and her WBC count dropped to 1.89 so we will see what is going on. She is having a bit more of a cough and her nose is runny so we are going to test her for any viruses. That is done by a nose flush and then she also gets stitches taken out today from the skin biopsy on her arm. She is going to be an unhappy baby for a while but she will be glad to get those out of her arm.

Well, not much else is going on. I will be back later today:)

Love, Tracy






February 28, 2004 8:50PM

Guess where I am right now. I am at the Ronald McDonald House and I am here for the night!!

Myron is over there with Katia right now and I am sure they will have a fun night!!

So, I am making this short and going to BED!!!! The girls and Grammie are going home so it is just me here which is good because I don't want to eat or talk or anything, just sleep on a BIG AND REAL BED!!!!

So, I bid you goodnight, sleep tight and don't let the ladybugs bite:)

Katia be good for daddy. I already miss you sweetie but I will see you first thing in the morning:)Love, Mommy

Love,Tracy




February 28, 2004 7:48 AM
Day 23

Good morning:)

I had already updated but it somehow disappeared?

Anyway, I have had coffee now so I can summarize better:)

You know last week I said I wanted Katia's WBC count to at least reach 1.00? Well that was accomplished early in the week. (smile smile)

Anyway, do you know what it is today? Today the count is 2.00!!

Isn't that great. I was happy to come back from breakfast and find that.

We had a long night of no sleep really, mainly because Katia just wanted to watch TV or talk or have my attention. Needless to say, I was feeling pretty frusterated and of course tired! BUT, the counts are great and I am happy:)

See what prayers do? Thank YOU for your prayers and ecouragement.

So that is about all. Myron and the girls and Grammie will be up here part of the day and Myron is planning on spending the night tonight. I am sure him AND Katia will enjoy that!

Love, Tracy




February 27, 2004 7:32 PM

Good evening:)

We have had a good day. Not much happening and no getting out of bed but no problems to speak of either. Katia has slept most of the afternoon away and is just now waking up. (LONG NIGHT?)

She is in a good mood and didn't yell at her nurses tonight as they did shift change so...

She was pretty fiesty this afternoon but shortly after went to sleep so maybe she was just tired and didn't want to be aggravated. Who could blame her?

Not much else is going on. I have been feeling kinda puny today so hopefully we will call it a night early and tomorrow will be here before we know it. We are moving along with these days:)

Love, Tracy






February 27, 2004 6:48 AM
Day 22

Good morning:)

"Rise and shine, it is daylight in the swamps."

I remember my dad saying that to us on Saturday mornings to get us up for good ole "yard days".

Well, Katia's morning call is usually something minor but major to her. This morning it was because her "ET light" (finger probe for oxygen and heart rate machine) was needing to go to a new finger. Okay, the rule is every 12 hours you are supposed to change fingers so there is no blistering. I think the child literally has an alarm clark on that because it is always around 6PM and 6AM? Real stickler for rules...

We had a decent night, much better than before I have to say. Katia is either very agreeable with her nurse through the night and will let her do what she needs like plugging her in and unplugging her to medicines (which means picking up her shirt and dealing with her broviac) or she is very unagreeable with her nurses and won't let them take blood pressures and temperatures or touch her shirt without me holding her hand. Last night she was agreeable:) "Thank you, baby!"

Before I sign on here, I always go to the guestbook and read over what has been written and that really helps me to get a more positive outlook. Thank you so much for all of your encouragement!!! I can't ever say that enough.

I am glad to be able to post some smiling pictures of Katia. Hopefully they will keep on improving:) I can't wait till the day we take her home! It is possible, very likely, that before we go home we will go spend time at the Ronald McDonald House and THEN go home. That would be okay too. It would give us a smidgen of independence before going home and regular beds to sleep on:) For now, we just have to be patient and let the days go by and counts come up and keep praying that Katia keeps moving ahead gracefully without any problems. I look so forward each day to getting her "reportcard" (labwork) and seeing how her blood counts, liver and kidney counts, and just everything is doing. I am praying her WBC count has come up some also.

There are quite a few things that are going to be having to get done at home between now and the time we come home so Myron is steadily working on preparing the house. Everything has to be just right and sparkling clean and germ free. We are going to try to put air purifiers in each of the rooms to keep away any chance of mold, mildews and bacterias from getting in and floating around the house. Sounds grose doesn't it? I know which ones I want because you don't have to replace a filter, just lift out a piece and clean them and they are small and energy efficient and QUIET!

I was telling one of the nurses last night how quiet things are going to seem when we go home. WOW! I have to say the staff here, for the most part, is very quiet at night. They dim the lights in the hallways and try to stay quiet within reason. I can't say enough good things about All Children's Hospital and their wonderful staff of Doctors, Nurses, Cleaning and Maintenance, just everyone. Very smooth running...

Well, time for coffee:)

Katia is watching Teletubbies so she is quite occupied:)

Love, Tracy

PS WOW! Over 400,000 hits to the page!!! Thank you so much!






February 26, 2004 8:46 PM

Good evening:)
We are having a tempermental night and that is causing blood pressure problems but we are handling them with medicine (which Katia hates) so hopefully, maybe, we will have a better night tonight than last night. I think we will. It seems so. I had a "talk" with Katia about sleeping and the importance of sleep for our bodies. She looked like she was listening.

We had daddy here for quite a while today so that was nice. You can tell by the new pictures (all of which were taken today by the way) that we had fun.

Right now, Katia is watching Shrek and seems to be enjoying it:) Who doesn't like Shrek? He is cool!!

Not much else to tell. Our little next door neighbor went home today. He was transplanted on December 10th for AML also. He is about a 1 1/2 years old and absolutely adorable:)

Katia is requiring my attention:)

Love, Tracy






February 26, 2004 9:00 AM
Day 21



To all,


First, I want to post Myron's message here from the guestbook:)

Hello everyone, Just another quick note to say thank you for your continued prayers and words of encouragement.

We are so happy about the way things are begining to show improvement! and yet still hesitant to show our excitement because we've seen so many times that things can change in a heartbeat.

I know this may sound pesimistic, but believe me, we are not! It's just that this is such a horrible disease... It has sure taken its toll on the Solomons...

Tracy, you are a Marvel you still have the strength of a hundred men, just amazing. I know that better days are coming...

Anyway, please continue to pray for Katia's recovery as I know you will.

Our thougts and prayers continue to be with you, and our hearts are with the many families who are living their own nightmare.

I want to thank all of you who have contributed to the Katia Solomon Fund. You have helped to keep our family afloat, while I continue to have to be away from work and you also make an impact in the lives of many others.

Let's continue to build up the Marrow registry, to give others hope. Let's continue, in anyway we can to help lighten the load of those who need a helping hand... It will come back to you, that has been promised.

Katia, I look forward daily to our little play time, and of course lots of hugs and kisses...I love you my little sugar baby, you are doing so good!

God bless you all, and I look forward to chatring at you later. Luv, Myron.



Okay, this is Tracy.

Katia is not too happy this morning. Her belly bothered her throughout the night BUT I think she is feeling somewhat better right now. I just know she really didn't get much sleep and she got up pretty early this morning wanting to watch a movie:)

Her counts dropped a pinch in the WBC count. Yesterday it was 1.55 and today it is 1.54. That is okay as long as we don't stay on this trend. She is getting blood today because her hemoglobin went from 8.1 to 7.3 and since she received platelets last night late, her platelets are fine this morning at 86 (low but fine for Katia right now).

Well, that is all the main stuff I keep up with here.

Please keep our family in your prayers. This 6 months so far apart have been quite hard on us, our kids, our finances, and just everything all around. They have handled it much better than expected but I know it is wearing on all of us. I must say we have also grown in a lot of ways with our spirituality and faith. We will continue to do what we are doing and I know there are a lot of prayers for us already, I just like to specify. Just like I miss being home, they miss me being home. Things are just so out of whack and the strain really does take a toll like Myron said. It will be nice when we are able to get back home and he can return to work and things go back to the "normal" for us which of course is far from a "normal" kind of normal but something we have learned to live with. We really try to show our kids an example of "making lemonade out of lemons" but it gets hard.

One thing I have done while I have been here for all this time is think up so pretty cool new family traditions. There are quite a few things I have in mind and if only a couple of them pan out, I really think they will be very enjoyable and memorable. I always see things in a "making memories" sort of way. That is why I enjoy taking pictures so much. They are a way of making memories. You know how it is when you smell a perfume that maybe a grandparent used to wear? Like, when I smell coffee, I think of my Great Aunt. When I smell cakes, I think of my dear Mother-in-Law. When I smell fresh mowed grass, it takes me back to when I was a kid on Saturdays when we used to do yard work. When I drive in my car in the morning (or when I used to) and the sun shines into the window and hits my face, I think of early morning doctor visits when I was a kid going to my pediatrician. So many things come back. I always wonder what my kids' memories are going to be when they are older. I am sure coffee and cleanliness will be somewhere on that list:)

Well, Katia is kinda mad right now because her "Pain button" is off since it can't run with a medicine she is receiving. So, I need to go amuse her and get her mind off her button or the lack there of:) I don't need her crying and raising her blood pressure.

Thank you for checking in on us:)

Love, Tracy


*******




February 25, 2004 7:15 PM

Well, I was going to wait to update so I could tell you Katia got out of bed but it doesn't seem like that is going to happen today. Her belly is bothering her. We had a chest x-ray today which looked good:) Then we had an abdominal x-ray but now they want to do another one. We thought maybe she was just really constipated but she doesn't seem to be now so they need to do another x-ray. She isn't too happy about that but what has to be done...

Anyway, not much else is going on. We are just hanging out here together and Katia is having a day of rest and watching movies so that is okay.

Maybe tomorrow she will be able to get out of bed for a little while.

We have a new nurse tonight that we haven't had before so hopefully Katia will be agreeable and we will have a good night:)

Love, Tracy





February 25, 2004 10:30 AM
Day 20!!!

We are moving along and things continue to be stable. Katia's WBC count went up a small amount again today to a nice 1.55 which made me very happy. It means her body is more able to heal and hopefully that will take away her mouth sores and we can wean her off her pain meds. Her hemoglobin however dropped all the way down from 9.1 to 8.1 so I assume her new marrow isn't producing this on its own yet. We thought maybe it was. I am still very happy with where Katia is and it is only Day #20.

She had an "okay" evening and we got some sleep. She will get better and better with that as she weans off the steroids (which are making her very very very tempermental towards everyone) and also as this cough goes away and her mouth sores heal. She got out of bed again while Myron was here last night. He brought her a little scooter thing to sit down on and roll around with and she asked to use it:) So, two times out of bed yesterday is great!!! That was the perfect thing to bring her:)

I am hoping she will feel good enough in a little while and get out of bed again. We are trying to "lighten her load" with lessening the size of the pumps on her IV pole we have to drag around behind her. That thing is bulky and heavy and I can't let go of her hand to push the pole or she falls over. So, we are working on that. They have to figure out how small of a machine they can go to and still be able to run her meds on time without running out of space.

I am still amazed by her broviac. I couldn't imagine her having to go through all of this with shots or even an IV stuck in her arm. We have had IVs in the past and they always blow out her veins and have to be replaced. This is not a pleasant thing for Katia and it takes so many people to hold her still that I thank God everyday for that broviac!!! Katia loves her broviac too! She remembers not having it while she was in remission and having to have blood drawn from her arm or Bone Marrow Aspirates and Lumbar Punctures done without sedatives. She LOVES her broviac!! I think of ALL the things that are a blessing during treatments now for cancer compared to not so many years back. Another is the medicines they use to prevent all the nausea. Man, that stuff is just great! Although treatment is very hard on the body, they could be, and did used to be, a lot worse.

I think one thing that Katia has picked up on this time she is going through treatment is praying. It is so cute to hear her just pray on her own. Well last night, she was really being quite fiesty with me trying to clean her up after a diaper change and brushing her teeth. She was kicking and screaming and such. (Thank you Steroids) Anyway, I told her to either calm down or she was going to get her blood pressure so high she would need more medicine. SHE HATES MEDICINE BY MOUTH. Well, her machine was beeping (the one that keeps up with her oxygen and heart rate) and she knows that as long as it beeps, her blood pressure is usually high and they bring in the medicine so... to sum this up... she prayed, "Jesus, help me not be mad and make my beeping stop. I don't want mouth medicine." Well, I wanted to laugh at her wording of this prayer but we all know, Katia hates to be laughed at and that just wouldn't help matters so I just gave her a hug:) She is so funny. She sees things in a much different way than we do!

Well, that is about it for Katia news:)

Please continue your prayers for Abby O. Her father put a new update on their page which really explains how she is doing and what is going on. They are such a terrific family and are being so strong throughout all of this. I know they really appreciate all the prayers and encouragment.

I will be back later:)

Love, Tracy









February 24, 2004 5:57 PM

First, if you haven't read the 2:30 PM update today, drop down there and read it. It has good news about Katia's counts.

I am passing on you some more information on Abby O. She is in very critical condition. Her Mom, Dad and family are with her. She is now on 24 hour dialysis and her skin is in very bad shape. She is being read to by her parents and listening to peaceful music and this seems to calm her and keep her at peace. Please go by and leave some words of strength and encouragment to this family. That have seen Abby through so much and they are so strong but this is just such a horrible thing for any parents to have to face, more than I can even imagine.

Katia passed up playing with Meritt again today. Meritt, if you remember, is the physical therapist here and does a world of good for the children. Katia says she is too sick to play but we are going to try to get her more active tomorrow. She really needs this especially for her lungs. The activity would probably help her to cough less in the long run and she needs to build back up the strength in her legs and back. She is very shaky. Please pray for Katia to have patience with Meritt and the urge to play.

"Meritt, Katia likes you, really:)"

Well, that is about all for now. I will be back. Love, Tracy





February 24, 2004 2:30 PM

Well I want to share some good news with you:)

Katia's WBC Count went from 0.93 yesterday to 1.28 today!! Plus her hemoglobin count went from 8.8 yesterday up to 9.1 today on its own (not with a transfusion) so this is good. Hopefully all of this is pointing to a good report on day 30 when we check her marrow to see how the engrafting is going. I am happy about the counts. That just made my day!!!

Okay, something else. When I walked over to the Ronald McDonald House today, I got up to the room and when I looked in the mirror, a ladybug was on my neck. It had landed there on my walk over:) Isn't that just so sweet? It has to mean something really great! I told Katia and she was all smiles (which is nic to see).

She had her stitches taken out of her broviac finally. Hopefully that will make that feel better. Her broviac has been sore to her. That broviac was replaced right before transplant but they had to wait for her counts to come up some before they messed with the stitches.

So, a lot has been going on today. It is always very tiring to hold her down to do any procedures so my arms are really sore from the stitches being removed. KATIA IS A VERY VERY STRONG CHILD!!!

So, I guess that is about all that is going on right now but that is enough. I am happy about the counts and feeling very hopeful:)

Oh and also, Katia got out of bed for about 20 minutes and walked the length of her room. She walked it once and then just went and laid down on her playmat. Now she is back in bed and wants to be plugged back in. They had unplugged her hoping she would be a bit more active without the pole following her. Maybe in another day or two:) I am proud of how well she is doing and how hard she is trying to keep happy throughout all of this. She is one tough little cookie!!! I love her:)

Love, Tracy





February 24, 2004 7:00 AM
Day 19

Thank you so much for your prayers! Last night was way better than the night before. Katia hardly cried at all and she was a lot more willing to work with the nurse than the night before. A lot of times she has to have me hold her hand when they do anything like blood pressure, temperatures, diaper changes, plugging in medicines, unplugging medicines, etc. Well needless to say, that can be every 15 minutes and that just wears me down like a reporter's pencil!! Well last night she was more flexible with the nurse and I appreciate that. She knows I do. I can tell she is trying very hard to leave me alone and let me get some sleep but she knows if she just whispers my name, I hear her:)

I have to say that over the last 182 days in here, I have learned to look at waking up in a whole new light. I definately am a person that appreciates my sleep but I also enjoy doing tedious (however that is spelled) things a lot more. I don't just do things and not think about it. When I change a diaper or fix her bed or just prop up her pillows, I am glad I can be there to help her feel better. She has such a dependency on that and she should, I am her mommy and she isn't happy about being here either.

Well I am going to get some coffee so I can see straight and start my day:) They really need to come out with a caffeine patch or IV coffee for us parents in the hospital and out of the hospital!!

Love, Tracy






February 23, 2004 6:30 PM

Katia has had a good day. She is still coughing but the good thing is she gets very very mad at her cough and her temper is a good thing. We are going to be weaning her off of the steroids over the next 2 months. We can't take her off too fast. Her doctor is very pleased with her progress. We just had a talk about Katia has a bone marrow transplant, they have decided it would be best to do the spinal chemo each month since she had such high amounts of leukemia in her spinal fluid both times (both at original diagnosis and at relapse). I agree with them fully on this. I asked what the chances would be of her relapsing in her marrow after having had the transplant and there is around a 30hance (which is lower than I expected to hear). I know there no cure for cancer, at this time, but Katia has her second chance at life and she is going to LIVE it each and everyday. We have lost so many sweet children and adults to this disease and other blood related diseases. I feel for us to LIVE each day and show Katia the world is our way of being very grateful for this opportunity. I firmly believe that someday, soon, there will be an absolute cure for cancer and they will be able to send people home and tell them, "Don't worry about a thing, you are back to normal". Everyday is one day closer to a cure and we are going to participate in helping to find that and help others as much as possible.

Please pray for Abby's family right now. Abby has complete lung and liver failure. It is just a horrible situation for such a sweet girl and loving family to have to sit by and watch.

Having gone through this and having to make many decisions with our own family, I have learned that there are no right answers on how to handle things. You have to follow what God puts in your heart. There is never a right thing to say but a person should say something. So many times in life, something happens and we want to say or do something but we just don't know what. That is normal. The thing about life is we never know what tomorrow holds for any of us. Only God knows what tomorrow holds. That is scary in a lot of ways but it requires trust and faith and let me tell you, it is not easy to have trust and faith all the time.

Please pray for everyone, not just the families facing these types of situations but pray for everyone and yourselves. Everyone needs prayer and comfort. Everyone has problems and no matter how small those problems may seem to some, the person facing the problem sees it as a problem. I hope I am not babbling here but that just came to me by something I was reading and I wanted to share it with you.

We are praying for a better day tomorrow than today. OH, Katia's WBC count went up today to a nice 0.93 which gets us closer to the 1.0 I was hoping to achieve this week:) That was our prayer last night is that we will get to 1.0 this week and look how close we are. As her counts go up, she runs less risk of getting sicker and her throat heals little by little.

We are going to cut down a pinch on her pain meds and see how low we can get them and still keep her comfortable. I don't want her to suffer at all but she is good about saying when she has pain and when she doesn't.

So, that is about all for now. Thank you for checking on us. I love that little baby at the top of the page!!! I appreciate your love for her too!

Love, Tracy





February 23, 2004 6:00 AM
Day 18

As you can see by the time above, this is an early update. I decided to go ahead and get up and just start my day early:) It seems Katia needs something every 20 minutes and it just is easier to get up than to keep falling asleep and getting waken up. Some parents compare this to having a newborn baby at home. I don't know but I do believe it is close to that with just a lot of other added tensions due to healthy and the surroundings of a hospital instead of home. I REALLY try to maintain my patience through all of this. Katia stays awake most of the night and gets really irritated anytime she has to be bothered (well that is very often due to the amount of medicines she is on and then also some of the meds require checking her blood pressure and temperature so often).

I lay here a lot and just think to myself that I can't complain because things could be a lot worse. I have to tell myself that a LOT.

I try to perk up and think about what things will be like when we go home and what we can do. I think Katia is going to wake up in the night wondering why nobody is plugging in a med or unplugging a med, why there are no machines beeping and why nobody cares what her blood pressure is.

Well, she just had Lasix so she is peeing a lot so I better start diaper duty:)

Love, Tracy









February 22, 2004 10:00 PM

First, please pray for Abby O. tonight. The doctors are not giving her family much hope for her recovery. Just in October Abby was doing so great and then she had graft failure, a bone marrow transplant in January and now serious problems with GVHD. So much, so quickly. Abby also has Leukemia AML like Katia. Please offer her family words of strength and encouragment.

Katia is doing okay tonight. Myron, Grammie and the girls just left. She played so good with Sharayah and Tatiana and Myron held her (which always makes her happy). It is always nice being able to be together as a family. I will add pictures either tonight or tomorrow:)

A bit of nice news is I got Katia out of her bed tonight and took her to sit on her play mat. She wasn't very happy with it but I feel good about getting her out of bed. Maybe in the next week she will feel good and WANT to go over there more. Her legs are quite sore even though we have been doing exercises in bed. She is just so worn out but her little body has been through so much. She is sitting up in bed more and playing with her little toys from her "busy box" so that makes her happy. She is mad at her cough and she says, "I want to feel better." I always assure her, "You will baby, real soon."

Well, I will bid you good night, sleep tight, and don't let the ladybugs bite:)

Love, Tracy





February 22, 2004 10:30 AM
Day 17

Good morning.
Let's start judging these nights of Katia's and days of Katia's on a scale of 1-10. One being really bad and 10 being really good.

I would have to say last night was around a 6 which is about the same as the last few nights. She is just so irritated and aggravated by all of her coughing. I try to tell her she will be feeling better soon but I don't think she understands that "soon" doesn't mean in 5 minutes. She isn't throwing up and that makes both of us happy. She even says she is happy she doesn't puke. I think she is reminding herself it could be worse.

She is needing platelets 2 times a day now because everytime we check her levels, they are in the 30's which is too low for her. That could be dangerous so we give her more. Her WBC count dropped a bit from yesterday at 0.68 to 0.62 today but it is still a decent number. The hemoglobin levels slowly go back down and she gets a transfusion on those about 2 times a week but that is also expected. Her potassium levels have been dropping but today they are good, right where they belong. Her blood pressure is still running high but she is maintaining it from going higher with medicine.

Let me sum all of that up. I am hoping over this next week her WBC count will at least get to 1.00 and she can start getting some comfort in her throat. She is on a lot of pain medicine which makes her kinda loopy so I would like to see that get turned down some but not until the sores in her throat are almost gone. I don't want her in pain either. With all she goes through, she doesn't need to be in pain.

Today is day #180 in the hospital for us. I am grateful for the doctors and nurses helping me to keep my sanity. They aren't just Katia's nurses and doctors but they are our friends and so much more. God bless them for doing all they do and for putting up with us for this long! Nobody has quit lately:)

Well, I am going to get some coffee!! Love, Tracy







February 21, 2004 9:00 PM

Today has been a good day for a few reasons. Myron and I went to a Ronald McDonald House meeting (luncheon) with all of their volunteers. It was beautiful and set up like a cruise ship theme. All the staff members from the house we stay at put on a really great show! I was laughing and laughing!!! They had a really great meal. Then Myron and I got up and shared Katia's story and what the Ronald McDonald House has meant to us and we shared a video that Myron and the WB channel studio put together with Katia's pictures and the "Katia Song" in the background. The video is just really cute and precious. Thank you, Devin for helping Myron with that video:) It means the world to us to have that.

Katia has had a decent day. She hasn't improved any but she hasn't worsened at all. So, that is good. She has been "communicating" more which can be good and bad depending on what she is trying to say. Sometimes it is VERY nice and other times, quite the opposite. I have to say, she definitely gets her point across and I can always tell WHO she has gotten her point across to just by the look on their face. The nurses up here are used to kids getting mouthy due to some of the drugs they have to take so we all understand it isn't Katia talking but sometimes it is funny and you can't laugh because, as we all know, she doesn't like to be laughed at. I don't think Katia will ever want to work in a comedy setting.

Well, she is still coughing a lot and that is really bugging her so I better close this out or she says I am "not being nice".

Thank you for checking on Katia and for each and every prayer being said.

Love, Tracy







February 21, 2004 9:13 AM
Day 16

Good morning:)
Puke free night!!!
I am beginning to see a trend here of improvement!
I am so happy that things are improving for Ms. Katia. She seems to be coughing a little bit less but still a lot but I really think that is going to be improving over the next few days.

I don't have too much time here for an update but I want you to play for Katia today that she will use some of her mouthwashes because they do help her throat. She is doing better and I hope she sees it is for her good and not just us trying to force her to drink something nasty.

Katia is such a smart little baby and she can talk quite a bit and try to reason with us to see her way. I appreciate that about her though.

Well she is crying about something hurting so let me get to her:)

Love, Tracy






February 20, 2004 8:45 PM

~~~~I am whispering this. Katia hasn't thrown up for 24 hours. Shhhh, I don't want to jinx this. yippeeeeee!~~~~~~

Okay, now on to the regular voice:)

Really, Katia is still coughing a LOT but she isn't throwing up so MAYBE her throat is healing. I know most of the mucus is gone and right now, she has a lot of raw sores but without the mucus SO I am figuring that with her counts creeping up slowly, maybe she will be a lot better in a few days. The cough right now is what is bothering her the most. Her blood pressure is staying under control with the new medicine, Procardia, she takes twice a day. She is taking Lasix twice a day and that seems to regulating her fluid detention. It seems her kidneys, liver and lungs are all doing well also. So, I am so thankful that things are going along and Katia seems to be doing well. Thank you, God.

Right now, Tatiana is here with Katia watching Dora and Katia is in a reasonably good mood. She was actually playful for a while this afternoon and smiling. That just warms all of us inside. Today when her doctor was trying to examine her, Katia was kicking and squirming and her doctor was pleased:) Isn't that nice? They are glad to see her being her fiesty little self. I like seeing that too. For a little while, she was just laying there and that concerned me but she is coming back around.

She does get very shaky when she stands up so we are working on that a few times each day and massaging her legs with lotion. She likes that:)

I told her today that she is going to start feeling better because she gets so mad at this cough. She talks to the cough or should I say growls at her cough. She hates coughing. But, she is happy she doesn't need her puke bucket, as we call it.

She is still very dependent on her pain meds and she pushes the button 100's and 100's of time each shift. She may push it 500 times but only actually get the medicine 10 or 15 times. So, I don't worry about her "going to town" on that button. Just having it beep makes her content sometimes.

Well, I guess that is about it for now. She is coughing and coughing and doesn't like it when I type if she doesn't feel good so...


Love, Tracy







February 20, 2004 8:50 AM
Day 15

Good morning:)
Well, last night was better it seems. Katia still got up and down but not for such long periods of time. She doesn't like anyone else doing her pressure and temperature but me and since they do it so often due to her blood pressure being high sometimes and also because it is required to take it often during any blood product transfusions and certain medicines she takes so...
Needless to say, while I was typing that, it was vitals time:)

Anyway, I am thankful she hasn't had any fevers recently, her vomiting has definitely slowed down, not stopped but not as often. Her coughing has become worse and hurts when she coughs. She doesn't have so much mucus in her throat, just pretty raw sores. I know that has to hurt. Her pain medicine is turned up pretty high and she still says it hurts and cries a lot with her coughing. I feel so bad for her.

Katia has been drinking a little here and there and keeping it in which is good because I have to put her blood pressure medicine in her water and hope she keeps it down. She does:)

I did get some better sleep last night. Although I get up and down, God has blessed me with the ability to fall back to sleep until the next time. I am so glad I can fall back asleep:)

So, I guess that is all for now. Pray today is a better day. Some of her counts actually went back down from yesterday. I expected them to go up but then I should know better. They are expected to bounce around some. Her WBC count did go up a pinch though and are now at 0.47. That is good. I am sure that as they go up, she will start to feel better and her mouth will heal.

Oh, Katia has been having a problem with water retention so she is now on a higher dose of lasix two times a day. That seems to be working right now and she doesn't appear to be as puffy today as she was yesterday. I am amazed by the medicines available. I know there isn't always a magical answer but for now, Katia's problems seem to be handled by changing medicines around.

Love, Tracy






February 19, 2004 6:25 PM

Well, today has been full of coughing and a very very sore throat. Katia's pain meds were turned up so hopefully she will be able to relax and rest some. She had a sorta runny diaper, which isn't like her to do anything without laxatives, so hopefully we aren't starting up with another problem. I will say this. I really see Katia getting through all of this and getting home. I just know we are going to have a bumpy road over these next few weeks. I just don't want things to turn serious, more serious than they are. Katia has already been through so much. We really need to get back into a routine for our family. Myron hopes to go back to work by the first or second week in March. He has been off since we came back in the hospital back in August and things just seem to spin out of control for so long. We need to get back into having an income and take care of some things.

I don't normally go into that side of all of this but the loss of an income and Myron going to work each day has just really been a strain. Myron enjoys his job and he enjoys the routine as much as I enjoy my routine at home. Also, both "routines" are vitally important in our family. He has kept very very busy with the blood and marrow drives and we are very encouraged by all that was accomplished. We plan to continue to do these things. We plan to continue spreading the word. Our plan with The Katia Solomon Fund was to first get our family through this and to continue funding immediate drives. We have gone above and beyond that a few times with helping a couple of others in need and already donating to the Florida Blood Service Marrow Program. When you live in this situation, you tend to see a lot of things happening that you never even imagined before your own life spun out of control.

I see a lot of families on this floor spending a lot of time together and I can appreciate the fact they want to spend quality time together. We live in a situation that we can't possibly know what will happen day in and day out. We have to grasp hold of the here and now. It is just an understood situation up here on the floor between families.

It is also our hope to spread the word via "The Katia Song CD" and we have mailed out quite a few to those who have ordered them or made a contribution to The Katia Solomon Fund. Maybe someday she can sign CDs herself but for now, we just want to spread the word:)

I think back to when we didn't have a marrow match for her and how nervous we were and now that cord blood that someone so compassionately donated is flowing through Katia and growing inside her. I was talking to her today about her new blood and she likes it more now (I think because the spots are gone) and she wants it to make her feel better.

So many things have happened over the last 6 months of being in the hospital. This has been SUCH A ROLLERCOASTER! I would do it all over again if I had to. As a parent, we have to decide how much we are willing to put our child through to get them better. I look at it this way. There are so many new treatments and possible cures for cancer and other blood related diseases that everyday is a day closer to a miracle. Katia could be cured for good right now. She may have gotten the perfect blood for her body and now be able to heal and live a normal life. I pray that is so. I really believe that is so. For those who are having to do chemotherapy and radiation just to "buy more time", I think of course they should. Everyday scientist and researchers are discovering new things. Gleevac came around not too long ago and now that is like a miracle drug for Leukemia CML. Things happen everyday. New things. We were talking to someone who works with research of pediatric cancer the other day and I was amazed by some of the new things they are learning. It just reassured me that all of this is so worth it. This is our baby and anything we can do for her, we will.

Our family does not ask, "Why us?" I ask, "Why anybody?" Nobody deserves to face this but I figure we will just face it with as much strength and courage as possible, together as a family.

Please, in your daily prayers, remember to pray for the doctors and nurses, the researchers and scientist, the funding partners and just everyone. We didn't know cancer would ever effect our family, but it did. We certainly couldn't get through this without the help of others and without the prayers of others.

Thank you so much. I know I have babbled on and on but I just had that on my heart to share for a few reasons so I decided to come here and share it with you.

Love, Tracy







February 19, 2004 8:22 AM
Day 14

Long night...
Katia has a LOT of mucus in her throat and is just a coughing mess right now. She is unable to get any sleep to speak of because of this and when she is awake, of course, she wants me to be awake even if she doesn't need me:) I guess she doesn't want to just lay there by herself. She is drinking (which is good) but she still throws it up. She has held down 4 ounces of water this morning for about 30 minutes so maybe we are improving.

Needless to say, today will be a coffee day for me:)

As I was awake last night, I have been checking continuously on 2 other caringbridge children. One is Cade S. Cade went to be with Jesus last night around 5:45 PM CST. Please pray for the family. They lost their first son, Cole back in 2001 to this same disease. Cade just had a bone marrow transplant about 64 days ago for Fanconi Anemia.

The other is Abby O.
She was taken down to intensive care yesterday for liver failure and her counts just all dropped. Abby just had a bone marrow transplant on January 23 for AML and was doing really good until a few days back when she started having Acute GVHD of the liver. Please pray for her to keep her strength and fight to get back on the road to recovery. I have followed her story since I started Katia's page back in November 2002.

You see, last night I was getting so worn out and annoyed that I couldn't just get an hour of sleep but then these 2 families kept coming to my mind and I just figured I was being kept awake so I prayed and prayed. I don't always know what to pray for but I do know that prayers and concern for these children and their families definitely make some sort of difference.

There is never really the "right" thing to say or do in these instances but prayer is always right.

I spent quite a bit of my night praying for my own little baby, that she would be able to rest and get her body strong so she can recover and get home. I know going home is still quite a ways away but I am already planning out some things like what is the first meal I am going to cook so we can sit down and eat all together:)

I am already trying to plan where to put all her medicines away so they are easy to get to for her daily care. I can already picture our first night sleeping in a REAL bed. These are the thoughts that are keeping me moving ahead.

I am always a planner and it helps me to be able to sort things out in my head so things stay organized and not too overwhelming BUT the thought of going home just gets me so excited that I pray these next 2 - 3 months will just fly by!!!

Love, Tracy
14 days closer to home!





February 18, 2004 6:41 PM

Today has been reasonably more quiet. Katia's doctor is pleased with where Katia is healthwise. Katia is still throwing up quite a bit and needing platelets each day. She is becoming weaker but I do make her stand up a few times each day so she doesn't forget how plus she has to get weighed twice a day so she has to stand up then.

Although she gets very mad at me, I make her exercise her legs by bicycling against my hands. I want to keep her flexible so that when she feels better, she can get up and play:)

I want to say, I say this alot but I really really mean it, I appreciate each of your visits checking on Katia, myself and our entire family each day. This means more to me than you can imagine. I just know Katia's story is making a big impact on people registering as marrow donors and donating their newborn's cords. I really believe this has been Katia's purpose. We started The Katia Solomon Fund for many reasons but we can see Katia running it in the future. She is an amazing little girl!!! I am so very proud of my little baby. Almost everytime she opens her eyes, she says she loves me and that just melts my heart:) I bite my tongue when I think to complain about being tired or having a headache or something. She is enduring more than I have ever endured and she is such a tough little cookie:) I hope she will realize how many lives she is touching and what a difference she is making. So many people have just fallen in love with Katia. When she gets out of here, I will have to teach her to sign autographs:) What I am trying to say, is our family feels very blessed to have been able to spread, and continue to spread, a message that is so close and dear to our hearts and Katia appreciates all of your love and prayers too. She may not be able to talk much but she feels a lot and I know she feels the love:)

Well, I am tearing up here typing so I better wind this up. I love you guys and I appreciate you!

Love, Tracy
(13 days closer to home)


PS Please keep Abby O. in your prayers. She recently (January 23rd) had a bone marrow transplant-her second- and is not doing at all well. She has been transfered to PICU for closer observation.








February 18, 2004 9:47 AM
Day 13

Good morning.
Well last night was better. Katia got up a few times sick but she mainly slept. That is a big improvement for her.

Her bloodwork is coming back as expected and her WBC is slowly coming up. Today it is 0.27, up 0.03 from yesterday. Her potassium level was VERY low today at 2.2 which is supposed to be around 3.4-4.7 so they gave her a dose of potassium. I saw her heart rate was low last night and that is due to low potassium. It keeps your heartbeat regulated as well as a few other key jobs in your body. She has been having problems and needing help with her potassium but this is the lowest it has became. This could be due to her being on the lasix which is a diuretic to help drain some fluid from her. Her weight is up a little today due to fluid retention. But, when something is given to remove the fluid, other things have to be replaced, like potassium.

She had to have 2 platelet transfusions yesterday and blood but today the levels look okay. I am sure she will have to have platelets by tonight but it is nice that they are good this morning.

The main thing still bothering Katia is the vomitting. It is just wearing her out and she is sick of being sick. I try to tell her that she will get better but, well she is 4 and doesn't understand that at all. I don't blame her. I think I would be really irritated too. I know I would.

I will be back later today:)

Love, Tracy







February 17, 2004 6:24 PM

WHAT IS GVHD?
GRAFT VS HOST DISEASE- OCCURS WHEN THE DONOR'S MARROW RECOGNIZES THE RECIPIENT'S TISSUES AND ORGANS AS FOREIGN AND "ATTACKS" THEM. YOU WANT TO SEE A LITTLE BUT YOU DON'T WANT THE GVHD TO BECOME SEVERE.


It is hard to say if Katia is improving or just sleeping more but today is day 12 and I can definitely say we are another day closer to home:)

Katia is on a lot of medicines, which we have already limited, but it is still alot.

TPN (IV nutrition)
LIPIDS (IV nutrition)
GCSF - NEUPOGEN(To raise blood counts)
CELLCEPT (To raise blood counts)
CYCLOSPORIN (To prevent rejection of marrow)
LASIX (diuretic)
BENEDRYL
ATIVAN
PREDNISONE (Steroid for GVHD)
CEFEPINE (antibiotic)
AMPHOTERICIN (anti fungal)
ACYCLOVIR (Prophalaxis)
PROCARDIA (Blood Pressure Medicine)
VIT. K (Prevent Clotting)
ZOFRAN (anti nausea)
ZANTAC (acid reflux)
PENTAMINDINE (EVERY 14 DAYS to prevent pneumonia)
DAILY PLATELET TRANSFUSIONS
BLOOD TRANSFUSIONS

Needless to say, I know some of effects are caused by medications trying to help something else. She gets upset with the nurses always in here hooking up new medicines and taking down old ones. I can't blame her. She just wants to be left alone. She has been drinking some juice today and holding about 1/8 of it down. Better.

She is still throwing up a LOT but lesser volume. Better.

No fevers. GREAT!

So, I guess that sums up how Miss Katia is doing.

How am I doing? Better. I got about 4 straight hours of sleep last night!!! That was awesome. I was shocked when she woke me up to puke and I looked at the clock and 4 hours had passed. That was great for the both of us. I have read over a lot of messages, old and new, in the guestbook today and that gives me such strength and more encouragment than I can ever put into words. I can't explain the good of the guestbook. I think it also helps a lot of others, not just me, but people visiting and reading over other entries. No matter how you look at it, it is just uplifting.

A friend of mine, Karen, has been printing the guestbook for me. I am so grateful for that. I am going to have that out in our house for everyone to read. When we go home, I am definitely going to always keep the page going and add wonderful new pictures of Katia playing, eating, playing, eating, running around, dressing up, helping Mommy in the kitchen, playing and eating (did I say that already?)

I can't wait to have new things to take pictures of outside of this little hospital room and hospital. I miss the green of grass in pictures and the blue of the sky. I miss soft cushions on a sofa and I miss my bed:) It makes me happy to think about it all!!!!

I can't wait to vacume and clean and cook and sleep and take showers in my shower. I am so grateful that I have all of that to look forward to. I look forward to eating dinner as a family. That is so important to try to do each day and we really enjoy it!! One thing Katia won't have when she goes home, a highchair. She will be in a big chair like the rest of us:) She is becoming a big girl in the hospital. We have been here HALF A YEAR! I think of that and I think, WOW! That is a long long time.

Well, I better close for now.

I want to leave you with this. I received an email from Angel Dustin's Mom (he passed away a couple of months ago from AML). Well one of his little friends passed away yesterday (from AML) and they could really use some encouragement. I have no idea what these families are going through. They don't have a website but Dustin's Mom is being kind enough to pass on messages to them via email. You can leave messages to the parents of Payton Griffin (she just turned 4 in January) in Dustin's guestbook.
Angel Dustin's site

Stacie, Angel Dustin's Mom, asked me to pass this on because of all the love and encouragment that came to them via the guestbook at the time of Dustin's passing. Thank you so much.


Love, Tracy






February 16, 2004 10:47 AM
DAY 12

I haven't had a chance to go to the guestbook yet but I will in a bit. I just have a few seconds to update right now.

Our night was a bit better, and every little bit of improvement is welcome. Katia's WBC count is up to .24 this morning which is going up little by little by little. Up is good. Katia's skin is looking better but we are really concerned about her stomach. She throws up even if she just sips water or juice. She throws up for no reason and everytime she throws up, she has blood come up. Her platelets are being kept up but they just drop off each day again. That part I expected. I just think her stomach needs to be checked for GVHD also. If her skin was already affected, I think her organs could be too so... Something we need to look into today.

The newscast last night turned out beautifully. Sadly, it is not available online. It was very beautifully done, thank you, WB channel and News Team:) Thank you, David.

Well, I have a meeting in a bit but I wanted to update first. There is a machine of Katia's that seems to be possesed right now and making this horrible screaching for over 3 or 4 long long minutes so I am totally unable to concentrate:) Imagine a 2 year old screaming in your ear and not needing to stop to breathe.... There you have it:)

Love, Tracy




******

February 16, 2004 9:43 PM

I have to say that right now is a very very high stress moment and I figure I better update for a few reasons. Updating is a means of venting for me and for putting my thoughts down.

Katia throws up over and over and ANYTIME she drinks ANYTHING, she throws up and she throws up hard. She is on a few medicines for nausea, acid reflux, etc. Now her blood pressure is up so she is having to take blood pressure medication. All of this while she is screaming and the more she screams, the more she throws up and the higher her pressure and heart rate goes. She isn't understanding that all of this is making her miserable and have to take more medicine. The blood pressure medicine is by mouth and that is just something she never does well now. It is always a big huge thing.

I am getting such a dirty look right now like I am just being mean. I wish I could just get through to her that I love her and I can't do something that is hurting her. Man, do I wish she would see that. God, please put that in Katia's heart how much I love her and I WANT to give her anything she wants but I CAN'T.

I am accumilating a list of all the medicines she is on from the nurses so we can go over it and make sure none of them could be causing the problem and that all of them are totally necessary. They took away some today and lessened dosages of others since she didn't have a fever the last day and a half. This is just so much to have to register and digest and decide. You know? WOW!

I wish she was old enough that I could give her a book about all this to show her I am not making up the rules, this is the way it is.

Okay, I think I have blabbed enough and I do feel better for getting all of this typed out. People ask how I have the time and discipline to do this updating each day. I NEED to do this. It helps me. But, I also want to share what we are going through and hopefully help someone else going through this along with us or a newly diagnosed patient. I wish there was never another family that heard the news, their child has cancer or any other disability for that matter. Nobody or no family deserves this.

Love, Tracy






February 16, 2004 4:03 PM

The biopsy results are back and it is definitely GVHD of the skin. So from what I understand, that is a good thing to show the new marrow is fighting its way through. Her skin is clearing up some with the steroids so that is good. It seems to improve every hour. However, she is still throwing up a lot and throwing up blood. Her platelets were 50 so she is getting more to help her while throwing up. Katia is resting a bit better right now and seems somewhat more relaxed. At the same time, she is on more pain meds so that may be the reason. We are going to cut back on some of her antibiotics since her fever hasn't come back in the last 24 hours or so. Maybe that will help her tummy to feel better. She is moaning right now in her sleep. I hope she isn't uncomfortable and having sweet dreams:)

Love, Tracy






February 16, 2004 12:03 PM
DAY 11

I have to throw in a quick update so not to worry about not hearing from me. Katia has been very very sick with just continuing to throw up again and again. She in now NPO which is nothing by mouth and they are adding in another nausea medication and raising the dose on one she is already on. We are still awaiting the GVHD results for the skin biopsy.

We had absolutely no sleep last night as she was just either gagging or throwing up. She just finished throwing up again so she is resting from that. Good news, I am caught up on laundry. I just had a 2 hour break at the Ronald McDonald House and I vacumed (my chore there) and did laundry and that is amazingly relaxing to me, very soothing to do "normal" things.

Tatiana is home throwing up too? I think hers was just something she ate because she says she feels fine now but when they called me, I had to stomach and look for a Candid Camera hidden camera somewhere! I thought, "Is this a joke?" But, she is fine. Hopefully Katia will improve. She is completely puffy from so much puking and she is exausted from not being able to rest for a decent period of time.

Hey, this is longer than I thought but at least I am able to update:)

I want to thank everyone who has been sending packages and cards and postcards (I need to update the count on postcards when I am done here). They just really brighten our days. I can't respond individually for each package but please know they are getting here:)

I think that is all for now. Just keep Ms. Katia in your prayers that she will be able to rest and her body will be able to gain some much needed strength.

God bless you:)

Love, Tracy






February 15, 2004 9:43 PM

Okay:)
It looks like we may be in for a "peaceful" evening. After a LOT of throwing up, Katia has ceased throwing up for over an hour now and is sleeping. That is a big improvement to go more than an hour and to be sleeping with a heartrate of 128 (normally at this time it is between 160-180) so pray this continues.

She had a rough evening of drinking water and throwing up and wanting more water and throwing up... it goes on and on. Finally she decided to ease up on the H2O and it worked. I think her little body wants to rest, not digest. Hey, that rhymes:)

Well, just pray this continues. Tomorrow we should know the results of the skin biopsy and know for sure about the GVHD but it already looks a tad better with the steroids they are giving her. She is puffy in her face and eyes but other than that, her fluid is maintaining okay.

I thank Jesus for taking such good care of her. Tomorrow is day 11 so we will be 11 days closer to home sweet home:)

Love, Tracy








February 15, 2004 5:40 PM

So far today, Katia has either been asleep or throwing up and coughing and itching. I THINK her skin looks a tad bit better but her cheeks and face are very very red and puffy and she is just plain miserable. She stays pretty sedated from all of the pain medicine going into her and also the Benedryl and Ativan for nausea.

I miss my little Katia playing and chatting and being herself. When she does talk, she is very slow speaking and most of the time, she doesn't make much sense. She ask for things that are right in her hand or next to her because she doesn't even have the strength to feel around or sit up or she just doesn't realize she has it.

I am not saying this complaining at all. I just feel so bad for my little baby. I look at her and I can't imagine what her mind must be thinking, what pain she must be feeling and most of all what she thinks about me not being able to make her feel better. Usually when she was sick, I gave her medicine or a bandaid and cream and POOF she was better. I remember when a kiss was all she needed. Not now. Nothing makes her feel better. I just pray this will pass quickly and she will be able to see that she will feel better. I tell her she will feel better but she just looks at me like, "When?"

Well, I better close this out. I have gotten up and down about 10 times and I always worry she will need to throw up and I won't get her bucket there in time. She missed the bucket and made quite a mess and although it cleaned up and I just changed here shirt and bed and blankie, she was upset by all the activity I had to put her through to change her and the bed. She is too sore to be getting moved around.

Please pray for her comfort and rest. Love, Tracy









February 15, 2004 10:17 AM
Day 10

Okay, the night was long but not AS long so we are improving some. The doctor was just in here and is hoping that after another day on steroids, Katia's skin will feel better and start to look better. The biggest pestiness to Katia has to be her throat right now. She is so irritated by it and throwing up. She gets up in the night to throw up and doesn't even open her eyes. She throws up so forcefully that it makes everyone worry about her head. She puts way too much pressure so we are keeping her platelets as close to 100 as possible now.

Katia did have fun with her sisters last night and I really hope today will be an okay day for her. I think it is really good for her spirits to have fun and play around. She was actually singing along with a Wiggles CD and trying to dance around with daddy:)

She will talk with me and ask me questions and yesterday we got on the subject of home:) It made us both happy to talk about what we will do when we go home but she knows that will not be until she feels a lot better and is able to eat and play and walk around. She REALLY does understand 90 percent of this transplant stuff which is far more than I thought she would. She knows all about medicines and that the syringe with the yellow sticker makes her sleepy:) I think that is cute how she is so observant and pays attention to what makes her feel better, tired, or worse.

Last night her eyes were hurting and burning and she was determined that eye drops would not help. Me and her doctor agree because to put eyedrops in Katia's eyes takes a lot of screaming and holding her down and only needs to be done when it is absolutely necessary. Hopefully the steroids working on her skin will help her eyes to feel better. They are quite puffy and irritated looking.

She has actually lost almost all of her eyebrows which is new to us. She has always kept them throughout chemo treatments and radiation but I guess the new marrow wants its own new eyebrows too:)

Katia thinks the rash means the "New Blood" doesn't like her legs and arms (she hasn't seen her face) but I told her that it is in there having to change places with the "Old Blood" and sometimes in the moving around, they bump her skin and cause little dots or itchiness. That explination works for her and works for me too:)

Well, that is about all for now. I am going to try to catch up on some cleaning around here and organize some of her lab reports. She is sleeping. I got up around 9:00 AM after going to sleep around 4:00 AM but that 5 hours was sufficient. I think it hurts me more to get up and down than to just get up and stay up. During the night, I get up about every 30 minutes, at least and that is usually right when I fall asleep. So, I figure coffee can get me through the next few months and when I go home, I will hybernate. Me and Katia can go to my room and just vegitate in bed in front of the TV for a WHOLE week:) Sounds like a plan!

Love, Tracy






February 14, 2004 9:42 PM

Well I have to say today was better. It wasn't great but I will take "better". Katia is still throwing up a lot and her whole body is basically a rash that itches but she had moments of playing for short moments and she was quite nice to her nurse so that shows she is coming back around. When she feels bad, she sends everyone away. Maybe Merrit (the physical therapist) will have better luck this week with playing with Katia.

She did make me a valentine card which the nurses tried ALL week to try to get her to draw in. She did not cooperate so finally they got a small scribble, BUT IT IS THE BEST SCRIBBLE! Sharayah and Tatiana and Myron brought me cards and a great big hug and Myron brought me chocolates:) I love chocolate! I shouldn't have too much but I can't think of any occasion that chocolate isn't welcome to me.

Anyway, all in all we had a nice day and we got to be together. We have Grammie with us still. Myron's dad flew back to Roatan but his Mom stayed a few more weeks which is great! She is always so good with Katia and she is a true blessing to have around:) I love my Mother-in-Law!!!! She is the sweetest person in all the world. She is so giving and such an easy person to talk to and love. I have been very blessed by having her brought into my life. I thought I would share that since it is a valentine day, a day of L-O-V-E.

Well, pray Katia will have a restful night. I am going to jump ahead here and say her fevers have subsided. Last night I had to take that back but I pray tonight it stays true and Katia can get some good sleep and wake up feeling better tomorrow. She is so very precious!!! I asked her if she would be my valentine a few minutes ago and she said, "You are Mommy!" I said, "But you can be my valentine." She said, "I love you, Mommy. Inside my heart." I think she meant with all her heart but hey, I will take "inside" her heart to mean even more:)

Love, Tracy


PS Thank YOU for being my friend:)









February 14, 2004 12:51 PM
Day 9

Okay, I am going to make this really quick because everytime I try to update, I have to walk away and that isn't working so...

Katia is feeling quite a bit worse BUT the good news is her skin looks like GVHD (graft vs host disease) so that would mean she is engrafting:)

Her WBC count came up to 0.12 today from 0.04 yesterday so that seems to say the same thing.

She is an itchy, rashy, coughing, puking, very irritated little baby right now that is not made happy by ANYTHING but the doctor says these are probably the worse days of all of this and she should start to improve soon.

They are starting her on steroids for her skin and hopefully that will make some improvements. Her pain medicine is being turned up more and she is still having to get her platelets once or twice a day. The fevers are maintaining but that could be because of the GVHD.

So, all in all, she is miserable and not resting at all but this is where she is supposed to be.

Sorry for the late update. I really started trying before 10:00 AM but that has been how the morning is going. Busy busy busy.

I will be back later:)

Love, Tracy


PS I think I am going to step out to the bridge for some "release therapy" (scream) again. This is a LOT to handle sometimes but it is all for a very good reason. KATIA!




February 13, 2004 10:30 PM
Well I spoke a bit too soon. The fevers are back at 39.5 which is 103.4 BUT the good thing is Katia took some Tylenol and hasn't thrown it up for 15 minutes which means it will hopefully stay in her and help bring the fever down. She hasn't taken tylenol for quite some time so it is a challenge to get it to stay in her.

Well, pray for her to have a comfortable evening. Tomorrow, Myron is coming with Sharayah and Tatiana and I want Katia to be able to feel good and maybe play a bit with Tatiana. They have a lot of fun together. At least feel good enough for Tatiana to read her a story and Katia not get sick while they are here.

I hate seeing my little baby have to go through all of this and I hate having to tell myself this is what we want to be seeing right now. That is sad that we WANT to see her getting sick but I WANT this transplant to work for Katia.

Love, Tracy







February 13, 2004 8:44 PM

While Ms. Katia is sleeping, I will tell you a funny story from today...

She has been very moody and crying a LOT today. Everything is either all wrong or all wrong...

Well, she was basically throwing everyone out of her room no matter what they were there for and telling me to stop doing this and to do that and on and on.

I told her, "You can't just be nasty to me, I am helping you." She said, "I don't like you anymore." Fine. Then she said I could leave. Well I can deal with that too, brush it off. Then she just started getting really rotten over and over. Well I chuckled about something, I forget what and she hates being laughed at, hates it!! We all have had to deal with the fact we can't laugh in front of her cause she feels it is laughing at her. Well I told her, "I am not laughing at you Katia." She says...,"I AM EMOTIONAL. MOMMY, I AM EMOTIONAL!!!!" Needless to say, she is 4 years old and when she said that, I couldn't help but laugh and that just threw her for a loop!!! She was all peeved at me and wanted me to stop laughing. Finally I was able to suck it up but where is a camcorder when you need one. I mean she just looks so tired and all full of rash and her eyes are dark and then she just had this look on her face like she was talking to a co-worker over a water cooler saying how EMOTIONAL she felt. It was funny:)

While she was asleep, I finally just walked out to the bridge (don't worry, it is glassed in so you can't jump) and I let out this not too loud but full of EMOTION scream! What a day!

It could be worse, I keep telling myself that. It could be a lot worse. I am thankful for Katia's spunk and personality.

On a positive note, her temperature is staying closer to normal, she is not throwing up as much, and she is resting right now. See there are good things happening too:)

People used to say, I should write a book about my life. Well, I do (in a way) and you get to read new chapters in my life each day. Except, in this book, I get to hear back from our readers:) That is such a wonderful thing, more than most of you will ever know! I think the guestbook deserves some type of award for all of its positive vibes, cyber hugs, prayers, poems, inspirational messages, support, and just plain out everyday humor:)

God bless each of you and have a wonderful Valentines Day. Walk up behind your kids and just give them this ridiculous hug that shocks them and don't let go until you are all laughing!

Love, Tracy





February 13, 2004 6:54 PM

Katia is sleeping:)


February 13, 2004 6:15 PM

I am praying and praying for an overdose of patience right now.

Katia is pretty well, 100 percent miserable. She has a rash head to toe (except on the palms of hands and the soles of her feet). We aren't sure yet if it is GVHD (graft vs host disease) or if it viral. We had to do a biopsy which meant cutting out another small circle from Katia's skin. Remember she had this done on her thumb and on her side and now on her upper left arm. She definitely has individual markings to show she is Katia. She has the scar on her left side from the lung surgery, a scar on her right eye from the eye biopsy, etc.

I just pray she has a better night. Now her ear is hurting (itching) so she is just a mess and extremely unhappy and unable to be pleased. She is getting a LOT of use from my "Stress Ball". She wouldn't hear of playing with physical therapy today, she basically told the lady, Merrit (whom she usually adores) to just get out of her room! She doesn't want to do musical therapy or occupational therapy. All she wants to do is freely cry and scratch.

I know these days will be behind us, hopefully sooner than later. I know there are much better days ahead when Katia will once again be full of smiles and happiness. I just hope that day comes soon.

She did get quite a bit of "Happy Mail" today and I just have to say, that was perfect timing!! She got some new DVDs and some stickers (which do occupy her while she sticks them on her puke bucket. Does this sound completely pathetic and miserable? I know it does but this is all part of it and I didn't think we would fly through this without any bad days.

Okay, well my time is up. Katia needs me to rub her leg for her:)

Love, Tracy





February 13, 2004 1:06 PM

I just added the new pics on the page. I wanted to update again since I was in such a rush this morning (late morning). I have to thank the nurses for letting us sleep those 4 hours without interuption:) That


was much much needed!

The picture at the top is Myron's visit last night. Don't they both look happy?

Well, I will be back later:)

Love, Tracy


February 13, 2004 11:09 AM

Long night again:)

I am just getting to this because we actually went to bed around 7AM this morning and are just getting up so we feel somewhat rested after a very long night of throwing up. Her fever is finally coming down with the help of the cooling blanket and time.

She just got done throwing up again but it was 4 hours since the last time, so maybe she is improving?

Well, I have to get myself together here and get some coffee but I just got up, finished with her and updated the page so you aren't worried:)

Love, Tracy







February 12, 2004 11:50 PM

We are almost to day 8 and this is dragging by. Katia's temperature is just going up and up. Right now it is 40.4 which is 104.8 farenheit. We have a cooling blanket on her right now and hopefully that will begin to bring it back down. I am so glad she at least had platelets tonight. I feel better about a fever with a decent platelet count but I am sure she will need more platelets by morning. She gets pheresis platelets which means they come from one donor and not a few pooled together so hopefully she will hold onto them.

Well, she is talking and talking but not really making a whole lot of sense so I know she really does feel bad. She seems to be on so many medicines so hopefully they will kick in and make things happen.

Please pray she will have a restful night and hopefully a much better day tomorrow. I asked the nurse is this normal and she said sadly, it is.

Love, Tracy






February 12, 2004 9:10 PM

Let's see if I can sum this up...
12 hours later and Katia is more miserable. She is still throwing up, playing with fevers, no blood pressure problems (thank you, Jesus) and just sore all over.
We have tried a few different nausea drugs to help the vomitting but the problem is she isn't really vomitting because of her stomach but because of all the mucus in her throat so when she throws up, she is clearing her breathing passages.
She started a new antibiotic for the HSV because that may be adding to the problems with the mucus. We will see if that helps. She has had her pain medicine turned up a few times today and yet she is still squirming in pain or coughing in pain.
Now that I have said all of this, I expected most of it. It does let me know that she just had transplant and her body is doing what we suspected it would, fighting. Just pray the new marrow wins this fight.
Daddy came to visit tonight!!!!!! That was just great. Katia was so happy and told him about all of her puking, actually showed him a few examples first hand. Myron laid down and talked to her and rubbed her chest where her broviac is hurting. He sang to her and I know it just really helped each of them tremendously even though I am sure he is driving home now sulking the same way she is sulking here.
Well, I better close this while I have the chance before I am called into action again.
Thank you for all of your prayers and the wonderful messages in the guestbook. I do read the guestbook a few times each day:)

By the way, I step outside each day to clear my head. I haven't been able to walk over the Ronald McDonald House but I do get outside for a few short minutes. Thank you for your concerns:)







February 12, 2004 9:07 AM
Day 7

Long night...
Very long night...

Katia does not feel well right now at all. She basically spent the night throwing up, playing with a fever, having her blood pressure go up and down, etc.
Around 2AM, her heart rate shot up to around 185-200 bpm and stayed there a bit. We thought she was getting ready to spike a fever but after a while and an attempt to get her to take Tylenol (which she threw up), her heart rate finally started to lower. She did get blood and platelets last night. Her platelets this morning are 31 (she is getting ready to get another platelet transfusion-she is throwing up blood) and her hemoglobin is 15.3 (she is good with that). I just feel so bad for her because I know she would sleep for days, if she could. She just looks tired and sounds tired. She said she doesn't like her new blood. I don't blame her.
She started on GCSF today which is used to bring up her WBC (white blood cell counts) so hopefully that will start coming up and these mouth sores will improve and she will throw up less. She really puts a LOT of strain on her head and throat when she throws up and that is what causes the bleeding.
Let's see, what good can I say? I have to have something good...

Okay, she isn't throwing up right now and she is watching TV and closing her eyes and resting on and off.
Also, I woke up very tired and prayed for energy. I feel energized (I've had coffee but God made the coffee bean).
Things could be going worse so I will not complain about how they are going now because they are going along and we are on day 7 so that is at least 7 days closer to going home:)

Love, Tracy





February 11, 2004 9:57 PM

I found a saying today that I really really like so here goes...

"The secret of happiness is not to do what you like to do, but to learn to like what you have to do." King George V

I remember a long time ago, I would have a quote a day that I liked. But, that one I like for life. It is so true in so many ways. Some people say they just need a little more of this and that and they will just be happy if they have a little more than they have right now. I think we all go through that. The secret is being happy with your life and what you have.

I would have never chosen the life I am living right now. I would never have chosen for my baby to be so sick and in the hospital all of the time. I do choose though to try to face each day as positive as I possibly can and to try to keep Katia's everyday life as happy and upbeat as possible. I think that alone keeps me quite busy and occupied and in her happiness, I am content with the here and now because, well, I have to be. I don't have a choice.

Katia has had a very rough day. She has thrown up more today than all of the rest of her life combined. Poor thing. Right now though, she is watching TV. She is semi-happy and very puffy looking from all of the pressure on her eyes when she throws up. She builds up a lot of pressure which is why we have decided to try to keep her platelet count as high as we can for a while.

Myron did not get to come here tonight. He wants to give it another day so he feels more secure about not getting her sick and she is just not going to be too happy right now no matter what, so we don't want to chance it.

She has slept most of the day and when she is awake, she is throwing up or coughing which makes her miserable.

Well, she needs me so let me sum this up and say, Goodnight. Love, Tracy





February 11, 2004 4:40 PM

Okay, a few things going on but I will start at the top of the page. I have gotten a few emails about pictures? Well, I am going to keep that one up there until Katia is feeling well enough to take another one to post. I, of course, am taking pictures but I don't want to put one up there that doesn't show Katia's true personality, a happy little fighter:)

Secondly, the ECHO has not been read yet, it is about to.

Thirdly, Katia has been throwing up a lot today and while the doctor was just here, Katia decided to have a real "Puke fest" right in front of the doctor and throw up blood too so we have platelets ordered and some Ativan to maybe help with nausea. Most of the puking is coming about because of all the gunky stuff from the mucositis which is just hanging around in her throat. We finally did get a look in her mouth, with a flashlight, and all I can say is, OUCH. I know why she is in so much pain. Hopefully that will go away soon but for the meanwhile, her pain medicine is being raised also.

We are looking for her WBC count to start rising from maybe 0.01, where it is at now, to 0.1 and that MAY be a sign of engraftment of the new marrow beginning.

Katia also has 2 suspicious spots on her leg that we are going to look at. Since she has a history of fungus and the history of her "purple thumb", they don't like to ignore anything suspicious so the MAY biopsy one of them.

Her lungs are sounding very clear and look good. Her liver is "changing" some but not in a way to worry about. It just lets them know to hold off on some medicines.

I think that is about all for now. I will update later.

I get very nervous when I see nurses rush by the room, I always think someone is doing badly. I think we have been here a bit too long and I worry about everyone and how they are doing.

Please pray for all of the people going through this nightmare, both patients and families. It is not something anyone should have to face but I will say, it is less difficult when you know there are prayers backing you up.

The motto for The Katia Solomon Fund is "Sharing Hope on the Wings of a Ladybug". There is hope out there and a lot of love and support. I think everyone needs love and support no matter how "good" a person's life might seem. Everyone has problems and their problems are HUGE because they are THEIRS. I try to tell myself that when I am around a group of people or in a store and someone is rude to me or just bumps into me rushing by (I bruise easy) and I want to get mad. I ask myself, "Why are they so abrupt and rushing?" Maybe something is wrong.

Love, Tracy






February 11, 2004 10:22 AM

Not much has changed. We asked the ECHO not to be done first thing in the morning since Katia isn't a "morning person". So, we are getting ready to call and give them the "greenlight" to do it when they are available today.

Katia was up almost all night coughing and coughing but she didn't want to spit up all the gunk so she could sleep. Like I said, she isn't easy to coax. Finally around 9AM she finally threw most of it up and is now resting. I am on coffee #2.

Hopefully she will have a good and quiet day, not too sick and not too many tests or labs. She does need blood today so she will get a blood transfusion probably closer to the evening time. It is hard to line up all of her medicines because of premedications she gets for some of them. They have to be planned and lined up together so everything runs smoothly and gets close to "on time" as possible.

Did you watch American Idol last night? For the most part, those singers were really good. I can't remember which ones I thought were the best but they were good. Heather wasn't on last night and I didn't see the preview for next week but, "Good luck Heather."

Well, that is about all for now. Myron is feeling better so he will come up here today. Him and Katia both get pretty crabby when one can't see the other so it will be good for both of them. People ask why I don't go home and let Myron spend the nights? Well, we have a system that really works for us. Although it is not a system of choice, since we have to live this, we had to find what works and this is our best bet. I handle being here all the time better than most people would think. Now, if you tried to drag me away from here, I would get no sleep, stop eating, etc. This is my place, right here with Katia. We have found a decent routine that works for us and through quite a bit of coaxing she has come to understand when I do NEED to leave the room, I will come back within a set amount of time. That gives her a lot of security and it gives me the time I need to go clear my head (some days my head needs spring cleaning).

So, not to worry so much about me:) I will be SOOOOOOOO happy on the day we get to go home with a happy and healthy Katia, but until then, I am here with her and Myron is home with Sharayah and Tatiana and he is the All Children's Hospital Taxi service going back and forth with him and the girls:)

Love, Tracy



*****


February 10, 2004 7:37 PM

So, here is the update. Nothing. We will do the ECHO tomorrow. Right now, Katia feels pretty miserable so they are turning up her pain meds more. It was already turned up this morning but her throat is really sore, her broviac is sore, even her finger is sore. So, she is not happy right now. We knew these days would get here where she would be pretty miserable feeling so all I can say is to please pray that Katia will feel much better real real soon. She is still very sweet. She got some vomit on her leg so I cleaned her up good and she just rubbed my arm and looked at me, with her eyes all squinty, and said, "Thank you. I love you." She definitely means that. Katia is so very appreciative anytime I do something for her. She is always telling me thank you and that she loves me. I would do everything even if she said she hated me BUT it makes it easier knowing she sees it is done out of love. That isn't to say she doesn't argue with me. For a four year old, she argues quite well and is not the easiest to coax into things. That, to me, is a strong characteristic for her.

Well, I better sum this up in case she starts up again. Just pray she stays comfy cozy and will be her playful self again soon:)

Love, Tracy







February 10, 2004 4:14 PM

The chest x-ray shows there is no pneumonia but maybe some excess fluid so they are going to give her some lasix to help drain some of that. It does show the heart could be somewhat enlarged so we are now waiting to have an ECHO done. She just finished a breathing treatment which she did not appreciate at all. I don't really think it did much of anything.

Her oxygen is staying right around 95-96 percent and sometimes dropping down in the low 90's. Just pray this is all because of mucus that will clear up. She has pushed a few fevers but they haven't gotten to 101 yet.

I will be back to update:)

Love, Tracy







February 10, 2004 11:00 AM
Day 5

Good morning (late morning).
Sorry for the wait in updating but I was hoping to have some x-ray results which I don't, yet.

Katia is coughing a LOT right now and spitting up quite a bit of "junk" so I am eager to hear what the x-ray is showing. She doesn't even feel good enough to play with her Physical Therapist, Merrit, which is surprising (maybe later today, Merrit). So, please pray she clears up soon, very soon.

Her counts haven't begun to come up. She has a WBC count of 0.03 so that is like nothing. We won't know how her body reacts to this transplant until those WBC start to climb upward.

Myron went to the doctor today so hopefully with some new medicine, he will be able to come visit in the next two days or so. He is pretty upset that he has to stay away but we do whatever is best for Little Ms. Katia.

Well, that is about all for now. I corrected my AOL which seems to have fixed the problem:) :) :)

Love, Tracy

PS I have removed some of the pictures from the site because it is draining the date transfer rate from the Katia Solomon Fund website so I had to ease up. Everytime I go over that amount, they charge extra so I would rather just take off some pictures:)




*******************************



February 9, 2004 8:55 PM

Hello. I am going to make this short. I don't know what is up with either the computer or AOL but I am having to pretty well rush.

First, please pray for a friend of ours. Her name is actually Katja, too. She is having a bone marrow transplant tomorrow, also for AML. She is just a little older than our Katia and was scheduled for the same day (in Minnesota) but she needed her broviac replaced (sound familiar?)

Also, please pray for Katia. She is sounding pretty "junkie" in her chest so they took an x-ray tonight. Not sure of results yet, may not know till morning, but I wanted you to pray that all is clear. You know how much we worry about her lungs.

Well, we are actually watching "Fear Factor" right now and just missing being home watching it as a family. I have called Myron a LOT today since he can't be here.

Love, Tracy

PS I have another prayer request that was sent to me via email shortly ago. I have a link to Cade S. above. He hasn't been doing well and he will be having a CT (CAT scan) of his abdomen, pelvis, and chest tomorrow morning. These tests will be saying a lot. Please pray for them. Cade has fought so very hard.


***************************








February 9, 2004 10:14 AM
Day 4

Hiya:)

I am going to make this quick because AOL is acting up for some reason so I need to go fix the software.

Katia is doing well. She is spitting up a lot of mucus but overall she is feeling good and looking good:) I thank God for that like you wouldn't believe!

Myron is home sick with a cold. He sounds horrible but the worse thing is, he can't visit until he feels better and that is no good for him or us. I figure Katia will spend quite a bit of time on the phone with daddy. This was a hard time of year to get transplant with all the colds that go around. We can't take any chances though.

Well, I hope each of you have a fantastic day and remember to hug your kids and oh yeah, find something funny to laugh about. Laughing is good medicine:) I was watching Frasier the other day and just laughing till I thought I was going to explode. I love Frasier:) Katia does a lot of quarky things that make me laugh and when I laugh, she does them again and again and we just laugh. I enjoy those moments:)

Love, Tracy






February 8, 2004 11:00 PM

I decided to add pics before I updated and it took quite some time so I am finally here. Things here are okay. Katia is pretty happy for the most part. She did sleep a lot today but this evening she is awake and watching movies:) I love that she is happy watching movies.

Well, not much has changed. We are waiting for some counts to come up. When they start coming up we will know more about the Graft vs. Host disease and what it will affect. We want to see some so we know the new marrow is doing its job but we just don't really want a whole lot. I have seen that get very out of hand BUT, Katia will do fine and have just the right amount to show her marrow is doing its job.

Right now she has her head over a bucket coughing up some yucky stuff. As Shrek would say, "Better out than in." That is true with this "gunk".

Well, tomorrow is another day so we better get some rest:)

By the way, Katia ate some more bread today and the kitchen was happy to bring it today! That problem was solved and it was kinda funny even while it was happening. I have found it is better to have a sense of humor in all of this, whenever possible.

Thank you for keeping Katia and our family in your prayers. God bless you. Love, Tracy






February 8, 2004 9:37 AM
Day 3

Good morning:)

First things first, Katia ate 1/2 of the slice of bread:) That is quite a bit for her:)

She is just waking up right now so this will probably be a reasonably short entry (good, huh?)

Our nights have been going okay. There are people in and out of here mainly drawing labs or doing vitals but overall I have to say, things are going much better than I expected. I know this is very early in the transplant, but still, I am grateful:)

Katia had a platelet transfusion yesterday and today, the numbers are the same as they were yesterday 4 so the transfusion disappeared. She is at 34. They probably will wait until tomorrow to do another platelet transfusion. They are at 34. Her hemoglobin is doing well though at 10.3 which is good.

Her immune is zero, totally expected.

I am going to cut this short so I can give her a full head to toe inspection to check for rashes, redness and see how her broviac site looks today. That is concerning because it was so red last night. I just pray the antibiotics will fix that and not let it get too bad.

I'll be back...

Love, Tracy









February 7, 2004 10:25 PM

Good evening:)
Katia is doing well.
Let me tell you about something that was just so insane it was sorta funny, now.

Katia wanted bread. So we call for bread and butter.
They bring toast.
The nurse called back to the kitchen and said she didn't want toast, she wanted bread.
They call back and say she can't have bread.
Why?
Because she is on a low macrobial diet since she had the bone marrow transplant.
Fine, but she has been having bread (a few bites is better than nothing).
They say that in order for her to have bread they would have to open a new loaf...
Okay?
They won't do that.
Now I am involved, her nurse is involved and the other nurses are involved.
After a few phone calls, NO BREAD!
Meanwhile, Katia wants this bread!
She is having other troubles too due to a medicine. She is itching and crying so we WANT the child to be happy.
Finally, they are on the phone AGAIN with the kitchen. It is becoming like a joke. We are like, "Bring her the whole loaf if you have to open a new loaf." Why can't they just open a loaf and leave the rest for patients that can have regular bread?
Okay, so finally even the doctor is questioning the kitchen and after "a discussion", the bread is okay to have.
Duhhh.
Where is the bread? Well, that is not here yet...
We will see how this pans out.

Wait we have bread!!!

Well I will be:)

Love, Tracy

PS Funny though, huh?





February 7, 2004 11:30 AM

Okay, let me try to finish here:)
I also thought I would let you know that Christina has come back in with a fever. I went and saw her and she looks great! I am so glad to see her but so sad it has to be here. Please drop by her site. I am not sure if they have updated yet because they may not have brought their laptop with them in such a rush to get here.

Katia is going to get some platelets today (she is bleeding in her mouth) so that will help boost up her platelet counts. It is 35 right now. The rest of her counts are just low but her hemoglobin is 10.6 so that is good. She just has no immune system and low platelets. All expected.

She is still throwing up but mainly just the junk out of her throat and mouth so it keeps that cleared out. Please just pray that her lungs behave and that the rest of her body will stay healthy while her counts are low.

Oh, her broviac site is pretty red around the incision so they are starting her on another antibiotic to protect that. I know she has lost weight because her diapers are very loose. Her little legs (usually chunky) look pretty fragile right now so hopefully we will be able to start back up her IV nutrition in the next few days. I think I am going to get her weight right now.

I will be back later... This update took a while to actually complete but I got it done:)

Love, Tracy

PS There is a special called, "Katia's Courage" coming on the WB channel (local) at 10:00 PM on February 16th. Also, there was an article of Katia in the February 5th Tampa Tribune that I didn't get a copy of so if you have an extra copy, I would love to have the article to add to her scrap book.
Tomorrow, Myron is going to be performing the "Katia Song" at a concert at the Florida State Fair Grounds. There is an annual event with Univision that he is participating with. I am so proud of Myron for how hard he is working to raise awareness for the Marrow registry. I know it is exausting but I am so proud of him:)







February 7, 2004 10:34AM

Hello:)

I have gotten on here to update a few times and keep getting interupted so I will make this short. All is well here, and Katia is sleeping good.

I will be back:)

Love, Tracy




February 6, 2004 9:20 PM

Hello there:)
Well it has been over 24 hours since the transplant and things are going decently well, better than I expected at least.

Katia is still throwing up but mainly mucus from the mucositus. Not too much through, maybe 5 or 6 times a day. She is so sweet afterwards telling me she loves me and I am so sweet. I just think she is appreciative of the help and she is definitely the child to say she loves us or appreciates us. She is so loving in so many ways.

There have been a few transplants over the last few months and it seems each person is doing well so that is always good to see. We are so happy over the good days Katia has that when a bad day comes along, we just know another good one will soon follow. I just can't wait for that day we go home and Katia is doing really well.

Ms. Katia wants me to watch a movie with her (something we do a lot of!) so I will cut this short right now.

First, as many of you know, we have The Katia Solomon Fund which we have very high hopes of making great strides with. A beautiful T-shirt has been designed advertising the Fund. If you would like one, please Click here to order.

Love, Tracy



February 6, 2004 11:25 AM
Day 1

We had a good night, for the most part. I know it is late so I better make this quick and get it posted. Katia got up a few times in the night coughing and spitting out the mucus from her throat. This is expected and caused by the mucositus and mouth sores. Overall, I am very pleased with how she is doing. She did have a blood transfusion in the night and a lot of labs drawn which I haven't heard back from. Her liver and kidneys are working great. She is losing weight. Yesterday she ate a few small bites of jello. Her IV nutrition will be turned back on around Day 7 so she should be able to gain some weight back on that. The feeding tube? Not sure yet. I am sure she will get it (90 percent sure) but I am not sure when. It depends on her counts since it is a surgery and risk infection. Now what do we want to see happen? Well we want to see that new marrow take over and Katia's counts start to come up. They will drop a little lower before they start to come up. They hadn't bottomed completely out as of yesterday. I will try to post counts with the updates so you can follow along as "her garden grows".

I also need to let you know that Yasmin passed away. She passed away, at home, on February 4th with her family right there. They are just completely heart broken and devastated. I cannot imagine how they feel. Thank you for all of you who prayed for Yasmin.

Well, let me get this posted. I updated some prayer request. Alex Haigler passed away early this morning. He fought so very hard.

Please see the updated prayer request above. Thank you to all of you who email me when one of the Prayer Request entries change and you see I haven't updated. I don't get around the sites as much as I would like. Love, Tracy





February 5, 2004 11:10 PM

Katia is doing well. I am working on adding pictures right now. I will add some also on The Katia Solomon Fund Site over the next hour or so. Those will be pictures of the actual transplant process. I really hope through all of this, a lot of questions get answered on how the transplant actually takes place. We have learned so much!



Love, Tracy



February 5, 2004 8:37 PM

Katia is here watching the Looney Toons with Myron and laughing. She is coughing quite a bit due to mucositis in her mouth and throat but she is doing amazingly well:)

Thank you so much for all of your messages and prayers and just for checking in on Katia throughout the day. The next few weeks will be a lot of ups and downs but we are on our road now that hopefully will lead us home in the next 60 - 90 days or so.

Katia is very happy to have her new blood. When she really woke up not too long ago, we said, "You got your new blood." She looked up at the pump where the blood was hung and saw it was gone. She is happy and I really think she understands she can't just jump up and go to Disney. Her legs look skinnier tonight and her body too so I am anxious to weigh her tonight and see what is going on with her weight. We really need to keep a close eye on her blood counts and body functions over the next month or so a LOT and monitor what goes in and comes out. They will be looking at her Kidney and Liver functions, her heart and her lungs. She really can't even sit up right now but the important thing is that she is awake and happy.

Please pray for one of our nurses, Molly. She is in the hospital and I am not going to go much further into that but she really needs your prayers. She has been a super friend to me and my family since Katia was originally diagnosed and she is feeling really bad.

Love, Tracy





February 5, 2004 4:27 PM

The marrow just reached to her little body! It had to travel through the line from the pump down to her broviac and just moments ago, it went in and said, "Hello, Katia. I am your new marrow. I am going to get you healthy and home."

Love, Tracy





February 5, 2004 4:15 PM

Katia is getting her transplant!!! It just started and should run over about an hour! It is here and she is awake and watching the Looney Toons. Isn't she amazing?

I will be back as it goes on. Love, Tracy





February 5, 2004 10:18 AM

Not yet...
My best guess on time right now, from what I am hearing, is after lunchtime but before late afternoon. There is a process the cord will go through and then be transported here from Moffit Cancer Center, so that has not taken place yet. Katia needs a platelet transfusion this morning. They are down to 14 and her hemoglobin is down to 7.4 but that will be taken care of after the transplant. I am right here with Katia right now. She is doing good and watching TV. Her main problem is her throat is very congested and getting worse. This is from mouth sores and mucus. She gags on it and that makes her very uncomfortable. She has a suctioning tool to stick in her throat to help her but she won't do it and she won't let me. Hopefully she will use it and see that will help her. She has good spirits right now though:)

I will be back;)

Love, Tracy




February 5, 2004 5:20 AM

Day 0



Can you believe today is finally here. This is day # 163 in the hospital. We have waited all this time for this day of transplant and it is finally here. Katia is resting at this time. She went to bed around 11:30 PM last night and has had a peaceful sleep. She has been coughing on and off but has stayed asleep. I look at her right now and I just think, "Wow, she is so peaceful and beautiful and her body is about to get her New Blood finally". Even Katia has waited and waited for this day. Everything has revolved around her getting her "New Blood".

We have learned so much, met so many very very nice and loving people. We have grown as a family in a time where things could have torn us apart. Now we will finally start counting the days following transplant. Days that will get us closer to going home. Days that will get Katia closer to playing and running and just having fun in the backyard. Days that will see us sitting around the table eating dinner together as a family. Days closer to just being a family, all under one roof and saying, "Goodnight" to eachother and "Good Morning". Wow, I can't wait!

I think what I look forward to the absolute most is taking Katia home and seeing her walk from one room to the next. She has just been on such a "lock down" here that I want her to experience that freedom. I want to take her for a walk down the side walk. I want her to be able to walk up to the sliding glass doors and leave her little finger prints all over them!!! I want to see her smiling and so happy to be home.

But, for now we wait. We will wait for her body to recover from all of this, for the new marrow to work its way around in her system and take over. I know this will be a difficult time for her and her body. I can't imagine all that has to actually take place with her blood cells and all her organs. It is a miracle that is about to take place. It is just so much more than I can understand.

"Dear Lord, please take Katia's life in Your hands today and put the new marrow in her body. Help her body to accept this marrow and help her to be healthy and happy. Please protect our little baby from the many things expected in the days ahead. Let Katia's life be a living a miracle for us to witness. Thank you so much for bringing her through so many things over the past. Thank you for bringing her a match so that she can have her transplant. Please hold her hands in Yours and bring her comfort and peace. Please, Lord, protect my sweet baby and heal her body. In Jesus name, Amen."

I plan to be back throughout the day and update the page as we wait and as then after the transplant takes place. Please pray for us, during this day, that we will have peace and that the anxiety will be placed aside. Pray that we will have the energy we need (I am sure adrenaline will take care of that) and pray that everything will run as smoothly as possible.

Love, Tracy



*************


February 4, 2004 7:55 PM

Well I thought I better update while I have the chance. Katia is getting ready to get a type of blood transfusion for her albumin levels. I am not too sure how to explain this but it is just to boost her some. She is in a good mood and playful right now. Myron was here earlier but he is on his way back now with the girls and his parents. Tomorrow, although it is going to be a big day for Katia, is really not going to be a HUGE day of events. It is amazing how something the last around 10-15 minutes and is something like a blood transfusion, makes such a huge impact in Katia's life. It can save her life! I am anxious but at the same time, I find myself in awe right now of all of this. Katia is going into this with good spirits and she seems ready. She knows what tomorrow is and is talking and talking about it. There were some news stories tonight on ABC and CBS if I am correct and tomorrow night NBC will have something that I know of. We met Lance Williams who had a bone marrow transplant a few years back for Leukemia ALL. It was nice to finally meet him and be able to sit and talk with him. He is a reporter with NBC and was doing the story on Katia tonight. That should aire tomorrow.

Whatever I can link to online, I will do so.

I want to thank everyone for their prayers. I am sure my writings the last few days have seemed sporatic and bouncy. My mind is just buzzing right now. I am praying I can get a little bit of sleep tonight and that tomorrow's procedures will go smoothly. I pray Katia will have good spirits and her body will quickly allow the new marrow to take over and do its "trick".

I do plan to update during the day tomorrow. At this time, we have no idea as to what time the Transplant will take place so just keep an eye out here and I will be here updating as the time approaches, how things are going and afterwards. I will really try to post pictures of tomorrow on here as soon as I get a break tomorrow:)

Again, thank you so much. Pray for my sanity! Love, Tracy





February 4, 2004 9:12 AM
Day -1

Well tomorrow is the day. I have a very upset stomach this morning and I guess that is why. I just feel pretty wired.

Katia had an okay night. She didn't go to sleep until about 1:00 AM and of course, she is still asleep.

She woke up this morning for a bit saying she needed to go to the hospital. I told her she was in the hospital and she just went back to sleep. I don't know if she realizes all that is going on.

Well, I have to make this brief. I will update more later. She has a fever this morning but I think it is just related to the chemos she has been getting.

Other than that, I am not sure how her pain and hives are going to be today so just pray she has a better day today than she did yesterday and she can have a good day of rest:)

Love, Tracy





February 3, 2004 9:00 PM

Katia has just finished the chemo regimens for transplant! I am so glad. This has been very hard on her. I am being told the hives may last a few weeks or more and of course the mouth sores too. But, the chemos are done. She is pretty miserable right now but quiet. She is watching TV and just barely has her eyes open.

So, tomorrow is the day of rest. No chemos and as few tests as possible. Hopefully she will sleep well tonight and rest tomorrow so her body is prepared for transplant. My poor baby. I still can't believe sometimes all she is going through. Her little body goes through so much.

Well, I am going to cut this short. She is pretty uncomfortable right now so I want to be able to be with her and not tell her to wait:)

Thank you for all of your prayers. Love, Tracy






February 3, 2004 1:00 PM

I added the entry from Myron that he had in the guestbook:)

I just had a chance to read some of the guestbook. Thank you so much for your prayers. They really do wonders! Katia is resting and watching TV right now. She is just staring at her hands a lot because of some of the medicines she is on. They make her a little "loopy". But that is far better than itching, pain and screaming.

Someone asked about Abby O. getting to already leave the hospital. That is GREAT! The difference is that Abby had a perfect matching donor so things are much different for them. Katia's match is a cord and not a perfect match. Best case scenario is that she will be able to leave the hospital within 60 - 90 days after transplant.

Please pray for Casie. She is having a hard time right now. Her link is in the Prayer Request. I am going to try to start working on her page and updating some for her. She wants to do it on her own but since she can't come to our room and I can't go to hers, it is hard for me to help much unless I just do it. She has been feeling pretty bad.

Yasmin went home on Hospice yesterday. I just pray the communication will be good between them and their Hospice nurse. Language barriers are hard to work with. This is a time where the family really needs to be understood and they need to understand what is going on. Please pray for them and for Yasmin's comfort.

Again, thank you for your prayers for Katia and our whole family. Our family is a very very close family and we not only feel very seperated right now but just a lot of uncertainties with Katia. We are very nervous and anxious and that is hard to deal with. Katia is so precious to ALL of us and ALL of you and we are in this together. Love, Tracy




Hello everyone!
Last night Katia and I played for hours with her little baby doll,her two new punch buggie cars and her froggy game. I love to watch her play. It does my heart so much good to hear her laugh! and believe me, she laughs with all her heart. It is like listening to a beautiful song.

Even throughout all her discomfort, she refuses not to enjoy each second of feeling good. I study her little hands as they fidgit with her playthings, and follow her eyes as they so intensly pay attention to what she is doing... and then her eyes meet mine, and we smile... I love her so much... We also watched American Idol, she gets a chuckle out of some of the acts just like we all do.

My heart melts each day as I watch my baby struggle against the chemotherapy drugs that ravages her little body, but like you I stay focus on better tomorrows, I know God will see us through.
Tracy continues to be the incredible pillar of strenght that keeps all of us strong. God has given her such virtue, and a strenght and a determination that can move heaven and earth... but I know she is tired...hang tough Trace, we are almost there... Please continue to pray for her strenght.
It has not been a good morning for my little princess, she is feeling pretty puny... stay strong my little one, daddy is coming to play with you, ok?

Just a little bit more till transplant, and then we wait... and then... we come home!
Thank you all for standing along side our family. God bless you always... luv, Myron
Myron
Tampa, Fl USA - Tuesday, February 3, 2004 10:05 AM CST



February 3, 2004 12:03 PM

Just another small update (this may be the way they are right now). Katia was just going through a lot of pain which started right after that last entry. She got a big dose of pain meds and they are going to go ahead and put her on a continuous pump from now. She really was just screaming non stop which causes another whole list of problems for her. She is calm and happier now thanks to the pain meds. She is constantly drooling due to mouth sores. She is also very puffy around her hands and she has hives. I know this sounds like a LOT to be going on but it really goes along with the side effects from the meds. Let me cut this short, she is itching a lot from the hives and is about to get some medicine for that. Love, Tracy





February 3, 2004 10:42 AM

Just a quick update. Katia is just waking up. The night was okay, some throwing up but not too bad. She is little puffy and her last EKG this morning was a little abnormal so it needs to be repeated. Her blood pressures are running low so that needs to come up and she is still running fevers so they started her on 2 antibiotics. I am sure over the day she will improve, so I will be back:)

Love, Tracy




February 2, 2004 10:40 PM

Well this evening was going smoothly but that stopped and Katia feels pretty bad right now so this will be short. Main problems today are nausea and pain. Her broviac site is pretty bruised and it hurts but it is working okay. Her other problem are potassium levels dropping low but they gave her a boost. Her EKG came out "not so good" so we had to repeat it after she had the potassium and that seems okay. They had to hold off on a chemo but that is going now, so we are just a little behind schedule. The EKG had me nervous because there seemed to be quite a stall getting the results but they were okay.

Two more days...

I think I am supposed to be really excited and although I am glad to be at this point finally, I can't help but to worry about what is ahead and know we just have quite a bit more time here in the hospital. The longer we are here, the more I worry about things going wrong. I am just having that kind of a day. I pray tomorrow will be better. Tomorrow she will only have the one chemo which runs over 4 hours. And then Wednesday, nothing. Thursday, TRANSPLANT. Well I better cut this short because she is staring at me like she wants me but can't tell me that.

LOve, Tracy





February 2, 2004 9:38 AM
Day -3

Good morning.
Well Katia had a pretty rough nite but it could have been worse. She did sleep quite a bit and is still asleep right now. She is either sleeping or sick so sleeping is better. All that she is going through is to be expected though. We are waiting right now to have an EKG done before they start the chemos today. This has to be done before they plug in her chemo each day to check her heart functions. We have to get through today and tomorrow and then on Wednesday, which is Day -1, there will be no chemo given. On Thursday, transplant, which will be Day 0.

I know we have a rough road ahead of us and I think I am as prepared as I can be. I try to not think ahead to much but just deal with the here and now. I think that is the best way for me to deal with all of this. If I look to far ahead, I get very overwhelmed and I don't need that right now.

Again, Katia has stopped eating but I can definitely see why she won't eat. She has gone from 15.1 kg. to 14.4 kg. (33 pounds to 31 pounds) in the last week. She is getting a lot of fluids right now to keep her from getting dehydrated and help keep the chemos moving through her kidneys so the medicines don't stay there and damage her kidneys. She is moving around a lot so I know she isn't resting to well but she looks really tired. Poor little baby. I never say that to her. I try to just keep things positive and moving along. I think that mentally helps her to face this. If I tell her she should be unhappy and miserable, she will be.

Well, I will try to update throughout the day.

God bless,
Tracy




February 1, 2004 11:26 PM

Hello. Wow, what a day! But, we are okay here. Katia has still be throwing up and gagging on a lot of mucus (I should have warned this would be yucky). She still has the runs and is feeling very puny. She had a temp today of 39.8 (103.6) but that is believed to be caused by the ATG (chemo drug) and Tylenol brought that down in about an hour. Right now, she is sleeping but is real gurgly sounding so she will probably get up in a bit and try to spit up more mucus. Just pray it stays away from her lungs. All in all, things could be a lot worse so I am thankful Katia is okay, just not too comfy cozy like we say.

I am about to add some pictures. The first is this morning (that will be the front page) and the other ones aren't so peppy looking but she is just not feeling well. I share pictures because I share Katia's story and I know so many of you have fallen in love with the little baby WE love so much:)

Someone asked in the guestbook do I plan to keep this page going for years to come. Well, I do plan to keep it going and share all the milestones in Katia's life with each of you. I plan to put pictures of the day we get home, Katia learning to ride a bike, first days of school, reading, writing, dancing, playing, school dances, dating, marriage, grandkids:), just all of it!!! Katia has a purpose in life and I will follow through with this as long as I can and as long as she will allow it. I don't think she will be shy though:)

So, let me go work on getting the pictures up:)

Pray tomorrow goes okay. One of the chemos only have to go today and tomorrow and the other one will continue on an added day. On Wednesday, she will have nothing and then THURSDAY, NEW BLOOD! We are so nervous and anxious and excited. I am tired but I am okay. Anything for Katia:)

Love, Tracy




February 1, 2004 5:36 PM

Well, the tough times have started. Katia has started throwing up, has the runs and the chills. All are side effects from the first chemo of today (they started 2 new ones today). The second is getting ready to get hung now after we get a urine sample. She hates feeling bad - everyone does.

We hate seeing her with the chills and feeling so bad. They are medicating her to see if the chills will go away. She tries so hard to be tough but she needs a lot of love and encouragment. Myron and the girls are here right now. They have been here a few hours and plan to stay for a good while more.

Please just pray for her to feel better. Love, Tracy






February 1, 2004 11:40 AM
Day -4

Good morning. This is turning into a long morning. Katia is doing fine healthwise. She will start 2 new chemos today in just a little bit. She is upset because she wanted a Subway Sandwich and she can't have fastfood anymore. Why? Because, we can't be sure it was made in a sterile environment. This will go on for the next year probably. We will just have to find ways to work around it. She can't have leftover foods or food that has been out for more than 30 minutes due to the fact bacteria can start growing. It is a lot to get used to but we can adapt. I hope she will be able to adapt and not get too upset. She is mad at me right now and has her head covered up under her blanket. That is her way of escaping me and letting me know she is mad at me.

She will be happy again soon, I am sure. I knew these times were coming so I am hopefully ready to face them. Just please pray for me to have the needed patience. It is hard for me to tell her "no" but when I do, I have to stick to it no matter how upset she gets and that hurts my soul. I hate telling her "no" to things she cannot possibly imagine.

Her fluids have been almost doubled today through her IV so she should pee a lot. This will help these new chemos not hurt her kidneys. So we are going through more diapers and wetwipes:) That upsets Katia too because she doesn't like being bothered to change her diaper. I understand completely that she is getting tired of it all but this is a must to save her life.

Yasmin's family is around here and my heart aches for them when I see the sadness on their faces. Yasmin is so important to her whole family and she is very loved and adored by them. I am praying for them and just asking God to do what only He knows and understands. I have explained to God that I don't even know WHAT to specifically pray for.

Love, Tracy




January 31, 2004 9:37 PM

Good Evening. I am updating kinda quickly because Katia's wants me to lay with her and watch TV so...

The day has gone good. She has eaten some animal cookies and noodles and has been drinking water. She hasn't been throwing up at all and has been in a cranky but playful mood.

I am so glad she is doing better than I expected. I expected a lot more throwing up and some mouth sores by now. I think she does have a sore or two in there but she doesn't like me, or anyone, to look so we won't know unless they get a lot worse.

I tell you, prayers do help. By now, I should be going insane from being here so long but I am okay. I know this is just the way things are right now and we want to do everything it takes to get Ms. Katia home and healthy and happy. Is it easy? NO WAY!! I wouldn't ever want to have to go through this again.

Well, Katia wants me so I have to cut this short. She says, "Hello to everyone" and with that I must close. She is getting fussy.

Oh, Yasmin is the same. Her family is here and they have mainly been just in the room today. I wish my Spanish was better so I could go talk to them but I can't. They know I am praying, our whole family is praying. They also know I posted a prayer request on the site. It gives them comfort to know so many people are praying for Yasmin's peace and for their strength.

Love, Tracy


****


January 31, 2004 8:27 AM

Day -5

All is going well this morning. We had a good night. I did have a request at 4:15 AM for a bread and butter sandwich (which she didn't eat) but other than that, it was quiet. She stayed up for a bit from 4 AM - 6 AM.

Well, I have to make this short right now. My dad is here (he leaves tomorrow) so I am going to try to go downstairs and get breakfast and COFFEE while she is sleeping. As I said before, my dad and I like to go out and get coffee and breakfast normally and we haven't had the chance. We had a coffee break at Ronald McDonald House which was nice but rushed so I will try to have the "other half" of that right now:)

Love, Tracy

PS I will check on Yasmin and update later this morning.




January 30, 2004 10:37 PM

Well, this has been a good day, much better than expected. Katia has not been sick and, although she has been cranky, she has been playful and decently happy. We are so so so grateful for this!!!! Tomorrow will be another day of the same chemo. They are expecting her counts to really drop off by tomorrow's labs and they should to show the chemo is working. After tomorrow, she will stop that chemo and then start receiving 2 more at the same time. All of these chemos are at high doses to empty out her marrow and counts. The whole idea is to get all of her counts to zero, give her new marrow and then wait for it to start producing numbers on its own. She will get some meds to bring up the numbers but really those are false numbers until she is off of those medicines. We wait until the new marrow is producing white blood cells, red cells, and platelets on its own. That day will come:)

Let me update you on Yasmin. They have brought her back up from ICU to the floor here. Her family is up here and they have more privacy than in ICU. We had a prayer with them and gave them a small gift from The Katia Solomon Fund to try to help them during this time. I cannot imagine all they have to face. They will be set up with Hospice (which is home health care) and are relying on God to take her peacefully home. They should just be able to take her home to live with her loving family and grow up. It broke my heart tonight to hear them talk about Yasmin but, at the same time, I am glad they told us more about her. Everyone really deserves to be known. Yasmin is one to take care of those around her. She is very loving to her parents and family and very very helpful. They said she would always ask how Katia was doing and followed her stories on the news as we didn't see her for quite some time. We gave them a "Katia's Song" CD and she played it over and over. She really had a very sweet place in her heart for little Katia and Katia has a place in her heart for Yasmin. When I tell Katia that Yasmin is really sick and just doesn't feel good, Katia prays for her. Katia is very good about praying for others if I say they are sad, feel bad or hurt in some way. The other night, Katia had the hiccups and immediately prayed that God would take them "home". I am not sure what she meant by that but I know she wanted them to go away. We said a prayer with Yasmin's Mom and Dad and just let them know if they need translating in anyway or had any questions, please call Myron. I am not much help for translating. There is a radio station here that is going to try to raise some funds for their family as they have a lot coming up soon. Being from Mexico, they want to take Yasmin back there for her final resting place. As I type this, my heart aches and I just don't see how anyone should have to face this for their loved ones but a parent for a child? It just really hurts.


Her mom said her heart is aching.


Well, Katia is sitting here watching me type and I just need to close out and go squeeze her and hug her. She just ordered some bread and butter:)

Love, Tracy



January 30, 2004 9:30 AM
Day -6


Good morning:)
Loooong night...
Well Katia got up about 4:30 AM screaming for me to make her a bread and butter sandwich which I thought she was going to eat whole but she just held it and didn't even lick it. That is okay. Her belly wanted it. Then about 6:00 AM she woke up crying (I am not sure if she had fallen back asleep) but she was crying for cold water so I got that. She did drink some of it. I thought about just getting up and staying up but I decided I would try to get another hour at least of sleep, so about 8:10 AM, she started screaming because her nurse was in the room to plug in her chemo. She just didn't want anybody bothering her and decided the best way to accomplish this was to SCREAM!! I mean, SCREAM! I got up and got her through getting plugged in and, as long as I held her hand, she was okay. She has just been very tempermental and moody which I am sure is because of certain drugs and a complete lack of sleep and freedom. She hasn't gotten off the bed for 2 days, maybe 3 days. She is always plugged in now. She can get down with the pole and walk around but she is afraid of the pole pulling her broviac so she isn't wanting down right now.

So, that was the saga of our night. I am not complaining though. She is a fighter and that has gotten her a long long way.

Last night, Myron went down and talked to the family in ICU. They have taken the little girl, her name is Yasmin, off of everything and are leaving it in God's hands. They don't mind me giving her name and asking your prayers. They are definitely resting on prayers. Yasmin was our roomie back in November 2002 and her and Katia just had a bond. Yasmin and her family do not speak English and Katia and I do not speak Spanish, not much. But, Yasmin and Katia could sure play. Yasmin is about Sharayah's age.
Her mom says that Yasmin has always kept her picture of Katia and prays for Katia and always ask how she is doing. She has wanted to do something to help Katia for a long time. Well, we want to help this family some way. We are going to give them a gift from The Katia Solomon Fund because the dad is out of work and they have just been having to stay right here at the hospital to be close to Yasmin. They are from Mexico and plan to take Yasmin back, when she goes to be with God. I cannot imagine the burdens this family is facing and how their hearts must be feeling. I do know they love their little girl like we love Katia and that tears my heart up. Too many families face this, way too many. So, please pray for Yasmin that she won't be in pain and for her parents. I don't know sometimes what to pray for when others are losing their child. I can't pray for the parents to accept the idea their child will no longer be with them. I can't pray the parents lives will return to normal - impossible. I can't pray they will understand why they have lost their child. All I can pray for is that God will hold their hand and let them feel His presence. I can pray they know the Lord and because of this, they will all be reunited again. I can pray there are people around them that will help them and offer them comfort. I can pray a cure will be found so that nobody else has to face this.

Love, Tracy





January 29, 2004 7:30 PM

Well this time next week, transplant will be behind us by a few hours hopefully:)

Katia has done decent today. She has slept a lot today and had to have a blood transfusion because her hemoglobin dropped from 9.0 to 7.6 so she got blood today.

Other than that, I am pretty happy with the way things have gone. She ate a few cheerios today, the equivalent of maybe 1/2 a bowl with milk and then some dry ones too so that is good compared to what she has been eating, nothing.

Her weight hasn't dropped and she has been off IV nutrition for almost 3 days now. Hopefully she can maintain her weight.

Please continue to pray for us. We have a lot on our minds right now and we are trying to focus on the here and now. I don't like to see Katia feeling bad or unhappy and today she just hasn't been happy. That just breaks my heart and I know there are harder days ahead. She is getting mad with whoever comes in her room and usually she enjoys at least SOME of them. She is pretty irritable, with good reason, but still I like to see her more happy.

She is watching a lot of TV lately and just losing herself in cartoons and shows. I think that really helps to ease her mind. I wish I could read her mind.

Love, Tracy




January 29, 2004 10:00 AM
Day -7


Good morning:)
We had a decently restful night. Katia went to sleep around 1:00 AM and stayed asleep until around 8:00 AM which is very good. She has waken up in a good mood and hopefully she will eat. I think she will actually. I think she likes the feeling of food going to her belly and staying there:)

Please pray for the little girl I had mentioned down in ICU. She was stabalizing a bit and heading for remission but she is doing very bad right now and she just really needs your prayers. Due to privacy issues, I don't put the name on here but God knows who you are praying for:)

Well, Ms. Katia is asking for CHEERIOS! Love, Tracy





January 28, 2004 10:51 PM

Okay, you want to hear something? Katia had another 1/3 bowl of cheerios with milk around 8:30 PM and now she is eating some more. The kitchen was so happy when I called down to ask for more. They don't hear from Katia too much:) She is eating this bowl very slowly because she already had her benedryl for tonight's Ampho dose so she is drowsy but she is trying and the good thing is she is hungry, eating some and not throwing up. That is just super!! It feels great. The nurses are joking that maybe her hunger is a side effect from chemo since Katia usually does the opposite of what is expected. The papers for this chemo says "loss of appetite"?

Well we will see. Hopefully this will last during these days that she isn't getting her IV nutrition and she will hold onto some of her weight. Poor thing, she is really struggling to eat right now like she really wants it.

Well I better cut this short so I am ready if she needs me but I just wanted to share this with you. She hasn't thrown up all afternoon and she is really trying to eat:) Cheerios are healthy too!

Love, Tracy





January 28, 2004 4:40 PM

Katia is doing pretty good. She is throwing up but not too bad and, get this, she ate a bowl of cereal!!!! Can you believe it? I was amazed. She spilled a little but for the most part, she ate:)

She has now had 2 of the 16 doses of chemo. It is every 6 hours at a pretty high dose and then another one starts and then another one. It is a lot but I am hopeful about her not getting too sick.

My biggest concern right now for this chemo is mouth sores. I am just praying she stays away from them because they can go from the mouth all the way down to the rectum which is very very painful! I don't want her in pain at all. Her broviac is still bothering her since it was just replaced but not too bad and at least, it is working well.

I just wanted to update while I had the chance:)

We are doing a lot of cleaning and keeping things wiped down with clorox and having to not bring food in the room. We can adapt to anything. A lot of foods are out for Katia and one is Subway Sandwiches which she actually had 5 bites of yesterday. She likes Subway (when she will eat). She can't have anything from the outside. No soft icecreams, fountain drinks, etc. It isn't like she is too much into food but I can just hear her asking for McDonalds now and the answer would be no. I am trying to find a way to keep her clean now that she is in bed all the time. They have this foam bath which is good so we will see how it works. You don't have to use water or rinse her.

My prayer is that families will no longer have to face this. I pray there will be a cure found. I count my blessings though when I am holding a bucket for her throwing up. I know a lot of families have lost their loved ones over the last year and before. I try to not complain about treatment because we are grateful to have Katia here.

Love, Tracy





January 28, 2004 9:02 AM

Things are going. They started the Busulfan, which is a chemo drug, at 8:45 AM. Pray Katia doesn't get too sick and that she tolerates all of the conditioning treatments okay with minimal side effects. Love, Tracy



January 28, 2004 7:03 AM Day -8

Today is the day we start everything:) So the day -8 at the time will go to day-7, -6, etc. Then on Day 0 will be transplant day and they will start counting up. The first day following transplant is Day 1 and they go up from there. So, today we start with Busulfan. She has had a few Dilantin doses over night but her levels were still low so she will get an extra dose and the dosage will be increased from here out. Hopefully this will prevent seizures during the Busulfan Days which go on today through Saturday, then another medicine gets started.

Katia is awake and watching TV right now. She got up and asked, "Is it morning time yet?" She knows we are getting close to the "New Blood" but she isn't following this idea of a countdown. To her it is just a delay and there is a lot of medicines her broviac needs to take first that will make her feel yucky but the "New Blood" will make her feel better later on.

So, that is the plans for now. I need to go make another cup of coffee (thank you, Karen) and get my energy going and my brain functioning better:)

Love, Tracy





January 27, 2004 11:18 PM

Well I have come to realize that Katia likes to take pictures almost as much as me:) She is very good actually. She holds up her camera (looking pretty unsteady) and snaps the picture. It is polaroid so she gets to take out the picture and wave it around waiting for the image to appear. Everytime there is an image and it appears quite centered and focused:) WOW! She is going through Polaroid film a lot though but it makes her happy and we get to see the world through Katia's eyes for a change.

Katia is sitting here reading me a ladybug book while I type. She isn't the least bit tired and we have an early day tomorrow. The nurse had said first medicine was by mouth but the doctor said it is by IV so that is good. Katia doesn't take medicine by mouth anymore. It just doesn't work and she is too strong to try to force her. Then she just throws it up. It really had me pretty stressed and worried when I was thinking I had to force it down her. But that is all better, it is IV and her Broviac has to drink it:) We love that broviac.

Well, I am working on putting up some birthday pics right now so let me get back to doing that:)

Love, Tracy





January 27, 2004 7:22 PM

I will try to update more later but I just want to give some info.

Everything starts tomorrow at 8:00 AM. She will start with the Busulfan. Today she has had a few treatments of Dilantin to help prevent seizures from the Busulfan. I am getting nervous but I know so many prayers are going up and God is in complete control. This family really does need those prayers. We fully rely on them and we completely have faith in God to take care of our baby.

The cord arrived here yesterday, Katia's birthday, so that is safe and sound and ready.

Myron and the girls are on their way here and hopefully Katia will wake up and we can cut her birthday cake. She is napping right now so she should be in a good mood.

I look around at all of the balloons and the cards and postcards, etc. and I just am so happy that Katia has brought so many people into all of our lives and us into your life. God has a purpose for everything.

Love, Tracy

PS Please pray for Alex (link above in the prayer request). His vent test failed today so he is really in need of prayers for a miracle.





January 27, 2004 12:00 NOON

Hello and I am sorry this is so late. I hope you weren't worried. This morning has just been hectic since everything starts up tomorrow. We woke up and Katia pulled her broviac so that caused a LOT of pain. She had the bandages changed (more pain) and finally a chest x-ray in her room. She is settling down some. The doctor came in and we discussed a lot of the upcoming days. They are very worried for two reasons. Her lungs and her liver. Those are two things that can suddenly act up and we just need to be ready if they do. So of course, I am a bit more stressed right now (I am sure those of you who can read between the lines can tell that) so I am going to keep this reasonably short.

A big discussion was about who could come in here after tomorrow and basically it is down to Myron and the girls. Since the girls are both in public school, this also raises a LOT of concern because it is cold and flu season. Just so many things we really have to watch out for and be concerned about on top of having to be concerned just for the transplant (which is huge).

We need to be able to go through this transplant with a clear mind (as clear as possible) and be able to focus on what is going on here. I am trying to get organized so my mind can be more clear the next few weeks. I just pray right now that a cure can be found and that other parents will not have to face this kind of situation in their lives. There are just so many decisions and worries and then a LOT of unknowns. Every case is individual so we have to plan for what MAY happen because we don't know what WILL happen. I am just praying Katia goes through this and does it with her normal attitude and zest!

I am praying she will surprise all of us pleasantly and go through this with a lot more ease than problems. Please pray for this. She is so tough but I can tell that she doesn't want to HAVE to be tough anymore. She just wants to be able to relax and play and not be bothered so much. She just wants to have fun and I just want to tell her, go for it, baby:)

Love, Tracy




January 26, 2004 10:25 PM

What a busy busy day but a good day. Katia's surgery is behind her and she has a brand new broviac that seems to be working very well so far:) She was bleeding around it but they gave her more platelets (so she had 10 units of platelets today) and the bleeding has stopped. It was causing pain but the pain meds are taking care of that. She didn't eat today but she did lick the icing on the cupcake and drink some water. I really didn't expect much more.

One more day before we start the conditioning. That does have me nervous but we will enjoy tomorrow. We didn't get to cut her cake today or blow out her candle because she was too tired and fell asleep. She is loving all of her balloons and tomorrow will be the beginning of another day of fun. She still has some mail to open that came in late today.

I just have to say thank you to each of you for your cards, postcards, presents, prayers, everything!!! You really made Katia's 4th birthday a very very special day for our little ladybug:) When I read the guestbook, I just get a huge smile at some of the entries and I am so touched by others. The guestbook is so full of love and I can just really see how deeply Katia's life has affected so many people. All of this is a very very positive way. That is why I always say, Katia has some major purpose ahead of her. Maybe she will be a mentor for someone or a motivational speaker. Maybe she will be the president or something. Who knows? But there is something big ahead of her. Or, maybe she will be a fabulous Mommy!!!!

All I know is the last 4 years have just been glorious with her and I am thankful that God chose us to send her to and allow us to be the ones to raise her. We are so so so lucky!!

Well, I am tired. I have been up since 5:00 this morning and I don't want to start babbling and not making sense so I am going to close. She will be on the news tonight. She was already on the WB CHANNEL local here and I didn't realize that. She will also be on CBS and ABC's local news tonight. Thank you to each of you that are following Katia's story. I know a lot of people that have seen different coverages and have either registered as a marrow donor, donated blood or platelets, or decided to donate their newborn's cord. I get a lot of emails each day because of different newscast or newspaper articles and I am always happy to try to answer whatever I can or at least send someone in the right direction. Each person that registers gives more chances to save lives and EVERY life is worth saving:)

Love, Tracy













****


HAPPY 4TH BIRTHDAY KATIA !!!!!!!




January 26, 2004 3:43 PM

Katia is out of surgery. It lasted about an hour this morning. I have to make this quick because it is BIRTHDAY TIME!!! She is very happy and playing. She is needing more platelets because the new broviac site is bleeding and her platelet count is still low.

She feels okay though. She has a polaroid camera and she is taking all of our pictures for a change!!! (Thankyou Pete and Joe).

Daddy just went to go pick up Sharayah and Tatiana so they can come have cake here and she has about 30 balloons!

All in all, she is having a fantastic day.

Thank you for all the presents from each of you. Katia is having a spectacular day full of love from all over the world!!

Love, Tracy

*************************


January 26, 2004 Message from Daddy and Grammie and Papa:)

What a Wonderful day we celebrate today!
Happy, Happy, birthday my baby! The day you were born God again gave to me and your mom, a pure gift of love. He opened up the skies and send a little piece of heaven just for me. I love you more that anything I could ever say in this message, or anything I could ever put in words... and I know you know that...
Baby, you know that you have your daddy wrapped tight around your pretty little finger and I would not have it any other way!
I am so sorry you woke up feeling nauseous... but I promise as soon as you get back from your broviach replacement we begin the celebration!
Katia, you are everything to daddy... Sharayah and Tatiana stand right next to you. Mommy, thank you for the wonderful gift of fatherhood. You are such a special role model in the life of our girls, and it is my prayer that they turn out just like you.
Our family is so blessed to have friends like all of you who daily pray and follow Katia's story. I am always overwhelmed by the outpouring of love we receive from you... your words, and your acts of kindness are felt deep in our hearts.
Katia, I know that you are exited to blow out the candles today, again it will be our wish to celebrate wonderful days ahead, with you and mommy back home, and a lifetime full of wonderful memories together with our family, and our friends.
I love you Lady Bug! see ya in a few.... Love Daddy


******************


Katia,


Just a Happy Birthday!

But with it goes, Feelins much warmer than anyone knows...
Feelings that are heartfelt, and especially true...
Because they are intended, only for you.

Katia, Grammie and Papa love you.
We are so very proud to be "Katia's" Grandparents.

We thank God everyday for you...

WE LOVE YOU!, WE LOVE YOU!, WE LOVE YOU!

Happy, Happy, Happy Birthday!

Our special prayer request to God for you, is that He will give you a new lease on life today, your 4th birthday.

May God's riches blessings be upon you today, and for many,many,many years ahead.

Love you so much, always, your Grammy and Papa.

Prov. 3:5,6.
Trust in the Lord with all thine heart, and lean not unto thine own understanding.
In all thine ways, acknowledge Him, and He shall direct thy paths.

Grammie and Papa

***********************


January 26, 2004 6:50 AM

Good morning! HAPPY BIRTHDAY KATIA!!!!!!
Wow the day is finally here. She is still asleep but she got up a few times in the night. She got packed with platelets today for surgery and we are scheduled to go to surgery around 9AM so pray that all goes well with Katia and her chest won't be too painful. Also pray this broviac does well and doesn't give us problems:)

I haven't had any coffee yet so excuse any typos. I will try to keep today updated as good as I can. I am going to try to add some pics this morning if I can finish getting them shrunk down. I tried last night but they kept bogging down so keep an eye out:)

Love, Tracy


***************************




January 25, 2004 9:41 PM

Hello and good evening.
Katia has had a busy day. She did open some more presents today and I have to say that today was a "Dora Day". She got Dora Sheets, a Dora nightgown and she got a Dora DVD. I love this age because there are so many fun things to keep her entertained. She has a bit of a runny nose and that is bothering her so she got benedryl and is going to sleep. I keep whispering to her she is almost 4. Someone asked me what time she was born. Well, I am not sure of the exact time, I would have to look that up in her book and since I am not home...
But, she was born in the early afternoon.
Let me tell you about that day. The pregnancy with Katia was not completely typical. She was a "surprise" first of all and our whole family was excited. Sharyah and Tatiana were looking forward to having a baby in the house as were Myron and I. She was very active in my belly and she would respond to Myron's voice or my voice suddenly. We could tap my belly and she would move around. Myron could play the piano and she would go to sleep. I slept a lot through her pregnancy. I was SO tired. I bled through a lot of her pregnancy so we had a LOT of ultrasounds so we had quite a few opportunities to visit. We found out when I was about 6 months pregnant she was a girl and we were all thrilled.

Myron took me to EVERY doctor's appointment EXCEPT the day she was born. I had gone to the doctor and the bleeding picked up. My other two pregnancies had very quick "labors" and deliveries. I never had long labors or too much pains. When I came out in the lobby at the doctor's office, the doctor and nurses were just looking at me. The doctor told me to go ahead and call Myron cause she wanted to send me across the street to the hospital. She didn't want me to go home and all the sudden be ready to deliver. So, we went to the hospital (a friend had brought me).

So, I called Myron and he was there quite quickly. About 2 hours later, I delivered with not a whole lot of fuss. That was the first time I had an epideral and I thought it was pretty neat that I couldn't feel my legs.

Katia came out with the cord around her neck so she was blue. She was okay though. She weighed 8 lbs. 2 ozs. She was so cute even though she was blue. She kept looking at Myron and I like, "Oh you are the voices". Sharayah and Tatiana saw her when she was just a few minutes old and they just all fell in love. Katia has been a breath of love since she first came into this world and she has always kept us all smiling and happy. There is a never a dull moment with Katia. She is full of hugs and kisses and cute little smirks. She is always eager to sit down and look at a book or play with her toys. She likes to play outside and she loves to be "Mommy's helper". She is so eager to please. She is so easy to accomodate and make happy:)

If she gets hurt or mad, she is quick to forgive.

God sent us an angel when he brought Katia into our world.

We love you sweetie:)

*********

Katia really does handle her illness and hospitalization like a superstar. She has her moments that she gets mad and angry and sick of being bothered but the other 95 percent of the time she is happy and easy to entertain. She is forgiving and compromising. She is adaptable and eager to do what she has to do. She knows things will be unpleasant at times but she faces it like, "Let's just get it done." She is definitely not a pushover. She speaks her mind in the best way she can when something is bothering her but if we say she HAS to do something, then she does. She does not like being alone and loves to play when she feels good. She knows all about her new blood and what it means. She knows she will get sick feeling but she also knows that she can't go home if she doesn't get it and she can't be a "big girl" if she doesn't get it. She knows she HAS to have it.

Katia never seems to be one to have self-pity. She seems completely the opposite actually. She doesn't want to be treated differently or made to take it easy. She just wants to be herself. She WANTS to be happy and she makes happiness possible however she has to.

Katia is just such a jewel and a pleasure to be around.

Thank you for being a part of her life and her journey through all her treatments and now the journey through transplant:) God bless. Love, Tracy





January 25, 2004 10:40 AM

Tomorrow is the day! Katia turns 4. That is such a big thing in so many ways as I am sure you each know:)

Donna (my sister), thank you so much for the wonderful post. Yes, LOVE does hurt sometimes and I know it is so hard to have so many things going on and feeling like you are pulled in so many directions. Keep up the good work of raising awareness and working toward the nursing profession:)

I will post some pics of my dad and Myron's parents as soon as possible. We will take a lot of pictures I am sure so something will get posted:) I am glad they are all here right now. We have some rough roads ahead so it is nice to be able to spend a little down time with our parents. Plus, they get to be with Katia and that little smile of Katia's is contagious so she keeps each of us smiling and light hearted.

The surgeon came in this morning to confirm the broviac surgery tomorrow and all of the plans ahead so that was reassuring.

Katia was up most of the night throwing up. Poor little baby. She wanted to sleep but she kept waking up and throwing up. That happens with that medicine she had last night though. All the anti-nausea drugs do nothing with this med.

Well, I will be back to update in a bit:)

Love, Tracy





January 24, 2004 9:30 PM

Hello and good evening.

Myron's parents are here so Grammie and Papa just left the hospital to go home. They had a long day and are very tired but they had to come see Katia:)

We have a date! February 5th Katia will have her transplant. I told Myron I will be more comfortable that this date will be for real when we start the conditioning treatments this coming Wednesday.

Schedule right now:

Monday, January 26
New broviac put in

Wednesday, January 28
Start Conditioning (Day -8)

Thursday, February 5 (Day 0)
Transplant

So that is what we have. I am a lot more anxious right now then nervous. Katia usually does a lot better than we expect and there are like a million drillion prayers going up for her, so I really feel she will do great! I know she will have her bad days and then her worst days but I feel in my heart she will pull through and be home and playing this summer:)

Now, I must ask your prayers for a little girl here. She has relapsed Leukemia (doesn't have a website) and they are just not being able to get her into remission. She is the one that had the "Code Blue" the other night. She is still in ICU and her parents do not speak English. I was talking (the best I can) with her Mom tonight and she said the doctors have done all they can do and now it lies totally in God's hands. They are very faithful people so I am asking for your prayers for the little girl in ICU.

Katia is asleep. She had the Pentamindine treatment tonight which she only gets every 14 days and it causes her to be nauseated and her head gets very fuzzy feeling. She also starts back on that medicine she was on for so long for the fungus. They want her on that throughout transplant so they are starting again tonight. It CAN cause a lot of problems but somehow Katia does quite well. It is known to cause the blood pressure to go really high but Katia's drops lower (too low for some people but Katia handles it okay). We always try to give her both of these medicines when she is asleep so we have a long night now because they have to be given 6 hours apart.

Okay, I think I have thrown enough information and prayer request your way. I hope I don't confuse you too much. I am going to eat dinner and try to take it easy now.


Love, Tracy




January 24, 2004 10:05 AM

Well 2 more days till the ladybug's birthday:)
I think I am happier than she is!

Katia is here trying to be a scary monster but she is just being cute! She ask, "Are you scared?" I told her, "So scared I need a hug." She said, "You don't HUG monsters!"

I love it that she can talk more now. She is very funny a lot of the time. She tries to REALLY communicate what she is thinking but that is still kind of hit and miss as to whether I understand the point she is trying to make and if I don't she gets really upset with me. The psychologist says that on some of the tests, Katia did really really well and on some, she didn't do good at all. She figures it is because Katia has not been able to participate with kids her age much and also the things she is surrounded by being in the hospital so much. In a lot of ways she is a lot more like someone turning three instead of four. But then in other ways she is so much more like a 6 year old. I just wish she could be a typical 4 year old but instead she is a VERY SPECIAL FOUR YEAR OLD:) She should write her own tests!

Her incision from the lung surgery is healing very nicely and the hole where the chest tube was is trying to close up but still has some healing to do. The surgery she will have on Monday will add 3 new sites to heal. One from where they pull out the old broviac, one where the new one is inserted and then there is also another insertion point for them to go in to place the broviac in her main artery. Katia usually does okay with this surgery and her broviac site heals up nicely and quickly.

Well, we have a meeting today with the docs so I need to sit down and write a couple of questions down that I keep forgetting to ask.

She wants to open a few more presents today so of course, I said yes! I want her to be able to play with things while she feels good. I am praying Katia will feel much better than expected throughout all of conditioning and transplant. I think she will really shock us. She likes to do that!

Love, Tracy





January 23, 2004 6:15 PM

First, I have to say THANK YOU to everyone who has sent Katia birthday presents. She is so happy:)
She has opened a few already and she is just so happy and chipper. It makes my heart sing. I am letting her open a few each day.

Okay:) Here is the schedule of plans and these are 97ure so that is pretty good.

Monday: Broviac

Wednesday: Start conditioning

That is all I know for sure right now but hey, that is more than I knew yesterday for sure.

Katia wants to say hello so she is waving at the computer! Cute, huh? So, "HELLO FROM MS. KATIA".

Well, her Grammie and Papa are traveling tomorrow so pray they have a good and safe trip. My dad is still here and plans to leave back to Honduras February 1st. I just spent a few hours today with him and actually sat down and had coffee with him. That is a big thing for us. We usually like to take a trip to the mall, sit and have coffee and talk but lately that has not been possible so... we went to the Ronald McDonald House and sat and had coffee:)

I am going to put up new pictures but I have to upload them and shrink them down for the page so check back in a bit:)

Someone asked about the eyebrows and eyelashes falling out. Some people do lose theirs but Katia hasn't. During all of her treatments, her eyelashes and eyebrows have stayed:)



Love, Tracy

PS This is an add on. I got an email about the front picture. The pooh Katia is holding is actually a Water Baby with a Pooh outfit. The outfit is able to come off and get washed like her clothes have to be washed. The rest of the baby is vinyl and able to be wiped off with the LPH cleaning solution. Katia's stuffed animals are at home awaiting her homecoming and she eagerly waits to have them again.

I have to say, I really appreciate how so much detail is read into this page. Sometimes people will notice a card or picture in the background they sent or I even had someone email me one time asking me if Katia was missing an earring. I looked and she was!!! It had fallen under the bed:)

Love, Tracy








January 23, 2004 9:30 AM

Good morning:)

Today is another day and Ms. Katia is up and playing and of course watching Barney right now on TV. She has been a chatter box today so hopefully she will stay in a better mood:)

Last night was very stressful but hopefully today the little girl is doing better. I am going to go check in a little bit before I head over to the Ronald McDonald House. Katia and I prayed for her last night when everything was going on. I am trying to teach Katia to pray when she gets scared or when she is happy or unhappy. She says such nice prayers. The name Katia means "pure" and she certainly lives up to that:)

Well, I shall be back later. I think today I will breathe in a lot of extra fresh air when I walk over there. Thank you for all of your prayers. Love, Tracy







January 22, 2004 11:20 PM

Please pray for a young girl and her family up here. There was a code blue tonight and it is just not good. She was taken to ICU. There is a real issue sometimes with people to translate for families that do not speak English and it causes a lot of misunderstandings. I know the Mom was very scared she had lost her daughter but I picked up the phone and called Myron and he talked to the Mom. She is scared but she understands more than she did and the little girl really needs prayers. She is so sweet.

People always ask how I am doing? Well, I think in the given situation I am doing better than expected but I get very frazzled and upset a lot. A lot of stress goes on up here on 2 Southwest. There are a lot of families living horrible situations that none of us planned to live. There are a lot of scares and at the same time there are joys sometimes that we can all share in. In a lot of ways, we stay to ourselves taking care of our children but then we all know the similarities we share in our lives and it causes a bonding that I can't describe. Right now we have been up here the longest so that is wearing on me. That is to be expected. This room seems very small to me sometimes. Myron and the girls come and that keeps things as normal as possible but it is far from OUR NORMAL. I miss all of us being home and cooking dinner, eating, cleaning house, yard work. Heck, I miss cleaning toilets! I am so lucky that I can be here with Katia and give her my time and care. I am lucky that Myron is able to take care of Sharayah and Tatiana and the house. It is very hard with him not being at work but right now, this is what our family has to do and we are doing it.

With all that goes on sometimes, I get pretty tensed and get headaches but then I just look at Katia and I know God gave me this "job in life" because he knows I can get through this. I just tell myself that a lot! God will help me get through each day, and He does. He gets all of us through each day. He definitely answers all of your prayers and that is why I ask for them.

Thank you for always being concerned about MY well-being too. I do walk each day and I do get fresh air. I do pick that little yellow flower almost everyday. I do a lot of praying for needs and for thanks. I pray for the others up here and the many people that are sick out there that I know nothing about. I do tell God thank you for bringing our family the friends He has given us through this website and through Katia's story being shared.

Thank you.


Love, Tracy




January 22, 2004 7:10 PM

Well, here is the update as I know it, for now.

Katia won't get her broviac until Monday so the earliest she will start her conditioning now will be Wednesday the 28th PROBABLY. Nothing is for sure yet until that broviac is placed and we have the okay. So, the earliest transplant date would be the 6th of February. So, for that reason I am not going to say anything definite. I am going to probably just come on and say the day she starts the conditioning instead of when she is GOING to start but the reason I keep this updated is to let everyone "in the life of" a transplant and there is definitely a roller coaster involved and not a lot of things "for sure".

Katia is okay. She is still pretty cranky and her lips are really bothering her. We think they are probably feeling very tingly which can happen due to all the chemo and radiation she has had so they MAY start her on some medicine like Neurontin for that but we have to see if that will mess up any plans for the conditioning drugs. There are a lot of things now we have to look ahead to and find out if it is even worth treating a problem or just try to get by without treating it.

Another thing we talked about for Katia would be putting her on a feeding tube (through her stomach) following transplant. The TPN and Lipids she has been on so long can be very hard on her liver and after transplant her liver is going to need some relaxation for everything it will be having to go through. We will have to figure that out depending on her liver functions and also whether she will eat or not.

We have a meeting tomorrow to discuss a lot of this before we actually have to face it just to let us know what may or may not need to happen.

We also got back some labs for CMV and she is positive for the antigen so we will have to regularly test this right after transplant to see if it flares up or not. That just came back tonight.

She is still going down on her platelets and hemoglobin and there is a question as to why but the bone marrow transplant should solve that issue if it does its job.

The doctor has told us before and told me again tonight that she has a lot of concerns about this transplant. There has just been so many problems and concerns to happen over the last 5 months so it is extremely risky. I think Katia is going to really surprise us. I know she will have bad and very bad days but I really think she is going to pull through like, "I told you I could do this."

Just pray that things will smooth out and she will get her broviac in and move forward with this transplant. We really need to move forward. The waiting is just getting really really hard on us and Katia. I have been getting really stressed out lately because we have been gone from home for just under 5 months and we haven't even started transplant. I asked the doctor what is the best case scenario if everything went just perfect, when would we be going home and it would be April if all was perfect.

I just want to start moving ahead....


Love, Tracy





January 22, 2004 10:11 AM

Good morning:)

Just want to jump on here and update. Hopefully I will be back with some concrete news today but right now the estimated date for transplant is February 4th. That is saying we are able to get Katia's broviac put in tomorrow and all goes well. So, we are waiting for the final say. If all that is so, then she would start conditioning on Monday, the 26th of January which of course is her birthday. We are planning to celebrate her birthday as much as we can anyway so we will probably celebrate on Sunday AND Monday! She will get two birthdays:) Nothing wrong with that. I mean, how many times do you turn 4? Well for Katia, I guess the answer would be two times!

Her night went well. She is still being pretty cranky and I hope nothing is wrong. I think she is just worn out of being here. Today is day #149 so I am sure that has something to do with it all.

Her platelets and all are still dropping and we don't know why. She had a transfusion on the 19th and will probably need one again tomorrow. Her platelets are dropping about 20 - 30 a day and her hemoglobin is going down but not that fast. They think her marrow is just getting lazy.

Well, that is about all for now:) I will be back. Love, Tracy



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January 21, 2004 9:40 PM

Well today has been a pretty cranky day with Katia but we also had a nice tea party, me and her. So all was not cranky. She just really didn't want to be bothered today at all.

She did have her psychological evaluation today and from what I understand, she did good and was very willing to cooperate with the instructor.

I am going to cut this short because really we are just kinda sitting and waiting for more news:)

Love, Tracy





January 21, 2004 9:45 AM

Good morning:)
We had a restful night and Katia is up and playing on her bed right now. She isn't too talkative today and she is supposed to have her psychological evaluation today, again. On Monday she wasn't talkative so they said they would try on Wednesday. This is getting anywhere with Katia. She must know when they are coming by. The lady is very nice and brings toys but for some reason she keeps catching Katia on a "bad day". We will see. Pray she becomes a chatterbox like she normally is and will do what she is asked. I want them to see how smart she really is!

They do this so they can set up "start markers" of her brain and abilities before transplant and then they have something to compare to when they evaluate the effects of transplant later.

A few people have asked about the "conditioning for transplant" and what that is all about. It is a lot of different drugs (like chemos) that are used to wipe out Katia's own marrow and what is left of her immune system. They fight everything off so there is nothing left to go against the new marrow and that way her body should allow the new marrow to come in and engraft. I think that is a pretty overall answer. I will explain more as we actually get into it on a day to day basis. It will definitely get Katia very sick and probably very weak. We won't know until we start.

There seems to be so much stuff going on right now and we stay so busy but we are trying to get a lot of things behind us before the actually transplant. I will be glad when Myron's parents come in because I really want them to spend some time with Katia. She is all excited about seeing them:)

Well, that is all for now. I will be back later with any news that I may find out.

Oh, if you watched American Idol, Heather (the backup singer on the "Katia Song") was on in the Atlanta tryouts and she made it to the next round! GO HEATHER! She is the one with the long blond hair.

Love, Tracy






January 20, 2004 10:10 PM

Good evening:)
Well, I have no concrete news other than we did sign the papers. The surgeon is out of town until tomorrow night so we need his okay and also he will be the one to put in the new broviac.

Tonight we had Adrian Hernandez (from the New York Yankees) and his wife Yaquelin, stop by for a visit. He was at the drive yesterday with Myron signing photos for those who came by to register or donate blood. Thank you Adrian and Yaquelin:)

Katia had a very busy day so she fell asleep early on after she did play for a while. She had a good day. She even played a trick on her nurse today. The nurse came in and Katia had gotten off her bed and was hiding on the side of the bed. Katia got a big kick out of it but the nurse about had a heart attack! She thought Katia fell off:) Sorry, Sarah.

Well, that is about all for now. Have a good evening. I am about to add pics from today. Love, Tracy





January 20, 2004 10:25 AM

Good morning:) Ms. Katia is sitting here actually singing to me as I type so I have nice live entertainment right now.

We have a meeting today to sign the papers for the cord blood to be delivered so I am sure we will know a lot more by this afternoon. Katia remains doing very well. Her incision is healing up nicely. I still haven't heard from the surgeon though as to whether or not he is okay with us moving ahead. He is due to come by here some time this morning. Please keep all of this in your prayers that things will smoothly move forward so we can begin the conditioning for transplant and that the conditioning will go well and Katia will respond good and not face to many awful side effects. I know we are expecting vomitting and diareah but I pray her blood pressure and heart remains stable. She will have a few EKGs done to test her heart during the conditioning and some urine exams to keep up with the levels of the drugs effect on her kidneys. It is a lot and more than I actually understand right now but I am sure we will be learning a lot over the next few days of what to expect and what will be going on. The plan right now is to replace her broviac this coming Thursday. Hopefully with the broviac being replaced, we can get it in there in a way that she won't be so bothered with the medicines that go through it. Right now, she "taste" a lot of the medicines that go through each day. Her last broviac, she didn't taste everything. They say it is due to the placement in the artery.

So, of course I will be back later today to update more:) She has such a pretty little voice!

Oh, the picture at the top is from the blood / marrow drives that went on yesterday. As you know part of The Katia Solomon Fund's direction is to keep active Marrow Drives going on. There were a lot of drives going on yesterday but Myron was located mainly at one location and it was very nice to see people coming out to the drives.



Love, Tracy






January 19, 2004 11:22 PM


Good night:)
Katia just went to sleep so I think I am going to try to do the same thing. She actually ate 4 pretzels tonight:)

No date set yet. We have to sign some papers tomorrow and have our meeting again with the transplant coordinator so I am sure we will get some date by then so I will post AS SOON AS I KNOW:)

Good night, sleep tight and don't let the ladybugs bite:)

Love, Tracy





January 19, 2004 4:09 PM

Katia has a bunch of platelets now! She slept a long time this morning and then had a really big mess with a diaper but she is all good now. She has some new Wiggles sheets and some pretty new pillow cases on her bed with flowers and butterflies so she is all happy now! I guess that will be a good way to decorate without the stuffed animals. Sheets are easy enough to wash and they definitely make things colorful:)

We MAY have our transplant date by this afternoon. We are waiting for the surgeon to okay the lung surgery and say she is okay enough to move ahead. She needs to get a new broviac in so that will probably be done middle of the week. We do plan to celebrate her birthday on Sunday AND Monday (yeh, she gets two days). I really hope she will eat SOMETHING because they are going to have to take her off of her nutrition bags for a few days during the conditioning for transplant and I know she will lose weight fast. In two days she lost quite a bit of weight one time, like 3 1/2 pounds. For someone her size, that is a lot.

I don't expect her to have an appetite though with all she has coming up. She hasn't even wanted to eat recently so now that will just get worse. I just pray she won't get too frail.

I am so nervous with the transplant but then I am also so full of HOPE! I know God is going to bring Katia through this but that doesn't mean there won't be rough, very rough, days to get through. Katia is so eager to get her "new blood" that I know she is in the fighting spirit to pull through the hard times.

Well, I will be back:)

Love, Tracy


January 19, 2004 10:22 AM

Good morning:) I am past the slump I was in and that has to be due to prayers:) Thank you!

Today there are a LOT of drives going on around the Tampa Bay area so if you are out and about, you can stop in and either register as a marrow donor or donate lifesaving blood and platelets. WE ARE ABOUT TO USE SOME PLATELETS FOR MISS KATIA. SHE WAS DOWN TO 15 TODAY! She is not allowed to bump a thing right now so she is resting in bed and watching TV. These days she is plugged in 20 hours each day to her nutrition bags so she will gain some weight prior to transplant so she doesn't have much running around time anyway. She has been watching a LOT of TV and playing with her toys on her bed. This 20 hours will become 24 hours over the next few days as she gets closer to transplant and then once she starts the conditioning and has transplant she will remained plugged in around the clock. She hates that but she knows that is just part of it all.

When I went downstairs today for breakfast, Katia started screaming for me so when I came back there were a few of her nurses in here and she was just eating up their attention. It is a good thing she has become so close to her nurses. They are her buddies here. The nurses and doctors at this hospital are fantastic with her! Everyone that basically comes in this room. The cleaning staff, people that stock the room, check equipment, just everyone is fantastic. I am definitely glad we feel so confident and comfortable her at this hospital. That certainly helps.

One more week till Katia turns 4!! I am working on her saying the right age. She still tells people she is 2!

Oh, this coming Saturday, Myron's parents are coming in so Katia will be able to see her Grammie and Papa. My dad is about to leave in 2 weeks. It is nice Katia is able to spend some time with her grandparents since they all live far from here.

Well, I will be back, hopefully with news of a transplant date! I really hope we find something out today of when we will start conditioning.

Have a safe day and enjoy the holiday if you are off from school/work.

Love, Tracy





January 18, 2004 7:25 PM

Good evening. Yes, you guessed. Katia is taking her evening nap. I think that is why she wakes up so much in the night but I don't want to not let her sleep when she wants to sleep so we just deal with watching Barney or something at 2:00 AM

Today has seemed like a long day. I think this is beginning to sink in that so much time has already passed and yet so much more to come. Myron and the kids miss us so much around the house and we miss so much being around the house. It is nice they can come here to visit and play but then they have to go home. Sharayah and Tatiana have always come home from school to me being home and now I am not. Myron always came home from work to me meeting him in the driveway or at the front door. Now, his days are spent trying to raise awareness and I am not there to help or even home when he comes home. My house doesn't get that smell of my cooking and the over abundance of cleaning on days I just "went to town" cleaning the house.

I am sure they miss all of my little comments around the house. How am I sure? Because Sharayah and Tatiana tell me all the time. They tell me they love and miss me. They are clear about what they miss from me. I know Katia and I are like the noisy ones in the house so I can only imagine how quiet and empty it seems.

I pray the day will come around soon that we can ALL be there again, together. I pray this time will pass quickly and that no more big things come up to slow this all down. Hopefully we get a date set, get transplant and no big roadblocks during and after transplant. I pray Katia does her amazing recovery and we get out of here and are home playing in the yard for the summer.

Katia will see or hear something that reminds her of home and she isn't so tough anymore, neither am I. We both will get teary eyed or sit and talk about home. Sometimes there is just this known silence between us that we are just trying to "suck it up" and move on and just keep on moving ahead with a positive attitude. When I see her do that, I hurt for her but then I am so proud of her. That perserverance will see her through life and get her very far. She is so determined to stay happy and positive that even when she is sick and throwing up, she is saying, "I am okay. I'm okay." She tells herself she is going to be fine and usually it works. I just want to see her do that all the way through transplant and beyond.

Man, is Katia going to be an awesome adult. She is already so wise, I can't imagine what she will become. I would give my life for her because I know she just has something golden in her to offer this world.

She is giggling right now and I just wish there was like a viewfinder that I could see what is in her mind. I literally think God gives her good and fun dreams to give her peace of mind for having to endure all of this. She shouldn't have to but he is helping her through.

Just 4 years ago, I was waiting to meet little Katia, waiting for her to be born. I have learned so much from her over these last 4 years and I plan to keep on learning and growing with her. She is my little dolly:)

Love, Tracy

PS The guestbook should load easier now, it has been split now so there isn't so much to load:) I hope this helps.


January 18, 2004 10:15 AM

Good morning. First, remember tomorrow there will be blood mobiles all over town here so please stop by and donate blood / platelets and you will also have the opportunity to register as a marrow donor:) I know it is so much easier when you can just stop someplace you are already headed.

Katia had a very LATE night. She went to bed around 12:30 AM and then was up a few hours in the night and then back to sleep for a while. I think the day she goes home, she is going to sleep a few days straight!

Hopefully we will find out a transplant date tomorrow (or Tuesday since tomorrow is a holiday).

I am glad to see people are going by the HTML page and learning more about designing your own creative pages:)
A very good thing to always remember is if you do something like make a font a certain color, remember to close that color or else it will turn everything on the page or in the guestbook that way. You can learn more about that in the area called "tags". If you put a link to something, remember to close it with or that link takes over the page. There is so much you can do with HTML so have fun:)

Well, I will of course be back later. We plan to watch some football today:) Katia likes football! Well, Katia wants me so I better close this up. Have a great day. Love, Tracy




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January 17, 2004 9:30 PM

LOOKS LIKE CHRISTINE GETS HER TRIP TO THE MALL!!!! YOU GUYS ARE THE BEST! I THINK THERE MAY BE SOME SHOP-A-HOLICS HERE!

Myron and the girls just left here so I figured I would come update and maybe see if Casie is awake so we can work on her site for a little bit:)

Katia had a fun evening with Sharayah and Tatiana. Those three are such goofballs! There is always a lot of giggling and laughing when they are together and we all just love that!

Myron brought me a SUBWAY sandwich so my belly is very very happy right now!!!

Katia is getting sleepy so let me get her off to her little dreamland.

She found a ladybug in one of her movies (not an actual one). She was so happy, she was like, "Mommy! Look a ladybug on Kipper!" I looked and sure enough there it was. Amazing. They just show up.

Love, Tracy





January 17, 2004 4:15 PM

While Katia is taking a nap, I want to update. You know, I look at her and I watch her sleep and I am just amazed at her strength. This time last week, I was very fearful of today that she could be doing bad and we could be getting bad news but, like Katia always does, she has surprised me beyond my imagination. The results have shown no fungus!! And Katia, she is just as happy and active as ever. She is trying to do some poopies (the same problems she always has) but even so, she is just so strong and able to overcome all of these obstacles and just continue to smile and have fun!!

Katia is my hero! I would put that on a Billboard if I could. She gives me strength each day so I can be strong.

I have an update and prayer request above for Christine but I will post it here too. You will see why. She could use your prayers and if you really want to help bring a smile to her face, visit her page:) Read why you should visit.


Christine
Update January 17th. This coming Friday, the 23rd, Christine has an appointment for a spinal tap (pray this is clear of cancer) and also a bone scan. I am sure she will have a very long day and could use the prayers for not only the actual procedures but also the results. She is so so sweet:) Also, she has been promised a shopping spree at the mall when her page counter gets to 5,000 SO help her get to the mall:) She loves to shop!!!



Love, Tracy



January 17, 2004 9:30 AM

Good morning! Okay, I think I just gained 10 pounds reading the guestbook full of cake and icecream answers!!! Maybe next I should ask for the "best weight loss tips". Boy, those sound great!!!

Should I answer the question? Well, I love this Caramel Cake my Mother-In-Law makes!!!! It is just so so good! My favorite icecream is probably chocolate. As simple as that seems it has been my favorite for years and years. When I was growing up, my favorite cake was chocolate with chocolate icing and the cake and icecream couldn't touch either! I got a kick out of reading that:)

Someone asked me about the kids ages so I thought I would bring up something else that I get emails about and I think I posted before but I will repost.

Sharayah Aminta is now 15. Her first name we found from an Amy Grant album. She is a Christian singer and the name of one of her songs was, "Sharayah". Aminta is my Myron's Mom's name. There hadn't been a girl born in the family for about 13 years so we said if we had a girl she would share her name and WALAH we had a girl!! So that is where Sharayah Aminta came from. She was born in Roatan Honduras, an island off the coast of Honduras where Myron is from. She was born in our house using the same mid-wife that had actually delivered Myron when he was born. WOW

Okay, Tatiana Lynn. She is 11. I was pregnant with Tatiana during the 1992 olympics and she was so active in my belly, I wanted to name her from a gymnastic competitor from the Ukraine, Tatiana Gihtsu (I think I spelled that wrong). So she won gold and we gave Tatiana her name! Lynn is my middle name so we passed that to Tatiana:) Tatiana was born in Lawton, Oklahoma during Myron's military time. We picked up her birth certificate from the Oklahoma City building that was later blown up in the Oklahoma City bombing so her certificate has the picture of that building on it.

Katia Ariani.
I have to give all credit of this name to Myron. We both like to watch ice skating so have seen both ice starts, Katerina Devit and Katerina Goordeeva compete and we liked the names but we wanted it short and sweet. The name Katia just popped in his head, really and I really liked it:) Ariani is actually a changed around version of the name of a place in the Bible. I think the place was something like Ariona or something and we just made some changes. So she is Katia Ariani:) and we all know she will be 4 in 9 days:) Katia was born in Tampa right across the street from the hospital I was born in. That was a great day for our whole family because we were all excited to have a new baby in the house and we have all taken a lot of chances to spoil her completely but Katia is still sweet as can be!

Well, I better sum this up:) (Too late for that right?)

Love, Tracy






January 16, 2004 9:00 PM

Well, I was just cleaning up the room (which I am very very detailed with) and I realized Katia fell asleep. I feel bad because I didn't tell her goodnight but I just gave her a smooch and she smiled:)

We had a nice evening. Katia had some company. One of my nephews came in whom I haven't seen for years and then of course Sharayah and Tatiana and Myron and one of Myron's brothers. It is so nice to be spending good family time together. I like the family that doesn't live here to get to know Katia and see her smile and laugh and play. She does plenty of that with her sisters. Our friends from the WB channel came by and they are just like family. Thank you David and Devin for always making things go so smoothly.

Well, things still look good with all of the labs. No fungus is growing!!! I am so happy right now! Hopefully we will have some dates set by early next week and they will be for right around the corner (like in January).

So, we wait:) We are getting pretty good at waiting.

Well, I am going to try to relax for a while. I like doing word search puzzles when I have a chance and I have only been able to do about 10 - 15 in the last couple of months so... I need some down time:)

I think I will change the banner each night for the countdown to Katia's birthday:) We are keeping up with the countdown now on her dry erase board in her room:) She is getting happy happy!

Love, Tracy


PS I have a question! What is your favorite kind of cake and icecream AND what is your most treasured birthday memory?




January 16, 2004 10:10 AM

Good morning:)
Katia is still sleeping on and off. She had a good night but then at 3AM, she woke up screaming and screaming like she was hurting but we could never figure out what was wrong but I think she was dreaming about her chest tube or having it removed or something. She is fine now though:)

I can't wait for her birthday and I just pray she will have a very fun time and EAT SOME CAKE!!!

Well, we just had MYRON SHOW UP!!! So, I gotta go.

All is well and Ms. Katia is feeling good. Love, Tracy





January 15, 2004 7:25 PM

First let me introduce someone to you and I urge you to swing by and visit. She is super sweet and was our roomie when we first came back when Katia relapsed. Her and her mom have come and visit each time they go to clinic and really have just been there for us and now she is back having relapsed with AML yesterday. I am leaving this message that follows in the Prayer Request section and will keep updating it.

Casie

Casie has just recently relapsed with AML and now needs a Bone Marrow Transplant so she will also be looking for a match. She is 18 years old and she is just way too sweet. She is our neighbor 2 doors down right now from us in the hospital. Please pray for her as she starts this fight all over again. She just had her broviac placed in today (January 15) and she has a brand new website so I am sure she would really like your visits and encouraging words.

I want to thank each of you for visiting the websites I post. I see your wonderful messages in their guestbooks saying you were sent from Katia's page and I know they appreciate your prayers and visits just as much as we do.

Thank you!

Katia is doing well tonight. As I type, she is in the chair with me leaning her back on my back. I love when she is close to me:) It reminds me of being home because as I would check Caringbridge sites, she was always leaning on my back:) "I love you, Katia".

Well, she is well and took quite a long nap today. The repeat x-ray today was because the radiologist sees an "air pocket" in her lung so they want to keep an eye on it. It must not be too big because the doctor doesn't see it. So I will keep you posted. She actually is out of bed and walking around for the first time since surgery (well right now she is in the chair with me) and she walks fine and plays fine.

I removed her bandages today and the incision is about 4 inches or so, not too bad, and it looks fine. Where the tube was in her chest, there is a hole about the size of a pencil diameter which should heal up nicely.

She is such a trooper. I showed her what the incision and hole looked like and she thinks it is fine:)

Have a good evening and please visit Casie:) She is a really cool person!

Love, Tracy





January 15, 2004 11:20 AM

Okay I am back. Katia was just cranky this morning and then we had to do another chest x-ray which I am not sure why so she got upset about having to go lay on that hard table again on her side that hurts. She didn't vomit today so that was good. Anyway, we came back up to the room and now she is watching a movie and playing with her feet!

I have been trying to organize some things around here this morning and put things away that she doesn't play with. I always try to rotate her toys so she doesn't get tired of playing with them.

For all of the local people that come to this site, please remember about blood and platelet donations. There will be a lot of drives going on around town on Martin Luther King Day. I am going to try to put a link here with all of the locations for that day. I know all of the Bealls Department Sotres and also the Tampa Bay's Channel 10 studios will have blood mobiles out on that day. Also you can visit the Florida Blood Services Website and find out more information. There you can always see "The current blood supply" and know what types are needed.

Well, that is about all for now. Take it easy today and give your family an extra tight hug:)

Love, Tracy





January 15, 2004 10:54 AM

All is well here. We just had an x-ray done of her chest again and she is a little cranky so I have to sum this up:)

Love, Tracy




January 14, 2004 8:40 PM

I have been working some on the page placing some new pics and working with some of the old ones so if it is acting up for a while, bare with me:)

I just found out one of our other AML patients here has relapsed today and was just admitted back in the hospital. They found out this afternoon and they are already admitted. I am sure their heads are just SPINNING and they are so scared. It seems now she needs a transplant also. Please pray for her and her Mom here. This is going to be a very very rough night. I know.

Katia is doing well. She did play quite a bit today and so far, preliminaries and all labs are looking like we are headed for transplant!!!!!

Am I nervous? Of course. Am I ready? MORE SO! The only hope for Katia is the transplant so I want it to get done ASAP.

I am wondering what will be going on during Katia's birthday. If I think she will be in the middle of conditioning and unable to enjoy her birthday, we will celebrate it early. I think I will celebrate her birthday the day before we start conditioning so she isn't so full of all of the drugs. They are going to hit her harder with drugs than she has ever been hit before. So, I want her to have a good birthday and able to enjoy some cake, possibly. Maybe she can watch some movies and play some music (she likes to dance) and just have a lot of fun!!! So watch out All Children's Hospital because Katia's room is going to be noisy!!!

Well, that is about all for now. I am glad to say that because I prefer these nice and slow times over times when there are a lot of news to give.

There are a LOT of drives going on around the Bay Area on Martin Luther King Day so I will find out more info and post it. If you haven't registered as a Marrow Donor, this is your big chance here. Also, I can't sress enough how much in need Florida Blood Services is for blood and platelets. This is not a good time for them to be in such critical need so please go donate on a regular basis so this doesn't happen. There are so many people needing blood and platelets on a daily basis plus people going through sugery or involved in car accidents. Blood and platelets save lives each and everyday.

Love, Tracy




January 14, 2004 11:20 AM

Good morning:)

I am just getting around to update. We slept in a little this morning and then had a chest x-ray just to check the incision point and the lungs following surgery. The x-ray actually went okay but Katia started vomitting as soon as we left the floor and wouldn't stop. I was wondering when all of the drugs she was on would catch up with her, well it did on the way to x-ray. She is still in pain so she is still getting medicine for that and also for nausea (now that we know).

She is much more awake and playing this morning in her bed. I am working on adding some pictures on the page but I figured I better jump in here and update first. It is getting late in the morning and I don't want you to worry:)

Well, that is about all that going on here. Still waiting for final results but as every hour passes, I feel more confident:)

Love, Tracy





January 13, 2004 10:16 PM

Well I am going to bed and I hope Katia will do the same thing. She had a nice long nap today but she still looks very sleepy and is remaining on pain medicine so she is a little "loopy" still. Her arm and back are still hurting her from the chest tube but not near as bad.

I had another thank you....

Brian, thank YOU for stopping by although I know how difficult that really had to be for you. That meant the world when you walked down into ICU to come visit and it was so nice to finally meet such a wonderful man who I have heard so many good things about. I hope to meet the rest of your family sometime and please know each of you are always in our hearts and prayers. I really mean that. God bless you.

Okay, this is what we know so far. Preliminaries still look good but the doctor is saying she wants to give the fungus until Monday to see if anything will grow because it is so important we know it isn't there. The lab actually says 5 days so that would end on Saturday anyway. I am feeling good about this though. We seem to be headed in a good direction right now:)

So we are praying it continues to go that way.

Well I am tired but Katia says she wants to watch Barney ALL night! So, I told her to watch quietly. She is like, "Okay, I will." She will be asleep in the next hour at least:)

Good night. Love, Tracy

PS Thank you, God for bringing us back to our room and allowing things to go so well with Katia to enable them to have removed the chest tube and returned her to her room.






January 13, 2004 3:40 PM



WE ARE BACK IN OUR ROOM!!!!!!!!!<






I am so glad to be back in here. It may still be the hospital but it is definitely more home for us right now and ICU was a very hard stay.

On a scale of 1 - 10, Katia's pain level stayed around 9 most of the time. The chest tube was just big and very painful inside her. It hurt a lot to get it out but she just raised her arm for it to be removed probably because she figured it couldn't hurt worse than it did while it was in. She would just cry and sob and then her oxygen levels would go down in the lower 80's and her heart rate would get up to the 180's so she just wanted it out. She also had a temporary IV put into her foot and when that was removed we realized how much pain that was also causing. Her ankle was bent in a weird way and then taped all up and the IV was really putting a lot of pressure in her skin. Well, that is done now and we plan to stay away from there. The staff however was beyond wonderful and very eager to do everything in their ability to help and make things easier.

I want to take a chance to mention a few thankyou's.


Sherry (Christina's Mom), thank you for coming out to support us during Katia's surgery. I know you had to get up early and it was quite a drive so THANK YOU:)

Aunt Donna, thank you for dropping what you were doing and being here with us during surgery. I know what it takes to get you away from school and your house:)

Victor and Patricia, Thank you for your support of prayers and media attention and also just for being there for Myron, Myself and Katia:) You guys have just been such wonderful and caring friends with hearts of gold.

Frank Sanchez, thank you for coming by and joining in prayer with us at Katia's bedside. Your support really means so much to us and Katia just adores you!

Pastor Victor, thank you for coming and leading in prayer and being there for us during this very trying time. God bless you.

I am still just in awe of what the media put together for a moment of prayer for Katia. This is such an example of how prayer really really works!!!


The guestbook is an amazing show of prayer and compassion and just an outpouring of love! For those of you who can, I urge you to read what others write. This is a true testimony of love.


The preliminary reports from the lab look very good. We should hear final reports tomorrow but our hearts are lighter just with the preliminaries looking so good. I just can't wait to get a transplant date.

We were so so so happy to get back up on 2SW. Katia is asleep and doesn't really realize she is back. Daddy is bringing her McDonalds, Barney is playing on TV and all her toys are waiting for her so she will definitely smile big when she does wake up fully!!!

Well, I want to get a shower and get some food!!!


Love, Tracy






January 13, 2004 6:10 AM

Hello:)
We had a.... decent.... night. Katia was up most of it and just couldn't get comfortable or didn't like being in that room. She said there was too many noises and machines and the bed was too high, the lights were too bright and she wanted to go to her room. Finally she went to sleep for about 3 hours. They had brought me a fold out chair so I did the same. Then about 5:00 AM, she woke up in pain and they gave her meds and she fell back asleep. I took advantage of that and came up to take a shower!!!! Man, do I feel better!!! Last night, while Myron was here, I came up and took a shower and it is just amazing what hot water does to a person. Whole new outlook on life:)

Hopefully we will come back upstairs today and hopefully without the chest tube. That is what is really irritating her. They also put an IV line in her foot since her broviac is acting up. If the fungus is inactive and we are scheduled again for transplant, she will get a new broviac right away. Hers is just not doing good. (The broviac is the cathetar into her chest for all her medicines to go in, blood and platelets to go in and blood to come out for labs)

Well, that is about all for now.

Oh, for those of you who always tell me get a breath of fresh air, I did step out for 5 minutes a while ago and it felt good. I didn't go outside yesterday or to the Ronald McDonald House (oops I didn't do my favorite chore of vacuuming) so I missed outside but I do try to get out each day:)

Now, I am having some coffee and heading back down to ICU. Hopefully, Katia is still resting nicely:)

Thank you for all of your prayers. I haven't had a chance to really go to the guestbook, just a glance here and there but I did tell Katia she is getting a lot of prayers from all over the world and God knows everyone loves her. She just smiled:) She tells me she loves me over and over and that just makes my heart warm!!!!

Love, Tracy


********


January 12, 2004 9:50 PM

Good night all and thank you, Jesus for a good day:)

Love, Tracy





January 12, 2004 6:20 PM

All is still okay. Katia is uncomfortable but that is to be expected. No news yet so not until tomorrow now at the earliest. We will remain in ICU tonight and I will update when I can in the morning. It may be a while. Just pray for an event free evening:)

Katia is doing okay though, not sleeping much and very very cranky but okay healthwise.

Thank you so much for continuing to pray!!!


Love, Tracy





January 12, 2004 11:58 AM

We are done with surgery! It actually took under the hour and a half. The actual surgery was about 45 minutes or so and instead of removing the whole lobe, they took sections of what looked "suspicious". Those are the sections that were sent off to pathology. We MAY hear something preliminary today.

Our plans are to be in ICU tonight and then come back upstairs even if the chest tube is still in. She looks good, though feeling some pain where the tube is fed through. She is sleeping mainly and will open her eyes every few minutes to do the "parent roll call" and make sure we are still there.

I have to tell you this!

This morning, all of the Spanish stations, TV and radio had a moment of prayer for Katia all at one time! That was just amazing to me. I can only say that pray brings Katia along and today's surgery went so much better than planned and I am sure the outcome of the pathology reports are going to be great too:) Katia is living on the wings of prayer. Thank you to everyone sending prayers. She looks great, pink and healthy.

Well, I will try to update more later if I find out anything else. I know some TV stations are coming here today for an update so maybe watch the local news.

WE love all of you.

Love, Tracy





January 12, 2004 6:22 AM

Well, today is the day. I am up and I have been praying and praying. I do have a huge sense of peace and I know that is due to all of your prayers for peace. Katia is still asleep and has been giggling a lot. I think God has cartoons playing for her in her dreams right now. I am glad she is sleeping well. She didn't go to sleep until around 2AM that I know of. I kept falling asleep and waking up. I heard her get upset when they took her water away. She can't have any food or drink after midnight anytime she has to be sedated the next day so she has caught on to this now and falls asleep holding her water. She doesn't like to eat but she does drink her water throughout the day.

This morning the doctor was called due to a low potassium count but overnight it seems to have come up some. It was 2.8 (normal is above 3.4) and now it is 3.0 so they feel they can go ahead with it at that level.

Her platelets were 48 and they need to be above 75 but the surgeon prefers above 100 so she is getting platelets (we are waiting for them now and they take an hour to run so we are pushing time!) She can go to surgery though receiving the platelets and she will probably have to get blood and platelets during surgery.

The idea of this surgery is around her ribcage to put a 5" - 6" incision to get in and have a good view and working area. I really think that once they get in there, the surgery will go smoothly. I just pray that bleeding isn't a problem and they are able to get into that tiny little area right by the heart where this fungus is located in left lung.

The second problem is Katia waking up with a chest tube and oxygen (possibly also a breathing tube). She does not like things attached to her BUT I will be happy if she wakes up fiesty:)

I have asked someone to update in the guestbook if I can't get to it once Katia is out of surgery and then this evening or anytime there is something I think I should update. So, watch the guestbook. She will put the heading, "UPDATE FROM TRACY" and it should be in all capital letters. She is my friend Diana:) Thank you, Diana for doing this for me.

Well surgery is in just 1 1/2 hours so I better close this. Myron and the kids should be getting here in the next 30 minutes. THANK YOU FOR ALL OF YOUR PRAYERS AND SUPPORT!!!!

Love, Tracy




January 11, 2004 7:23 PM

Katia is getting her pre-op blood transfusion right now and she asleep. I am glad she is resting up for tomorrow. I am nervous and I try to not let her see that. Myron is nervous and he is the same way. Sharayah and Tatiana will be here for tomorrow so they can see her right before she goes in and it will be so very hard for us to hold back tears. I am tearing up writing this. I hate to see my little baby have to go through these things but tomorrow especially because she doesn't understand it and she isn't going to be happy when she wakes up in ICU with tubes and such coming from her. I am not sure how bad/good she will be feeling.

I am usually the "nerve guage" for my family so if I appear to be worried or upset, my family believes that is reason to really worry so I definitely try to let Sharayah and Tatiana also see the positive side. Even between Myron and I. I know he is aware of everything and he knows I am aware of everything but it is more silent spoken between us. Sometimes we just need the silence and that is so much more healing than trying to plan things out or worry about things.

My hope is we will be back in our room by late on Tuesday and that Katia will be stable. My next BIG prayer is that on Wednesday or Thursday we find out the surgery was the only surgery needed and the fungus proves to be inactive. May God hear my prayers and yours.

I am not sure how much sleep I am going to get tonight as I am the type of person to really try to organize my mind when there is too much on it and right now, my mind needs spring cleaning!

I will try my hardest to update during the day tomorrow but if I can't I am going to have someone update in the guestbook so watch the guestbook if you don't hear from me personally.

Katia is a tough tough little cookie and she has a huge amount determination and focus for her young age. Please pray that her parents will be able to keep up with her:)

Love, Tracy




January 11, 2004 9:30 AM

Good morning all:)

Katia is still sleeping so I am going to update here quickly. She is doing okay. She had that "once every 14 days antibiotic" last night so she will probably wake up not feeling too well. I got them to give her anti-nasea medicine this morning and last night so maybe that will help. It usually doesn't help too much but we will see.

Let's see, what else?

I have been asked a lot if I am nervous for tomorrow. Of course I am but I am also very optimistic. I know my little Katia and she is very tough:)
I need to talk to the doctor today about what to do about Katia's broviac. One side of it is "ballooning" so it may need to be replaced. That side is pretty useless right now so I need to find out. We don't need to have troubles with that during transplant nor do I want her to have surgery once she has had transplant. So, we will see.

My stomach is feeling pretty queezy too over all of this. I go by my gutt feelings alot on how things are going. If I have a really bad feeling, then I look into things as to what could possibly be causing that. My gutt tells me all is going to be okay. I don't mean that I know whether the aspergillus will be found to be inactive but I just feel the surgery tomorrow will go smoothly. Why? Well, for one, I know so many of you are praying as well as so many that know about Katia but not her website so I am sure there is like a "Prayer Hotline" for Katia right now in heaven. That gives me so much assurance!!! It takes a part of the burden off of me (not that I am not praying all throughout these days).

Others have asked who is going to be here with me. Well of course Myron will be here, possibly with 2 of his brothers. My other two daughters may or may not miss school to come here. We haven't decided that yet. My sister will probably be here. There are quite a few people who will be dropping in and out and I am never one to sit still so I will be upstairs, downstairs, in the chapel, in the halls, etc. etc.

Myron is very anxious over all of this. Of course, he hates to see his baby ever get sedated and just look so lifeless but he is nervous over tomorrow's surgery. He is fervently praying that everything will go very smoothly and that there will be no further surgeries required. As anxious as we are to move forward with transplant, we ARE both very nervous about this transplant. It seems to just get more and more risky each and everyday. I swear when Katia is old enough to read, she is going to sit down and read the journal and guestbook to its entirity (if I spelled that correctly). I want her to see all the boundaries she overcame, all the prayers and love that was sent her way and just how much was actually involved in "Transplant" and the road to get there and beyond.

Katia just woke up and sat straight up and said, "Oh no!" So I figured maybe she was dreaming about being home. I asked her what was wrong and she said, "I was dreaming, and I was dreaming about presents." Poor thing, she is getting worn out of being here and just wants to go home and have fun. Her highlight is definitely mail time here and when Myron and the girls come to visit. Oh, I must add she LOVES Physical Therapy and the Physical Therapist Merrit. Merrit is very fun to play with and brings some very cool toys to play with Katia.

Well, let me sum this up as Ms. Katia is now awake:) Her nurse wore ladybug scrubs for her today!

Love, Tracy





January 10, 2004 5:15 PM

Katia's surgery information is above in red.

I want to add this link here right now but it will always be above on the page. It is an awesome Christian Radio show that has really great stories (changing all the time) for toddlers to teens and even parents!!! There is a lot of great links from their page also to follow to find more good online lessons and stories.




CHILDRENS' ONLINE CHRISTIAN STORIES TO HEAR!! (TODDLER TO TEEN and adults!)





I also want to thank Brad and Shelby for adding more memory to my laptop!!! WOW that was so needed and I appreciate your dropping by to upgrade it:) I have been on AOL for a while since and haven't yet been knocked off! THANK YOU!

Love, Tracy


January 10, 2004 9:30 AM

Good day:)

We are up and at it, (well Katia is still asleep but she was up a few hours earlier).

Here is the link for the news story from CBS last night. I wanted to get it up last night but I shut things down and fell asleep:)

January 9, 2004 "A setback in Katia's transplant"

Well, I will be back around later to update more. Nothing is going on right now and I still have nothing new to share (which in some ways is a good thing- no head bumps to talk about)

Love, Tracy




January 9, 2004 9:00 PM
Katia will be on Channel 10 local CBS news tonight. The story was filmed at the house (without Katia) but this should be good to see all the stuffed animals she has received. Myron did the interview from Katia's bedroom:) I can't wait to see this because I haven't been home since October. I will see if I can put a link for those of you who aren't in the local area so you can view it online. Love, Tracy




January 9, 2004 5:32 PM

Okay, first thing, we know nothing else yet about the lungs...
They are looking into the possibility that the RIGHT lung may also be involved with this fungus IGHT lung. The surgery is set for Monday on the LEFT lung. Confusion! But, we will get it all straightened out. The SCANS were sent off for yet another opinion so we wait.

The news team that came by for the WB channel (which is channel 6 here on the Bright House Network) is taping for a special in February in Katia. So they will be filming on and off working for that story. Katia will however be on UNIVISION Spanish channel tonight at 6PM for those of you who can watch that. They also came today and got new footage of Katia. They have followed Katia's story for a little over a year now. If you get a chance you can watch that. That won't be online so I can't put a link to that at a later date. I can't even watch that at the hospital because that channel is what the hospital uses to play movies for the kids here. Myron will usually tape it for me to see.

Katia has had a nice day. She did clunk her head one time today but she had platelettes and she didn't hit it too hard but it did scare her a lot.

Now, she has something hurting her when she pees. Katia keeps us busy so we will just get a urine test and see if the urinary tract infection is back.

Well, she is running around so I can't concentrate too much so I will be back later. Love, Tracy

PS I am back, things have calmed down some. Katia is actually sleeping right now. She was so worn out.

Someone emailed me about a young girl, Kaycey G. who had waited for a heart and lung transplant since the year 2000. Finally in September of 2003, she received her transplant and was doing very well but is now back in the hospital. I am sure this is very scary to her. Maybe you can swing by and just say HELLO:)

Love, Tracy








January 9, 2004 10:35 AM

WE HAVE PLATELETTES!!!!

Yes, Katia had gotten down to 14 so they gave her a transfusion this morning so she should be good for a few days. She will need more before and during surgery as well as blood. This is why it is so important to help keep the blood supply at Florida Blood Services (and all of the Blood Banks) packed and ready. There are so many kids just like Katia needing these things day in and day out sometimes 2 and 3 transfusions a day for one child. There can never be too much blood donations so please go and donate. Just do a general donation for anybody and Katia benefits from this as well.

Okay onto the morning's events. After she got her platelettes, her broviac (chest cathetar) stopped working and even with the TPA (broviac "Drano") it just wasn't working. If they can't get it unclogged, she has to go to surgery and have the broviac replaced. Well, right before "the point of giving up", the liquid finally went in and now it is sitting in the broviac doing its trick:) Thank goodness. We don't need another surgery!

Katia has had 2 doses of GCSF which is a drug they use to build up her WBC count and immune system prior to surgery. Last time they tried that, it didn't work to bring up her counts for over 45 days. Today, she woke up with a WBC count of 5.03!! That is super and she still has one more dose to go so we should be set for surgery on Monday. It is important to have that raised due to the fact the incision will be large and open to infection. They are planning to do about a 5 inch incision on her chest. I have asked them to keep it pretty for her so she can wear bikinis:)

That is about it for now I think. I am pretty sure she will be on the news tonight. WB news at 10:00 PM locally. I will keep you informed though so you know if you should look for it. They don't have the Internet stories so if your not local, I won't be able to post it here. Sorry.

So to sum it up, she is packed with platelettes:) That was great to see running this morning:)

Love, Tracy

PS Remember Tommy Bennett? He passed away back in November from Sanfillipo Syndrome. His other two siblings have the same thing. Well his sister, Ciara, is having seizures so they could use your prayers to get the seizures under control. Tommy was the only one who qualified to have a Cord Transplant but due to complications, he didn't make it. Please pray for Ciara Bennett that they will get these seizures under control.

Love, Tracy





January 8, 2004 10:15 PM

Katia is asleep and she is giggling so I am not sure what she is dreaming about but I am happy when she is happy. I added a few prayer request above tonight. I am posting them here tonight only because I know my journal updates get so long sometimes (I am sorry) and going back up to the prayer request is just exausting. I am told so many times how long winded I am BUT you should hear me TALK!!!! WOW! Very fast and a lot of words!

So here are the newest prayer request.




Madison's Site
This is a new website to me which was introduced to me in Katia's guestbook. This is Madison. She will turn 17 in January and was diagnosed with AML this past summer. She is having to go through all the chemo and I just want to pray for her to wake up each morning feeling encouraged even though she is not living the life a 17 year old should be able to live. Maybe you can swing by and leave her a message:)


Christine
Not too long after Katia was diagnosed with Leukemia, Christine was one of our roomies. She just had some MRIs today and we are praying they are all clear. Her and her mom are just so sweet. They came by and brought Katia a ladybug and some coloring supplies and then they gave me a COFFEE certificate for the coffee place downstairs! I LOVE COFFEE! Please drop by to just say hello and please pray these tests show Christine is in the clear. She is too sweet.


Luke D.
Please pray for Luke as he has returned to St. Jude for followup scans. We are praying the tumor is shrunk or just plain GONE would be great! I have followed this family for quite some time. They don't live to far from us. His testing is on January 12th so please keep him in our prayers.



There are other prayer request up there and I will continue to add them. I need to work on that section a little bit when I have a chance but, to me, it is very important how strong the power of prayer is and how important and encouraging it is for encouraging words in the guestbook. I mean I wish I could just frame Katia's guestbook and title it, AWESOME ENCOURAGMENT!

I am just so encouraged each time I sign on and read the entries. You are amazing!!

Katia had a very fun evening with her sisters but I was glad to see her fall asleep. She has had me so nervous to bump her head or something today. She has a big bruise on the back of her leg and that was caused by doing nothing so I could only imagine what would happen if she clunked her head or fell on her elbow or knees. I don't even want to think about it.

Monday is getting here faster than I thought it would and of course we are very nervous but I know Heaven will be flooded with prayers everyday but especially on Monday that Katia's surgery will go well and the pathology reports will come back and say she can go forward with transplant. The surgery is Monday and Pathology should have the reports back by the end of Wednesday or early Thursday. That will tell us a LOT and will give us the dates for Transplant. We will also hear from the doctors in New York as to what they think is going on in her right lung. Surgery this Monday is for her LEFT lung. Please pray they agree the RIGHT lung is only scar tissue and that can be left alone. Oh, so many things to pray for but never too much for God.

Just by me typing this, thinking this and you reading this, prayers are being heard by God because He knows our minds, our hearts and our souls.

God bless each of you and your families and thank you for coming by to check on our family and our little Ladybug, Katia!

Love, Tracy




January 8, 2004 5:32 PM

Katia is running around here like someone packed with platelets!!! She should get some tomorrow I guess since they are dropping so much. We were trying to hold out until Sunday for the pre-surgery transfusion. But, I guess she needs them sooner. She has some pretty dark bruises on her little legs and she isn't even bumping them so I couldn't imagine them getting bumped. Mind you, the lowest her platelettes have been in the past were actually 7 on a clinic visit one time so she is okay:)

Well, I just thought I would update quickly before Myron and the girls got here:)

To answer some emails, her birthday is on the 26th of January. She is really looking forward to it. I am trying to get her to promise she will eat some rice and chicken and also cake and icecream. It would be nice if that could also be her transplant date. Two birthdays in one!


Love, Tracy





January 8, 2004 2:40 PM

Good afternoon. Katia is feeling better. Her eyes look pretty bad but she says they are okay. Her platelets are down to 16 today so she has the little peticae spots on her face. Her birthday is coming up and she is really getting tickled about that! She will be 4 and she promises she will eat 5 bites of cake and some icecream:) We will see. Last year for her birthday, the BUCS won the superbowl!!! Great birthday present:)

Well, that is about all. I just wanted to update that she is having fun right now:)

Love, Tracy




January 8, 2004 9:40 AM

I am amazed we are already 8 days into this new year! Time doesn't stand still for nobody, does it? We have plans that this will be a good year for our family.

Please always check the prayer request section above as I don't make mention in this area but I do check on those sites and try to update the prayer request. If you know something is going on that a family needs a lot of prayers, please let me know. I will try to get the new requests up there.

Nothing new here with Katia. Her eyes aren't bad this morning. She is watching Barney. She keeps feeling like she needs to throw up but then she doesn't. She tries to be very tough and put mind over matter.

I want to thank each of you for always sticking by this family and checking on us. I know this is a roller coaster ride. Some days are so much better than others and when it seems one thing gets better, two things go wrong. Never feel dishearted though, your prayers are helping in so many ways. Your guestbook entries are better than gold to me, REALLY!

This is a page where a lot of love is shown. I am glad I have a way of sharing Katia's story with you, her day to day ins and outs. You are "looking through Katia's window" and have become part of our everyday lives!

We treasure your friendships and your love and concern. God bless you for caring.

Love, Tracy


January 7, 2004 7:15 PM

Hello:)
Well it is again evening. Thank goodness for the sun. It lets us know the difference between day and night:)
We are okay though. Katia had her eyes looked at. She doesn't like eye exams at all!! She hates eye drops. So...
everything checked out okay as far as her optical nerves and eye surface so they are assuming it is a build up of fluids from her nutrition IV, side effects from the brain radiation and just irritations. No eyedrops though because they pity her and hate to see her screaming and crying over them.

Aside from that, Katia is doing okay. I am nervous as to how low her platelets will be tomorrow but we have decided not transfuse until they get around 10 - 15 so she doesn't build up antibodies to the transfusions. She will need probably 3 bags during surgery and then during transplant she will need them daily or twice daily for a while so we are trying to hold off right now. Just pray she doesn't KNOCK that head of hers!

That is all that is going on now. Surgery seems to be set for Monday, morning I think. We will know more after that and then we have to wait for the pathology reports to come back also which will take 2 - 3 days.

Thank you so much for continuing to check up on our little baby!!!

Let me go find a new photo for up top of the page:)

Love, Tracy





January 7, 2004 11:40 AM

Good morning:)

This is going to be quick. Katia is doing okay. Having some eye pain but they gave her pain medicine for that and she seems to be feeling better. They have put in for an eye doctor visit today so hopefully he will have some answers. She hates eye drops so maybe there will be something to do about it that isn't eye drops. I am thinking it will be more of a visit of evaluation and then to keep an eye on it each day for the next few weeks. A lot of times there isn't much we can do for her eyes other than to keep the pain subsided. She is being quiet right now so I assume that is why.

Other than that, not much else is going on. It seems surgery is set for Monday morning. I talked to the surgeon yesterday and he is very optomistic about the surgery since Katia is in such great health right now (great for her). They will boost up her WBC count some and give her platelets for surgery. Right now, her platelet count is down to 19 and her HGB is dropping back down again to 9.4. That has been bouncing around over the last few days. She never seems to be too affected (activity wise) by her hemoglobin (HGB) going down but she gets pale looking.

Well, thank you so much for all of your wonderful guestbook entries, your prayers, your words of care and encouragment, and just for reading this:) Love, Tracy






January 6, 2004 9:50 PM

Well, Katia is down for the night. She is watching the Wizard of Oz but her eyes are pretty swollen right now. They think this is due to the radiation she received to her brain but in any case, I think a visit from the eye doctor is in order tomorrow.

She had a lot of fun tonight with her sisters. She plays and plays and hates to see them have to go home but that is where her love for watching movies comes in handy. She will usually calm down when they leave by watching a movie. I am so happy to see her really really play as much as she does in the given situation. Who is my hero? KATIA!!! I am just amazed how she handles things. A lot of times I think it is because she is young and she really doesn't know what is going on but recently by the things she has recently talked about, I realize that is not so. She very much realizes and she very much misses being home. She knows the hospital is no fun but she also knows she MUST be here to get her "new blood". She knows she can't go home without "new blood" and she is willing to ride this through and try to stay happy. I see her sometimes get upset and then literally her face shows she is just telling herself to get over it because being upset will change absolutely nothing and she just snaps herself out of it and starts to busy herself. Katia is like a much older kid in so many ways. But, she is still just this squeezable, lovable baby!!

Well, I bid you goodnight. I am going to clean her toys and clean up around here and call it a night. I don't really watch TV until night so this is my winding down time. I do miss being able to just go crawl in bed with Katia (of course in our room and not her room) and watch TV and then have Katia sleep between us, holding on to both me and Myron like she didn't want us to leave her alone. She has really had to do a lot of growing up over the last few months but I am sure when we get home, it will be back to our bed!!! She is definitely a "Mommy and Daddy's baby" and we just love that!

Love, Tracy






January 6, 2004 10:15 AM

Good morning:)

Katia is resting right now so I have a chance to update. She woke up throwing up because of that medicine she is on for the fungus. We have put her back on a medication to prevent that now.

Thank you so much for all of your guestbook entries. They really let me escape for a while and I just know God is hearing all of these prayers and feeling all of this love.

I have received some emails and guestbook entries asking a few questions so I will try my best to answer a few. As we learn more, I will share it with you.

The lung has 3 lobes. One side has one lobe and the other side has 2 lobes, one larger and one smaller. Katia will be having the larger lobe removed on the side that has 2 lobes. Can her body make up for that lost? Not likely but of course it is always possible. She will definitely get winded easier than most but that is best case scenario and something we are definitely willing to face. There are a few ways they can do this surgery and I don't know which way they are planning yet. Like I said, they have sent her CT SCANS off to Memorial in New York and also put in for some input from other doctors in the field from other hospitals so there are a lot of heads working on how to best take care of Katia's lung. I have read a lot into this and I have followed different Caringbridge kids that have faced similar situations as well as kids that do not have Caringbridge sites. What I have learned is we don't want to risk this flaring up once transplant starts. IF it did flare up, it could go through her whole body in a very quick and unstoppable rate BUT there is also treatment that could help then also. When it comes to medicine, there is no sure thing because God can always step in and just make things work that should never have worked. MIRACLES can always happen.

So, I just want to go into transplant knowing that we have done our very best to see that Katia goes in with the highest possible prognosis and that we have put her care in the hands of her doctors but rely on God fully.

This transplant is a very very high risk transplant for a few reasons but the lung issue definitely put it a lot more critical. No matter how it is handled, fungus can always come back and show its ugly face. That is why I am relying on God to hold Katia's hand and see her through transplant and many years beyond transplant!!!

Katia is a tough little cookie!!! She rest to gain strength and when she is awake, she LIVES life to the fullest and just seems to really enjoy herself and be happy. When she gets unhappy, we do what we have to in order to bring a smile back to Katia's pretty little face. Is Katia spoiled? Of course she is sometimes. I could we not but she is a doll and never rude or mean or even pushy. She is just perfect!!!! I love my little baby!!! Can you tell?

Love, Tracy


January 5, 2004 7:00 PM

Right now Katia is asleep and I pray there are wonderful dreams going through her sweet little head. I pray Katia will look back on all of this and say, "Wow, what an amazing story!"

Katia was on the news tonight on ABC Local News and the story was just adorable. Katia is playing with her little doll house and she is just so sweet!!! Oh, I could just kiss her!!

I just got to kiss her:)

You know all of this is not easy, as you can imagine. Our family is apart all the time and we are usually always around eachother. So many things that run your day to day life like kids, school, bills, housework, yardwork, etc. still go on in our lives but at the same time, we confront some of the decisions parents shouldn't have to make. Do I ever ask, "Why me?" Well of course I do. I often think how nice it would be to be bored or at least just faced with normal everyday life. But, then I think, I guess no life is totally "normal". We all have things that go on in our lives and no matter how small they may seem compared to Katia's situation, they are in so many ways equally important, especially to the person facing them.

We definitely have a high appreciation for life and the simple moments. I ADORE THE SIMPLE MOMENTS!!! But, I pray God will bless us with all of those simple moments again and soon. Katia is a very tough little girl. I mean, I know she can pull through anything with the grace of God.

I really believe Katia has a purpose for many years to come. Maybe she is going to be a motivational speaker or a doctor or nurse. I never know. She can be anything she wants to be and do anything she wants to do. She proves that to me everyday.

Katia is the core of our family right now and we are all determined to do whatever it takes to keep her healthy and happy.

Yesterday I was pretty depressed and Sharayah and Tatiana showed up here with very beautiful letters written to me by each of them. They are amazing and so full of life and love. I couldn't do this without them.

I get some of the kindest letters in the mail about how Katia has touched so many lives and how the website and journal entries offer a lot of inspiration. I must add that many people learn from the guestbook too. That guestbook is beautiful and if you ever have the time, read the guestbook entries. It could be a book for inspiration!!!

I am so blessed in so many ways and this helps me get through every minute and every hour of every day!!!

THANK YOU!!!

Love, Tracy




January 5, 2004 1:30 PM

The answer is Lung Surgery to remove the lobe. This is a very difficult thing for Katia to have to go through before transplant. All I know right now is the surgery will be early next week and if all goes well, transplant will be in 3 - 4 weeks following. The cord and the other drugs necessary are just on hold right now. We still have to meet with the surgeon to learn more. They will remove one whole lobe from Katia's lungs and biopsy it to find the best treatment to keep her on through transplant. Please pray as these plans come together to work out the best plan of action. I just want to go spend time playing with Katia right now. We have a news team coming here for a regular update so we have been pretty busy due to that. I do hope Katia's story will continue to get people to see the importance of not only registering to be a marrow or cord donor but also a regular donor for blood and platelets. Katia's platelets are 23 today but we are holding off the transfusion till tomorrow if need be to see if they will come up some. Her WBC count is 1.86 today so that is on the rise.

Love, Tracy





January 5, 2004 11:00 AM

We wait...
If you were to look at Katia she seems so healthy and it is hard to imagine something so vicious is inside her.

She is happy and watching Dora the Explorer on TV right now.

I know prayers help, I can feel that prayers help. I continue to pray.

Love, Tracy




*****



January 4, 2004 9:45 PM

Ms. Katia is asleep now and Myron and the girls just left here. I very much enjoy when the whole family is together. Although it is not the environment I would want, we are together. I am so nervous about tomorrow and what the doctors may come at me with and what decisions we will have to make but please just pray for us to make the right ones and for the doctors to be able to come up with a great plan to get Katia on her road to getting home with her new blood and her new chance at living:) This is our dream and this is ALL we want in life!!! I don't think that is asking for much. Katia is our world, all of ours! Love, Tracy





January 4, 2004 11:55 AM

Katia is up and running around. It is amazing when I look at her to know so many things are going on inside her body, you would never know that by watching her play and hop around here. I am just praying a good plan of action will come together tomorrow and we can be back on track. Sorry this is short but Katia is very hyper and I can't have her fall down. Platelets are down to 29 today so I have to keep up with her and her little head:)

Love, Tracy





January 3, 2004 10:30 PM

If you haven't read the update before this, you should to help you better understand what I am talking about.


I appreciate so much everyone praying for Katia and us during this time. Things just seem to be so stressful right now. I have been doing a lot of research trying to feel out the treatment plans and ideas. We won't hear anything until Monday as far as what Infectious Disease can come up with but I do trust them. Aspergillus is not something that can be tracked down to exactly how it was introduced into Katia but people with suppressed immune systems are really so open to just about anything. That is why we have had to keep things so clean around Katia and watch who comes to visit her. This is not something that she could have gotten from anybody else. We have no way of knowing if she has had this since before she relapsed or when she contracted this fungus.

We just have to pray a treatment idea can be planned out, carried out and that Katia can go ahead with transplant and come out victorious. Through God, ANYTHING is possible.

Katia is back on the antifungal medicine she was on that she seemed to respond well to and she will continue on that medicine even through transplant. I am just really nervous that they will come and say she needs the lung surgery we tried so hard to stay away from but we will just have to wait and see.

Please continue your prayers for Katia. God has plenty of lines to hear your prayers and I appreciate them all being said. Katia has really touched so many lives and it is my belief she has many more lives to touch. One of Katia's greatest strengths is her determination and her zest for life:)

That is my baby!!!

Love, Tracy





January 3, 2004 2:00 PM

Okay, let me share confusion with you. My head is swimming right now.

One lung shows to be okay, the other lung seems to be worse but another doctor has to come determine how much worse and what to do about it.

Transplant? I don't know yet. Lung surgery is again a possibility which again sets things back for the time to heal. The lung that is showing signs of disease is the biggest lobe of the lung right next to the heart.

One thing for sure is she would not be able to get the strongest conditioning drugs before transplant so that would change no matter what. Am I comfortable with that? Yes, I am.

Let me explain why this lung situation is so important. The type of fungus it is, asperagillus, can just go haywire once the conditioning treatments are done prior to transplant. Once the conditioning is started, there is no turning back. You have to go ahead with transplant. This fungus can then attack her heart, liver, kidneys, etc. and cause irreversible damage that would be unstoppable. That is the worry.

Right now, we may be looking at;

a) going ahead with transplant as scheduled using a different, lesser, conditioning treatment.

b) delaying transplant and treating the lungs further with more antifungal medicines and seeing what happens.

c) remove the lobe that is infected and waiting for Katia to heal from this lung surgery (5 weeks or so) and then make decisions for transplant.

d) use maintenance chemo therapy on her marrow to try to devert relapse of her marrow and treat her lungs with antifungal. Delay transplant.

e) leave room for new ideas from other proffessionals in this field of medicine.


So, that doesn't leave us with any answers today. I do know a lot of discussion and decisions are having to be done now because the window for this transplant will close at the end of this coming week, meaning, we would have to start the conditioning regimen chosen no later than Thursday.

She will probably be put back on one of the antifungal drugs that had been stopped today though, no matter what. That is the drug though that messes with her blood pressure so much and keeps us on edge 2 hours each night.

Our family will do and go through whatever we need to in order for Katia to have a healthy future. We do not give in easy to anything. This is really beginning to wear on us and break us down though. I know I am a very positive person but I must say, it is very hard and almost impossible to stay positive when negatives keep coming and hitting you in your head. This is wearing us all down emotionally, physically, financially, but not spiritually. We do rely on God to see us through everyday and every decision. Love, Tracy






January 3, 2004 1:00 PM

Well I was trying to wait for CT SCAN results but they still have not gotten to them. The results on the kidney function test looks okay, high, but high is better than low.

Katia is doing okay right now. Her face is still a little puffy but that may just be lack of sleep. She didn't sleep well last night due to the cathetar and I am hoping NOW THAT IT IS REMOVED that she will take a nap. I don't know. She is pretty eager to play since she was in bed all day yesterday.

Well, that is about all for now. I am just praying very hard the CT SCAN is clear! Love, Tracy





January 3, 2004 12:24 AM

We are having a late night due to the cathetar. Katia doesn't like it so she just got some medicine to help her sleep. I just added new pics up in the photo album. My favorite is photo #1 because that is my "Little Squirt" when she wants to be funny:) "I love you NaniBooBoo!"

Love, Tracy




January 2, 2004 6:20 PM

We just returned from getting the CT SCAN done and since it was done so late we don't get any results on that until tomorrow (UGHHHHH-so we wait!)

The MRI results of her eyes and brain have no changes so that is good news. The foley cath in her bladder is driving her nuts so they gave her some "Happy Drugs" to make it more bearable so she is playing right now with some ladybugs and duckies. (I need some of what she is on)

Myron and the girls are on the way here and that ALWAYS makes her so happy!!!! Mommy is just the one who makes her take nasty medicine and do the tests she doesn't like. No, Katia loves me!!!!!

Anyway, I just wanted to bring you up to date. Please continue to pray those scans show the doctors they can move forward with this transplant. PLEASE!

Love, Tracy





January 2, 2004 3:20 PM

The MRI is done and the foley cathetar is in her bladder but she woke up very irritated so we have been unable to get the CT SCAN of the lungs done (most important test today) so we are waiting to see if she will calm down. We have to get this done today but she has to be completely still for at least 5 minutes. Katia may have to be sedated again but we are trying to see if she will relax some first and then we will try to avoid the sedation. Pray that she will calm down. She does not like this cathetar at all!!!

Love, Tracy





January 2, 2004 11:48 AM

We are still waiting to go for the MRI and SCANS. During the MRI while Katia is asleep they will insert the foley cathetar which will stay in her bladder for 12 hours to check her creatinine levels (kidney function test) so she probably won't be too happy today. We will see. She has been watching her Disney World video all morning. She is singing along with all of the songs. I like this video. We have had it since around 1990 and it has definitely been played many many times.

Two quotes were shared with me today and I want to put them here.

"Some succeed because they are destined to BUT most succeed because they are determined to."

"Worrying does not empty TOMORROW of its TROUBLES...
It empties TODAY of its STRENGTH"

I thought those were very true so I had to share them with you.

So we are still waiting and I will let you know when we are done and any results I find out today. PLEASE PLEASE PRAY HER LUNGS LOOK GOOD!!!

Love, Tracy





January 1, 2004 9:13 PM

I have spoken with the doctor and there a few things we will have done tomorrow.

Katia will first have an MRI done of her eyes and brain. This is mainly checking on the results of the radiation treatments.

During this time she will have a type of insert put in her bladder to drain her urine over the next 12 hours to check some levels there. That may be uncomfortable for Katia but this has to be done before transplant. It checks her kidney functions.

They wanted to put an NG tube in Katia to put contrast in for the CT SCANS but since Katia never drinks the contrast all the way done, the NG tube has been cancelled (thank you, thank you) and that is good because Katia wouldn't leave it there anyway. Plus that just brings more risk for infection.

Now, the CT SCAN hopefully shows either no changes in her lungs or that they are better. I am not going to go any further with the "What if they aren't better" because I am going to just be positive and pray they are clear but THEY JUST HAVE TO BE CLEAR. PRAY THEY GIVE US THE GREEN LIGHT TO MOVE AHEAD.

I may be slow in updating in the morning due to tests being done. We are usually just called when they are ready and the MRI people usually try to get Katia first so that may be early.

She also has to have a psychological evaluation done before transplant to see where her starting level is in that area.

So we have a busy day and we need a LOT of prayers for a LOT of patience and very good outcomes and results on everything.

They also sent off some more labs this evening. I forget really what they were for but it is just another thing they need to test for due to her platelets dropping. I am praying tomorrow's labs won't show the platelets much lower. Today they were 70, the day before 109 so I pray they will at least linger around the 70 for a few days. We still don't know why they are going away.

Love, Tracy



PS How did you spend your New Year?




January 1, 2004 2:33 PM

I have been trying to add the following update since 1:45 PM but for some reason, it just won't load in so I am trying again:)




January 1, 2004 1:45 PM
I know I am getting to this late today but things have just been hectic. Katia is fine, she is actually having a tea party with a volunteer right now. I am just worried due to the change in plans somewhat but mainly what the CT SCAN holds. The last one looked good so I pray this one will look good (even though her counts have been down). Her platelet transfusion she had the other day brought her platelets up to 109 yesterday and now today they are already down to 70 so we have to find out why. Her transplant conditioning will start 2 days later due to the need to wait for some tests results to come back and now this scan. If the scan shows the lungs acting up, we can't do transplant. I don't know what we would do. She is already at such a high risk with the transplant because of the fungus in her lungs. Once all her counts are wiped out, the fungus could just attack all her vital organs and we can't do that. So, again we wait. We are supposed to meet with the doctors today to go over some more concerns they are having but as for now, IF the scan looks good (and we pray it does) then the day she will start all of the conditioning treatments will be on Wednesday of this coming week, January 7th and the transplant would be set for January 15th. Please stop whatever you are doing right now and pray Katia's lungs are clear....

We need this transplant to go ahead to save Katia's life.

Love, Tracy


December 31, 2003 11:07 PM

Well 53 minutes to go. We have been trying to have as much fun as possible up here together. We were playing for a while and saw some fireworks out of the hospital room window. We played around to some of Barney's music and Blue's Clues and then we did the 80's and 90's dance mixes. Now we are to the 80's Love Songs because Katia is winding down and tired and although we want to ring in the New Year together, we don't want to make her body tired.

The doctor came in tonight to talk to us and let us know that the conditioning treatments for transplant will start on the 7th instead of the 5th so transplant will be set for the 15th of January now. We will rescan her lungs to see how they are doing with the fungus. If ANYTHING has grown back or there is question there, transplant will be called off. I pray they are the same or better. The doctor also let us know this is not just a risky transplant but a high risk transplant due to the lung problem. She wants to talk to us more on Monday.

I know we are headed down a long and weary road but as I said earlier today, this year has taught us so much and one thing I have been able to focus more on is trust in God. He has brought Katia through some tremendous difficulties. All we can do is pray and ask for prayer for this upcoming transplant to be the miracle Katia needs, that she will get through transplant, engraft and remain in complete remission for many many wonderful years. As always, pray for a cure.

So, I am going into this new year a bit more on the worried side than my evening started out because again, we have to wait for more tests and more news before we can get a definite on transplant and then IF we are able to move forward it is like walking on eggshells but very very precious shells.

Love, Tracy






December 31, 2003 8:00 PM

Myron, Sharayah and Tatiana are on their way here to ring in the new year with us. Please everyone have a happy and safe New Years Eve and I will be back next year! Love, Tracy







December 31, 2003 11:30 AM

It is almost 2004!!!
Can you believe it? Where has this year gone?
I have a question for each of you.
What have you learned in 2003? What has inspired you? What was a dream of yours that did come true and what dream do you WANT to come true in 2004? Do you have an inspirational story to share from 2003? A poem?

I have to say that 2003 has brought me many many friends. Loving and caring friends who have been so loyal and have stood beside us (in person or through cyberspace) throughout all our family has faced. I have met some truly amazing people fighting for their lives. I have seen a lot of people face the battle with everything they had only to later earn their angel wings. BUT a question I have been asked time and time again is why do I take the chance in getting to know someone that may not survive? Doesn't that make all of this more difficult to face each day? The answer to that is, No. I am glad I have learned about each person I have known though I may have known them over a year or just for a few days, I learned from them and have grown from knowing them. I am truly touched by each path I cross. Yes, I chose to take those paths and meet the people along the way that I do and it makes the path a much more beautiful road to travel.

My dreams for this coming year is for Katia to get her "new blood" and to be on a speedy road of recovery and feeling better. I pray to take her home and have her running around in the backyard this Spring, playing on her swingset and eating all the many meals she used to eat!!!

I pray for health and happiness for Myron, Sharayah and Tatiana. I pray for Sharayah and Tatiana's safety and growth each day.

I pray for the health of each of the families we have grown to know and I pray for peace for those who have lost loved ones this year either by natural causes, Cancer or other means. No matter what takes a person from our lives, it is very difficult to face.

I pray each of us will be more able to communicate our thoughts and feelings and there will be more peace around us because of this communication.

I pray for our troops that they will find safety and return home to their families soon.

I pray that through this next year a cure will be found to finally put Cancer out of our lives and all the lives of those facing this horrible disease. I pray treatments will continue to improve and rapid advances are made each and everyday. I pray people fighting these diseases will no longer have to fear the "R" word (relapse) after treatments or Bone Marrow Transplants. I pray this disease will be put completely aside and CURED. I just imagine the cure for cancer is something so simple but just hasn't been discovered yet. It has to be there, somewhere.

This year has also brought to our attention the need for more people, a lot more people to register as Marrow Donors. I think the reason the registry is so small is that most people just don't know or understand the importance and how to go about registering. When we brought this need to the attention of the Tampa Bay area and those coming to this site, we had an overwhelming response!!! This response brought about another problem to our attention, funding for these drives. So we believe when there is a problem, help find a solution. This lead us to start The Katia Solomon Fund. We have already been able to help in a few different ways with funding and that brings joy to our hearts because we know first hand how important this really is. Nobody should ever have to wait for a match and we are going to help make this a possibility. I want to thank each of you for your contributions and for your prayers to help get The Katia Solomon Fund off to a good start.

Katia is an amazing little girl with a story that gives hope but also presents us with a big need to spread the word about how others can help keep this hope alive.

Thank you for always coming by to check on our Little Katia and I will be back, of course, to leave a final word for 2003:)

God bless each and everyone of you. Please be safe over this Holiday Weekend so that 2004 can be a wonderful year for all of us!

Love, Tracy





December 30, 2003 6:15 PM

Please see above in the prayer request section for an urgent prayer request for Ashley.

Katia is doing just fine. She has had a good day. She has her platelets so I am more at ease:)

She has been playing quite a bit and chatting with me about everything under the sun.

I have received a lot of emails about the poem below and I am so glad it has helped so many people. I always say, "When you don't know what to say, just say that." It is just helpful for people to know your heart is there. It is so hard to find the "right" words so often. I know this to be true. When I hear about another child passing away, it would be nice if I could just walk up to "Cancer" and slug him slap in the face!!!! But, since that isn't possible, we just have to be there and offer our heart.

Thanks for checking in on Katia and for visiting the links on Katia's page:)

God bless and I hope you are gearing up for a very happy and healthy New Year:)

Love, Tracy




December 30, 2003 11:20 AM

We are about to get a platelet transfusion!!! Thank goodness. I get so worried when they are so low. I put a notice above about Florida Blood Services needing people to go donate blood and platelets immediately. All of their blood types are low so everyone is welcomed and very needed. I am going to set up an account also just for Katia. Right now, Katia is 0 but following transplant sometime, she will become A . I will let you know more about that. If you are interested and have donated blood before at Florida Blood Services, please email me with your name, phone number for contact info and blood type. I will be making a list that I will then go hand in at Florida Blood Services. Once your name is on that lists, you will be able to donate a reserve for Katia. BUT FOR NOW PLEASE GO DONATE FOR THE GENERAL POPULATION. They really need the donations! You can keep up with what blood types are needed by going to the Florida Blood Services site and clicking on the "Current Blood Supply" link. It will show you what blood is currently needed. Right now, they are ALL needed.
Not much news on Katia right now. I will update more later:)
Love, Tracy




December 29, 2003 9:45 PM

Well it has taken me a while to come by here tonight for a few reasons but let me start by saying, Katia is sitting here happy watching a movie while I type, so don't worry about Ms. Katia. She did have her bone marrow aspirate done today and today was her LAST radiation treatment so we are really happy about that. The results from the Marrow won't be back for a week or more. They aren't just looking for remission but a reason behind the counts falling. She gets me nervous when her platelets are so low.

I have just been checking on some sites and also doing some research on a few different things going on. I have been just so (I don't want to upset-it is different than upset) about all the children that have recently passed away on these Caringbridge sites. I just have to say that I have grown in my life by knowing about each of these children and their families. I do get upset when I find out they are no longer on this earth with us but I take that risk when I get to know them. Nobody is promised tomorrow but I want to learn from everyone I know and everyone I meet. I think knowing people and how they feel makes each of us a better individual, more compassionate, more forgiving and more appreciative.

Not too long ago, we found out some friends of ours were expecting a baby, then just a week or so ago, they found out they were twins. The day after Christmas, these twins went to heaven due to complications. When I found out, I thought, what do I say? I mean I can't say I KNOW how they feel because I don't. I can't say the babies are better off because they would have had a fabulous life with their parents. I can't say the pain will go away, it won't. But I have to say something because they are dear to me. I remembered this poem that I read back when I first found Caringbridge and it says exactly what I needed to hear to be able to say something.






IT'S THE THOUGHT THAT COUNTS

Often in times of trouble
we don't know what to say,
So we choose to say nothing,
and sometimes run away.
When friends are really hurting,
we don't know what to do,
So we offer weak excuses
or say we're hurting too.

It really doesn't matter
what kind of gift we bring;
We only need to be there
if we don't bring a thing.

It truly is amazing
what a hug can do,
When heartache numbs the senses,
and friends depend on you.

There's comfort just in knowing
that you are not alone,
When tears are overflowing,
and hearts are cold as stone.

It's the loving prayers of others
that balance our accounts,
For when we measure love,
it's still the thought that counts.

By~ Clay Harrison





Please know that when it is hard to find the right words to say, just saying you don't know what to say is better than saying nothing at all.

God bless each of you. Hug your babies, your children, your spouse, your siblings, parents, even your co-workers. Each person in your life is there for a reason, even if it seems the reason is to just drive you insane. They are a part of your life and therefore a part of your soul.

"Night night, sleep tight, don't let the ladybugs bite."

I had to include that. I got a lot of emails about that:)




December 29, 2003 9:55 AM

Good morning:)
I think we are done with radiation treatments but they may add one more but today we had treatment number 7 and Katia did fine. She woke up pretty sick and throwing up and had the chills but right now, she is playing on her bed and happy.

Prayers is what gets Katia through everything. Prayers gets me through all of this and our whole family. Your prayers gives us all the needed strength to face each day.

I am not counting days right now but I think we around Day # 125 if I am correct. That is a lot of days but God is giving us the renewed strength each morning. I just look at the fact now we are about to move ahead and we can look for a light at the end of the tunnel. I pray that come April, Katia will be swinging on her swingset, playing in her ladybug tent and eating again in her own house:) I am focusing on that right now.

Well, of course, I will be back later to update as I learn more. I am pretty sure the bone marrow aspirate is already scheduled for today but I don't know what time so pray for good results but maybe something, simple, that will explain why her platelets keep going away. Her WBC came up a bit today to 1.52. Her hemoglobin dropped some more to 10.7 but that is not too bad but her platelets are now down to 24. She did not get a transfusion yesterday. I think they are wanting to give it to her today though before we have the bone marrow aspirate.

More later...

Love, Tracy




December 28, 2003 4:00 PM

Just a quick update. I am concerned because Katia's counts have dropped further this afternoon. Her WBC are down to 0.90. Hemoglobin about the same at 11.1. Platelets are down to 26 (she is about to get a transfusion since she had blood in her diaper) and her ANC is 657 which means she can catch anything very very easily now. The problem is WHY are the counts so low. Her immune system COULD be getting knocked down by the radiation since it is to her spinal column. The platelets? No idea. So she will have ANOTHER Bone Marrow Aspirate tomorrow to check for viruses in her marrow and to make sure she is still in remission. Man, this gets very nerve wracking always going up and down on this roller coaster. She is peppy and feeling great which makes her hard to keep still with such low platelets. She CANNOT bump her head! Okay, so that is my little update. I guess pray they find WHY her counts are dropping and pray that no sickness or viruses enter this room. We do not need any more problems. Also pray her lungs are holding their own. There will probably be a scan of those this week. If all is well with her marrow, the plan is to finish the radiation (maybe 2 more days, Monday and Tuesday) and then start with the conditioning treatments for the Transplant on the following Monday. Give her body a bit of a break and wait for results to come in from the Marrow Tests. Thank you for your prayers:)

Love, Tracy





December 28, 2003 11:10 AM

Good morning. Not much new in this area of the world. Katia is up and doing fine. No vomitting this morning. She is so happy right now and that just makes it harder to know she will be going through so much in the next week. I still am not sure exactly when she will be started on the next steps but I know it is this week. She has one more radiation treatment in the morning and it seems there was a 2 days break and then full speed ahead. I am SO nervous about all of this. Some kids do so great and others have such a hard time and I just pray she will do way better than I am expecting. My saying is "Expect the worse and pray for the best" so that is what I am doing. That helps me to handle things that come up without feeling like I was caught off-guard. I live with a guard up now. All the time. The sad thing, there are way too many people who understand exactly what I mean.

I hope to have all the details of dates and treatments some time tomorrow. I like to know all of the specifics. It appears the Urinary Tract Infection is better BUT her counts are still dropping.

Her White Blood Cells are down to 1.39 (normal 4.0-12.0). Her hemoglobin is still holding due to the blood transfusion at 11.2 (normal is 11.5-14.5). Her platelets are now down to 30 (normal being 150-450)
This wouldn't concern me too much if she had chemo recently but she hasn't and the radiation shouldn't be affecting her counts like this so....
We wait to see why they are dropping.

That is about it for now. She is about to be "free" (unplugged from her IV pole) so I need to prepare a little. I always like to clean the floor and wipe down her toys (although I do that each night after she is asleep). I am determined to keep the germies away from Katia:)

Love, Tracy



*******



December 27, 2003 10:38 PM

Good evening. We had a good day. Katia enjoyed her room and playing. I brought her a few more of her Christmas toys that I had cleaned. I never realized what would be involved in the cleaning process. What I will do is cycle toys in and out between here and the Ronald McDonald House. That way, there is not a whole lot here to have to clean and move around. I am just waiting to see what they mean by taking EVERYTHING out of the room every 7 days to "terminally clean" the room. Right now, I am trying to keep everything in plastic bins and that seems to be a great way for me to keep things picked up and organized and control dust (why do hospitals have so much dust?)

Anyway, Ms. Katia is beginning to suck that thumb again so once again, I am the THUMB POLICE! We just can't have that getting messed up again. No way! That would just be too much to deal with right now and throughout transplant. No extra problems needed!

I do like the room we are in. It is close to the nurses station but it is very quiet, too quiet (as Shrek would say). The room is the same as the last one, just a bit bigger.

Katia enjoys her little play area and isn't TOO bothered by not having her stuffed animals. She did ask Tatiana about them tonight. Tatiana is doing a good job "babysitting" them for her. There are a LOT to babysit!!! The animals need their own house.

Well, that is about all for now. Let's please pray that things on Caringbridge will go well this week and next week...
There has just been way too many kids passing away. There are so many kids all over the globe and so many adults fighting for their lives. I can't believe I didn't know more about all of this until Katia was diagnosed. I guess I hear so much now because I am surrounded by it day in and day out but there are definitely many people awaiting a cure.

Good night, sleep tight and don't let the ladybugs bite! (That is what I tell Katia each night- she answers me back, "Ladybugs don't bite".)

Love, Tracy




December 27, 2003 11:20 AM

I have just learned that Max too has gone to heaven. That is 2 precious children passing away in just two days. There links are above in the prayer request section. There has to be a cure out there just waiting to be found. We were looking for a needle in a haystack for Katia's match and we have that now we have to keep looking for a CURE! Nobody will rest until a cure is found. When you hear of someone raising funds to participate in marathon for the Cancer Societies, Leukemia Societies, Research Funding, etc., please try to help in any small way. It is amazing how it is the smallest contributions that really add up. I know this Caringbridge is looking for some help to finish off their funding needs for the year and I think each of us know how important Caringbridge has been for our family and so many other families. Thank you so much for those of you who have made contributions and the contributions in honor of Katia. They do mail us a letter. They don't say WHO the contribution came from but they do say it was made in Honor of Katia. Thank you. Thank you to those who have visited the The Katia Solomon Fund page and made contributions. All of these types of things are going to very good causes whether it be to help current patients, research, marrow drive funding, etc. We always tend to ask ourselves why God makes us face certain trials and hardships in life and I believe our family's mission is to find creative ways to help spread the message of the need for marrow donors.

Katia is doing okay this morning. She had a rough evening but then had a restful night. This morning she was vomitting but that is cleared up now too. She has discovered how to work the TV remote right now!!! So she is flipping and flipping channels! She feels so independent.

I will post some new pictures of the room soon. We need to personalize her walls some with posters of the cartoons and Disney Princesses she loves so much. Right now they are WHITE!! Very very white!

Thank you to each of you for continuing your prayers for Katia and our family. When I think about it, that is what allows me to have such a possitive attitude through this is the prayers praying for me to face each new day with a good and heartfelt attitude. Of course, our cyber family is a HUGE part of this whole fight for Katia!

Well I better sum this up before MS. Katia either breaks the remote or hurts her thumb from pushing it so much:)

Love, Tracy

PS Thank you to those who send me the emails updating me on the conditions of the kids I post prayer request. It breaks my heart to have a message comes in but I also appreciate your letting me know.



December 26, 2003 10:37 PM

Thankyou for the guestbook entries!!!

First, I want to share Myron's because it does sum up yesterday in a very nice way and yesterday was special to ALL of us.


Season Greetings again to everyone! What a delightful day! A day filled with so many different types of emotions. Joy,laughter,and also some hidden tears...
I am so grateful to have been able to spend a cozy, warm Christmas with my girls. This day was made very special for many reasons. For one, it was so invigorating to see Katia shine as we walked out of the hospital to go to the Ronald Macdonald House! She is such a wonderful Baby! Katia is purity in the greatest sense! She is so easy to please, she is content as long as her family is with her. It broke us all to have to take her back to her room...but she was tired from opening gifts and playing... it took only a few verses of some Christmas carols at she was fast asleep... She still loves to hear her daddy sing to her...I love her so much!... beyond belief.
Thank you so much to all of you who made today a brighter day for all of us. The gifts, the cards, we are truly blessed by your love. Sharayah and Tatiana will sleep with big smiles on their faces tonight! They truly had a wonderful day. I am so very nervous about what lies ahead, but I know God will continue to heal, comfort and give strength as the days go bye. Once again, know how much you mean to this family, our love thoughts and prayers are with you every day. Merry Christmas. Luv, Myron
Myron Solomon
Tampa, Fl USA - Thursday, December 25, 2003 10:24 PM CST


Also, a few have asked for the room number of the new room. There is no need for a number but it is still on 2SW. Even if you don't note that, the mail gets to her perfectly fine.

She cannot have any stuffed animals anymore or dolls with hair or clothes. Everything has to be plastic or such so it can be wiped down with the solution we have to use. Her big horse and ladybug is now being babysat by Tatiana:) Katia appointed her for this job. Her room is pretty bare looking right now, all WHITE walls! Love, Tracy





December 26, 2003 10:17

What a busy busy day! We are in our "new blood" room! Katia is very excited and eager to move ahead. I have to slow her down some. She slept most of the afternoon (throughout the whole move) and then when she woke up, she had some fun looking around the room and then just started throwing up and having serious runs. Everything was coming out of everywhere!! We got her cleaned up and she seems just fine now. She hadn't used the bathroom for 12 days until she finally went some yesterday. She was on a laxative so I think we will discontinue that!

She is watching Shrek right now and although I am sore and tired, I am happy to have moved the next step forward. I still feel quite anxious but I do feel all is going to be okay. Things may be very hard for a while but I truly feel Katia will do better than we expect.

There are a few changes above in the prayer request. I hadn't check email all day and I just learned Nicholas C. has become an angel and sweet Max is just really not doing well at all. Please visit their pages if you get a chance. The links are above.

God bless each of you. I am heading to the guestbook. I haven't been there all day and the encouraging messages bring a smile to my face and a song to my heart! Love, Tracy





December 26, 2003 2:45 PM
Wow, it is late already and I am just updating! This day has been busy since 6:00 AM. All is well here. We just got up to do radiation this morning and that all went well (man, that seems like it was 12 hours ago since we have been so busy). We are about to start moving rooms right now so I am glad I am sitting and updating before I get completely busy. I cleaned a lot of stuff last night so I am mainly going to just be transferring a lot of stuff. I feel like I am babbling but I just have so much racing through my mind of all of the upcoming days and events. I am so nervous but yet so anxious. Katia is also very ready to move on. She just wants that "new blood" and to do what she has to do.

Hopefully, when I update later, I am done moving Katia over to transplant and we are settled:)

Love, Tracy



December 25, 2003 7:30 PM

Well we had an absolutely wonderful day:)
I will add new pictures when I am done with this update (if I don't get clicked off). I have updated a few times but I keep getting knocked off and actually having to restart the computer.

Enough of that, I am wasting time:)

We had a glorious day! Katia woke up to presents waiting for her from the hospital. All of the kids on the floor received presents. That was nice. I told Katia Santa came in via the air vent in her room. She believed that because her horse on the end of her bed was about to fall off and she said Santa must have fallen on him. I have to say All Children's Hospital and its staff really did all they could to make the day pleasant for everyone who had to be here. Our neighbor was taken to ICU this morning and I felt so bad. I hated to see that happen this morning. I really wonder how she is doing.

We then waited for Katia to finish her IVs this morning and she was free around 10:30 AM so off we were to Ronald McDonald House. She was SOOOOO happy in the car (there will be a picture of that). I normally walk but she wanted to take the car. She was just about to jump out of her skin with happiness to be outside and looking at the trees and everything. On our way to the car, we stopped and looked at some of the Christmas decorations in the front lawn of the hospital.

Well we got to RMH and she wanted to "buy" the tree in front of RMH. She was just that happy to be outside so we stopped and enjoyed the outdoors for a bit.

We went in and saw the little Christmas village set up in the front room of RMH and the big Christmas tree.

We went up to our room and Katia saw her presents (thank you to each of you!). She just had a lot of fun first of all just walking around and picking up some of the unwrapped stuff. She really had a lot of fun opening the presents, as well as Sharayah and Tatiana. I was so happy to see them happy. Myron and I got a few gifts and we all just had a wonderful wonderful couple of hours playing around and then cleaning up:) Our family likes to clean up!

We had a fabulous meal downstairs (Katia didn't want anything but water) and then we were off back to the hospital where I am right now. Myron is here singing Katia Christmas songs and she is getting her meds again. She has a cough but she has been coming down with a slight cold. She will be having wonderful dreams tonight I am sure and tomorrow we will start transferring rooms. I plan for her to move over to the room late tomorrow night probably after she is asleep so she can just wake up in there and not get stressed out about the move. I don't know, I will see.

I want to thank each and everyone of you for checking on us, praying for us, sending cards and gifts and just everything you do. You are each so very very special. If you are reading this, tell yourself, "I am a special special person to the Solomon Family." You are!

Enjoy the pictures, I will probably change them late tomorrow again with a few more:)

Love, Tracy




December 25, 2003 8:00 AM

Merry Christmas to all!!!!!

Good morning. My little one is still sleeping so I thought I would update really quick while I have a chance. We are definitely planning on getting out of here for a few hours with Katia to the Ronald McDonald House to open her presents:) I want to thank each of you that mailed a package to the girls. You are wonderful. I normally respond to all mail but I know I haven't personally emailed some of you and I feel so bad about that. We haven't had any mail problems so I am sure each package is getting here. THANK YOU! THANK YOU! THANK YOU!!

I cannot say how each of you have made this Christmas special for our family. Your friendships, concern, loyalty to check this page and my VERY LONG updates, emails, cards, packages, just everything!!! I am so touched in my heart that it keeps giving me a positive attitude each day. You are each like my dose of "daisy positive medicines". I need you and I appreciate your willingness to be there for us.

I have met some very special people throughout 2003 and I have seen some very special people pass away. It leaves me with such mixed emotions. Yesterday as I walked back and forth between the hospital and RMH I was just thinking and found myself smiling or tearing up just recollecting my thoughts from this past year. So much has happened since last Christmas. Not just for me, but a lot of people.

I saw the Bayfront Medical Hellicopter bring in someone late in the afternoon and my heart sank as I thought how their holiday would be spent fighting for their life.

I pray each day for a lot of things but this year I pray for all my wonderful new friends and their families. I pray for all of these special children that they may see many more Christmases to come and be able to run and jump and go to school, learn to read, ride bikes, leave fingerprints ALL OVER THE HOUSE, eat 20 times a day, take bubble baths and play outside, just everything!!!

I have each of you in my heart today and I have my wonderful little family all together today. My heart is smiling:)

Love, Tracy





December 24, 2003 6:48 PM

This is from Myron. I thought I would put it here since it is to each of you.




Merry Christmas every one! and a very happy Holiday Season!
We enter this holiday season with lots of optimism and hope, for a new year filled with miracles! I was walking around the stores today, doing some last minute shopping for the family, I must admit I felt a little sad... I just kept wishing that Katia was sitting in the child seat of my shopping cart, and not locked away in a hospital room, waiting to face the most difficult days of her little life. I know! I need to be positive, and not get depressed! God has blessed this family so much, it is really wrong to complain. I am looking forward to Christmas morning with the Girls, as unconventional as the setting may be. I would like to send a word of thanks to all of you who have sent gifts, and sent your love and kind words of encouragement to keep the Solomon Family focused. We are so very grateful for each and every one of you. You truly are part of our family! All of us will make sure that Katia and sisters have a wonderful, wonderful day! I know that you are all aware of what the upcoming days mean for Katia, and I know we can count on your prayers and continuous words of encouragement. Thank you from the bottom of my heart. I truly love you all, and wish that no matter where you are, you will find peace, and feel the love of those around you, and in return you will share your love... God bless you... Merry Christmas. Love, Myron






December 24, 2003 4:00 PM

Good afternoon. Our day seems to be improving. Katia has received her blood transfusion. she isn't too energetic today but that is probably due to the radiation. I am trying to keep her quiet today so she will have fun tomorrow but she is 3, need I say more?

I was emailed a prayer request for a little boy, Craig so maybe you can drop by his page and just say hello. From what I understand he is going through a hard time right now with his chemo.

Also, I have just been introduced to a little boy Cade. He just had a bone marrow transplant 5 days ago. If you can, drop by. I will definitely be following his progress as Katia goes into this.

We hope to still spend a few hours tomorrow at the Ronald McDonald house. Katia is getting very very anxious!!!!! I am glad to see THAT! She is being a typical three year old:)

The hospital seems quiet today which is good. I keep getting these sad looks when people realize we will be here for Christmas but, truly, all I can think about is I am glad to have Katia here and feeling as good as she does. I feel so bad for all of the families that have lost loved ones, not just this year but over the last few years. I am sure the pain is still there. Katia has some very rough days ahead but today, she is feeling good for the most part and for that I am so very very thankful!!

I am thankful for YOU for taking the time to come by and check on us:) It is like spending Christmas with my great big cyber family:)

Love, Tracy







December 24, 2003 9:21 AM
Merry Christmas Eve!!
We are kind of off to a rough start today. Katia's counts have dropped quite a bit over night and we thought there would be some improvement today. Her WBC is down to 1.53 (normal 4.0-12.0) which means she is very risky at getting sick or her lungs messing up again. Her hemoglobin is 7.6 (normal being 11.5-14.5) and she will be getting a transfusion this morning. Her platelets are down to 47(normal being 150-450) and she is quite bruised up around her arms and legs mainly. Her urine is coming back with high counts for a gram negative infection but we aren't sure yet which one. We should know more this afternoon. Katia is pretty much out of energy, says her leg is hurting, her head is hurting and she is very very irritated right now. I PRAY THIS DAY WILL IMPROVE! It will, it usually does. We are wanting to take her over to the Ronald McDonald House tomorrow (completely wrapped up from head to toe in a gown and with a hat and mask-only to her room there) and let her sit on a real bed and open her gifts. If that doesn't work out then, we will bring her gifts here. The plan is to move over to transplant on Friday evening which will be a big task of wiping everything down to sterilize it:) That should be a load of fun. But it will be nice to get over there and get settled in. I am needing to get a few things when I get over there, some plastic storage bins, plastic drawers and just a few things to help me organize. They now take EVERYTHING (all furniture-bed included)out of the room every 7 days and sterilize the room and bring in all new furniture. It is nice they do that because cleanliness is next to Godliness with no immune system. I just want to make it easy to do that transition each week and the best way to do it is to have everything put away in bins and not out and about.

Well Grandpa is headed over here for a little while today so I wanted to update before the morning escaped me. Then Myron and the girls will be over here in the afternoon and back here very early in the morning. I want them here when Katia wakes up so she is happy from the time her eyes open. We normally have a lot of fun on Christmas morning just in the happiness of getting up and going around the house. I always used to do dinner on Christmas Eve so Christmas could be fun and relaxing and not too much added stuff going on.

I pray each of you are having a nice day today and a safe and happy holiday. Of course, I will be updating like normal today and tomorrow so I will chat later:) Love, Tracy





December 23, 2003 8:13PM

I am going to be adding a few links as I go along about transplant, infection contol (this is for all cancer patients) and just new things I can come up with. I research a lot of different things and I figure I will share them as I go along. So the new section will be above in the long run but for now, I will just add them in the journal updates as I go along. Today's is about Infection Control. This is a very important thing in Katia's case because infections are so dangerous to cancer patients but moreso for transplant patients and for a more extended amount of time.

Katia is doing okay tonight. I hate to say this but Katia hit her head again today and this time was much harder than the last. She is fine now but her platelets are so low that we were very worried. Her count is 49 (normal is 150-450) Her hemoglobin today is 8.2 (normal is 11.5-14.5) Her white blood cells are down to 2.47 (normal is 4.0-5.3) This information (the normal levels will be in the mentioned section also:)

We think we may know why her counts are dropping. She has a pretty significant urinary tract infection so she is on antibiotics for that. That is why she has been in pain.

Sharayah and Tatiana are playing with her right now. Katia is so EAGER for Christmas and I just have to THANK EVERYONE who has been sending the girls presents!!! This Christmas will be wonderful in so many ways for our family. I praise God we can be together and that Katia is feeling well and should enjoy the holidays. Right after the holidays, she will be back on chemo preparing for transplant and although we are so looking forward to getting her on the road to recovery, we have a VERY LONG road ahead of us and Katia will get very sick before she gets better. She is asking questions on and off which let me know she understands a lot more than she is given credit for. She is very smart about her condition. I told her after she gets her new blood, we will be spending a lot of quiet time watching DVDs and reading books and playing with things on her bed. She may not feel too good but she has to let her body rest and do what it needs to do. She is like, "Okay Mommy." Boy do I love this little baby!!! I am so blessed to be her mommy and I just want her to get better so she can do normal little girl things (although Katia will always be so special).

Well, my computer is not too friendly right now so I better not push my luck here:)

Love, Tracy




December 23, 2003 12:08 PM
Sorry to be so late:)
I have been trying to update on my laptop but I keep getting knocked off. I NEED TO GO ADD MEMORY. I know that but I just have to do it sometime when I go to Tampa and can just take it and wait. I can't imagine not having my computer for a few days. So, bare with me, I am working on it. I am not sure why it is so tempermental sometimes and other times it does okay.

Anyway, enough computer talk:)

Katia had treatment 4 of 7 for her radiation. She did great today, no vomiting (knock on wood) and is up and at it already. She is still plugged in for the moment. I came over to the Ronald McDonald House to do laundry. Some people that saw Katia's story on the news dropped off a very nice ladybug quilt and I am washing it. I have already started washing all of Katia's things for transplant. We are planning to move on the 26th over to the new room. I was talking to Katia today about her "new blood". She thinks she goes home right after and I said, "No, your new blood has to travel all through your body and introduce itself to all your fingers and toes and ears and your heart and mind." I said, "That is going to take some time but we want your body to feel good about its new blood. You may get pretty sick and have a sore body for a while but that is because your new blood is working really fast and running around in there so we can get home." She accepts that explination happily:)

It is really hard to talk to Katia about things because although I want her to know what is ahead, I want her to enjoy each hour of every day and not be scared.

She can't wait until Christmas! She keeps seeing things on TV to tell Santa about...

Well, I am not going to make this too long. I need to finish up and get back over there. She has a red mark on her head close to where she bumped it the other day so I need to point that out to her doctor. Mind you back in January 2002 when she hit her head, her eye is what ended up with the tumor made of blood vessels so I need to mention that to them. I hope the blood from the fall is traveling and causing any problems. Same thing as when she hit her head back in 2002, no real mark came up like I would have thought from the bump so...

I will update later. Don't worry, I will figure out how to. The story of Katia continues....

(I like that)

Love, Tracy




******


December 22, 2003 10:15 PM
Hello:) Katia is asleep and hopefully she will sleep through the night. Last night she woke up at 4:00 AM to watch a movie and question me the whole way through the movie:) I did get to doze on and off though.

Tomorrow is radiation treatment 4 of 7. We will finish these on the 29th due to a break on Christmas day and no radiation on the weekend. She seems to be handling the radiation okay, not great, but okay. She does get headaches and she does vomit some but I have seen worse.

Katia had a fun evening playing with this volunteer girl. I like when the volunteers will spend some time with Katia because as much as I know she loves spending time with her family and nurses, it is nice to see new people.

Please say a prayer for Tatiana. She has been having regular headaches since right before Thanksgiving (though I didn't know much about it) so we will probably see how tomorrow goes and take her in. She will be here with me most of the afternoon so I will see. I hate to see her with headaches because they really can just be so annoying and Tatiana is the type to worry so much over things like this. She really doesn't like going to the doctors, running tests or even taking medicine. It takes a lot for her to complain.

I am going to try to spend a little time (you know all the extra time I have) on a little project so I can share it on the page but I am not sure even if it is possible. I am determined to try though. I will let you know more later. Don't you hate when I do that?

Well, that is about all for now. Katia is asleep and although it takes me a few hours to drop off to sleep, I do like to stop and just relax when I can. I know we have some very busy days and sleepless nights ahead of us. God bless each of you.

Love, Tracy






December 22, 2003 10:32 AM

Good morning:)
Our morning is going along. We had a rough start after radiation with some vomiting but that has stopped now. Katia woke up at 4:30 this morning and decided she wanted to watch a movie so she did and stayed awake. She slept a little after we came back but now she is up. She will be plugged in for a while still to her nutrition so she isn't too happy about that.

Other than that, not much has changed. We are having to get some urine test this morning because she is complaining of pain when she pees. Actually that is what woke her up so early and she couldn't go back to sleep. She was crying and then finally she calmed down watching the movie. I kind of dozed in and out a little but I am still a little zonked feeling:)

Have a great day and be safe while you are out and about. Stay away from the FLU. Love, Tracy





December 21, 2003 8:00 PM

Myron and the girls just left and I already miss them being here.
Tomorrow we start with radiation again so our day will start around 6:00 AM. I am looking forward to getting the treatments out of the way. Katia's cold doesn't sound too bad so I think she will be able to go through with her treatments. She did fall and hit her head today! Big scare! It doesn't look bad at all though. They ran some labs to check her platelets which are low and we put some ice on her head. She makes me nervous when her platelets are low. Right now she is riding "Spirit" her big stuffed horse and watching the movie and I am here typing, not too smart but I am right next to the bed and the rails are up. She is mainly just sitting up there.

This week has been really hard for our Caringbridge family with so many recent losses. It really saddens me to think about all of those people I have kept up with that have recently gone to be with Jesus. I learned last night that Sean Flanagan has passed away in the last couple of days. I have lost track of people I used to check on daily and I feel so bad about that.

Please, if you know of something going on that someone needs prayers, let me know via email. I do check my emails reguarly. I am having a very hard time with e-cards so I am unable to open them. I know they must be very nice but until I add memory, I just have to delete them. Sorry.

I want to thank those of you who have sent Sharayah, Tatiana and Katia Christmas cards and gifts. It is amazing! This Christmas has so much love involved and it will be a wonderful Christmas. We will be here but that is okay. We will be together! That is what counts. We can be happy and take pictures and just be a family. They say "Home is where you hang your hat". Well Katia's is "Home is where you hang your meds". We will do whatever it takes to get her healthy and back home.

Well, thank you so much for all of your visits and your love and compassion! We love you! Love, Tracy





December 21, 2003 9:50 AM

Good morning to you from us:)
We had a nice night of sleep and Katia is in a very nice mood this morning- she is Pooh Bear today!

She is coming down with a cold so we are staying behind it so she doesn't have a chance to get stuffy. If she is stuffy, she can't be sedated so she can't get her radiation treatments. We don't want to have anything pushing the transplant date further away so pray her head and chest stay cleared.

Last night I found out that a family who had been here for so long with their little son fighting cancer - he lost his battle about 2 months back- lost their house last night to fire. I can't believe that!!! I mean they have been through so much. They were able to recover some pictures of him. How much can one family take?

I just try to find blessings to count each day because like I have said before, there is always people that are fighting a harder battle. I have a great family that is so helpful. Myron and the girls have just been so supportive and have kept the house running, school running, and just everything going while I am here with Katia. I am so very thankful for that:)

Katia has a wonderful attitude each day (well most days) and that helps me to get through each day. This would be so much harder if she was always crying and begging to go home. She WANTS to go home but she says she can't until she gets her "new blood". Well we are closer to getting her "new blood"!
She doesn't realize that because it is too many days away for me to tell her yet. She will find out more when we move to "new blood area" (the transplant rooms) and that is when we will do a countdown by crossing off a calendar. We have to get through all of the radiation first and make sure we are on a steady track.

Well, have a nice Sunday and enjoy these last few days before Christmas. All of the sudden Christmas Day is here and gone and we don't get to enjoy it. So much time has gone into shopping that we haven't stopped to realize what Christmas is all about. Love, Tracy





December 20, 2003 11:30 PM

Please excuse my very late update. I have been having computer troubles on and off and have just been trying to get things straightened out.
Please pray for Michelle. She is a teenager with neuroblastoma. She has been fighting for quite sometime and her Mom, Jacqui has been by her side throughout. Things are not well for Michelle and I know they could both really use your prayers and encouragment. So many need prayers right now. Too many.

I have just received an email about another little boy needing prayers through this holiday season. I know God hears EVERY prayer and our Caringbridge friends and family sure send a lot. This little boy is, Nicholas C. and he is also fighting Neuroblastoma. He really needs prayers right now. He has just been too weak to even open presents.

On to Katia. She had a good evening and is now resting. I count our blessings for Katia being so happy and healthy right now and on her way to transplant. That is due to prayers and God's love and compassion. I am so grateful for those of you who come by here and lift up Katia's name in prayers. I am so thankful for those of you who leave us words of encouragment. I am so thankful for those who mail cards and packages. I have a lot to be thankful for. I am so thankful that we will soon be giving Katia her second chance at life and give us hope we can tightly hold on to.

Love, Tracy





December 20, 2003 10:30 AM
Good morning:)
I just sat down and read a lot of the guestbook entries, all the way through about a month ago. I read them each day but I just went back and reread a bunch and we have been so blessed to meet so many wonderful people!! It is so amazing how this little 30 pound person, Katia, has brought so many people together and, through such a hard time in life, has kept things going along so positively. She always has a smile to share:)

Last night, the news covered the story about her upcoming transplant so I am placing some of the links above in the links section of the page. Here are two of them. One is a Tampa Tribune Article and the other is one of the News Videos from last night.

I want to thank our friends in the media for covering Katia's story all along and for always helping us to spread the word about the need for Registered Marrow Donors. That need continues for many.

Below are the links from last night.

DECEMBER 20, 2003 TAMPA TRIBUNE ARTICLE "KATIA'S PARENTS HAVE HOPE"


CHANNEL 10 NEWS VIDEO DECEMBER 19, 2003



Love, Tracy





December 19, 2003 9:44 PM
WOW, I am tired!!! What a long day but a good kind of long day. It started early with radiation and ended with us doing the news updates letting everyone know about Katia's upcoming transplant. I have to say that so many people came forward and registered and we pray people will continue to register and continue to help people find matches because, like Katia, so many people are awaiting matches and the longer the wait the more the risk is for another relapse.
I will try to add the links for any online editions of the news segments tomorrow. They won't post until late tonight and I have to call it a night right now. I am going to watch the news but I have to lay down. My back is very very sore.

Okay, to answer a few guestbook questions...
Yes, I am still going outside for fresh (colder) air each day, thank you:)

The match is a 5/6 cord blood (I think that answers someone's question as to whether it was a cord)

Yes, all my booboos from Katia kicking me are feeling better. I know she didn't mean it and she gave me tons of kisses last night when she was back to her "real self".

I can't think clearly but I think that answers most of the things I saw in there. I do try to answer things or if I can, drop an email but sometimes days are so foggy because of so much going on. I am very anxious about the upcoming days. I don't know what lies ahead but I know this is a must so we can take our baby home! Love, Tracy



December 19, 2003 2:19 PM

Update on transplant info as I know it.
Set date as of now is January 13, 2003 for Katia to get her new blood.

When she is done with her brain and CNS radiations, she will start her conditioning treatments for her transplant. I will try to start the countdown here in the next few days.

We are very very happy to be moving ahead and Katia is doing very well after day 2 of radiation.

I want to thank everyone who has participated with all of the Marrow drives in Tampa and surrounding areas and even in outside states.

We will be using a 5/6 cord blood which will have a good cell count for the transplant. The ONLY downside to this cord is there will be none left over for a boost. What does that mean? Katia HAS to graft and become 100 percent donor cells. There will be no second chances. IF for some reason it doesn't graft, we have to find another marrow donor instead of being able to use left over cord blood. So, of course our prayer.... KATIA ENGRAFTS AND DOES JUST SUPER!!!! I believe Katia can pull through this and smile the whole way:)

We know she will have many sick days in the days to come, she will feel really bad but I think she understands that is part of getting better. Our biggest concern of course is her lungs and any viruses she has flaring up.

BUT, for now we will just move ahead and keep on praying that God will CONTINUE to work miracles with and through Katia!!!


Love, Tracy
PS See how good your prayers have worked!!! Pray she will engraft.




December 19, 2003 10:20 AM
Not too long of an update here. Thank you to those of you who visited Jacob's site. I have just learned he became an Angel. I really hate this. There are just so many doing so poorly right now and that breaks my heart! I never thought I would be so well informed about Cancer and all of the patients fighting so many horrible diseases. I just never thought this would be my world. I pray that God will always give me the strength to not only fight but to help others along the way fight their fight when they needed added strength and enouragment.

On a very good note, Katia is still in remission!!! They checked her marrow and it looks really good. I was worried because of her counts dropping so now they are going to do some more labs looking for viruses that can be causing this but nothing should be slowing down our road to transplant.

She had her second radiation treatment today and that also went well. She is awake right now and doing okay, quite grumpy from sedation but that is expected. No throwing up (pray it stays that way) and she is doing fine. She did have a rough end to her night last night with pain and throwing up but she ended up sleeping well, only waking up a couple of times.

My little baby has taught me so much about endurance!!!! I mean, this little kid is tough and endures so much and then when she feels good, she plays like nothing is wrong even though she fully understands she will have to repeat these procedures again and again.

Well, I think that is all for now. I will probably update more part way through the day and then this evening too because there really are so many things going on right now.

Have a very safe and joy-filled day and hug your family really tight! Love, Tracy





December 18, 2003 9:40 PM
Please pray for Little Jacob. He was just brought to my attention via an email to add him to our prayer list but I want to make an extra note here. He is not doing well at all and was diagnosed in 2000 with neuroblastoma stageIII but now he has definitely taken a turn for the worst. They are praying he will be with his family and enjoy Christmas and his birthday. This child is just so cute so stop by his page and try to let them know you were there. Thank you so very much.



December 18, 2003 5:20 PM

Hectic Day Follows!
This morning we had an appointment with radiation to do the radiation simulation which is just measuring and preparing for Katia's central nervous system radiation. Well that should take about 30 minutes and Katia has to be sedated for the measuring and marking. Well about an hour later, I am thinking something is going on because I haven't heard anything and they kept calling different doctors and nurses to the simulation room. So I go to find out what is going on and they had decided to go ahead and do the first radiation treatment. That would be fine other than the fact Katia doesn't do well with the sedation they were using for long periods of time. She ended up being asleep for almost 2 hours and woke up really bad from it. She screamed and threw herself around all the way back from the radiation to her room and then kicked and screamed for about an hour or so after we returned to her room. I got a good kick in my head and a very hard one in my right arm (which are both feeling pretty bad still!) I feel so bad because I know it is a horrible feeling for her when she has been under that sedation that long to wake back up. Finally she fell back asleep after getting some Benedryl to control nausea. She will get the next 7 treatments over the next few days or so. She won't have any on Christmas or Saturday and Sunday. Those will only last 20 minutes or so. Tomorrow she will also have to have her marrow checked again since her hemoglobin and platelets have been dropping. I don't know what to expect from that. I may or may not update more tonight. I am just sore and worn out right now and there is just so much going on. The last CMV test came back negative and it seems the reading of the positive was just an oversight or mistake but whatever it was, she is negative on that so that is great news. We are still waiting for most everything else to come in. I am just glad to be proceeding but I am just a bundle of nerves right now. I have been praying on and off all day for peace of mind and I must say, God has granted me that for the most part. I am sure tomorrow will be hectic since we have the bone marrow aspirate but after that, things hopefully will calm some. Please pray for Katia to do well throughout her radiation treatments and that it is taking care of any leukemia hanging around. I will try to come back later in the night or in the morning with a more positive note but today did start out with me learning about Angel Dustin and that just hit me very hard. I was very hopeful for him. Love, Tracy





December 18, 2003 9:38 AM

I am so saddened to hear that Dustin L has now become an Angel. Even though he has been sick, that really caught me off guard. So please drop by Angel Dustin's site and leave some encouraging words for his parents and family. I am so sure Dustin is already being missed so much.

December 17, 2003 7:11 PM

Do you notice my updates are night aren't so late? I am trying to end the evenings a little early even if I don't go to sleep until midnight:)

Okay, well today was pretty tiring but we are slowly but surely moving along.

Katia is positive for CMV (a viral infection). We didn't find that out until late this afternoon so I am not sure exactly what we will be doing about it medicine wise as of yet. It does have to be treated because it can cause her to reject the marrow. I asked the doctor if this was something she would have caught and she said, yes. People can have CMV, that have normal immune systems, and just not know they have it or maybe just have a slightly runny nose or something. But, it still can get to Katia. So it did.

They have a name now for the fungus in her lungs but I actually forget what it was BUT they will be treating it throughout transplant so hopefully it will stay from flaring back up.

She is also testing positive for a type of HSV. This is something she actually also had when originally diagnosed. It is also a viral infection. This also needs to be treated. For the normal person, it would just maybe cause a problem like a cold sore but for people with low immune systems, again it can cause more problems.

Let's see what else?

Okay, the radiation. They aren't planning to do full body radiation. This is something they are just now changing, so for Katia they will be doing Busulfan. Then they will use as a conditioning treatment, Cytoxan and ATG. As for radiation, Katia will be having 7 days of brain radiation probably starting that on Friday. We can do that ahead of time. They could have done it a few months back when she first relapsed but they wanted her brain to develop as much as possible before radiating the brain.

We went over all of the side effects of everything which needless to say, along with all of the "what may happens", it makes us just want to run but this is our only choice.

Most of the rest of the questions and answers will come in Friday or Monday or later. It looks as though the radiation treatments will be going on through the holidays though but that is just one time a day.

WHAT A LOT OF STUFF TO TAKE IN!!!!!

We have some questions that came up today because of some misunderstandings so that has me a little concerned on the treatments so there is possibly more changes that will have to take place. They are pretty big things that HAVE to be considered in Katia's case.
At this point, it looks to be the cord we are going for which I am happy with the cord, it is 5/6 match which is good BUT THE PROBLEM IS THERE IS NOT ENOUGH FOR A BOOST. Why is this a problem? Well, if for some reason (and there is a good chance this could happen) that Katia doesn't start to engraft or the graft starts to fail, there is no boost. It would mean looking for another donor and well, that is like being back at ground zero. So, for this reason, we are still moving forward with drives, not only for Katia but to just get the registry more supplied for anyone coming to look for a match. No one should ever have to wait for a match. I am glad there is something close enough for Katia, this may be the perfect cord that God set aside for Katia, that is our prayer.

Are you worn out by reading this? I am! It is a lot to take in, I know. There are still some decisions we need to make but we are trying to move ahead when it seems possible to get certain things done and out of the way. There are a lot of labs we are waiting to hear back from, some discussions that need to be had with us and doctors and some between the doctors and other doctors. Just please pray this will come together and we will have more definite answers.

I have to thank each of you that continue to check in on Katia and for all of you who have been (and will keep on) telling those you meet about signing up for the registry. Please pray that Katia's lungs will stay in good condition. Please pray the CMV and the HSV will not flare up and cause problems. Pray for us to be able to make the right decisions and the doctors too:) We have put this in God's hands.

Love, Tracy



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December 17, 2003 9:00 AM

Good morning all:)

We are up and going, well I am up and going. Katia is still asleep. Again, her counts have fallen some so I am expecting her to not have as much energy today. We will see. She is full of surprises. When her platelets are low, I worry when she is too active that she will fall and get hurt. She isn't low enough for a transfusion so I am glad about that. Still no answers are the CMV virus.
Her last diaper sent came back negative so that is good. One more and she can roam the hospital floor again, BUT, I will probably not let her due to the fact of so many viruses going around, I do not need her to get sick and delay things. I don't need her with the least little problem right now. She doesn't complain about being here and we just have a little longer to go, I hope.

Last night a band came up and played Christmas music. That was really nice. We did get to go watch them. They were just 2 doors down outside of our room but I held Katia with me the whole time so she couldn't touch anything. She was singing and blowing on a kazoo to the music. She had a lot of fun.

Well, I had something else to say, but I have forgotten. You see why I keep a journal? I can't remember beans!

Love, Tracy

PS I remember! You notice I made the journal fonts all black? I did that so I can use some other backgrounds and it makes it hard to read certain colors of type. So, I figured I would let you know it is not a mistake:)




December 16, 2003 6:19 PM

Again, Ms. Katia is asleep early BUT she did wake back up last night. They were taking her blood pressure a few times in a row because it gets low. It will be around 74/38 and for Katia that is okay but nurses that have not had her much think that is too low. That again happened this morning and she woke up very mad at 5AM so this has been a long day:)

No news on any labs back. She didn't even have her regular labs drawn today so I don't know a whole lot of info, really nothing new.

I want to thank those of you mailing Katia, Sharayah and Tatiana presents. You may not ever know how much that is appreciated. WE REALLY APPRECIATE your help in keeping Christmas alive. I couldn't imagine how we would be worrying about Christmas shopping right now. We are never ones to go overboard for Christmas but we do like to give the kids a fun and memorable day whenever that is possible and for Katia this year, we ALL just want to see her so so so happy. She is very eager for Christmas to get here. She is being extra extra good!!!

Well, I probably won't update anymore tonight. I have been really trying to organize things, a lot of things including my time so I can have some peace and quiet each day and not be busy until the time my eyes close and as soon as they open. I like to get up before Katia and before the nurses start coming in so I can have some peace but lately I have been to tired and basically need a kickstart to get up and going!!! Hence, coffee!

Well, enjoy the holiday season and take in all the spectacular lights you drive by and the weather (although it may be getting on your nerves in some places). I realize when it is hot, I want cold weather and when it is cold, I want hot weather. So, I try to enjoy the crisp days in Florida right now.

Today, as I walked to the Ronald McDonald House, I was thinking of the kids most recently lost that I know of. I so wish we could all be having happy Christmas. That would be my Christmas wish. We are all in this together.

Please remember to visit the links above. I try to get to the pages as often as I can. I know quite a few families living each day with eachother as though it could be their last, and for more than I know of, it could be. I am praying for each of you even the ones I don't know by name. God bless. Love, Tracy



December 16, 2003 1:19PM

No need for worries, I am going to update in a bit. I am just really trying to get some stuff organized. I have no news yet but I am thinking I will update this afternoon with more answers. All is well with us and Katia had a good night:)

Love, Tracy




December 15, 2003 7:00 PM

Well, I am doing an early update tonight, not because I have any major news but I hope to have a very relaxing and quiet evening. I have been organizing today and did about 5 loads of laundry. When I came back from the Ronald McDonald House, I could not find my wedding ring!!!!
Needless to say, I have aged 10 more years! Well after about an hour or so of digging around everywhere and making a very fast paced trip back to the Ronald McDonald House (RMH), I found the ring in my pocket!!! Okay, yes, I did look there about 10 times but it was just kind stuck in there in a weird way. So... after all of that, I prayed for a quiet evening.

Katia is already asleep. She had PT (physical therapy) and then 2 volunteers came by to play with her so she is exausted!

Absolutely no more news today at all and she skipped out of even being weighed since she is already asleep. She didn't eat much of anything and she threw up once so maybe her weight stayed equal.

I can't believe this year is almost done. I mean people ask where the year went? I don't know. It seems like just the other day we were coming back from a wonderful 3 days at Disney for ROCK weekend sponsered by The American Cancer Society. Such a great trip and the pictures are still vivid in my mind! It was a perfect perfect trip!!! I can't wait to take her back when she has her "new blood". After she does have transplant, we will have to let about 6 months go by before we can really be in groups of people so we will just have to visit parks and play alot in our backyard on the swingset!! Oh, I can't wait.

I just want to be cooking dinner and watching the kids walk around the house and have Katia asking me when dinnertime is. She can really make any cook feel good by how excited she gets when you are cooking. You are her hero if you are making food for her!

We had a nice day yesterday. We watched the Survivor Finale last night all together as a family. One of Myron's brothers, Tyron, the one 2 years younger than Myron was here in town for a couple of days so he was able to come over last night and see the baby and visit for a while. YES, KATIA IS OUR BABY!

So, last anniversary we were at Disney and this anniversary we were at All Children's Hospital. We were TOGETHER:)

Katia is getting very very eager for Christmas to get here and we will actually celebrate it on the best day we get before we start pre-transplant conditioning treatments. So whatever date that will be, it will be our Christmas. It may be a few days early and most likely not a few days late:)

I am definitely not doing a countdown with her yet. She is so cute sleeping here! I am going to go snuggle:)

Love, Tracy

PS First let me add some new pictures for you:)



December 15, 2003 9:41 AM

Our night went well and Katia had a lot of good sleep since they don't have to bother her so much with taking her pressure all night long. She woke up in a not so good mood but is now Ms. Peppy:)

Hopefully we will find out why her counts are dropping. Today they are low but didn't go any lower overnight so that is good. They are testing her for the CMV virus also right now so we have to wait about 5 days for those results to come back. I have to say, Katia keeps me on my toes. This morning we have been playing hide and seek and in a square room, that is not easy but something we seem to be able to carry on with for at least 30 minutes at a time. When I am looking for her, she always starts laughing and gives her location away.

I am going to update the pictures on the page sometime today. Okay, Katia has just bursted into tears so I need to get her calmed down. She is really having a lot of little breakdowns right now probably because she is sick of being here in this room.

I will update with you later:)

Love, Tracy





December 14, 2003 6:55 PM

I just learned that Alyssa has become an Angel. Her link is above in the prayer request. Too many, too soon.

Also, I am a bit worried, not sure how much I should be, but Katia's HGB and PLATELET count over the past few days has become lower than it had been since mid-October. HGB has been around 12.0 and now is 8.4 as of yesterday. Her PLT count was around 135-150 and is now down to 70 over the past few days. I am not sure why and she is being tested for some things so just pray this does not hold us back and does not present more worries for during transplant. She is playing fine but has been VERY cranky the last few days and now I wonder if that is why.

Well, my family is here right now so I better get to spending time with them.

Thank you so much for all of the anniversary wishes:)

Love, Tracy

December 14, 2003 10:35 AM

HAPPY ANNIVERSARY MYRON!!!

Already so much going on today but not with Katia. I got a call about 2 AM from Myron and I got so worried that something had happened at home cause the call didn't come right through to the room. Well, his Grandfather (his Mom's Dad) had passed away just about an hour before. He was 103 years old. I know Myron's Mom really misses her Dad. He was living with them on the island for the last few months or more for them to keep a closer eye on him and take care of him and had recently been fighting pneumonia. His funeral will probably be today in the afternoon. There are no embalming services there so the funeral is usually done right away. He had lived a long life. My dad knew him because they both live in the same town which is where Myron's Mom is from. It is a very small rural community. I had been over there to visit when we used to live on the island back in 1997-1999. We will miss him.

As you can also see from the top, today is our 16th Wedding Anniversary. I am so lucky to have met Myron!! Myron is such a great husband and daddy and is such a big part of how I can stay here at the hospital day in and day out. He visits everyday, brings the kids, does all the housework with the kids, does all the grocery shopping, cooking, just everything. I don't have to worry about what is falling apart at home or that my house is dirty and laundry over flowing because Myron and the girls take care of EVERYTHING!!! I am very lucky and I count those blessings each day. Myron has always been a good daddy and spends good quality time with the kids from the time they are born. Of course, he has always sung to them and played with them and he never hesitates to sit down and play with their dolls or whatever toys. I remember when Sharayah and Tatiana were babies, he would crawl in their playpens with them and play. I have those types of photos saved in my memory bank!!!

Then, the Saddam capture! That is Myron's old group from when he was in Desert Storm so it is nice to see what they have accomplished. I didn't know about the news until I signed onto AOL this morning. Mind you, I live with a 3 year old so basically the TV stays on her channels and they really aren't news channels.

Also, today Myron will be at the BUCS game handing out flyers and also the Florida Blood Services and National Marrow Program will be out there letting people know how important it is to register as marrow donors and how to go about doing so. The BUCS are backing all of this up now so there will be information and buses there at the home games for this week and next week's homegame. FOX network is saying they will give this story national attention to bring more people to the registry. So... our goal of tripling the registry by the end of next year just may be moving right along. I am grateful for everyone who has gone forward to register and those that will be touched by the Public Service announcements being aired throught the days on the BrightHouse Channels. I want so bad for Katia's story to make a difference for EVERYONE facing the need of a marrow donation.

Please, if you haven't already, go register. You can help so many people. Just one life saved is a miracle! So MANY people are in the same position as Katia.

Also, tell 5 people you know about registering with the Marrow Registry and tell them to tell 5 others. That is the best way to get the word around. YOU! As the Katia Solomon Fund grows, we will do alot to raise people's awareness to this need and educate people on all there is to know about Bone Marrow Transplants. Once people know they are so willing to register. I like to get information and I like to share information. "Half of knowledge is knowing where to find it". Right? Well I want to be able to hand out "knowledge".

We have a lot of ideas on how to spread the word and we are very willing to put our time and effort into doing this. So if you know someone who could help, please give them the web address of The Katia Solomon Fund. If you know someone who wants to register as a marrow donor, give them Katia's website to learn more information. It all starts with one question? "What do I need to do to register?" We can help answer that question.

Love, Tracy







December 13, 2003 10:14 PM

Good evening. I really don't have anything to update. I did have a train of thought about something I was going to say but then Katia wanted me to sing her Christmas songs, so... of course I did. As best as I can, I really try to walk away from doing something that isn't necessary if she wants me to do something. I will remember those things far longer than many of the other things I find myself staying busy with. In Katia's 3 3/4 years of life, she has taught me so much.
I learn a lot from everyone around me that I deal with. I can't think of one person I haven't learned something from. It may be something I have learned NOT to do but, I have learned something.
I try to watch things on TV that either relax me or teach me something or shed a new light on things. No, I don't watch the Discovery Channels or The Learning Channel all day (I do like those) but I mean things that enhance the person that I am and that I can be.
I do believe what goes in, comes out, for the most part.
I LOVE to make memories which is why I like pictures so so so much!!! If I had my choice in doing anything in life professionally it would probably be photography. I like to write also and I enjoy advertising and design but for the most part, I love taking pictures of things that capture a moment - sounds like a Kodak commercial:)
Anyway, that is about all I have to say for now. Katia is off of one of her medicines which is great because it was the one that made them have to come take her blood pressure every 15 minutes for the 2 hours it ran so that means 8 less blood pressure squeezes a day. She also had her TPN and LIPIDS (nutrition) turned down 2 more hours which means she will be unplugged longer each day. She was 18 hours just a few days ago. We are moving along. Though most of this will all come back with transplant, it is nice to ease back right now. She just CAN'T lose any weight (she did go from the 15.0kg last night, down to 14.6kg tonight). They probably will turn it back up because of that but we will see. She just didn't eat much of anything today and unlike anybody WANTING to lose weight, the weight drops off when she misses a meal.
Good night and sleep tight and don't let the ladybugs bite:)
Love, Tracy



December 13, 2003 10:01 (Day 109 in the hospital-not that we are counting)

Well we had a good evening and let me just say I am so grateful for the times we are having right now with Katia and our family. I do not take one moment for granted. We are hoping to get the clearance for our transplant date early next week. So let me explain the transplant situation. There is still the cord. It is a 5/6 match which is good. The only problem is the cell count is too low for a boost if needed (needed if she doesn't engraft or starts losing her graft). But, nothing better has come along and we just can't keep waiting. We have run into so many obstacles with Katia getting sick so this time when we get her healthy enough for transplant, that is what they will do. Please continue to register not only for Katia's sake but so many other people are waiting for their miracle and the more people on the registry, the better chance they have at finding a good match and quickly! It is so hard to wait because so many things can come up and go wrong. My main worry has been for Katia to again relapse while waiting for transplant. That would be really bad so I am very eager to move ahead but also very very nervous for the difficulties of the known and unknown. We KNOW that Katia will get really sick throughout the preparation chemos and radiations. We KNOW she once again will not want to eat and will lose weight. We KNOW there are many risk associated just with the transplant alone. The day of transplant, really is not a HUGE day, it is the days that follow. A bone marrow transplant is just a huge ordeal and our family will face it head on and just pray pray pray. It gives us so much assurance knowing so many people will be praying for Katia. So the prayer now is that Katia is well enough for transplant and stays that way. I hate the fact this flu is going around so bad. This is just a hard time of year for anybody with a low immune system.
Okay, other than that, we would get a transplant date (the date of actual transplant) then they count backwards from there how many days of "conditioning" (such as chemo and radiation) are needed and that becomes our negative days. She would be moved over to the transplant ward for those negative days and then all the way through transplant and after- usually about 60-100 days after.
There will be no stuffed animals allowed and everything we do take must be wiped down so we will limit what we are taking in there just to simplify the moving process over to that room. Most things will be sent home or put at the Ronald McDonald House and then slowly brought over and wiped down and put into the room. Everything in our drawers, luggage, on shelves, etc. must be wiped down.
Well I am not going to go any further into that. Still, if a closer match was to pop up now, we would go with that. Definitely:)

Okay we just had a whole group of people drop by and hand out beads and little flashing santa pins to the kids so I stopped to do a little interview. People are so nice to go out of their way just to reach out and pass on a smile.

Katia is all happy now. Love, Tracy






*****



December 12, 2003 9:30 PM

Have I told you guys lately? YOU ARE THE BEST!!!!

Anyway, we are all here right now as a family and watching a movie with Katia. Seems so "normal". I am just trying to enjoy this time as much as I can. I look around and try to memorize everyone's expressions and the little comments. We don't sit around much together that a phone isn't ringing or Katia sick or just one of us not here. So many things usually are going on.

Do you like the background? I have to thank Lori for the backgrounds you see here and for the 2 play pages of Katia's. She did that for me just as a surprise and it is so nice. We have so much fun on those play pages and I understand many other "people" (yes adults too) have a lot of fun. IF you haven't visited the playpages yet, the links are right above the journals.

Katia is getting that medicine tonight that she gets every 14 days. Last time she did good so I pray this time will be the same. Tonight she is looking pretty pink in her face and she is kinda warm but no fever. I don't know why so I just made her calm down and I undressed her some. She did eat part of a hamburger and a couple of fries. Then, she ate 2 nuggets. That is good. Her weight yesterday was 15.1 and tonight it was 15.0 which means she lost about 1/4 pound. The other day she had gone up a little over 1/2 a pound so we are assuming the difference was a bowel movement. So I will conclude that she is thusfar maintaining her weight. Which is good because they are turning down her nutrition via IV a little bit at a time. Eating is a chore to her and it used to be pure joy!!! The problem is before transplant she will have a lot more chemo and her tastebuds will be all yucky again along with her stomach so...
I just enjoy seeing her eat now:)

Anything else? I guess not. Please just try to visit the kids listed in the prayer request. I don't get to visit their sites but maybe a few times a day and I worry they will update and I will be late updating here. If there is ever anything that I must know right away, good or bad, please feel free to email me:)

Well, I bid you good night, sleep tight, and don't let the ladybugs bite! Love, Tracy

PS I want to thank those of you who have gone to the Katia Solomon Fund webpage. Your visits and contributions are way beyond appreciated. Myron was able to participate with a Toys for Tots drive and a Marrow Drive combined yesterday and he was amazed at all the people who came forward with the toys to donate. There were some to register as marrow donors too and each one could be someone's miracle! I tell you, there are way more good people in the world than bad people, way more!

Okay, now that is it:) Love, Tracy



December 12, 2003 3:30 PM

Just a small update to put in a few words here. I have gotten a lot of emails today about the "Princess Nicole" and how close of a story that is to a page that was proven to be a false story not too long ago. I now remember that but when I was asked to build the page yesterday, I didn't hesitate cause I just wanted to help out this Mom. Well I am not sure one way or the other if the story is true or false and I just don't want to be in between anything. I don't personally know the person so I have just deleted the page and I hope that if the story was real, the Mom will be able to do a Caringbridge page, if not then...

I appreciate people emailing me and not putting any negative comments in the guestbook so that Katia's page and guestbook stays perfect for Katia. I print this and keep it for her to read later in life. I read the guestbook entries in the Nicole guestbook that a lot of you left and you are each as kind hearted as can be. I don't think we should ever back away from being nice and trying to offer words of support because of one incident or even many incidents. I think we should always keep our compassion. The world needs more of that. When people pull pranks, I think it is more because they feel a lack of love or attention and I have learned to just walk away from that and really try to not let it bother me, just not be a part of anything negative. Obviously there is not a group of "Caringbridge Police" so different people can come in and falsely use this service but I just pray they won't because Caringbridge offers something so nice for those that really need it and depend upon it. We have such a nice family of Caringbridge Page owners and our Caringbridge readers.

I am still very saddened about Angel Davin's passing yesterday and that is what is on my mind now. I cannot imagine what his family is going through. I pray I never have to face that with ANY of my children. I hold each of my daughters very close to my heart and no parent should have to lose a child.

Please pray for Angel Davin's family. I went out and released a balloon to Angel Davin. I do that almost anytime I know of a child that passes. It lets me release some of the sadness. So, if someone finds a big bear balloon that says "Sending hugs to you", please let it continue its journey to Dear Angel Davin.

Thank you for all of your prayers. They obviously are bringing Katia along and getting these tests to come out good. The test they sent off for the bacteria in her belly has also come back negative. Her eyes look good. Her butt looks good (or should I say "bottom") and she is eating more on her own. She has gained some weight from 14.8 to 15.1 so hopefully that keeps going up and they can wean her off of some more of the nutrition supplements she receives through her broviac.

Love, Tracy



December 12, 2003 2:15 PM

Really quick, MRI results all look good. I have company here visiting right now so I will add more later. Things are moving along and we are trying to change some of her medicines around to d/c them or discontinue some and we are slowly turning down her nutrition to see if she will eat and maintain her own weight:) Be back later. Love, Tracy

December 12, 2003 9:30 AM

I just want to update a small bit here. There is no news on Katia's test yet but I received an email from Shauna that Angel Davin was welcomed into Heaven last night. Why? This is just too many kids. I probably won't update for a while today but I will post when Katia's results are in. Please go by and offer your words of love to the Rucker Family. I know they appreciate your kindness so much. Love, Tracy

PS The copy of Shauna's email is above in the prayer request.








December 11, 2003 9:39 PM

Well no news on the MRIs today. I am waiting for them though cause Katia has been having quite a bit of rectal pain today. I feel so bad for her and I hate just giving her pain medicine without knowing what it is. I should find out more in the morning, I hope or early afternoon.

We had a reasonably good day. Katia has been very clingy and loving but also decently outgoing with everyone. Of course she can chose to not be so nice at any given time. But usually that doesn't last long. Today she was standing at her doorway (she won't cross the line to get into the hallway) and yelling different nurses' names to get their attention. She is so loving for the most part of the day. I love my little baby. She is like a jewel, so perfect, so pure and so full of hope and dreams. I want all of that for her.



Love, Tracy:)



December 11, 2003 10:56 AM

We have just come back from the MRI. Katia had a few scans done some were of her pelvis area and the others of her eyes. So we will know more about that today. No other news really to share but I wantedd to update. I am trying to get her to start eating breakfast again. Not going too well. But at least she is eating sometime during each day right now so I am happy:)

Well, the little boy I said was having his transplant yesterday is not actually getting it done until the 16th so there was a delay there. Please pray for him and his family.

I will be back later in the day. No new pictures to add right now but I am trying. She is pretty disagreeable after her sedations but maybe the day will improve. She is throwing herself around a lot right now so I have to cut this short.

Love, Tracy







December 10, 2003 7:00 PM

Please see Davin's update in the prayer requests above. That is where I will update for these children.

Katia had her endoscopy done and we will know what is going on in 48 hours. Basically everything looks good but there may be some bacterial infections that need to be treated. Hopefully it turns out to be negative.

Other than that. She has eaten some today. She had 1/2 serving of spagetti and some pistachios! She is doing okay with that. They are going to turn down some of her nutrition supplements from receiving it 18 hours a day, to 14 and see if she can maintain her weight.

Well she is all over the place tonight so I can't type long.God bless each of you that check up on these other children I mention. I go by and see their guestbooks and see you there and I appreciate your doing that so much. I of course appreciate you stopping by here to always check on Katia and pray for her and leave her the encouraging messages! They really really help which is why I always try to help by sending people to other guestbooks because your messages literally get me through each day. Love, Tracy

PS I know it takes a lot to stop during the holiday seasons and check on Katia with everything you each must be doing and then with your families and school plays and just everything so I REALLY appreciate you!




December 10, 2003 11:07 AM

Good morning:)

Today there is another bone marrow transplant going on. I am happy for him and I think he will do very well. Please pray that all goes very smoothly:)

We haven't gone yet for our procedures. Another patient got put in ahead of us so I figure we will go in about an hour. I haven't even checked the guestbook yet this morning. I have been BUSY!!! I have been blowing bubbles for Ms. Katia until my head was about to start spinning and I lost my breath. She has given me a break and she thinks I am sending an email to Santa right now? HI SANTA!

So, I just wanted to update really quick to let you know we haven't done anything yet. Just please pray they all look good and we can move on and get a transplant date at least to look forward to. Love, Tracy







December 9, 2003 9:03 PM

Aside from having a horrible headache right now, today was very very nice. Katia started her day with three bites of pancake and makes me add that she had a LOT of syrup on them (every little bit counts), then for lunch she had about 30 noodles of spagetti (yes we count) and then for dinner she had a full serving of plain pasta!!!! Can you believe all of this? She was so pleased with herself and YES IT ALL STAYED DOWN!

In the morning she is scheduled for her procedure to look into her throat, belly and intestines, sometime around 11:00 AM so pray all is well there. She did have pain on and off today with the eating and quite a bit of butt pain for a while but tonight she played with her sisters and some of Sharyah's friends. They all had a nice time. Right now she is watching Rudolf the Red Nosed Reindeer.

Someone sent me a link to a very nice Christmas Card so maybe you will have a chance to drop by and see it. Very nice and centered around the REAL reason for the season.

Well, I must bid you good night cause my head is throbbing so I am going to try to unbusy myself and relax. I kinda forget how to do that sometimes. We stay very busy but sometimes we just have to slow down. I am sure Katia will be sleeping soon:)

Have a good evening and be careful driving around doing your Christmas shopping. Love, Tracy

PS For those of you covered in snow, I send you sunshine from Florida!


December 9, 2003 2:21 PM

Well I have a few things to update. Right now Katia is eating spagetti!!!! She has already had about 15 noodles! That is great. This morning she had 3 bites of pancake with syrup. All of this is so far staying down. She is still working on the spagetti.

Okay another thing. I have a new website for you to visit. Someone emailed me this little boy's site. So here is his info. I will be adding his site to the prayer request part to keep you updated on his progress.
Alex

Alex is fighting ALL. He is in ICU at the moment and last night he coded and really gave his Mom a scare. He was non-responsive with his heart rate and blood pressure dropping fast. He is okay this morning but remains in ICU. So, if you can please drop by and it will give his Mom and Dad strength.

Love, Tracy

December 9, 2003 10:00 AM

Happy Birthday sweet Angel Jalen.

Not much going on here this morning. Katia is watching Playhouse Disney and is very very into Rollie Pollie right now so I thought I would update. Right now it is the holiday season and I know things are so rushed. Last year, we were home at this time and I remember being in stores and seeing people rush around and get very short tempered because of just being exausted and not wanting to be in the crowds of shoppers. I have learned a lot over the last 20 months. The main thing I try to hold onto is the fact that I never know what some stranger's day is like. Are they having a good day? bad day? Why are they shopping? I read one mother's update the other day. She has just lost her son and was trying to buy him an outfit for his burial. Well everyone was out Christmas shopping (I think it was the day after Thanksgiving) and they figured she was too. When she was at the register, the girl kept saying things like, "Oh you are getting an early start on Christmas, that is great." or "this is so cute, someone is going to be happy." Well the girl didn't mean anything bad but finally the mom told the girl what it was for and the girl just didn't know what to say. I am certainly not saying not to be jolly and chatter over your Christmas shopping adventures but I just think about that when someone butts a head of me in a line or doesn't say excuse me when they run into me. Maybe they are very caught up in something and their mind is very distracted. I have learned a lot about patience and forgiveness (especially is parking lots-but this does not mean to take my space) and I just thought I would share the thought. I asked a cashier here in the cafeteria the other day, "So are you getting ready for Christmas?" She very quickly, but nicely, answered me back that she lost her son to Sickle Cell Anemia on Christmas and really doesn't celebrate the holidays right now. It is just too difficult. I felt bad immediately for asking but then I just told her I was sorry for upsetting her and she said she was fine. She understood people will ask. I will be thinking a lot about the families that have lost children or parents or even those who have lost dear friends. BUT I think that is what Christmas should be about. Christmas should be about Christ Love and all that is good. Christmas should be a time of understanding and forgiveness and spending time with your family and friends. Christmas is a fun time to exchange gifts and dinners with your friends and family. The stores are all decorated so nicely. When you go in the mall or a store, spend the time to really see how nice it is decorated. Someone did that just for YOU!

I have been getting outside each day to breathe in the fresh air and pick my little yellow flower. Can you promise you will take the time to enjoy the season for us and enjoy the decorations in the stores and the family time together. We will all be together for Christmas in the hospital and we won't spend our day complaining about having to be here but we will be grateful we can be together. Love, Tracy









December 8, 2003 9:50 PM

I have met a new little friend tonight, Alyssa
and she has an inoperable brain tumor. This is a turn for the worse fromt he good news they received in October. She is in the hospital now trying to control her pain. Her webpage is literally brand new so maybe we can all help get some notes in her guestbook.



December 8, 203 8:45 PM

Ms. Katia has been asleep for about 2 hours already. She was just worn out. I just updated Dustin's prayer request above. Please visit his family. This is a time they need so many prayers.

Katia had a good evening. She is quite full of kisses lately which I NEVER mind!!! She hasn't been wanting to get off her bed and play to much. She says her belly hurts so I am eager to find out if there is something causing this. The tests on Wednesday should help clarify things, I hope.

Katia is so eager for Christmas. She listens to Christmas music, watches Christmas movies, does little Christmas dialogues with her toys, etc. Everything is Christmas. Someone today asked her what she asked Santa for. What do you think she said? She said she wants "her new blood for Disney". At least she sticks to one thing. She has her mind set and that is a good good thing. Well, my back is getting sore. I have been playing with Katia today or should I say letting Katia climb all over me today. She has me pretty bruised up but she isn't being mean, just loving. She is just BIG! She accidently pulled out my ladybug earring today and was pretty sad until we found it. She didn't rip my ear, just pulled out the earring. Thank goodness it wasn't a loop!

Well, thank you for coming and checking on her and please pray Dustin will find a miracle. God bless. Love, Tracy




December 8, 2003 1:53 PM
Okay let me type fast cause I keep getting kicked off-line.

The scans look the same. Good or bad? Well they are willing to except this. I am okay with it also. Now the next thing to be done is Wednesday she will have the endoscopy to look a her throat, belly and intestines. If that all looks great, then we set the transplant date. I will go further into that if Wednesday's test all look good.

BUT I was talking to her doctor and nurses about the rules for transplant and what she can and can't have and I thought I would post that here. Later I will move it permantly up top so that you can always see what she is allowed to receive. Now, a lot of what sets this up is to how things have to be cleaned off before entering her room. When Myron, Sharayah or Tatiana visits, they will have to wear the gowns, mask and gloves (which we all agree is the best thing to keep Katia from getting sick). We will only be moving minimal things into her transplant room because all things have to be wiped down or washed with a certain solution.

Here are a few things she cannot take back. STUFFED ANIMALS. She is not happy about this but she knows she can't play with them in the room she is to get her "new blood". She WANTS her "new blood". All of our clothes will be washed and bagged to go into the room. All of her movies or books, wiped down. Everything, absolutely everything must be wiped down.

This is a difficult time right now as we are so anxious to get to transplant but also so nervous to get to transplant. We will do everything we possibly can to keep Katia healthy but a lot is left up to her body and the "new blood" she recieves. We had really hoped for a closer match to come up and since there is still time, they are still searching. Myron is still pushing people to go register. But, like I said when we introduced The Katia Solomon Fund, we plan to do this for a long time to come. We don't want anyone to ever have to wait for a match and have the possibility of not finding that match. This is something very close and dear to our family's heart. Any word of mouth (or email) to lead people to the new Katia Solomon Fund page is greatly appreciated. Keep checking back as I will be trying to get that site going better over the next few weeks and months. I also want to thank each of you who have ordered a CD. Twenty percent of everything goes to the Marrow Fund and the rest is what is enabling us to live right now with Myron being away from work. Our family needs this time to be together and also to make decisions that come up. Although Katia has had so many "roadblocks", we are always able to sit down and go through the pros and cons as much as we can and feel as comfortable as possible with our decisions. I couldn't imagine Myron having to get up at 3AM everyday right now and go to work. He really misses his job though, the "normal" feeling of going to work. Although nothing will ever go back to the way it was since our family has grown so much with all of this, we do hope to go back to leading our everyday lives in a more normal way. That is what we look forward to.

I want to thank each of you for giving a piece of your heart everytime you visit this page. Your messages and visits mean the world to us and really give us sanity. Some people say they "babble" in the guestbook, NONSENSE! I love to hear from each of you and even what your days are like with your work and families.

Emails are getting hard for me to answer and I REALLY have a hard time opening e-cards right now. Always know that if you don't hear back from me personally, my heart is thankful and appreciates everything you do.


If Katia gets put into transplant (gets a date set) we may start with all the chemos and radiations before Christmas. Because of this, she will start feeling very bad again so...
We may be celebrating Christmas early but we will see.

What is my Christmas wish? Well I have a few but I will just give you the top ones.

1. Of course KATIA!! I want her to get through this and get her "new blood". I want her to be all healthy again and get back to playing on her swingset and learn to ride her bike, read books, eat like a piggy again, etc. I MISS THAT! She is my world!

2. For Sharayah and Tatiana to enjoy the holiday season even though there is so much going on and both of their parents are usually so busy and preoccupied. I love you Sharayah and Tatiana and I couldn't imagine going through any of this without the help of the two of you! You are wonderful daughters and the best big sisters Katia could have dreamed of!

3. For all of our new friends (you are family) and our families have a very Merry Christmas and be blessed with good health always.

4. That each person will tell 5 people to register as marrow donors and those 5 will tell 5 others, etc. etc. Everyone should know how to and how important it is to register. I think all college campuses, postoffices, drivers liscence offices, doctors offices, etc. should not only have literature available but should verbally say something to each person that walks through their doors.

5. We will all be together, at home, for Christmas next year and every year to come until I am old and grey and my grandkids have to help me up to go get more PUMPKIN PIE!

God bless each and everyone of you!

Love, Tracy

December 8, 2003 10:45 AM

First, please go by and visit Angel Jalen's page. Tomorrow is his birthday. He would have been 2 years old. I am sure his Mother, Jeanette and his Grandma Terry would love to hear from you on this very special day. They are planning some very special events in honor of Jalen.

First thing this morning we had our CT SCAN of the lungs done. We have no results yet but PRAY THEY ARE CLEAR! Tomorrow morning at 7:30 AM Katia will be having an endoscopy (the scope going down the throat to her stomach and small intestines) to see if they can find out why she is in pain and can't keep her food or water down. She did have 6 grapes today which have stayed down. She put her hand up to her mouth when she was done, blocking her mouth and said, "Stay grapes!" I thought that was cute. She feels hungry and wants to eat but she doesn't want to be in pain or throw up so hopefully this endoscopy can find the problem and we can get it corrected.

I want to thank each of you coming by for stopping in and for those who sign the guestbook. I know how busy Christmas season can get and it means SOOOOO much that you take time out of your busy day to just say hello and check up on Ms. Katia.

She is still on isolation but her room is so pretty that the hallway doesn't look so great to her right now. I know she really really wants to go in the playroom and out to the bridge cause she keeps asking but then I just try to pull her attention back into the room somewhere and she is so understanding.

Well, please pray for the results of the CT SCAN to be what they need to be to move ahead and pray for her little belly to be nice:) Love, Tracy











December 7, 2003 9:57 PM

I was trying to think of what to update tonight because not much is going on but we did decorate Katia's room more today. It looks GREAT! I was trying to get some good pictures but the pictures do NO justice of how beautiful it is. I also asked Myron to take a picture of what the neighbors did, but same thing, the pictures do no justice. I will have to go home some evening just to see the house. They decorated the front yard, the side fence, hung lights on the house! WOW!

Katia had a very fun day watching the room get all pretty!!

She tried to eat something tonight. All she had all day was 2 ounces of water but tonight she very proudly ate 12 noodles and then threw them up. She was so sad and after I cleaned her up and got the mess cleaned up, she fell asleep. I know she LIKED the noodles but her belly is just not being nice to her at all. It gets her upset and that is why I think she doesn't even try to eat anymore. She was drinking but now she doesn't do much of that either. Please pray for her belly (the belly that used to love to eat and hold down a lot of food!) will come back cause Katia misses her belly. She LOVED food!!!

I was sitting here feeling pretty gloomy cause here I am looking at Christmas decorations and my family is home looking at decorations but the are DIFFERENT decorations. Myron and I very much enjoy sitting down in the evenings after everyone is asleep and just watching the lights blink on the tree in the total dark. It is so pretty. Our trees are always just festive. Lots of colored lights, colorful ornaments, garland and lots of tinsle! I just really really miss my family and I hate seeing them pack up to leave from the hospital. I know they miss me being home, too. Someone asked me to do a daily count of how many days we have been the hospital. I do keep up here on the dry-erase board in our room but I try to not dwell on it. I also try not to look too far ahead. I try to just focus on the here and now and what we need to do over the next few days.

The plans are to scan Katia's lungs tomorrow. I know the Gastro doctors want to also do a scope of her throat and stomach and also a colonoscopy but I am not sure when they will schedule those procedures. Well Ms. Katia is asleep and she is so beautiful, absolutely a doll!!! Love, Tracy



December 7, 2003 9:30 AM

Good morning! No belly pains this morning. Katia has been awake for about 2 hours now and so far so good:) BUT she hasn't even so much as drank water so we will see if there is a connection when she does drink or eat something.

She is playing right now with some little animals on her bed and she was so happy to see her Christmas tree when she woke up! I actually woke up to one of her Public Service Announcements on TV this morning so that was nice. They are playing from the day before Thanksgiving until the end of the year on about 5 or 6 different TV stations. They are to raise awareness for the need of Marrow Donors.

Well, that is about all that is going on right now. I will update later in the day. Have a good Sunday. Love, Tracy









December 6, 2003 9:25 PM

Well we decorated our little tree in Katia's room. We had a LOT of fun! The pictures don't show the fun nor the beauty of our little tree but Katia is very very happy and we all had a nice time putting it together. She also has a little orange spongebob tree and we are putting little ornaments she gets on that also. So she has a festive little room:) We had Christmas music playing and just made the most of it all being together. THEN, when the kids and Myron got home, our neighbors had decorated the front of our house and our front yard!! Myron is going to take pictures of that. What fantastic kindness!! The kids were very very surprised:) Thank you all so very much!

Well, Katia is pretty tuckered out tonight and she has taken all her medicine and is now just laying here watching a movie. She just ordered some plain spagetti noodles so hopefully she will eat some. She orders a lot of things....

It was very nice spending today as a family. I try hard to imagine the day we will all be home together and doing regular things like cleaning house, homework, cooking dinner, etc. I would love to just sit in the livingroom and watch a movie and have Katia go from one of us to another sitting for a few moments and then moving on. She doesn't stay in one place very long when we are home. She loves to roam around but doesn't like to be by herself. This would have been our first Christmas in our house.

Okay, positive thoughts:)

I will probably change these pictures out pretty quick cause I had some other cute ones of actually the few days prior to today. So... Keep an eye out (as I know you do)

God bless each of you and throughout the holiday season try to enjoy the sites and sounds of the season, your families, the decorations as you walk through the mall. See them for Katia (through a child's eyes) and pick a flower if you walk by it-well maybe not your neighbor's flowers:)

Love, Tracy



December 6, 2003 12:09 PM
Wow, what a late update! I have been visiting a few caringbridge sites and researching an idea that I have and all the sudden, I realized, I hadn't updated.

All is okay here. Katia woke up and her belly was hurting so she threw up a couple of times and now she is feeling better. I still don't know what is causing all of her belly problems but she is going to have to start eating and taking medicines or there will be problems. Her belly has to start having something on it. Wish us luck with this:)

Other than that, Saturdays and Sundays are usually pretty quiet but today we are putting up her tree! That is the plan. Sharayah and Tatiana are going to have a surprise this afternoon too but I can't put it here yet because I don't know if they will check the page so I have to wait until after it is done and they see it:) SECRETS!!

Well, that is about all. I do have some prayer request and I am going to try to keep these prayer requests active but please also visit the sites in the pull-down menu above. I have learned so much by visiting these other children and their families and I want to share that with you.
The prayer request are above the journal.







December 5, 2003 7:30 PM

Well we finally got our bone marrow aspirate done, the lumbar puncture and the spinal chemo so that is behind us. All the preliminaries show complete remission although I must always remind you, the final results are not back yet. Remember August 26th update? Well I am more at ease now than then but I still wait for complete and final lab reports now.

Katia was pretty sick for a while due to the type of sedation they used today. Since we didn't go to ICU they couldn't use the one they have been using which was working so well but they didn't want to continue putting off getting these things done.

The GASTRO doctors came in and are going to wait to find out if the C-DIFF starts going away before they scope or do a colonoscopy because the C-DIFF also causes pain so we will wait.

I am not sure of when exactly the next scans are of the lungs but just early next week.

I think that is about all for now. I am just glad to have these tests behind us and I just pray all the results are good. The doctor said that even if she is relapsed, we will continue ahead because she would still have all the pre-transplant chemo to go through and radiation. She just couldn't be relapsed a LOT.

Well, I was talking to my dad tonight about all of our wonderful friends that we have met and how many people check on and pray for Katia each day. I am really touched each time I sign on. I never take anything for granted so each time I see an entry in the guestbook, it really does touch my heart, and Myron too:) He has been really reading the guestbook a lot lately. He finds it very encouraging. THANK YOU SO MUCH!

Well we are glad you have chosen to be a part of our family's life. God bless each of you. Love, Tracy

PS
I have one of my questions for you.
If you could do one thing special for Christmas, what would it be?


December 5, 2003 10:46 AM

My back is still feeling great!!! We had a good night. We are due to go down for our procedures in just a little bit, well actually going up. We are going to Special Procedures to have it done instead of ICU. ICU has just been very very busy and we can't put this off anymore.

Katia is getting so excited for Christmas and I just hope we can enjoy it. I am not sure what will be going on around that time. I know she has a lot more chemo and radiation to do which will make her feel really sick and I want to have a transplant ASAP but there is another part that just wants my baby to enjoy her Christmas, you know?

I think they plan to do the next CT SCAN of her lungs next Tuesday and then if all is clear, we will start planning for transplant which can take anywhere from 2 - 4 weeks if everything goes smoothly. I am not sure if the C-Diff will delay transplant. She will also have all her major organs looked at; heart, lungs, liver, kidneys, spleen, etc. There are a lot of tests before transplant. She will also have her dentist come check her teeth to make sure all is well and nothing is loose or anything. Everything has to be just right.

Well, that is about it for now. I think she is working on another poopie! Love, Tracy







December 4, 2003 10:20 PM
Well Ms. Katia is now asleep and we had fun together tonight. I am still feeling wonderful from my massage. I mean I will be floating on air for a while! A lot of people always think the chair is so bad but what is bad is just the 100 days and more to go but it is all for a very very good cause and I can deal with it. I actually don't mind the chair so much, really. I have gotten used to it the last time we went through all of this. Don't get me wrong, I REALLY miss my bed at home. I miss sleeping on my stomach, moving around and being so comfy cozy. I miss my real pajamas (don't even ask what I sleep in here - but mind you I get up and down a lot during the night) but really really, it is not horrible as you may think.

I have been getting out each day to walk over to the Ronald McDonald house so I get fresh air, a brisk walk, get my laundry done, take a nice bath, BLOWDRY my hair (which just is so nice) and pick my little yellow flower as I walk to and from the Ronald McDonald House.

I really repeat to myself a few words throughout each day here. "Make the most of a bad situation." I try to come up with ideas to pass the time and be as happy as possible. WHAT WOULD I DO WITHOUT CARINGBRIDGE? I mean you guys really really give me strength beyond what I can ever tell you. Your messages make me laugh, smile, appreciate, think, etc.

I don't get to spend as much time on here as I used to cause it becomes difficult sometimes to sign on and Katia needs a lot more attention now than she did at home. At home she was just my shadow and followed me and climbed on me throughout the day but now she takes more to keep her entertained (especially locked in her room) and when she feels sick, well let me just say, diaper changing becomes a big ordeal, WOW! It doesn't smell sweet:) Quite the opposite!

Well, I am going to try to go to sleep early and get the most of my awesome massage.

Thank you to those who say how sweet the other kids are. They are both wonderful, caring and awesome girls. They have been through a lot but they keep a positive attitude and really do all they can to make Katia happy when they come to visit. They put Katia first and really try to be a big part of the progress in her treatment. God blessed me TREMENDOUSLY with my family!! That thought goes through my mind many many times a day:)

Love, Tracy



December 4, 2003 7:09 PM

All I can say about my massage is WOWWWWW! That was great!!! What a fantastic treat that was!

Myron had a nice time here with Katia while I was gone so it was an all around good day. Our procedures are lined up for tomorrow actually at 1PM. All the stuff that should have happened yesterday. She is still having belly pain but I think the new medicine is minimizing it some. She still has C-DIFFICILE which can be causing some cramping but it definitely means she isn't allowed to leave her room.

They are checking her stools for blood right now too so hopefully that comes back negative. I am very eager for the tests tomorrow checking her remission status. That is always something that keeps me nervous but when it comes back all good, I feel so relieved!

That is about all for now.

What a great massage, did I say that already?

Love, Tracy

December 4, 2003 Morning
Day 100 in the hospital...

Well, some news that I actually am taking as good since they were given to me first thing this morning. No procedures today which means Katia can eat or drink and that I will be here when she gets them done. That actually makes me more able to relax.

Relax is the word for today. Some friends of ours (the ones that did my hair the other day) at Mystic Hair are treating me to a massage today!!!! Since I have slept the last 100 days in a chair, I think they really have their work cut out for them:) I can't wait!!!! I am going to probably be glowing when I come back and tingly all over!

Katia had a good night, slept through with no problems and by the time she woke up, I already knew the procedures were canceled so I didn't have to keep her water away from her. She loves to drink water in the morning. Usually I have to make up some excuse to stall her that the water is getting fixed or the door to the water room is locked and they can't get in, etc. If that drags on too long, I make it the nurses problem and just tell her to ask the nurse for water:) Very mean of me but sometimes I just have no further ideas.

Well Katia is feeling sick so I gotta run and I will update when I return from Tampa:) Love, Tracy








December 3, 2003 7:00 PM

Good evening:)
Okay, before I update I am not trying to sound negative but it may come across that way.
We waited all day to go have done the planned things we were supposed to have done and around 4:30 this afternoon, we found out it would have to be done tomorrow. The problem is we are needing to just be worked in between one person leaving ICU and another person coming in. Katia is not an "ICU patient" so therefore we are unable to really schedule a definite time to go down there and have the different tests done. I think I would be a lot more stressed because of Katia not being able to eat or drink all day except for the fact she is hooked up to receiving her nutrients IV and her appetite is non-existent.

The thing is that tomorrow I am scheduled to be in Tampa for a bit tomorrow and I am sure it will happen while I am not here. Myron will be here and he is fine to go with her, just I really like to be a part of those bone marrow aspirations and spinal chemo and especially because of the type of sedation she uses. So, pray that maybe she will get called down there in the morning before I leave or after I come back. Who knows maybe it will work out that Myron and I can go down there with her, that would be even better.

Aside from that, please remember to pray for Davin and Dustin as they are going through so much. I know that Dustin received his new transplant today so we are praying his new cells will grow and keep the leukemia away this time. Davin just needs your prayers for a miracle! Both of them would really appreciate your visits to the guestbook. Thank you so much for all of you that go by. I do go sign the guestbook and I see so many entries saying that you are coming from Katia's page. Do you know what a blessing you are? God bless you for being so kind and caring. As always your prayers for any of these children and all the children even I know nothing about are so needed and appreciated. I get so sad when I think about the fact I only know a handful of kids and it is so sad that so many children and families are going through this all over the world. Some have hope of treatment and others have no hope of treatment. I pray for God's hand to just grant miracles.

Thank you so much to those of you visiting The Katia Solomon Fund Page and learning more about what we are trying to do. I really do feel we have been called to do this and we are going to put a lot, as much as we can, into this project. Hopefully the word will get out.

Well Katia is back on a new medicine by mouth 3 times a day to try to help her belly pain. She HATES taking the medicine so one of her nurses and I just had to force her to take it. I hate getting her upset but I know the medicine is necessary. She just fell asleep and it breaks my heart to think she fell asleep unhappy. Please pray she has nothing but sweet and happy dreams of Mickey and friends!

Love, Tracy



December 3, 2003 9:04 AM
Good morning to you:) Well we have a lot planned for this morning. Bone Marrow Aspirate, Lumbar Puncture, Spinal chemo and then a scope to look into her stomach. We will have to go down to ICU on the next available opening this morning due to the type of sedation she has to use now. She does none of this voluntarily but who blames her!

Thank you so much for those of you who are visiting The Katia Solomon Fund and for those who have contributed. We are really going to put a lot of focus on this but right now our focus is on KATIA. I ask you to please pass on the site information to get the word out.

We have a new patient coming in right next door to us - I hate to see new ones come in.

Well, I will upate later after the procedures are done so pray she is still in remission and we find what is causing her belly pain. She woke up again crying over pain. Love, Tracy





December 2, 2003 6:53 PM

Well Myron and the girls just left and I have to say THANK YOU for all of you who have been leaving the birthday messages for Myron! WOW! His birthday wish is for Katia to get her new blood and go home:) That is our wish along with the wish of so many others!

Okay, results.
The ultrasound was done this morning and the results came in around 4PM saying all is normal. So... that sounds all nice but there is something causing Katia a lot of pain that just makes her scream and crunch over so they are going to get the gastro doctors to do a scope and look for ulcers or other tears or something cause she just shouldn't be in all of that pain. The ultrasound today was comforting though cause they did look at her liver, gallbladder, heart, kidneys, etc and all of those look good which really makes us feel good to know those organs are ready for transplant!

Katia has had a ton of energy today and is happy except when the pain comes on. Pain meds kinda take it away but she is pretty much refusing to eat or drink BUT she had 12 bites of cake tonight (she adores birthday cake!) and she was asked by her doctor to at least have 5 bites but TWELVE, WOW! I feel better knowing her belly was fed something and cake is eggs and flour and sugar (sounds healthy to me!)

Okay, I have said Myron and I are working on a new project. We have been putting a lot of our focus, as you know, on the marrow drives and trying to find Katia a match. We ran into a lot of road blocks and through a lot of perserverance and help we were able to get through most of them. Well, instead of saying there is a problem and stopping there, we have decided to try to help the problem. We have been selling the "Katia Song CDs" which was to help with family expenses due to Myron being off of work and traveling back and forth each day, etc. We have agreed that $1.00 from each CD will go directly to the National Marrow Program to help in some way. Well, we decided to go beyond that and try to do this long term even after Katia has her transplant and is a success story. We have now started The Katia Solomon Fund which is a non-profit, tax deductable organization. To learn more about this, please visit the link.

A lot of people have always said that all things happen for a reason, well maybe this was our reason. This is something that we so strongly believe in helping for a long time to come. As the organization grows, we will expand our horizons.

So many people have stepped in to help us find Katia a match and we want to be able to keep that going and keep the registry going even after Katia has a perfect match and transplant! Katia is our symbol of hope and our family has just grown so much through all of this.

Thank you for being a part of our lives. God bless each of you. Love, Tracy

December 2, 2003 10:44 AM

HAPPY HAPPY BIRTHDAY MYRON!!!!!!!

I WILL BE BACK TO UPDATE...

Okay, we did have go the ultrasound (Katia calls it the belly jelly test) and I am waiting for results. Katia is very hyper today and not giving me much time to update. She is very clingy and loving so I am going to soak that up:) I will update when I know more. Love, Tracy











December 1, 2003 11:15 PM

There are two kids who desperately need your prayers and their parents really could use words of encouragment. The first is Davin. He had brain surgery for a biopsy on a new growth which turns out to be completely cancer and they say there is just nothing they can do. This tumor rapidly grew over the last 3 months. I cannot imagine how they are feeling right now but I know those of you who come by and visit Katia and give me so much encouragment can go by and just let the family know you are praying for them to have strength and for Davin to be happy. He is such a sweet boy! The same thing is needed for Sweet Dustin. I have spoken often about Dustin recently. Just last week his lungs were full of leukemia and his blast count high. They are trying very hard to get him back in remission for another type of transplant. He just had a bone marrow transplant. He has AML like Katia. Dustin is just a little older than Katia and they finally had to sit down and let his sister (not much older than him) know just how sick her brother was. No parent should have to do that. No child should have to fight so hard for their life. Children should be playing, not fighting cancer. Nobody should have to be fighting cancer. Please don't ever think I take lightly the adults fighting cancer, I don't. I hate cancer, period!!!

There are so many families going through this battle with their children, a parent, an aunt or uncle, cousin, just anybody and it is so hard on the whole family. You can't relax. Even when the cancer patient goes in remission, they are still fighting. You have to fight to STAY in remission. You have to fight everyday to enjoy the day and not think of what COULD happen tomorrow, relapse.

Do you remember when that person came on Katia's site and said we shouldn't be saying we are still affected by cancer since Katia was in remission? Well the good "r" word can easily turn into the bad "r" word, remission to relapse, so quickly and it is never out of our minds. It is a fear none of us would wish on our worse enemy. I hate to see new kids diagnosed on the floor here or in the clinic. It is heart breaking to think another family is now confronting this. I know just how bad it is, how hopeless you feel while you have to show the face of hope. You feel like quitting in the most important time in your life that you can't give up. You don't have the choice to back down. You HAVE to go on and fight and stay positive. I am so sorry I have rambled for so long tonight but last night I listened to a new little patient here cry through the night, the whole night. Katia woke up crying in pain and I just get to a point (I got to it a long time ago-it is just resurfacing) of WHY? Not why us or why me but just plan WHY?

Anyway, please pray for these two boys and visit their sites. I urge you to visit the links in the menus above. Each of those kids have a story of courage and strength but these two right now are the two that I KNOW need your prayers tonight, in the morning and everytime you pause in your day. Please pray for Dustin and Davin.

Hug your kids.
Hug your spouse.
Say hello to those you meet.
Cut people slack when they upset you.
Enjoy the holidays for the true meaning.
Take time to breathe and appreciate that breath.
Count your blessings, literally.
Find the good in everything and everyone.
Know that YOU can make a difference and become a Registered Marrow Donor.

Love, Tracy

PS For those of you who ask, I do go outside at least once a day and breathe. I also pick a flower from this little bush with little yellow flowers. We aren't allowed to have flowers in the hospital and I just miss the greenary. So I take the time to breathe and pick a flower. It is so beneficial to me. Try it:)


******




December 1, 2003 7:30 PM

No more news this evening. The ultrasound of her gallbladder will be in the morning so I may update later than normal. We are due to have her bone marrow aspirate, lumbar puncture and spinal chemo sometime but that will be when there is just an opening available in ICU so that MAY be in the morning too. Not sure. Please pray for Ms. Katia that she will stay healthy and not run into any more problems. We want to be on our way to transplant. The problem is we were very hopeful for a better match to come up but right now the best we have is the cord blood which is 5/6, not bad but we wanted something with enough cell count for a boost, if needed, if we see she isn't engrafting but we will just pray she will engraft. They are still doing the search once a week so something MAY come up but we are relying on God completely to take control over all of this and see Katia through this with flying colors and give her the "New Blood" she needs so she can go to Disney and see Mickey like she told him. The other day she said something about her doctor being in. She said, "She goes home to sleep cause she has good blood." That just really surprised me that she thinks about that. Then when Christina came up the other day for some blood tests, she came by to say bye to Katia. As they walked away Katia sighed and said, "She has new blood now." She is definitely very aware of what is going on and she does know that Myron has been looking for "New Blood" to give her.

Tomorrow is Myron's birthday:) HAPPY BIRTHDAY BABY!
The 14th will be our 16th anniversary!
And then Christmas will be here.
I am very grateful our family will be able to be together for Christmas.

Love, Tracy



December 1, 2003 12:53 PM
Well today there may be quite a few updates due to so many things going on. The first thing is the surgeon's opinion of Katia's lungs and what to do about it. It is his opinion and hope that what is there is scar tissue and not fungus. They really need to biopsy it but can't do that because just to biopsy means removing the lobe because of where it is which would mean she would lose over 60f one of her lungs (not a good option seeing transplant is a must for Katia) so.... we wait for another week and rescan. IF it hasn't gotten any worse, than we believe it is scar tissue and move to transplant. If it is worse, we remove the lobe. They just do not want to have to take her lobe because it would just be way too much for her body. It scares me because I see so much hesitation to remove and I know all the risk so if the decision comes back to remove it next week, I don't know how I will handle that. The waiting is not doing me any good either but I can deal with that right now. I am very hopeful.

As far as the pain in her belly, they feel it may be her gallbladder acting up so we are about to ultrasound that. Could be gallbladder or ulcers since she is not eating anything. Thanksgiving Day she ate the turkey but later said that hurt her belly so she hasn't eaten since. The bad thing is if it is her gallbladder (which would be making her feel like she has gallstones) then they would have to stop the IV nutrition, hence, Katia would lose a lot of weight. Just a day with the nutrition turned down, she loses a pound or more so I don't know what we would do cause she can't afford to lose weight right now but the pain or a bad gallbladder is bad too, so...

Okay, let's see if I can find good news, well she is feeling okay right now and singing along with a Christmas sing-a-long video:)

Thank you for your prayers and check back later for ultrasound results.

OH, one more thing, sometime this week, she is due for more spinal chemo and another bone marrow check and spinal fluid check to see if she remains in remission. We will just go do that as soon as ICU has an opening for us to do the procedure there.

The bottom pain? Well her bottom looks fine, can't say much about internally but it seems to be okay so we will just wait and see what happens with that and give her pain medicine as needed.

Love, Tracy



December 1, 2003 11:50 AM

I have no news yet so I haven't updated. Katia's belly has been hurting her real bad today and nothing seems to be helping. She is crying quite a bit so...
that is why I haven't updated and this must be short. Please pray for good plans for her lungs and that her belly and bottom will stop hurting her so much. God bless. Love, Tracy








November 30, 2003 8:35 PM

Well I am updating early tonight because nothing is really going on and I have the chance to update. Katia is already asleep. There is a baby up here crying a LOT right now and I feel so bad for babies up here. They just don't understand why they are here and why they are alone sometimes. It really breaks my heart.

I am kind of an emotional mess right now (not too bad so don't worry) cause I just finished watching the St. Jude special on BET tonight. That place really is amazing with all they do for the patients there and for all of the research they do for everyone. What an awesome hospital. Like I say, we are all in this fight together. One Cancer family is like family to another. It is just a family we never wish we had to be a part of but there is such a bond and understanding. A lot of things are understood without even being said.

Then there are so many people whose lives aren't affected by cancer but their hearts are and they do everything they can to help either by financial donations, "happy mail", prayers, just all sorts of ways. You are just as important to us fighting this fight. Where would I be without my dear friends and support, yes I mean YOU!

Our family never dreamed we would be dealing with any of this. I have always given change to the Ronald McDonald House things in McDonalds and I sent a check to St. Jude at one time just to help out something that didn't affect me but I saw how those families really relied on that hospital. Now, I am here with my family and Katia fighting for our daughter's life.

During our fight, we found a huge need in helping the National Marrow Registry to grow. Nobody should have to wait for their "Marrow Match" so it is our goal to help educate and raise awareness, donate to the Marrow Drive fund, and do whatever we can to get that register to just grow beyond belief!!

We are working on something which I will introduce here shortly when I feel it is closer to being ready. I am spending a lot of time working on the Webpage and Myron is spending a lot of time with EVERYTHING ELSE to get this going. I just believe when we do something, I want to go full speed ahead and do it right.

Please pray for all the children and families battling cancer but also all of those "not so popular" diseases that we don't know much about. That is why I am trying to add as much information to this page as possible. I want it to be a place of learning and growing. I have learned so much more because I HAD to than WANTED to but I do like to know what other diseases. When I run into someone and they say their child has _____. I want to know what they are talking about. I want to know if there is information I know that may help or at least know how to specifically pray for them. Someone emailed me a link to another Caringbridge page of a disease I knew nothing about. I appreciate that. I spent a few hours reading all the information I could find and then placing a link to some info in the pull-down menu of diseases. I wish there were no diseases but since there are, I try to learn.

Well please pray the news we find out about Katia's lung surgery is a better plan than the last time. I just pray it is less evasive whatever they have to do but at this time and with a transplant right around the corner, anything that means surgery isn't good for Katia. That is why we were so happy when the surgery was called off last time. We knew and still know all of the risk and the lifelong problems she will face. So, please pray for that tonight. God bless each of you and your families. Love, Tracy



November 30, 2003 10:30 AM
Haven't had my coffee yet, so excuse my typos please:)

Katia is a little nauseated this morning but she seems to be getting over it. She wakes up every morning with an upset morning it seems, sometimes vomiting, other times not.

Other than that, we had a good night. Katia woke up a few times very thirsty so she chuggalugs water and then is back sound to sleep.

I am waiting to find out more information on the plans for Katia's lungs so I am restless until I find out what will be going on but I am okay, really.

Katia is on the phone with Myron right now telling him she will get her new blood and go to Disney. I love the way she stays so positive all the time and cheerful. God has blessed her with that HUGE quality!

Love, Tracy









November 29, 2003 10:15 PM
Katia is now asleep after having a fun day with the family all together. She also had fun with her nurses and doctor today:) That is always a nice bonus. I like to see her get along with everyone helping to get her healthy and home.

As far as her lungs, it seems once again surgery is inevitable. I am not sure how extensive the surgery will need to be and probably won't find out too much more information till the end of Monday. The problem is there can't be any of the growths in her lungs to move on to transplant so one way or the next these things have to be removed.

Some people have asked if they could be washed out as sometimes this can be done but due to the location of the growths, this is impossible. So, once again we wait. I am sure we won't have to wait long before this is taken care of in one way or another as the plans have already been thought through but we just have to wait for the surgeons to look at the new scans.

I hate to see Katia have to go through lung surgery no matter what just because of the fact how hard the transplant would be on her without having gone through any lung surgery and this just adds to the risk of transplant. BUT, God has been so good to Katia and I am sure He will continue to walk beside her and hold her hand and our hands as well.

She is so happy about Christmas being so close. Myron's birthday is this coming Tuesday (December 2nd) and our 16th anniversary is on the 14th, then Christmas. I tried to let her know there are other things to look forward to BEFORE Christmas but that is the day she is aiming for. I am not so sure what it is she is after but Santa and the whole idea of the decorations seems to thrill her. We will put a small tree in our room and decorate it together. We always want to keep everything around Katia bright and cheerful to keep that little smile on her face:) I LOVE THAT SMILE!!!!! It tears me up right now to think about it. I don't know why. I just really love my little baby and I hate the fact she has already gone through so much and still has so much to face BUT she really doesn't even understand why. Maybe that is a good thing.

Well, it is cold in here right now so I am going to get something warm to drink and grab me a blanket before they run out. Thank you for your visit and your wonderful prayers for Katia and our family. THEY DO MAKE A DIFFERENCE and that is so obvious. Love, Tracy




November 29, 2003 10:30 AM
Good morning:) We had a good night although sleeping didn't start until around 1:30 AM or so. Katia stays awake on those days she must have that other antibiotic (that is only one time every 14 days). The good thing is she sleeps through the dose but then she wakes up and is wide awake. I prefer that any day over her getting so sick like she has before. Now we pre-medicate her and hope she will stay asleep. She squirms around a lot but she stays asleep.

Right now she is sitting here with her Minnie Mouse ears on watching Sponge Bob! That seems typical for someone her age:) I like to see that. I must add her mouth is just hung open! She is holding one of my shirts which is like a security blanket to her. It is a long sleeve brown shirt that is extra large and very soft. It was my favorite shirt to wear when I was pregnant with her and from the time she was born, she has liked to hold it like a blankie:) Whatever makes her happy. If I put it on, she grabs me and wants me to lay down so she can hold it. SHE REALLY LIKES THIS SHIRT! I had to stop and take her picture so I will be able to show her later in life:)

Thank you for all of the "lung prayers". I am sure heaven is being bombarded with prayers to clear Katia's lungs and prayers are the best medicine:) So keep sending them up!

Please remember to pray for sweet Dustin that his lungs will clear up from the Leukemia. Dustin is right around Katia's age. Well, I will update later today:) Love, Tracy







Please visit a little girl, Christine. We met her a long time ago in the hospital (over a year ago) and now she has a website:) Please take a chance to slip a note in the guestbook:)


November 28, 2003 8:25 PM

Okay, I am going to just pray the doctors come up with a reasonably non-evasive and sure way to rid Katia's lungs of these growths of fungus. I will update more on that when I know more.

What do I do when I need to get my mind off of things? Research! Lots of research. So I put together a list (above) in another pull-down menu of a lot of the diseases I read about on different Caringbridge Sites and hear about at the hospital. I hope they will help to bring more information to those seeking to learn more or are newly diagnosed. That list will be up in a few hours:)

Thank you for all of your prayers and messages of support. They work and will continue to do so:)

Love, Tracy



November 28, 2003 2:25PM
CT SCAN shows no improvement so now we have to figure out how to get in and remove the fungus. It is in both sides of the lungs. The doctors will speak to the surgeons on Monday. We are trying not to get too down about this because we just can't start to fall into a slump. I really really thought it would all be cleared up. Last time over 5 days it shrunk significantly. This time over 10 days, no improvement which means the medicines have stopped working. I am worried about it getting worse so please just pray we get answers on Monday and it doesn't mean that evasive surgery. We thought we had escaped that. Everyone felt this would clear the problem. Love, Tracy




November 28, 2003 10:50 AM

Just a quick note to let you know Katia has her CT SCAN of her lungs around noon today so pray they are finally clear and we can move on. If they aren't clear, I am not sure what the plans would be but I think they must be clear by now:)

Please remember to pray for Davin today as he has brain surgery. It was scheduled for 7:30 this morning.

Thank you for dropping by:) I will update when I know more. Love, Tracy







November 27, 2003 8:00 PM
{{{{{DRUM ROLL}}}}}}}

KATIA HAD 14 BITES OF TURKEY, A COUPLE BITES OF MASHED POTATO, AND A BITE OF YAM PLUS SHE HAD ABOUT 3 OR 4 OUNCES OF JUICE!!!!! WAIT, THAT IS NOT ALL! THEN LATER SHE HAD 12 MORE BITES OF TURKEY WHICH SHE ASKED FOR!!!!
THANK YOU! THANK YOU!

Isn't that super! It just made our day and then she ran around saying she was a turkey and saying, "Gobble Gobble" and flap her wings running around the room! I will add pictures in the next hour:)

Okay, more news (I am not sure if they are good) but she also gave us a POO POO sample to send off and see if she is getting better to get out of her room!

What a great day for us and Katia!!!!

Simply grand! Even though we are in the hospital (day 93) we had a very very nice time and we will remember this Thanksgiving always and forever as a day we found many reasons to give thanks.

I am working on the pics:)

Love, Tracy




November 27, 2003 9:00 AM
If you haven't had a chance to read our Thanksgiving messages below, please do. They are from each of us to you.

This morning Katia is waking up with a very sore bottom and belly. She is getting medicine right now and hopefully her day will take a better turn in the next hour or so. I did hear her giggling this morning while she was dreaming. I love to hear that.

Today we have some of our favorite nurses here spending their holiday with us. These nurses and doctors take so much of their lives to help their patients and they do it with such loving attitudes. I woke up to a nice Happy Thanksgiving message on our board:) Some people say it is their job but let me assure you, they go WAY beyond their job here. Thankyou so much to all of you that are here today or home today. You are all great!!!

Please keep some families in your prayers today. I have shared with you Dustin's Site. Dustin is literally fighting for his life today. His family is just worn out but so hopeful and I know today is especially hard for them. They have an 8 year old that they don't know how to share with her that her brother may soon be earning his Angel Wings. Also please pray for Mark as he was taken back to the hospital. His parents are actually both nurses at the hospital he is treated in so I am sure they are completely burned out of the place and really did not wish to spend Thanksgiving there. They are such a sweet family we met at the Children's Cancer Center in Tampa. Also, please pray for Davin as he faces brain surgery first thing in the morning. They are very nervous about the surgery and what the news will be from the surgery. There are so many more that we keep up with and that is why I have put the list to so many sites above in the pull-down menus. As always, if you know someone I haven't listed in those pull-down menus that you think I should add, please leave me their name, diagnosis, and link in the guestbook or email. God bless. Take a chance to read the messages below if you haven't.
Love, Tracy

PS
I am so thankful for the family I have and will be spending today with. I love you Myron, Sharayah, Tatiana, and Katia. You are the greatest!!!!! God blessed me so much with each of you and your wonderful qualities and all you each bring to my life. I LOVE YOU!!!

Love, Mommy





November 26, 2003 10:15 PM


From our home to yours. These are
Thanksgiving messages...

*******************************


Tatiana's

WHAT I AM THANKFUL FOR?

I am thankful even if Katia is in the hospital. I am grateful for God keeping her strong, that I am thankful for. I am also thankful for everything people have done to help the family like giving us food. Last, I am thankful for my family which has stuck together like glue and paper. THE END, TATIANA

**********************************

Sharayah's

THANKFUL...

I am thankful that my family can be together this Thanksgiving. I am thankful for two great sisters whom I love very much. I am thankful that I have parents that love and care for my sister and me and that are both such amazing people. I am thankful my Scruffy (Peek-a-poo Family dog) is around for another Thanksgiving. And I am thankful to know that God put so many amazing people on this earth who are willing to take their time to tell people in hard times, they care and are praying. SHARAYAH

*******************************

Myron's

This Thanksgiving I would like to give thanks for my family.
Tracy is the core! She has managed to keep everything in place, even though she is not home. Her strength and love gives her family direction and purpose. She amazingly overcomes every obstacle with optimism and determination. Her strength inspires so many. Tracy, you are a wonder and I am so thankful for you.

Sharayah and Tatiana have stepped up to the plate when we needed them to the most. Their bright smiling faces, their positive attitudes, and their focus on their schoolwork is impressive. Even though life is tough right now, they have managed to believe in miracles, as they live them everyday! Daddy's little girls, I love you!

Katia... Katia is The Miracle that makes us all better people. Because of the Wonder of Katia, so many lives have been touched! She is such a wonderful little being who gives me love, a pure love, that comes from above. Katia is my baby!

Family and friends, two words that have kinda fused together for us while we have been going through these times. We have been exposed to such wonderful human beings, people who give their love, their prayers, and their support without hesitation! Thank you for all you do.

God, who gives us all the strength to live and love. Even in the darkest of times, He gives comfort. It is truly an amazing LOVE.

Happy Thanksgiving to all, know that we are thankful for you today.

******************************

Tracy's

THANKSGIVING IN A NEW LIGHT...

This Thanksgiving is like no other for me. I have learned so much even since last year. This time last year I was so thankful to be home with my baby and my family all together. We had just had a huge scare with Katia when she stopped breathing and spikes 107.8 fever! Last year, I was just full of amazement with all God had brought our family through and what a miracle He had shown through Katia.

I had a deep thankfulness to the doctors and nurses we had grown so close to and had brought Katia to remission and through the completion of her chemo treatments.

I had a huge appreciation of life. Sounds like enough to be thankful for?

I didn't have Caringbridge last year. I didn't start this page until November 18, 2002. I CANNOT SAY HOW THANKFUL I AM FOR ALL OF THE FRIENDS AND FAMILIES I HAVE GROWN SO CLOSE TO THROUGHOUT THIS LAST YEAR!!! I learn so much from each and every person that contacts me, leaves guestbook messages and all the kids I have grown to love by following their journey. Through Caringbridge I have learned how devastating these diseases are but also how so many miracles can and do happen. I have seen children go from happy and healthy to becoming an angel. I have seen children so close to death be on a complete rebound just days and weeks later and now are doing wonderfully. I have learned to appreciate every moment, no matter how small or insignificant they may seem. I have learned that everyone has a quality in them that only that person has and we must learn that from each person we meet. Everyone really is here for a reason. What is yours? What is mine? For all of this experience and learning and the opening of my eyes to a whole new world, I am so very very thankful!

I am so thankful to the media that has taken Katia's story and touched so many hearts to lead people to do something to help. No matter how small each person's gesture, it makes a difference. You are saving lives!

I am thankful for the growth in the Marrow Registry. I am thankful that God has directed us to this mission to help make that registry continue to grow as long as people need Bone Marrow Transplants-until cures are found.

No matter how many ups and downs we have traveled in this journey of Katia's and our family's, I have learned and grown. Am I thankful for this journey? I do believe everything happens for a reason. We may not know the reason. I do think we have so much control over what we do with our time on this earth and I am thankful for having such a support group in my friends and family and such an important goal to aim for.

I am most grateful for God. God gives me the strength I need each day to face what I must face and to make decisions on a moment's notice. I do not ever hesitate to lean on God for an answer cause I know He is always there for me.

Thank you to all who have come and continue to come to this page. Thankyou for all of your prayers and support and your wonderful words of wisdom and encouragement. God has put you in my life to be there with those words.


HAPPY THANKSGIVING TO YOU AND YOUR FAMILY.

Love, Tracy









November 26, 2003 6:00 PM
Well we are having some "medicine problems". Katia just can't keep down her medicines so it looks like she will get them IV but that doesn't work as well since the problem is with her stomach.

I have taken out the table above and put in a "drop down menu". I will be adding names over the next few days and I hope you can take a chance to visit some of these childrens' sites. The sad thing is how the list keeps growing with new children being diagnosed or others earning their "Angel Wings". This has to stop.

Today I have really had a lot on my mind as the holidays are approaching and there is so much lying ahead. I am not going to let this get my down. There is just a lot of sorting to be done with my thoughts so don't be surprised if I update MORE often to clear my head.

I am thankful we will be together tomorrow. Please look for our Thanksgiving message tomorrow. I hope to make it very special. God bless each of you and your families. Love, Tracy



November 26, 2003 12:23 PM
Well I just realized I hadn't updated yet today, I am so sorry:) I don't want you to worry. We are okay here. Katia has been vomitting each morning and we are trying to figure out why. I am trying to get one of her medicines changed to a pill to see if that would work or back to IV which isn't the best form since it needs to get into her belly. But, right now she isn't keeping any of her medicines down. That is what we are working on right now.

But, the reason I am late is I am reading some Caringbridge sites that I haven't checked for so long. In some cases, there is a lot of good news and in other there is not. It is amazing the similarities though of all of these pages. The parents notice EVERYTHING about the child. We measure each piece of food, notice any temperatures or changes in color of face or skin. We are thankful for so many little things and don't notice a lot of the "big" things. That is why I say so many times, we are in this all together.

There are so many people, not affected by cancer in their lives, that come by and regularly check Katia's page and I have to commend you for that. It is so hard to read the ups and downs each day, I know. There is a "connection" you feel with Katia and these other children and with that comes a huge risk. I understand this and so admire you for coming by and showing how much you care. In the table of names above there are a lot of "angels" up there. Those are kids that have earned their angel wings. The parents and families still update the pages, for the most part, and enjoy hearing from people. One thing most of them will agree with is to continue using the child's name. I haven't been by a lot of the sites of passed children lately but not for any reason other than time does not permit. I am slowly trying to go by. Although I don't get by the guestbook, please know you are in my prayers throughout the year but especially during these holidays approaching.

I pray everyone will eat a TON of Turkey tomorrow (sorry Turky families) and enjoy your family time together. We will be all together here at the hospital. I will update though. Please pray Katia will eat at least 5 pieces of turkey! That is my personal goal for her.

God bless each of you. Love, Tracy


Please remember to go by Dustin's Site and wish them your Thanksgiving wishes. Dustin is fighting so hard to make it through this holiday season and his parents' hearts are just weary but full of hope and fight. Also please go by Mark's site as they ended up back in the hospital today for Thanksgiving also. They are a sweet family we met at the Children's Cancer Center. Both of his parents are actually nurses at the hospital he is treated at so that is basically their home. Love, Tracy











November 25, 2003 6:35 PM
I have just learned not too long ago that Tommy Bennet has just earned his Angel Wings. He was fighting a hard fight with Sanfilippo Syndrome and his brother and sister are still fighting. Please go by and meet this family. They could use your encouraging words and also you can learn about the amazing battle these children are having to fight. This is a very rare disorder.

Katia is resting right now. It seems she now has a horrible cold just out of nowhere. Pray this does not affect her lungs in a bad way. We will keep her on Benedryl through her IV to try to help her from getting too congested but that makes her tired and cranky. She is asleep here right now snoring:)

Love, Tracy



November 25, 2003 4:45 PM
I have to ask your prayers for a little boy, Dustin and his family right now. Dustin had transplant on September 12, 2003 and right now things look very very bad for him. He was thought to have pneumonia but now they have found out his lungs are full of pneumonia. Here is a portion of today's update from their journal. I really urge you to go by and leave a message for them. I know how important the messages left in the guestbook are and that is why I ask others to sign guestbooks of kids and families I know needing emotional support. Dustin just turned 4 yesterday.
This is going to be the hardest entery that any parent has to do. We were told this morning that it is most likely not pnuemonia or an infection. Our worst fear has happened. His lung are filling up with the luekemia and his doctors are going to try giving him small amount of chemo to see how he responds. But Dr. Krance had said that because of his past and Dustin never going into remission and that all other treatment have failed that the lymphocytes would probably not work either. They will give him the chemo for a few day and if nothing happens then we will just spend the rest of Dustin's day with him at home. We would have the option of when it is time that he be placed on a ventilator.

I just can not beleive that it has to end like this. I was so hopeing that Dustin would have his transplant and be put back and remission and we would spend the rest of our lifes as a happy family of four.


I have a table of links above the journal entries with a lot of the kids names that we try to check up on. Please, when you get the chance, use that table and visit those kids. We are all in this fight together and I have learned so much and grown so much by reading about these kids and their stories. Love, Tracy




November 25, 2003 10:28 AM


This was sent to me via email and I wanted to share it with you.


THE COST OF A MIRACLE




Tess was a precocious eight-year-old when she heard her Mom and Dad talking about her little brother, Andrew. All she knew was that he was very sick and they were completely out of money. They were moving to an apartment complex next month because Daddy didn't have the money for the doctor's bills and their house. Only a very costly surgery could save him now and it was looking like there was no one to loan them the money. She heard Daddy say to her tearful Mother with whispered desperation, "Only a miracle can save him now." Tess went to her bedroom and pulled a glass jelly jar from its hiding place in the closet. She poured all the change out on the floor and counted it carefully. Three times, even. The total had to be exactly perfect. No chance here for mistakes. Carefully placing the coins back in the jar and twisting on the cap, she slipped out the backdoor and made her way 6 blocks to Rexall's Drug Store with the big red Indian Chief sign above the door. She waited patiently for the pharmacist to give her some attention, but he was too busy at this moment. Tess twisted her feet to make a scuffing noise. Nothing. She cleared her throat with the most disgusting sound she could muster. No good. Finally she took a quarter from her jar and banged it on the glass counter. That did it! "And what do you want?" the pharmacist asked in an annoyed tone of voice. "I'm talking to my brother from Chicago whom I haven't seen in ages," he said without waiting for a reply to his question. "Well, I want to talk to you about my brother," Tess answered back in the same annoyed tone. "He's really really sick... and I want to buy a miracle." "I beg your pardon?" said the pharmacist. "His name is Andrew and he has something bad growing inside his head and my Daddy says only a miracle can save him now, so how much does a miracle cost?" "We don't sell miracles here, little girl. I'm sorry, but I can't help you," the pharmacist said, softening a little. "Listen, I have the money to pay for it. If it isn't enough, I will get the rest. Just tell me how much it costs." The pharmacist's brother was a well dressed man. He stooped down and asked the little girl, "What kind of a miracle does your brother need?" "I don't know," Tess replied with her eyes welling up "I just know he's really sick and Mommy says he needs an operation, but my Daddy can't pay for it, so I want to use my money." "How much do you have?" asked the man from Chicago. "One dollar and eleven cents," Tess answered barely audibly. "And it's all the money I have, but I can get some more if I need to. "Well, what a coincidence," smiled the man. "A dollar and eleven cents, exact price of a miracle for little brothers." He took her money in one hand and with the other hand he grasped her mitten and said, "Take me to where you live.
I want to see your brother and meet your parents. Let's see if I have the kind of miracle you need." That well dressed man was Dr. Carlton Armstrong, a surgeon, specializing in neuro-surgery. The operation was completed without charge, and it wasn't long until Andrew was home again and doing well. Mom and Dad were happily talking about the chain of events that had led them to this place. "That surgery," her Mom whispered. "was a real miracle. I wonder how much it would have cost?" Tess smiled. She knew exactly how much a miracle cost... one dollar and eleven cents ...... plus the faith of a little child. A miracle is not the suspension of natural law, but the operation of a higher law



Melanie Davila
Lighting Children's Lives
http://www.lightingchildrenslives.org



"In dreams and in love there are no impossibilities."-Janos Arnay






November 25, 2003 10:00 AM

Good morning to all! We had a nice night and slept well here. I didn't want to get up this morning but Katia wanted me to wake up so I did the 1, 2, 3 and jumped up:) She is on the phone with Daddy right now telling him about her morning so far. She talks about her morning like she is at Disney and I so admire her strength and happy moods throughout all of this. Like I say all the time, SHE IS MY HERO!!! I am going to tell her that when she gets older.

The CT SCANS are set for either the 28th of November or the 1st of December. I am not sure yet but I will keep you posted. Those are the SCANS to check her lungs and just pray the growths are 100 percent GONE!

Well, I need to get my coffee together so I can think clearly. Thankyou to all of you asking how my back is. I have been living on Aleve the last few days but it does seem to help. I just think my back pains are nothing compared to everything Katia has gone through with pain and needles and medicines. Who is my hero? KATIA!

Love, Tracy






November 24, 2003 8:00 PM

First, I asked Katia if she wanted to say to everyone and she said, "Thanksgiving everybody" so I think she means Happy Thanksgiving:)

Well I am much better this evening. We had a great day today and played and we both swiffed (use the swiffer) the room and this evening Katia was loading me up with kisses. So... I am going to just go one day at a time and be happy with each day as we get it and as we go to bed peacefully at night. I am sure God will give us the strength to face each new day as it arises.

Well, I can't type too long cause as I said, Katia is giving me kisses and hugs and I don't want to miss a single one. When your kids give you your next hug, squeeze them extra tight until they either think you have gone nuts or that you just won the lottery. It gives you strength to give hugs:)

I am STRONG now! Love, Tracy

PS Please take a chance to visit a little friend of ours, Mark. He is fighting Wilms Tumor and he could really use some cheering up with guestbook entries. I know you guys are so great at that!!!


********************



November 24, 2003 10:19 AM
Good morning. We are right here talking about Disney world and I realized I hadn't updated this morning so I better get to it:)

I am not sure when but I know Katia's scans of her lungs should be redone in the next few days so please pray they are not only improved but almost or all the way gone (the growths inside her lungs).

I sit and look at Katia right now and if it wasn't for her bald head, I wouldn't even imagine she was sick. I think of the road that lies ahead with transplant and all the stuff her little body must endure and it scares me. It really does. I pray that God will get her through transplant keeping her happy and healthy along the way. She is too young for me to explain why she is sick. She is so looking forward to the day she gets her new blood and she knows daddy has been trying to help find her new blood but she doesn't realize how hard it is for her body to except that new blood.

She still has so much chemo and radiation still ahead of her which we have been away from for quite some time now. These last few weeks have just been antibiotics and nutrition. She had some chemo to her spine but that really doesn't have many side effects. As I type this she is all talking about her new blood and that after she gets it she gets to go home to her swingset and go to Disney. She doesn't realize we are stuck around here for around 100 days after the new blood and that she will be feeling badly and locked in her room. I can't bring myself to burst her bubble because I can't think of any good to come out of saying anything. I am just taking this one day at a time with her now. I don't tell her she has anything to do (like CT SCANS or MRIs) until right when we are about to head down to do them because it gets her so sad so why stretch out the sadness, you know?

I just love to see my little baby happy and chatting and playing. Why can't it just always be like that?

I am sorry if I have bummed you out but I will really try hard to be more positive by the next time I update. Love, Tracy






November 23, 2003 10:00 PM

Okay, you won't believe who called Katia!!! Mickey Mouse!!! YES, that is right and she was sooooo happy with this HUGE smile on her face so big I thought she would POP!
Thank you so much Disney:)
She told him he was so cool and then he said Minnie Mouse would call later with Donald Duck but she was in the castle.
Katia called her sisters and daddy and told her nurses about the call. She is asleep right now and I am sure she is having DISNEY DREAMS!
Her thing is she is always saying we will go back to Disney after she gets her new blood. She is so sweet and she really wants to get back to Disney. Her last trip was December 13-15, 2002 for R.O.C.K Weekend with the American Cancer Society. She had so much fun and that was also our 15th wedding anniversary on December 14, 2002. All around it was such a great family time together and we all had fun AND Katia finally got to kiss Mickey on the nose:)



The other day, one of her nurses went to Disney and brought back a Minnie Mouse dressed in a ladybug dress! I mean that is just Katia's pride and joy! Right now she is laying on her ladybug pillow, wrapped in her yellow blankie and I am sure she is dreaming about Mickey and Minnie and all their wonderful friends and castles!

I am so happy that she was so happy!

God bless everyone. Love, Tracy



November 23, 2003 3:06 PM
Well I have been working on the TABLE above to list the childrens' links in instead of having such long list. BUT I am having a problem with all the space above the table. SO if you know how to correct that, email me and let me know. I have to stop messing with it, or I will mess the whole thing up. Katia is here watching the Wizard of Oz and playing around. She gets so active she scares me spinning around. I don't want her to hit her head or anything but I love seeing her play and laugh:)

Myron is on his way here so I want to keep this short. BUT, if you know how to fix the table and move it up on the page (maybe you know something I haven't tried) then please email me:)

Love, Tracy


November 23, 2003 10:25 AM



We had a good night. Katia, again woke up vomiting a little but not too much and they aren't sure why really. She is fine now and happy.

Some writers wrote a new rap song for Katia, very nice and it was played last night, along with the "Katia's Song" on 88.5 FM so for those of you in the Tampa area, maybe you will hear the song on 88.5 or call in to request it. It turned out very nice and with a very good message.

Our plans today? I am not sure. I am going to work some on the webpage to make some changes but I don't want to take too much time away from Miss Katia so... we will see how far I get.

If you haven't read below, we lost another child to Leukemia last night, Noah Jay. The link is below to visit his page. Too many children, too early.

Love, Tracy



~~~~Thank you for checking our new journals~~~~




November 22, 2003 11:30 PM
I have just learned that Noah Jay has gone to be with our Lord. Please take a chance to go by and offer your words of encouragement and support to his family at this time as I am sure he will be so missed. Sometimes people will say that the child is pain free and better off but I can't see it that way. A child's place is with the parents that love the child so much. God does loan us our children but we are human and we want to keep the things we love. Also, this earth needs these beautiful angels right here. Fly free Noah as a beautiful butterfly but know you are going to always be loved and missed.




November 22, 2003 10:14 PM

Well, I just realized what time it was! WOW! I was just trying to go by some Caringbridge sites (which I really miss doing) and give out some thanksgiving wishes and catch up on updates. I am going to be making some changes to my page probably tomorrow for some very needed prayer request. I feel so bad that I am so out of touch.

Today went well. The morning started off bad with vomiting but the rest of the day went good. Katia had a LOT of fun singing and dancing with her sisters and SpongeBob! Myron and I got to relax some and just be a family. It was nice.

My dad came by a little in the morning so all in all the day was quite nice.

Katia is asleep right now going through her nightly routine of one medication after the next but at least she gets to be unplugged from her IV pole for about 6 hours a day which is great!!!

Please continue to pray for her that she will remain happy. She gets pretty down all the sudden like she realizes how much she misses home and just stops talking for awhile. Then she will start coming around and just nod her answers and then finally talk. She also gets upsetted very easily by someone laughing (she takes it that she is being laughed at) or if I have to call her down for something- her worst is when I tell her to calm down or she is going to get hurt. That really makes her mad but I couldn't dare let her risk hitting her head or slipping and falling. We don't need any more problems to arise right now. I am sure she understands though.

Well I hope she will eat some on Thanksgiving. The hospital is having a meal here downstairs so we plan to spend the day as a family and bring some dinner up to the room so we can all be together. I am thankful we have the opportunity to eat together.

Well, my back is very very sore and I need to stretch it out some how. It really stays messed up so bad lately but my back has to stick this whole thing out with me. So, please pray for my back:) Love, Tracy



November 22, 2003 8:30 AM
Good morning:)
We had a nice night. I don't think we got up one time if I remember correctly and that is just unreal!!!
Right now Katia's belly is hurting but that is usually cleared up once she is more awake and active.
The MRI results look good on both the brain and the eye. The brain lesion is no better or worse but we haven't done anything to treat that yet so I didn't expect it to be better and we just pray it doesn't worsen. They eye is the same as last scan which is clear and good.

There is a little boy who just recently had transplant. He has just relapsed again. His name is Dustin. Please visit his site and pray for him. Katia is throwing up. Love, Tracy


9:27 AM
Let me finish this update. Katia has just been really throwing up quite a bit this morning so I couldn't concentrate but she does come first.

Anyway, more on Dustin. I haven't kept up with Dustin for too long a time but he just recently had a transplant and since Katia faces transplant, i have tried to stay in touch more with those just having transplant so I know what lies ahead and also it helps me know the right questions to ask. Well, yesterday I heard that Dustin had just relapsed again. I know he is about 70 days post transplant. Just please pray for him. I try to make a point to pray for everyone going through life threatening and life changing situations. I am sometimes overwhelmed by all that I DO know and then it really catches up with me when I imagine all that I DON'T know!! So many people's lives are just upside down right now and tomorrow's hopes turn into tomorrow's dreams sometimes.

I have really learned to take one day at a time or I wouldn't be able to get up each morning and face a new day. I try to really really appreciate little things and dwell on that instead of the overall picture. Don't get me wrong, I am a very very realistic person but I chose to trust God to do the looking ahead and for me to just take care of the here and now with His help.

I have kept this page going in the hopes to really make a difference in the lives of patients and families facing difficult times, not just cancer, but all difficult times. Sometimes people say, "My problems don't compare to yours..." but that is not true. Although someone's problems may not SEEM as important, the fact is, they are THEIR problems and therefore very important for them.

Well thank you for letting me babble. That was on my mind this morning and I had to come share that with you.

Have a very nice weekend and if you see a ladybug, send it Katia's way. My understanding is that up north they try to get in your houses to escape the cold weather:)

Love, Tracy




November 21, 2003 11:00 PM
Well Myron and the girls just left so we are off to bed. We are watching The Wizard of Oz on the SuperStation. Katia is very into it. I didn't think she would like it but she really absorbs movies now and likes to watch them:) That is good.

Well, right now I am so tired I can't really think to type so I should bid good night:)

God bless each and everyone of you:) I keep having to stop cause Katia is having booty pain and they hooked some medicine up for her which makes her comment throughout the whole 15 minutes it is running on how much better she is feeling. I am glad the medicine helps her. Her feet were bothering her much of today and her butt bothers her but both are better now and we should get through the night okay:)

She is all happy cause I washed her yellow blankie today and she loves it cause it is so soft but I had taken it from her today to wash and when I came back, I put it away and didn't give it to her. I didn't know why she was being so pouty until she finally asked for it:) Poor thing.

"Enjoy your yellow blankie Miss Katia."

Well thank you for coming by and checking on us. Good night:) Love, Tracy




November 21, 2003 2:30 PM
Good afternoon:)
Okay, I have been reading the guestbook (I always check it throughout the day) and since I can't respond to people individually I need to answer a few questions here.

First, there was one about Katia's sisters not being a match for her and how is that possible. Well sibblings have about a 25hance of being a good match and neither Sharayah or Tatiana were a good enough match. Both were 3/6 as well as Myron and I both were 3/6 match for Katia. Sometimes people are lucky and either a parent or a sibbling can be a perfect match but no in our case and not in most cases. I hope that explains things better. Thank you for asking.

Secondly, why did we have to move rooms? Well we were in that room for about 80 days of our 87 day stay here so far and since Katia did have something contagious (the same thing she does now) then they really need to go in and do a complete (terminal) cleaning. Which means all the furniture has to be taken out and cleaned, curtains and blinds taken down, floor buffed and resealed, bathroom and fixtures sterilized, etc. It takes quite a bit of time to do all of that and since you can't just have Katia out of her room for 5 or 6 hours, the easiest thing to do is just transfer her to another room. So we moved right next door. I am grateful we haven't moved rooms more than that. There are times we have had to move rooms every 5 days or so because of a need to transfer different patients around and you just have to go with the flow so we have been grateful to not move too often. We don't plan to move now until we are ready to move to the transplant ward which is only 7 doors away so... hopefully we stay here until then:)

Thirdly, people always ask how they can help. Your prayers and visits to this page mean the world to us!! Especially me. By coming to the page, you know specifically what is going on and what to pray for. By signing the guestbook, you are leaving me wonderful words of enouragement and I am just so touched by reading those entries. I also print them and save them for later in life to show Katia when she can read. I just want her to see how many people cared about her and helped her get through this journey. If someone would like to help me by printing the guestbook (from September 19th to now) that would be a HUGE help. I pre-warn you, it will be a lot of printing but we try to do it more often. I just haven't been home enough to print that out. The last time I printed was September 18th. Alot of people that visit me actually flip through my pages and read the guestbook entries and are like, WOW, that is so sweet. So you can contact me via email if you wish to take on this task.

***3:30 PM Thank you Karen for taking on the task of printing the guestbook. That is such a weight off of me. I appreciate your doing this for me. God bless you.

Please just continue to drop by and of course, PRAY. Obviously prayer is getting us along in this journey and although sometimes things seem so bad, I know God is there to hold our hand and get us through.

I just so much appreciate each of you and I hope you know that. I am sorry I can't answer all the emails and guestbook entries but when I see things I will try to respond like this so I can answer some questions. I appreciate your caring enough to ask those questions.

Love, Tracy

PS Sometimes I will get an email saying someone doesn't know what to write in the guestbook or they figure the guestbook is just for friends and families. YES, you are my friends and anyone is welcome and urged to sign the guestbook. Just let us know you dropped by:)



November 21, 2003 11:07 AM
Good morning:)

Well we finally got a little shut eye last night. We were up around 9:00 so that isn't too bad.

Katia woke up and said, "Look at the new room they made me!" I am glad she approves. My back is still recuperating:) I have a horrible back and sleeping in the hospital and just the routine I have now just keeps me a mess but anything that makes my baby happy:)

Well, Katia is going to be a featured kid for the month of December on the "Fight For a Cure" website so if you get the chance, drop by. I will add the link above so it will stay there. The page for her turned out really cute:) Thank you, "Fight for a Cure". Take the time to look around their site and there is a link to Katia's page there so you can see her featured page. There is another place she was the featured child of the month for November. I had the link here but let me put it again and I will also add a permanent link to the top. It is "Lighting Children's Lives" . This page is very full of positive stories and information:)

I appreciate so much people sharing Katia's story. So many people have come forward and asked if they could make flyers about Katia to hand out with a link to her webpage so people can learn more about Marrow Donation and Katia's story. Our local radio stations have allowed us sharing our story and Myron's song to everyone in the Tampa Bay and surrounding areas. The News channels have shared Katia's story and the urgent need for Marrow Donations for everyone awaiting transplants. So many people have just come forward in different ways to do Marrow Drives or Fund Raisers. This is so appreciated by us and no words can express our thankfulness. Myron has now gone on unpaid medical leave through the Family Medical Leave act, for the present time. This way he is not getting himself too deep in a whole with his vacation time which he has used up. Some of his coworkers actually donated their leave time to Myron which has now been exausted. His job is secure for when he is able to go back BUT since it is a security job (airport security) they need Myron there with his full mind and right now, that is not possible and they know that.

I keep having to take breaks here cause Katia doesn't feel too good so I better update this and be able to deal with her:)

God bless you. Thank you for coming by to check on Miss Katia:)

Love, Tracy






November 21, 2003 12:01 AM

Do you see the time? I am so sorry to be updating so late. We were moved from one room right next door so we had to transfer all of Katia's stuff!!! The main thing is the new room is a tad bit smaller and completely opposite the other room and I like to put things back the way they work and that was impossible PLUS we had to move all of the cards off the walls and windows and such! I said, 20 minutes. It turned into over 2 1/2 hours. Myron just left to go home. Katia has no idea yet that she is in a different room:) We will see how she reacts. We tried to make it as close to the way the other one was as possible but like I said, the whole room is flip-side opposite so...

Well, I am exausted! I have no news from the MRI today, actually we never even saw a doctor today. I am not sure why but that is fine. Nothing has changed. They are adding more time to her nutritional IV meds because she is losing weight but that is all that has changed. She is taking her medicine by mouth 3 times a day and is doing fine taking it. She knows it is to make her tummy feel better and to get her back out of her room hopefully within that 14 day period. She has to have 3 diapers negative of any of the toxins before she can get out though.

Well, I am tired and I want to go to sleep.

OH, Grandpa did come visit today and was here a few hours. Katia was quiet at first but then that was not a problem. I am glad to have my dad in town for a bit and YES of course, we had our coffee:) Love, Tracy

PS Good night... Don't worry if I don't update till late in the morning:)



November 20, 2003 8:50 AM

Good morning:)
Katia is down in MRI getting her "pictures" taken. I really think she has had enough of the "Sears Studio" here at All Children's Hospital! She does okay though now with going there. It was almost cancelled cause she started throwing up right before we went down there but we sat in there for a while and she didn't throw up anymore so they took her.

Her grandpa arrived yesterday. My dad. He lives in Honduras so we see him about 2 times per year. Katia is looking forward to seeing him. She remembers one thing about his last stay. He was sitting out on the back porch at our house and Katia was out there and pointed out a little bug crawling on a table out there. Grandpa smashed the bug with his finger (it was a gnat) and Katia just thought that was hilarious! I am sure she will bring it up to him when he comes to visit today. It is amazing the things they remember:)

Well, I have to get back down there to pick her up from the MRI area. She should be done by now. This is an MRI of her eye and brain so we should know more about these late this afternoon.

God bless each of you and your families. Love, Tracy






November 19, 2003 7:40 PM

Well we are back in isolation at least for 14 days. Her labs came back positive (which I expected) so that means we are locked in. I reorganized the room last night and today since I figured she would be positive. I could just tell. She isn't too happy about it but it is just something we have to do. So, we will catch up on watching movies and coloring for a while I guess.

Last time the 14 days turned into about 68 days so pray this time doesn't drag out. She started her medicine this afternoon (by mouth 3 times a day-yuck) so hopefully the cramping will stop by morning time. She does understand this medicine really does make her feel better so she takes it fine.

We will have the MRI done in the morning, it sounds like around 8:00 AM if things stay the same. I won't know the results until late in the day or possibly by Friday morning.

One of our doctors had a baby yesterday. I told Katia the doctor had the baby that was in her belly. Katia said, "Yuck". That is 3 year old mentality. Maybe I shouldn't let her watch the "Baby Story" on the TLC channel:)

Well, that is about it for now. Since Katia was locked in her room all day, she is FULL of energy (maybe I should get her a treadmill!)

Thank you for stopping by:) Love, Tracy

PS Sorry no new pictures. I will work on it.






November 19, 2003 12:00 NOON

Well, I have put off updating for no reason other than I have been organizing around the room and since it is a rainy, sluggish day here, we got up a little late.

Katia is feeling okay, still cramping a lot so I am curious to wait for these labs to return on her stool samples from yesterday.

No news yet on exactly when the MRI will be but it will be tomorrow or Friday.

We had a good night. Katia had a bad dream and woke up crying but she was back asleep in about 20 minutes. I told her to pray for sweet and fun dreams!!

She is such a good and happy baby that she gives me strength:) I am so much an admirer of Katia as well as her lucky Mommy!!!

Hopefully she will feel good enough to get out and walk around some today. With her belly bothering her, she doesn't like to be walking around but if she comes back with a positive lab for the C-Dif, she will be back on isolation so I am not really wanting her to be anywhere she can get other kids sick IF she is positive so we plan to spend a quiet day in our room and wait for labs.

For those of you coming by after hearing Katia's story on Joy FM today, thank you for your visit! I hope you will sign the guestbook and let us know you were here and also come back to keep up with Katia's progress throughout this journey of healing! Katia is going to have an amazing testimony someday:)

Well, God bless each of you and I promise I will try to update pictures today. She hasn't felt well for pictures so we will see what we can do:)

Love, Tracy







November 18, 2003 11:40 PM

Oh how I wish I could respond to EACH AND EVERY message in the guestbook!!! Let me tell you how important you are to me! I look so forward to checking messages and hearing from each of you. I feel like I know most of you so well. I do know that you are such kind and compassionate people who have something so great in common with me, a LOVE for Katia!!! Thank you so much for caring so much.

Katia is resting now and I am going to catch some zzzz's. Please pray for her tummy and bottom. They are both quite sore and getting her upset but she is very comfy cozy right now and sound to sleep. I prayed she will have a good night rest and I told her to come over to my dreams:)

Love, Tracy



November 18, 2003 3:50 PM
THE SCANS SHOW CONTINUED SHRINKING OF THE GROWTHS!! So we rescan in another week to 10 days and hope they are completely gone. Please pray they continue to go away and we can be done with all of this problem with the lungs. We also scanned the kidneys (GREAT), the rectal area (GREAT), the abdomen (GREAT), so all that shows good. We did send off another diaper specimen today since she has been cramping and having some runs to see if her bowels are infected again so I should know more on that by Friday I hope.

I am so very pleased with today's tests!! We will have the MRI of the eye on Thursday or Friday but I am sure that should be okay:)

I just want to move forward to transplant. We are still looking for a closer match but if we get there and nothing closer is found, we are prepared to use a cord blood. Of course, it would be a lot less risky if there was something closer matched. Katia's body has already been through so much, we don't need marrow rejection! We need all of this to wind down with a big successful transplant to get her to that high school graduation and the dance with daddy at her wedding. Please pray something closer will come up on the registry. The other problem with this cord blood is there isn't enough for a followup boost so if there was a boost needed, there would have to be a new marrow donor found and well we know how that is going so please please continue to register.

Let me share this. There are two locations open with Florida Blood Services where you can go register on any business day and they are fully funded. One is in Tampa on Kennedy Blvd. and the other is in St. Pete on Martin Luther King Blvd. The information is right above the journal updates above.

Love, Tracy

November 18, 2003 9:40 AM

We are waiting to go down for the scans so I figured I better update while we wait. Katia is having a hard time today drinking the contrast. She keeps throwing up and her belly has been bothering her quite a bit the last few days so needless to say, we change a lot of sheets:)

Our evening went quite well though which I was suprised. I figured since she slept so much yesterday that she would be awake through the night but she was tired and slept. There was quite a bit of noise on the floor last night with the nurses but we did fine and got some sleep.

Please remember to pray for the links in the above area. Of course, remember Noah Jay who is fighting so hard for his life. He is very inspiring for his young age. Remember to pray for Abby as her family faces fighting all of this again with her now needing another transplant.

During this "journey" with Katia we have met so many wonderful people and we have also seen many children earn their angel wings. Last night as I was falling asleep, I was looking over at Katia. I swear there is a glow around her some nights like angels are watching over her every breath. I just prayed to God how thankful I was that he sent me this angel to have in my care. I also told God that this earth needs more angels present and to please know that Katia is so needed right here on earth to share her beautiful life and story with so many people. I believe she is on a mission to save lives. Katia is such a strong little baby and as I have said before, she has so much wisdom at such a young age.

She prays to God and I just know her heart is so pure and golden. She says she can go home when she gets her new blood and the Luekemia goes away. When she takes medicine she doesn't like she says, "I have to to get better, right?" and I just tell her, "Yes, you have to."

After all the throwing up she has done this morning, right now she is dancing to Barney. She is just bopping her little bald head to the beat like she has no worries. I believe she gets her strength straight from God! He has been so good to Katia and has brought her through so many hard times and continues to give our family the strength we need to fight. That strength comes to us in many forms and one of those forms is YOU.

Thank you so much for keeping Katia and our family so close to your hearts and in your daily prayers. It is working. God bless you and yours. Love, Tracy







November 17, 2003 5:49 PM

Well today has been fine. Katia was her normal self for the most of the day but she went to sleep around 3PM and is still asleep as I type. Tomorrow is the SCANS and MRIs. So we should know more about her eye, lungs, abdomen, butt, etc. She is going to be pictured from head to toe tomorrow.

Please pray for a little friend of ours. Her name is Abby and she has recently relapsed with AML and will now need her 2nd Bone Marrow Transplant. The family could really use your words of encouragment so please stop by their page.

Love, Tracy


November 17, 2003 10:22 AM

Good Monday Morning:) I know you don't hear that much!

Today has started off pretty slow. We got up a few times in the night cause Katia's booty was hurting her, she had some pain medicine, a dirty diaper and the rest of the night went okay.
Yesterday she didn't have her regular CBC blood panel done so today I get the counts and her WBC has gone from 6.54 to 10.3 and her hemoglobin has gone down. That has me a little concerned mainly because Katia just isn't active today at all, maybe later. Don't get me wrong, 10.3 is still in the "normal" range but I just don't like to see it bounce around like that. She isn't getting any medicines that should make it go up. We will see. Tomorrow she has her MRI and SCANS done.

Right now, she is just laying here watching a movie:) I am so grateful she likes to watch her DVDs and movies cause it does pass time and makes her laugh. Me personally, I am not that easily amused! I wish I was. I am more one to have to be working or doing something if I have spare time.

Well, my eyes are pretty blurry still and I keep making a lot of typos so I am going to cut this short and finish my coffee! Did you see the new thing part way down the page about "I am Woman, After my morning coffee!" Thank you to Kody's Mom for sending that my way. I saw that on her page and just loved it!!!

So on that note, let me finish my coffee:)

Love, Tracy





November 16, 2003 7:26 PM

Well Katia has gone to sleep so you can imagine how busy she was today! WOW! I look at her and I think, "She is sick?"

She had a great day today and she gave me a wonderful treasure I have tried to get from her for over a year or more! Her handprints. She dipped her hands in paint and WALAHH, I have her handprints (2 sets) today! That made my day!

Katia played today quite a bit up and down the halls, back in the nurses station, in the playroom, blowing bubbles, painting, "learning to share", and watching movies. Now she is asleep and I am sure she is having good dreams. I always whisper in ear when she is asleep, "Mommy loves you, I will see you in your dreams." Well the other morning she woke up and said she was playing with me in her dreams! Isn't that funny. If she says she is going to miss me, I tell her to meet me over in my dream and we will play:)

Katia IS back to having quite a bit of "Butt Pains" so we will have to do a CT SCAN there on Tuesday as well because she is known to have growths or lesions in her rectal area so I want to catch it before it gets too out of hand. When they get bad, she will cry 18 hours a day in pain and nothing will take that pain away. Right now her counts are good so hopefully we can get them cleared up before the next rounds of chemo and they will just get really bad really fast. Please pray for her little booty to feel better.

Well, I am going to try to catch another early night here or at least be leisure and not too busy. It is amazing how much work I find to do while stuck in the hospital. Myron and I stay very active with the different blood drives and trying to push awareness. It takes a lot out of us. But it is all for a very good cause and we will continue to do this for years to come. I am going to start working on building another website for the "Katia Solomon Fund, Inc." and then I will put a link here. Love, Tracy


****






November 16, 2003 11:18 AM
Well I have to do a quick update cause Katia wants to go walking. We had a very good night. I woke up feeling sick with my throat hurting but we did sleep with only 2 disturbances so I feel much more awake today:) Thank you, Ms. Katia!!
I will come back later in the day and update more and maybe change some pictures around but as I type, Katia is pulling me so I gotta run!!! Love, Tracy

PS Thank you everyone for answering my question below. If you haven't already, please do. I love to know how you learned about Katia and came into our lives. Love, Tracy






November 15, 2003 9:50 PM
Just a quick question came to my mind as I read over the guestbook. I think this all the time and forget to ask so I will just put it here for you to answer if you wish. How did you learn about Katia? I always wonder what has brought each of you to Katia's page and made you part of our family. Although what brought us together is something I wish we never had to go through, I am positive each of you make each day more possible to get through. God bless you and thank you for coming back each day:) Love, Tracy



November 15, 2003 8:00 PM
Today was a very nice day, better than I thought it would be since I was so so so tired. First we had a nice visit from Chadd and Kristi and we finally got to meet little Brendan! Brendan, Katia really had fun playing with you. You are just so so sweet! Hope you didn't eat all the candy on the way home.

Then we spent some time here with just Myron, the girls and me:) We played a little and caught up on stuff.

They headed back to Tampa and Katia and I were off to do our daily adventures. Katia has learned the complete layout of this hospital floor and she basically has a routine she follows but each day, I go to do my chore at the Ronald McDonald House and she is left here in the care of the nurses:) When I left, she was having some pretty bad bottom problems and her legs were hurting so she was on some pain medication. I figured it would work but was shocked when I came back and Katia was running around and eating a popsicle!!! She had already had half of another she ended up eating about 1/2 of the new one. Then I got her lunch. She had some carrot cake and some bites of carrots:) Hopefully she doesn't turn orange.

I think her appetite is definitely returning as long as she can stay active. She ordered some icecream and had one bite tonight and threw that up. She still gags a lot and it doesn't seem to matter what type of food it is, just timing I guess.

I am very pleased with Katia's overall health at this point though. She looks great and has a lot of energy. Her counts are remaining good. She is scheduled for her CT SCAN on Tuesday to check her lungs and also an MRI to check on her eye tumor. I am praying for all good results. She will also be due for another check of her marrow and spinal fluid to check her remission status but I really feel she is still in the clear there also:) She actually is growing some fuzz on her head already. It of course will fall out with the pre-transplant chemo rounds, they are stronger than anything she has ever had before plus the total body radiation on top of all that but the fuzz is cute while it is there:)

Well, if I have babbled, I am sorry. I planned a very short update but today was good and I wanted to share it with all of you who care so much for Katia:)

God bless each of you and your families. Love, Tracy



November 15, 2003 9:00 AM

Not too long of an update here, I am soooooooo tired but I am trying to not complain. Long night! Katia kept waking me up for water, new diapers, handing her this and that, etc. Then I heard her trying to put on another CD in her player so that is when I decided to just get up. So needless to say, me and coffee are best friends this morning and will be throughout the day! On Kody's page, his Mom has something that says, "I am a Woman-After my morning Coffee!" That is me! Especially in the hospital life. At home I do better with sleep just cause I usually sleep straight through the night with maybe just one or two interuptions, not here:)
Okay enough of that.
Happy Saturday! I do plan to have a good and fun filled day today. I think I will try to get her in to do more painting. I have been trying to get her to color pictures, but she is too on the go to stop and color so we are going to take our coloring supplies to the playroom:) That will be nice and maybe use some of their big paper!
Well, Myron and the kids are headed here right now and we have some company coming this morning so I just wanted to update before the day got carried away.
Oh, by the way, Katia's diet yesterday was about 3/4 bag of popcorn and a lot of water!
The picture at the top is the quilt Katia received. Every stitched quilt is from a different person. They opened up for volunteers to sign up for Katia's quilt and put a rush on it because they wanted her to have it for transplant. It is my understanding they not only received enough for Katia but enough for 2 other quilts with pillows:) Thank you volunteers!!! Also thank you for all the postcards you have been sending! All of you! I recognize some of the places but most are totally new to me. You know I think that would be a great project for kids in school is to collect postcards and then each child take 3 postcards and do a report on those places. They would learn a lot about our world!

Love, Tracy






November 14, 2003 10:00 PM
When I am done, I have new pictures:)
I may be updating too soon here but today was the Pentamindine Day, the antibiotic she only gets every 14 days. If you look back, last time and the time before she got very sick but tonight, smooth sailing:) She slept through it all! So now, I want them to wait until she is asleep. The thing is if they do that, she also gets that other one that can cause so many problems (one she gets every night for months to come). So, I have to wait to see if my idea will be good or not:) I think it will be.
Today was a nice day. We did our walking and running around, a lot of laughing and goofing, a little eating (part of a bag of popcorn and some water) but mainly we just had a good day. I love to hear her little laugh, it is like putting words to her smile:)

Isn't she just too cute! Maybe I see more than the average eye with her since she is mine but Katia is just KATIA and I just love her:)

Well, that is it. She is asleep and I am trying to organize some stuff around here. I can't believe that 2003 is almost done!

Oh, Tatiana had a fabulous time at NASA today! I am glad she was able to go with so many things going on. Had this week taken a different turn with Katia going through surgery, Tatiana's trip may have been put off again but it all worked out. Thank you, Lord for allowing her this opportunity and allowing our family this happiness.

God bless each and everyone of you and your families. Love, Tracy




November 14, 2003 8:48 AM
Well, I am actually just getting up not too long ago. We had a good night sleep! Katia always ask me for water in the night but I just get up and hand it to her and change her diaper:) I can fall back asleep okay after that so I am feeling quite refreshed today. She is still asleep:) She is waking up though little by little. That is my sweety!
We of course plan to play and eat junk food today! I want to take pictures today. I have given her a few days break from following her around with the camera(not like me) but I like capturing her days on camera!
Tatiana went on a field trip today to NASA!! She was really looking forward to it.
Sharayah had a very nice day yesterday and I am sure she will be a lovely 15 year old for the next 364 days!
My goal today is to get some new pictures up here. One in particular is of a quilt that Katia had made for her from LOVE QUILTS!! It is just gorgeous! It is now her bedspread and she is all "comfy-cozy" in it which is why she is not getting up:)
I tried to take pictures last night but she was asleep and it is so big I need her to help me with the picture!
These loving stitchers did an awesome and wonderful job putting together this quilt for Katia very quickly when she relapsed. Each square is cross stitched with ladybugs, dragonflies, flowers, butterflies, etc. So much love!
That is my goal today! Love, Tracy






November 13, 2003 9:26 PM
Well we had a very nice day. Katia is sitting here right now eating Crunchy Cheetos, she had a few bites of birthday cake, 1/2 a donut and some popcorn today! Do I hear, "JUNK FOOD QUEEN"!
Hey, it is eating and it is calories (don't I know those things are calories?)
Sharayah had a nice birthday and thank you to those of you who mailed her gifts. That is so very sweet of you. My girls are very touched by those who reach out to them. I know this is hard on our whole family and I appreciate their support in this.
I was pondering today when the next time would be that we could have a cookout on our backporch or when Katia will be back out on her swingset. We moved into the house January 22nd and had 7 glorious, remission filled months which we treasured each day and I am determined to get back there HEALED!
I want my whole family together and in our home:)
One step at a time though, I know that and God has just been so very good to our family by presenting us with fabulous miracles along the way.
Myron and I wonder how Katia is just so fantastic sometimes, I mean she is rarely any trouble at all and when she is she makes it laughable or just downright witty.
I truly believe she is one of God's dearest angels but I plan to keep her right here on earth with us for a very long time.
I have a lot of my "Mother/Daughter Lectures" that I haven't bored her with and there is so many things she hasn't done yet. I want her to do everything!
I want her to learn to express herself clearly, draw pictures (recognizable ones), lose a tooth, read a book, go to school, make friends, take those weird looking school pictures, get worried over parent-teacher conferences, be in school plays and award ceremonies, celebrate many birthdays, graduate from highschool, get a boyfriend (in this order), get married, have little bitty Katia's, drink coffee with me, drive a car (safely), and just grow old and grey!!! I want to buy her Centrum Silver one day and we are still back on the Barney Movies. We have a long way to go and a lot of plans.
Please God, allow Katia to live her whole, long life and make a huge difference (bigger than she already has).
I am such a lucky Mom! I have 3 wonderful daughters, an awesome husband (that is no exageration) and good plans for our future. I also am the one that gets to spend my days with Katia and hug her, kiss her, squeeze her, hear her laugh and talk, chase her through the halls, see her get so excited over the little (very little) things in life, and I have a ton of wonderful, fantastic, super-dee-duper (as Barney would say-we watch him alot) FRIENDS! Yes, YOU. I am so grateful each day for each of you.
I am not very good with remembering names and such but I have heard from so many of you so much that I am getting really good with knowing your names, about your families, what part of the world you live in, etc. I am sure it isn't because I am getting more keen but just the fact you check on us and sign our guestbook so often, you have not only found a place in my heart but are engraved in my brain:)
Thank you so very much. You are so important in this fight for Katia's life. Please always know just how important you are!
Love, Tracy

PS Thank you to those who have ordered CDs. I wish I could just give them to everyone the whole world over but I can't. I am so glad you get to hear Katia's song and the Thank You song. That is meant for people who in some way make this whole struggle easier to face and that is YOU. I hope you will let everyone around you listen to the song and share Katia's story.

On a further note...
We are trying to get the song to be heard all over the world. We also want everyone to get the message out about Marrow Donation and just how easy but how important it is. If everyone that knew about this told 5 people and told them to tell 5 more people, can you imagine? The National Marrow Donor program has 5 million registered donors. I want that to get to 10 million by the end of the year. That isn't impossible seeing how many people came forward just in the Tampa Bay area for Katia. Around 3,000 or so. There were drives done in other states as well that I am not counting. But I just know that it is possible to swell the registry so huge and help so many people waiting. There are a lot, I mean a lot of kids waiting and our goal is to take the wait away. Take the worry away for those families and help raise funds to help set off the cost of registration when there is a cost.
We have started a Non-Profit organization "The Katia Solomon Fund" and that is our purpose. The selling of the CDs gives a dollar from each CD to the National Marrow Program, that is 20f the cost going to help something we have a firm belief we can help. We have learned a lot from our struggles and we are still trying to locate a 6/6 match for Katia. We have the time to continue since she is having to leap over these other hurdles so we continue. The closer the better and that match is somewhere out there. Someone is Katia's hero!

I am going to share a paper Tatiana wrote in the next few days. It is beautiful. It is her words of what happened with Katia, how it has affected and changed our family and mostly what she feels about all of this.

Through this site, I not only want you to learn about Katia, but how to make a difference in saving lives, spreading the word, and how even just your interest in helping a family cope REALLY MAKES A DIFFERENCE!!! There are so many ways to help and for that, I say THANK YOU!

God bless, Love, Tracy


November 13, 2003 Morning
Wow, I just realized I never updated again yesterday. I was just a big smile and our day went very well. Katia did go to sleep very early, she was just totally worn down from the days events. I actually went to bed decently early too, early enough that I woke up in the middle of the night thinking it was morning and couldn't fall back asleep. My body is used to the schedule I have been on.
Today is Sharayah's birthday - HAPPY HAPPY 15TH BIRTHDAY SHARAYAH!!!

I plan to go to Tampa for a bit to pick up a present we have for her from her Grandparents and picking her up something from us. Hopefully the evening will work out with cake and such:) I want today to be a good day for Sharayah. These kids have been through a lot and do really good with our hectic lives and the roller coaster we live on.

Well, I am typing before coffee, just because I realized I didn't update last night. I haven't even checked email or the guestbook yet:)

Katia is sneezing over and over and her nose is runny so she isn't too happy this morning. She can have benedryl but then that makes her sleepy but maybe sleep will be good for her today so her little body can get rid of the cold. We really don't need her getting sick on us right now.

I am still in such a great mood from yesterday's news!

Love, Tracy






November 12, 2003 10:12 AM

NO SURGERY TODAY!!! SCANS LOOK A LOT BETTER (THE SCANS ARE SHOWING THE CAVITY IN THE LUNG HAS SIGNIFICANTLY SHRUNK!!!-THIS COULD ONLY BE DUE TO SO MANY PRAYERS-A TRUE MIRACLE!) SO WE HAVE 5 MORE DAYS AND MORE SCANS. I WILL UPDATE MORE LATER. THANK YOU FOR YOUR PRAYERS AND THANK YOU, JESUS!!!! IT WAS CALLED OFF 15 MINUTES PRIOR TO SCHEDULED TIME! LOVE, TRACY



November 12, 2003 9:22 AM
Okay the suspense is really alot to handle. We have no news yet and are waiting but I should hear in the next 30 minutes. BUT if she needs surgery, she will be going in at 10:30 this morning and not at noon. So I don't know IF I will be able to update. I am praying I will have all morning free and not have to be taking her to surgery. Katia knows something is up because so many people have been in and out of here. Her eyes are wide open looking around like, "Something is up." So, I guess if I don't update by 11:00 AM then we are in surgery. That is the best I can do. Please please pray that I update! Love, Tracy






November 11, 2003 9:42 PM
We haven't gone to the CT SCAN yet but I felt the need to update. The scan will be around 10:15 tonight but we won't know the results until after 9AM and surgery is already scheduled for noon. She is being prepped for surgery. She is going to get blood, platelets, GCSF (to boost the WBC count some), and she can't have anything to eat or drink after midnight. Right now she is having to drink 15 ounces of contrast (it is mixed in fruit punch - she is not a fan of juice). I am praying all of this is done for no reason but it IS being done just in case. Katia had a great day today. The pictures are of her painting today, well she was actually filling up that syringe and squirting it on paper. It turned out quite nice and Myron is going to have it framed and hang it in the house! She had a ton of fun as well as I did and the Child Life Specialist, Stephanie. Katia was squirting everything in site and almost squirted this patient sitting there a few times. We finally had to shield him:)

I want to thank God for something right now. God has given me such an incredible feeling of strength and assurance throughout Katia's many treatments and he is giving me more and more each day. I really feel that someday Katia will be in front of her highschool graduation and tell everyone just how far she has been in life and how much the graduates should face each new day of their new life with zest!! Katia has such a huge inner-strength. Like I said, she hates to drink this contrast stuff for CT SCANS but she does and she says, "This is good." She smiles and jokes through it even though she hates it. Sometimes she will spit it up but she will continue to drink it and say, "This is going to make me better." She wants so bad for the Leukemia to go away and let her go home. She says, "I can't go home until Leukemia is gone." She understands, "I have to be in the hospital while I am sick." She is so so smart and full of life and love.
That is why we do all we can, day in and day out, to keep Katia smiling and happy cause she so much does deserve to be happy. She is fighting everyday so hard for life and happiness and she is our absolute hero!!!!!

Love, Tracy

November 11, 2003 4:51PM
Another change of plans...
We are going for the scan tonight and if needed, surgery tomorrow around noon. I will update after the scans tonight to let you know. Please please pray. Love, Tracy


November 11, 2003 11:17 AM

Happy Veterans Day!!!
Katia is out and about so of course it is hard for me to slow down enough to come update:) But that is a good reason to be late updating.

Things are about the same here. We had a very good night and we are off to a good start today. We are scheduled to have the CT SCAN first thing in the morning tomorrow. Everyone here is anxious to see the results and hoping for the best!

Thank you to those who have ordered Katia's CD and I am hoping you are enjoying listening to the CD. I think it turned out just wonderful!!! You can guess what I will be using for Christmas gifts this year. I won't have anytime to shop because hopefully we will be in transplant during that time. What a way to spend the holiday but Katia will hopefully be getting her second chance at life around that time if all goes well.

Well, I need to go. Katia is in the playroom with a volunteer but it is a new volunteer so I keep walking by and checking on her. I love Katia's show of independence and playing with other people. That is great!!

I want to run over to the Ronald McDonald House and do our laundry and vacume my hallway. I am trying to keep that room as long as possible. It ends up being $300 a month but it is so well worth it just to be able to go over there and do laundry, shower and eat a homecooked meal once in a while. The sale of CDs are helping to fund things like that and 20s going to the National Marrow Fund to help continue having marrow drives for Katia and other families. We hope to keep that fund going for many years to come. That has become our mission through this whole fight of ours. We saw a need and we plan to continue to help! Thanks to all of you:)

Love, Tracy and Katia!



*****




November 10, 2003 10:41 PM
Well, Katia is sleeping soundly. She had an absolutely wonderful day - I think the nurses did too!
First, I want to correct something that seems to be getting misunderstood. We are not hoping Katia's LUNG is collapsed, we are hoping the CAVITY (the part that does not belong inside there) has collapsed which will show it is going away. What is the CAVITY? We aren't sure. It won't be sure until it can be removed and biopsied. BUT if it shows to be collapsed, the will try to see if the medicine will continue to work over the next 2 - 3 weeks. If it doesn't work in that time, then surgery, then recovery after the surgery, etc.
I am sorry if sometimes I skip through things. I just have it in my head all day, as clear as I can and I just spill out my words sometimes, not explaining things clearly.
Katia did have a really really fun day!!! I am so glad when I can see her laughing and BOY was she laughing a lot today!!! That tickles my heart!
I just found out a little boys I used to keep up with more before Katia relapsed, has earned his angel wings. His name is Manny . He had been diagnosed with Adrenoleukodystrophy which will usually put someone in a completely vegetative state. He lost his hearing and site and his family always just wanted him to know they were there and they loved him. Well now he is another sweet angel in heaven.
I was thinking it seems like more and more people go to heaven than ever before but I am sure it has always been that way, I just wasn't informed. I am blessed to get to know each person I meet. I learn from everyone's story, everyone's compassion and love and fight for life. I think that has made me grow in so many ways.
Thank YOU for taking the time to get to know our family and of course, KATIA!

Love, Tracy




November 10, 2003 4:55 PM
Good news! We are postponing surgery. Instead, on Wednesday we will have another scan done to see how the lung looks. There is a chance the cavity inside the lobe could callapse which would mean Katia could stay on medication a few more weeks and then go on with transplant. So PRAY the cavity there inside the lobe has collapsed. If not, then surgery will be beginning of next week. This is just another small effort to see if her body can take care of this along with the medicine. I wanted to get right on here and share those news so that you can pray very precisely:)

I went to Tampa for a bit today and cleaned carpets:) Very theraputic. Also Tatiana is sick with a cold. So I have been more of my "normal" mommy self today with cleaning and taking care of the other girls. Katia was all over the place laughing and playing with the nurses. These nurses up here are like angels!!!! I really appreciate all they do!!! Love, Tracy



November 10, 2003 9:15 AM
Good morning. I am getting a little nervous about Wednesday as it gets closer so I ask you to please pray for peace of mind and the guidance of the doctors as this day gets closer. Thank you.
Also, I have been checking on Noah Jay throughout the night and there is no new updates but there is a very nice picture there of Noah. I know this time has to be so difficult for this family. Noah was sent home and taken off of treatment and given a day to a few days to live. His parents are just praying and believing for a miracle. Please go by the page and sign their guestbook and please pray for Noah and his parents. He was diagnosed less than a year ago.

On a better note, Christina is supposed to be going home late this afternoon. HOME HOME! She had transplant on September 2nd. She is an 11 year old with AML or should I say now, without AML. Christina, we are praying for you that you will enjoy home, start eating and not vomiting so much:) I am so happy you get to go to your HOME cause I know you have to be totally stir crazy along with your mom, dad and Ashley.

Today doesn't hold a whole lot as far as tests or anything but I know there are a few doctors still who have to give their opinion but surgery is set for Wednesday morning. I am sure I will find out more today about how long the surgery will take and hopefully more about the recovery process and time.

You can tell I am nervous, cause I am babbling:) Sorry.

Well, that is all for now. Katia is wanting me to find her a "Tiger" balloon from Pooh. She is really into the Pooh cartoons, Nemo, and of course as always her ladybugs. I can only find "Happy Birthday" ladybug balloons usually or "Get Well" ladybug balloons. I try to just get her cartoon balloons with no "sentiments" on them.

I want to take the time here, once again but never too much, to say thank you for all of you who keep up with Katia! You are so much a part of her good attitude. Your prayers, well wishes, packages, postcards and cards are just so very important. I really believe the positive energy and prayers help Katia stay ahead of the "game". We are FIRM believers in keeping a happy and healthy environment for Katia and ourselves for that matter.

We try to only dwell on the here and now and the hope for better days to come. I just can't wait for the milestones in Katia's life and for all of us as a family to watch Sharayah and Tatiana go through theirs. Sharayah turns 15 on Thursday!!! I can't believe it! I remember the day she came into the world like it was yesterday. I was so happy to have a little girl and I have been so blessed with Sharayah throughout the years. She is a great daughter and a great big sister to her two younger sisters. Sharayah just got her report card (first highschool report card) and she has a 4.04 average!! I am so pleased with her abilities and her desire to move ahead and go far in life. So hopefully we will be able to celebrate her birthday on Thursday (last year we celebrated it over 2 weeks late cause she wanted Katia to feel good to eat the cake). My kids are all wonderful and I want them to all grow up and meet for lunch dates and call eachother on the phone. I want them to always be there for eachother through the good and bad times. I just want to hear them saying, "You remember when you were in the hospital Katia, that was so long ago and you are doing so great now!"
I want to have to call Katia down for wearing too much eyeshadow, or talking in class! I get upset when a teacher calls me about one of my kids talking in class but at the same time, I appreciate the fact they are living life in such a "normal" way.

Please take the time to look around you at all of the "normal, humdrum things" in your life and thank God for them. Hug your little ones when they leave handprints on the glass doors (Sharayah and I both miss cleaning up Katia's finger prints off the sliding glass doors) and hug them when they keep calling your name 100 times and then some!!! I know it can be annoying but someday you will be waiting for them to call you on the phone and they will be too busy with their own lives to do that. Tell your kids you love them even if they give you a funny look like you are crazy. Bake a batch of cookies together and eat the WHOLE batch (don't worry about the calories or the overdose of sugar).
Really look closely at their cute little expressions when they are deep in thought or sleeping. Even teenagers are cute when they are asleep:)

Just enjoy life even when it doesn't seem enjoyable.


Well, I gotta go make me another cup of coffee so I am pepped up for the day:) Thank you for dropping by. Love, Tracy








November 9, 2003 7:45 PM
We had a very nice evening as a family. We had a 2 hour pass again to RMH and went over there, had pizza (not Katia-she had 5 bites of bread though), we played in the playroom, and just had a nice time. Then we came back and watched some Sesame Street and sang along with the songs. People out in the hallway probably wonder how we are so noisy and happy in here. They probably think we are on drugs or something but we enjoy eachother and our time together and although this is not a good situation, we know it could be worse and no matter what this is OUR situation right now so we are going to make the most of it:)
Katia doesn't really seem to mind as long as we have fun.
I am going to add some new pics but they are from yesterday's festivities out on the rooftop playground where she saw her shadow yesterday. Love, Tracy




November 9,2003 1:55 PM
We are okay here, I know I am late to update. I spent the night at RMH and Myron stayed with Katia:) Very nice!
I came back and we have been playing around the hospital and in the playroom. I will be back later to update more but so far no different news. The surgery is still set for Wednesday morning. The more info I find out, I will post.
Thank you so much for those of you who have so faithfully checked in! It means the world to me:) Love, Tracy

Please, please pray for Noah Jay. He is not doing at all well and his family is just praying for a miracle. He is now off of all treatments and home. Please sign the guestbook to let them know you are there for their little boy.

Noah Jay






November 8, 2003 6:30 PM
"A picture is worth a thousand words!"


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November 8, 2003 10:30 AM
Tonight is our Light the Night event with the Leukemia and Lymphoma Society. We were supposed to walk but we will not be able to make it. Katia has a team, "Katia's Lifebugs" (Ladybug as the symbol) but our group is there in heart. Myron's CDs will be getting sold out there and the song played though:) Thank you Leukemia and Lymphoma Society for keeping Katia there in heart:)
Our night went reasonably well. We got out and walked for about 30 minutes so that was nice and Katia was quite happy throughout the whole walk. We had to keep sitting down (which was okay with me) and then we came back to the room cause her throat was hurting (which means she is about to throwup). So we watched a little TV and then went to sleep.
Today, Myron is out at Tyrone Square Mall with 94.9 FM at the Family Matters Festival selling some CDs. It is an opening of the season and Santa will be out there to take pictures. There are a lot of Festivities planned:) If you live in the St. Pete area or nearby, this would be a great event to take your kids to!!
Hopefully our morning will go very well and Katia will stay happy. I am planning to get her walking for a bit when she gets unplugged so that keeps us pretty occupied, in a good way. Love, Tracy






November 7, 2003 8:30 PM
Katia has perked up, opened her mail and is now watching her Sesame Street Sing-a-Long! It actually has a ladybug song which we have rewound about 40 times!!! This baby amazes me:) God bless. Love, Tracy


November 7, 2003 5:30 PM
Well our evening is rapidly getting worse. Katia has had 5 dirty diapers in the last hour or so and is in quite a bit of pain so she will be back on a pain pump here soon. Please pray she gets comfortable. Poor little thing just wants to feel "not bad".
Love, Tracy



November 7, 2003 4:30 PM
Things change so quickly. Now we are scheduled to undergo major lung surgery here on Wednesday morning. They still have a few more people they are collecting opinions from but the opinions seem to be agreeing to this surgery here. Katia has been pretty sick all day. Her bottom hurts, her head hurts, she is coughing and throwing up and the most recent was she started throwing up blood, red blood. So they have taken more blood labs to send off and they took stool specimens which most likely will make her stay in her room until they come back negative again. She started feeling pretty lousy last night and it has just slowly gotten worse. She doesn't even want to sit up in bed at all today. Her sisters are going to be at the Ronald McDonald house over the weekend, daddy too. So hopefully that will perk her up and make her happier. She has stopped even drinking her water. I think the blood is from her throat from throwing up today but they want to check the levels. I am so nervous about Wednesday and worse nervous because we have no concrete plans. I will be glad to be able to stay right here at All Childrens to get everything done so long as everyone agrees that is best. They have really brought in a lot of different doctors from around and it seems they agree. Katia deserves the very best. The biggest problem with this surgery is how hard it is on her body and the fact she won't be able to have full body radiation before transplant now. They are trying to figure out how to at least do the spinal column and brain radiation before transplant since that is where she relapsed. So...
More waiting and not a lot of options left.
Right now, she is just curled up asleep on her bed holding her yellow blankie but at least she is coughing or spitting up and her bottom isn't hurting her.
Katia is the center of our world right now and we just want her healthy and happy. We will do everything in our power to keep her happy and smiling throughout each day.
Love, Tracy



November 7, 2003 10:30 AM
Well we are waiting to go to MRI. It keeps getting delayed but that is okay. NPO (No food or drink) is not a problem with Katia these days. Normally by now she would be throwing things off her bed and screaming when they wouldn't let her eat.
She is just laying here. I feel so bad cause she feels really rotten mainly from the cough and cold. No news from the CT SCAN yet. I haven't seen any doctors up here yet today. I know they had a "Katia meeting" yesterday to compare notes.
Thank you so much for those of you who are trying to find the info on Epidermolysis Bullosa for that little 18 day old baby. I am going to go visit her while Katia is in MRI.
I will print the links up that have been sent to me when I go back over to the RMH. You guys are so so great!!
Well, I just wanted to update since the morning is moving right along. I was trying to wait till after MRI.
Katia doesn't like MRI, she likes the CT SCAN. MRI has to sedate her and she hates losing control, hates it!!! (I don't know where she gets that from).
Thank you for checking up on her. Wasn't last night the greatest!!
Love, Tracy






November 6, 2003 9:14 PM
WE WENT TO THE RONALD MCDONALD HOUSE ~~WITH KATIA~~ FOR DINNER!!!! YES, MYRON AND I GOT TO TAKE KATIA OUT FOR A 2 HOUR PASS!!! IT WAS WONDERFUL. THERE WERE SOME FRIENDS OF OURS THAT WE HAD MET HERE AT THE HOSPITAL WHEN THEIR SON WAS BATTLING LEUKEMIA AML AND THEY HAD VOLUNTEERED TO COOK DINNER TONIGHT SO WE WENT AND SPENT THE EVENING OVER THERE!!! WHAT A GREAT GREAT ESCAPE.
Katia didn't eat but a few very small bites of bread but she did try to play in the playroom and she saw different people so she had fun. She told us thank you for bringing her there. She started coughing and gagging and asked to come back here. She said she can't be in the Ronald McDonald House while she is sick. She has to be in the hospital and she can go home when the leukemia goes away with her new blood. This is our 3 year old's understanding of Leukemia and it is pretty darn close! Poor little baby. She is back here and laying in bed. Her throat is pretty sore but she will have a happy dream tonight I am sure! Myron brought her a balloon with a dog on the front and giving a thumbs up! It says "Glad You're Feeling Better". She has had a good few days and we praise God for this. I know she has some very very rough days ahead (which I haven't heard anymore about) so we want her to rebuild her strength both physically and emotionally. IF we go to New York for the surgery, I will still use the hospital address here (listed below) and All Children's will forward her mail to us. I have asked and they assume we would be gone about 3 weeks or so if all goes well. BUT I do not know too much right now and I assure you I will update as soon as I do.
We have an MRI in the morning to see how her eye is doing. Hopefully the radiation is still shrinking the tumor. I think that is doing fine. Right now the big concern is her lungs and it is a HUGE concern.
Her doctor came in today and told me that this surgery is very serious and that is why they want to do the least evasive thing they can. If they have to remove a whole lobe it will totally change transplant. The full body radiation would have to be avoided and more chemo used due to the damage to the healing lung. Therefore, we would not be assured that all the Leukemia is gone for transplant and she could easily relapse.
The other thing is she would have a very hard respiratory problem from the time of the lung surgery, through transplant and a long time after because it would be critical damage to her lungs seeing all the stuff that must also go on with transplant. They are trying to give Katia the best quality of lifeasl not make it worse so that is why they are looking into every single option and trying to find a surgeon that can go in and accomplish the surgery with as little damage as possible.
Again, I still don't know what the CT SCAN today showed but I know they have sent them off to be viewed by the surgeons in New York.
Okay onto another subject and then I will come back to Katia.
We met this Mom tonight at the Ronald McDonald House. She has 2 older sons and now a 17 day old baby. The two older sons are 4 and 2 years old. They are fine. The baby however was born in very bad condition with a rare disorder that causes a lot of blisters to form on the skin and a lot of skin deteriation, bad. The name of the disease is Epidermolysis Bullosa. If you or anyone you know is familiar with this I would appreciate you emailing me the information or links to any Caringbridge Sites. She needs to connect with some people that have faced this. There are a few types of this disease and they do not yet know which type she has but it is so bad. She can get hurt and get a blister by a simple touch or bump. She can get them by walking on her feet or sitting on her bottom, laying on her side, etc. We saw pictures. The baby is beautiful but her arms and legs are just so torn up. This mom is so strong and dealing with this and trying to get all the information she can. She has yet to explain it to her other children. This is genetic and both her and her husband are carriers which of course they did not know. Now they have the information they need and their two boys were tested. One is a carrier. This only causes problems if both parents are carriers. It is so rare that two carriers would get together but they did and this beautiful little girl was born.
I really want the Mom to connect with other people and have a support system like I have found here with Caringbridge. We have other patients with Leukemia on our floor but there are so few cases of Epidermolysis Bullosa that there is one maybe every 5 years at this hospital.
Well, please email me if you know any links of people dealing with Epidermolysis Bullosa. Thanks:)

Okay, Katia is happily watching TV right now and I am praying this is a good night. The cough is what disturbs her sleep and causes her to start gagging but then it subsides and she goes back to sleep. She is SICK of coughing and gagging. BUT we had a great day!!!

Love, Tracy



November 6, 2003 12:17 PM
Just a quick update with good news! KATIA IS STILL IN COMPLETE REMISSION IN HER MARROW AND SPINAL:) YIPEE!!!!

Okay, onto the other news. The doctors here are going to look at the scans today (which we just came back from) and send them to another hospital in New York to see if they could possibly accomplish clearing the lungs without removing so much. They are saying if Katia has to go through the surgery of removing so much of even one of her lungs that the pre-transplant radiation and the transplant itself would just be extremely critical and make things much worse for her for the rest of her life. They are hoping the doctors in New York will have an easier way of working through this problem and if so we would be on our way there for the lung surgery. We won't know until early next week cause the scans will have to be Fed Exed up there which takes a couple of days. So... our prayer is they have a better way of going about it even though that means going on a trip to a new place and probably spending a few weeks there. I am not sure. There are a lot of questions on that. BUT for now she is in remission and they are looking at a lot more options concerning the lungs. Please pray that something less evasive can be done and can be done very soon so we can move forward with transplant. Already transplant is looking more and more risky than it would normally already be. We are going to try to get Katia's grandparents to come in and see Katia and spend time with her before all of this happens. We are trying to work that out. My dad and Myron's parents all live in Honduras and really don't get to spend much time with Katia so pray this will work out. With love, Tracy






November 5, 2003 9:30 PM
As I type this, Ms. Katia is fast asleep. She has been asleep for about 2 hours. Poor little baby played and played today after she came back from her tests. I LOVE TO SEE HER PLAY!!! We painted pictures and we gave one to our nurse today, Sarah and the other to Christina, another patient in here:) Katia was quite happy with her artwork. Myron and the girls came and brought dinner and for the first time in 71 days we ate as a family at the table in the conference room!!! It really felt nice. One difference from home, Katia didn't eat a thing!! At home, she eats hers and ask for more and more and more so you see, this is all hard for us to comprehend. She is a child that literally used to eat from the beginning to the end of the day, now nothing! She will take a bite or two of a cracker or chip here and there. For a few days she would eat parts of bread with butter but it all adds up to nothing since September 5th. She really needs to start eating again just to keep her tummy healthy. I am afraid her stomach won't know how to digest food when she does finally try to really eat. I would love to see her eat some oatmeal or half a pancake with syrup or a bite of a juice hamburger, just SOMETHING.
Our friend Christina may be going HOME on Monday. I know they are nervous to go all the way home but I know they have to be so excited too, especially Christina. HOME has to be the best medicine both emotionally and physically. Christina has really gone through her transplant and fought all the barriers she has faced with such grace. I am so proud of her!
Well I am going to close this out, no results from any tests today which bugs me but that also probably means they are okay. The times things have been wrong, usually I hear back pretty quickly so I am praying no news is good news and Katia is still in remission. I pray she is staying eligible for transplant. We have a CT SCAN tomorrow to look at her lungs and make the final decision as to what will be done. I do know whatever is decided (choices are surgery on one or surgery on both to remove lobes) will be done very soon as they don't want to let any more time go by.
That is why I am trying to let Katia have as much fun as she can possibly handle right now without risking her getting sick.
Her cold is about the same and she is still coughing and throwing up mucus alot. Today she started choking pretty bad and got me nervous (which is hard to do) but she cleared it out and went to play some more. I don't think she realizes how stressful I get sometimes. She just pulls me to go play. I really worry about her but I guess she figures I am worrying enough for the both of us.
Later in life, I am sure we will have a bond that will just be a silent, loving and very strong bond for all we have been through hour after hour together. I know every expression Katia has. I understand every word she says. I know what all her looks mean. I know what she usually feels without her saying a word. I think sometimes she just does things and knows that I am watching her even though she tries to show independence. She always wants me to tag along right next to her just in case...
Love, Tracy



November 5, 2003 11:15 AM
We just came back from the ICU for the bone marrow aspirate and chemo. All that went well. We were down there a little extra time cause there was a code blue and that took some of the nurses away so it took a while to get signed out but that is OKAY! I never complain over having to wait around anymore. As long as Katia is okay, I am fine with whatever we have to go through. We should find out later today if she is still in complete remissiona and this time she has some White Blood Cells so the "remission" will mean more.
Other than that, not much is going on. I am about to go get Katia a balloon cause she was asking for that when she was feeling all loopy from the drugs so I said I would get one for her:) She loves balloons. I like this age for that reason, easy to please and quick to forgive.
Thank you for checking her.
For those of you asking, I have put a photo of my new hairdo (I am about to place it) in the photo album, photo 2. I had a lot of fun and relaxation getting my hair done:)
Love, Tracy



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November 4, 2003 8:00 PM
I got my hair done!!! I love it so much! Thank you to the people at Mystic Hair. That was so nice to get out and do. Katia has a cold and it is driving her nuts so I was pretty restless to get back here. She had fun with daddy though and did just fine.
We got out for a bit this evening and walked out to the bridge and to the playroom again. She was pretty tired and kept laying down in the playroom but she wanted to stay and play so we did.
Ashley, Christina's sister, kept us company and played with Katia so that was so nice of her. Katia really likes her. She is a funny girl!!
Tomorrow is the biopsy, lumbar puncture and spinal chemo. I don't know what time but I assume it will be earlier than later.
The picture at the top of the page was Katia's first trip down the hall yesterday and she had forgotten her way since it had been so long.
She knows her way very well now!
Well, I am just exausted. We fell asleep around 3AM last night and I was up around 6:30 AM. So I just want to relax and try to fall asleep. Katia is all stuffed up right now but she is due some benedryl so that should help her and make her tired.
God bless each of you. Love, Tracy



November 4, 2003 8:00 AM
If you didn't read last night's update, you must:)
Okay, onto today. Well after all the fun we had yesterday, Katia has a bad cold...
I am not sure how much freedom she will be granted today or will even want but we will see. I am still so happy that she escaped yesterday and had so much fun. It was like she had to wash boredom from her system!!!
I am about to leave for my hair appointment. It will be at 9:30. I didn't tell you this but last Monday, there was a big Marrow and Blood Drive at this hair salon and a fundraiser. They aren't usually opened on Monday but they opened last Monday and did all of this Drive and fundraiser. The place is Mystic Hair on N. Dale Mabry in Tampa. Thank you so much to the fine people at Mystic Hair!!!! Make me pretty:)

Please pray that Katia's day goes very well with Myron. Tomorrow she is scheduled to go to ICU for her Bone Marrow Aspiration, Lumbar Puncture and Spinal Chemo. Pray that her marrow and spinal fluid are still found to be in complete remission!

Little Katia, please have a good day with daddy and mommy is so very happy you had your freedome yesterday and I pray you can have more today. I love you sweety! Love, Mommy






November 3, 2003 10:15 PM


Did you see the picture at the top? YES, KATIA LEFT HER ROOM TODAY!!!!!!
My day was made fantastic when she was able to walk through that door and go venture in the hall! Forget venture, she ran down the hall, out to the bridge, back down the hall, into the playroom, back out to the bridge (where we found daddy looking for us!). We just played and played. Katia got tired pretty soon but then she just wanted to keep on playing. Mind you, I took over 100 pictures today, about 75 of them were priceless so I may change out pictures a few times!! We were so very happy to have her out of her room. I have no other news (which is good because I want to keep all of this positive). We just had a very fun afternoon. Tomorrow, Myron is going to spend the day with her and I am going to get my hair done:)
It is sprouting out grey everywhere!!

All I can say, is Katia was so so so so happy and you couldn't slap the smile off of our faces!!! What a great day and what a treat!!

I hope this can continue at least over the next few days before we have to face any surgeries. Katia loves to play and run and we love to see her play and run.

That was 60 days in isolation, what a great and refreshing time for Ms. Katia. Thank you for all of your prayers and for coming by to check on us:) God bless each of you and your families. Love, Tracy




November 3, 2003 10:30 AM
I am not sure if or what will be going on today but I just wanted to come update. The night went well. Katia is just so worn down by this annoying cough she has and I really feel if it weren't for that cough and the gagging, throwing up and sore throat that goes along with it, I think she would be eating. It hurts her right now to swallow. The good thing is because of her age and her mind set, she can forget about it at times and smile and have fun but then as quick as she gets happy, she gets very down again and tells me, "I am just not happy". I hate to hear those words. I hate to think she is not happy. She is just tired of the coughing and gagging and her throat hurting. Other than that she handles even being here around the clock okay. The only time she is really comfortable is when she is laying down watching TV or sleeping. She does like to get up and play and she has fun but it is usually brought to a quick halt because she gags and it hurts her throat and she just wants to lay down.
Okay enough of that. I appreciate those of you who are really following this journal daily (even a few times a day). I know you have really grown to love and care for Katia. How do I know that? Because I have really grown to love and care for quite a few of the kids I was checking on each day, a few times a day. I miss doing that. It is as though I had a job at the "Caringbridge Daycare" and I have since left. Please know each of your families are in my prayers and most are in our "Ladybug Prayer Book". If you have a new wallet size photo of your child, you would like to send so I can update my pictures, that would be great. I show a lot of people that book and tell them as much as I can about each child.
I want to thank Caringbridge for this wonderful opportunity to be able to come together on these pages and share our stories. The pages are a nice way to post updates and pictures and put a piece of our personalities out there. I really love the new ability to add our own background!!! Wonderful idea.
I got an email about the journals being hard to read on the background so I will stick with darker colors and bold them. I was trying to change colors each day but I may stop doing that so that it is easier to read. Well, that is about it for now:) Please pray for my family as this is really hard for us to still be seperated with no breaks in between. This is day #69 now and the days just keep going up and up. My family really misses me and Katia at home and we really miss being home. My HOUSE misses me being home. I went there yesterday and I am forgetting where things are and things feel weird there. Like, I went to throw something away in the kitchen trashcan and it felt like it was lower than usual? I am so used to just going to reach for something and it is where I always have it but now I forget where to reach. I really really miss being home!!
I miss cooking and grocery shopping. I miss cleaning my house and organizing. I miss using my home computer and being able to print things up. I miss Katia following me around the house and asking me what I am doing all the time. I miss her hanging on my back while we look at all the Caringbridge Sites. I miss her begging for food all day and seeing her sit happy at the bar feeding her face:)
I miss taking care of my little beta fish, Thor (yes, you got your name in here Thor).
I miss getting in my car and doing small errands that don't take days to plan in advance or worrying what may go on when I am not with Katia.
I miss walking out and checking my mailbox (I like my mail too).
I miss having everything neatly put away.
Okay, so I miss a lot and I miss my family and my home. It wouldn't be so bad if I knew in a week, two weeks or two months from now, everything would be back to normal and we would just have this all to look back on. We don't have that luxury. When we were home for those 9 months, I didn't take any day for granted and I am glad I can say that. I enjoyed each day and every day I knew it was such a blessing. Each time we sat at the table to eat, I was thankful for that. Anytime we sat as a family to watch a movie, I was thankful for that. Seeing my kids come home from school, I was thankful for that. I am glad I have learned to appreciate the little things in life because believe me when I say, those are the things that really really matter.
Love, Tracy







November 2, 2003 9:40 PM
Okay, I waited to talk to the doctor this evening so I could update with some information but what we have is more waiting. Right now, I am nervous. There is a group of doctors here and a group of surgeons. This lung surgery is being taken before the whole group because of the questions and severity of the location. First of all she has problems with both lungs and both of them are in the top lobes of each lung (which is the part of the lungs closest to your heart). On one lung you have 3 lobes and on the other lung there are two lobes. The opinion right now is that one lobe on each side will have to be completely removed because of the location and the look of these nodules or lessions. The biggest problem I see right now, aside from the evasive surgery is the fact that each surgery (one for each lung) takes about two weeks to recover so that would mean a delay on everything (transplant) for at LEAST 4 weeks. Problem being the chance for relapse. We can't give IV chemo during this time because her body would need all her White Blood Cells to recover from surgery and stay away from pneumonia or other infections. BUT they could possibly give her spinal chemo (IT chemo) since that is where she so quickly relapsed last time. It is still my belief that Katia relapsed from the tumor in her eye and since that has now been radiated and appears to be improving (there is still something there but radiation takes awhile to be fully effective) that if she could have the chemo in her spine to prevent relapse in her spinal fluid, brain and eye then maybe we would lessen that risk of relapse by a lot. The biggest problem with all of this is just running into more possible complications. Katia is feeling okay right now but inside she is a very sick little girl. These things can get out of hand very quickly. She is on medicine still to try to prevent the surgery so we will scan again in the middle of this week to compare and see if MAYBE they are improving. IF they are improving and surgery was not needed (this is a far off chance-I have to share that) then she will still require about 6 more weeks of this antibiotic she has been on for the fungus in her lungs. She will also have to be on this medicine for a LONG time after transplant which has its whole long list of complications. I am not trying to sound hopeless here. I am always full of hope and full of questions for the doctors to try to figure new ways or alternative ways around anything that be gone around. I am happy they are discussing this with so many of their colleagues. I will feel much more confident when a decision is made. I am not sure now if anything will happen this week other than more scans and an MRI of the eyes again and the brain. They had planned going in surgically this week but since the overall problem now seems much more complicated, there is more discussion needed, more doctors viewing the scans, and more scans following up. I am sure this week will be plenty full with discussions, opinions and decisions. Please pray for our family, Katia and Katia's team of doctors that they will decide on the appropriate action and this problem will be cleared up. God bless. Love, Tracy
PS I did get to Tampa today but not for too long. I was worried about all of this because not knowing is so difficult for me. I was glad to be back here at the hospital with Katia. Home is not the same without her there.



November 2, 2003 11:40 AM
We had a great night, a lot of rest and little interuptions:)
Right now Katia is up doing some of her "Katia Originals" which she hasn't felt up to doing for a while so hopefully we get some of those in the mail in the next 2 days. She has been in a good mood for the most part of the morning but that comes and goes.
I fully understand her having tantrums though! I wish I could sometimes. Not much else has gone on this morning which is good. Myron and the girls are headed here for the day and I will probably go to Tampa for a few hours.
How do you like the ladybug background? Katia loves it!! We just spent a few hours playing on her playpage. Literally we were on there for about 2 1/2 hours going through the games. Katia likes her page:) If you haven't been by there yet, the link is above. Hopefully you will have some time cause there are quite a few activities. My favorites are the potatoe heads and the stories and of course the dress up games! Katia's Play Page
This is our way of having "Play Dates".
Love, Tracy






November 1, 2003 10:00 PM
Just a quick update. No real news to share. We did have a good day. Daddy, Uncle and sisters spent most of the day here with us so we played with Katia, tried to get her to eat, watched a movie, tried to get her to eat (you get my point). She won! She didn't want to eat and she didn't. I think she will just do that in her own good time. She is definitely not one to be coaxed into anything. It looks like the surgery will be Tuesday or Wednesday. The doctors still have to meet with the surgeons to discuss how to go about the surgery. Katia's blood counts are also doing some weird things so at the time of surgery, she will also get a bone marrow aspiration and lumbar puncture to make sure her bone marrow and spinal fluid are still in remission. Her platelets are actually going up though so that is good. Right now, there is too much "concern" and we hope to get a lot of questions answered this week. I am completely tired right now. I did go outside two times today to just get some fresh air. Once this morning, early and again not too long ago. I will probably go for a small walk out to the bridge when Katia goes to sleep. I like to go out there and see if I can see any stars at night. I miss doing that at home. Katia got a package today that was partially opened but there were two DVDs (Strawberry Shortcake and Madeline). I like to send a thank you email when a package is received just so you don't worry if we got it but that was the only things in the package. We don't usually have any problems with mail so that caught me by surprise. So, if you sent it, let me know:) I also get a lot of letters from people telling me how Katia's page has changed their day to day life and I really appreciate those. I can't answer too much mail but I just want to say here and now that I am glad Katia's story is touching and changing lives. I want to introduce my daughter sometime when she is much older to talk about how her life made so many differences and let her tell her story. Katia says she wants to be a doctor when she gets bigger and I believe she will be. She is so mature in so many ways and in others (many) so innocent and full of exploration. I love to see when her little brain is learning new things:) It is so cute when she tries to figure new things out and she is successful. She gets very very happy. I want to get her into the Leap Frog things for her age. She is eager to learn. I always say their brains are like sponges and they absorb everything around them. Well it is true and since we are here so much, Katia has a good start to becoming a doctor with the vocabulary she already knows!!! Well Katia wants to cuddle so I am out of here! Love, Tracy



November 1, 2003 7:50 AM
Today is a new day:)
Katia's night went okay. She woke up a few times asking for water but other than that she is soundly asleep and I even heard a giggle here and there during the night so that was nice to hear. I have been awake since about 4:30 this morning doing a little organization. I first woke up and just couldn't go back to sleep so I was listening to the news. Finally right after 6:00 I decided to get up and clean up the room because being organized always helps me to be under less stress. Well, it worked. I kinda rearranged some stuff and took a few things out to my car to take home, I took a brisk walk for about 15 minutes and by the time I came back upstairs, I had a good dose a fresh air (which I have been doing each day) and I just felt better. I decided to sit down and read the guestbook so I am usually greeted with such nice messages which I ALWAYS read a few times each day. So I want to stop and say thank you to those of you who have left your words of prayer and encouragment. I so much appreciate them!!! Katia didn't open her mail yesterday so she can do that with her sisters today:)
I think she will feel better today since she has had a good night of sleep and the fact she is unplugged from her IV pole a few hours each day. I really think what threw her off last night was the antibiotic she only gets every 14 days. I need to remember to pre-medicate her for that next time. Well, that is about it for now. I pray this page helps you like it helps me, even if only 1/2 as much. God bless you for dropping by here. Love, Tracy









October 31, 2003 9:15 PM
If the night wasn't going bad enough, Katia became quite sick and just started throwing up and crying and holding her head and really showing a lot of discomfort. I forgot that she had another medicine tonight that she only gets every 14 days. Well, it really got to her and Myron and the kids were here so it just got hectic. The good thing was is there were all very helpful in getting the bed made and the room cleaned back up. Now she is just really having a bad headache and her body hurts from so much at one time. NOW she is getting ready to get the Ampho which makes her feel bad? We will see how this goes. It is the first time she will have the two medicines in one night. I am hoping she will fall asleep before they start the next one and hopefully do better. Well, I just wanted to update that. Just pray the rest of the night goes well and she can rest up. We have her sisters here for the weekend and I want them all to be able to have a good weekend. They are staying at the Ronald McDonald House and Myron will be there too so they can be around here with Katia more:) That will be nice for everyone. God bless. Love, Tracy



October 31, 2003 7:00 PM
Well the eye looks better so that is good and I will start with that. We will rescan that in about another week for a comparison scan.
The lungs however have a spot in each lung and from what I understand, one looks "different" and the other looks worse. So they will either have to go in (through surgery) to remove these or to at least biopsy. They just have to go in and see and test what they are dealing with and there is no other way to "get to them" except to actually go directly in there. I don't like this. Hopefully her counts will stay good. We will find out more over the weekend. The surgeons will meet with the doctor tomorrow to look at all the scans and figure out how and when to go in. They will try to do it early next week whatever they decide. Katia sounds better and the pneumonia looks better but these other problems are seperate. It isn't even clear what to call them yet. Just pray Katia has a good weekend and over this time the doctors and surgeons can find out what they need to do and the best way to go about it. Love, Tracy




October 31, 2003 5:15 PM
Well we had both the MRI and the CT SCAN done. Now I am waiting for all the results and I am pretty much a nervous wreck. I will get back when I know anything but please just pray that all the results are good results. Love, Tracy


October 31, 2003 9:25 AM

Happy Halloween! Today should be fun for a lot of people around here. There is going to be a costume parade and trick or treating from door to door. I can't wait to see what the kids are all dressed up like:)
Katia is wearing a pumpkin T-shirt right now but she doesn't feel good. She is throwing up some but mainly her throat hurts a lot still. I don't know why, I thought she would be getting better but just as fast as her counts came up, they are dropping. They were coming up because of the medicine she was getting to bring them up. They stopped that 2 days ago and her WBC count (White blood cells) have gone from 15.2 down to 4.18. Big drop quickly. If she has to have surgery for the lung biopsy, they will have to get those counts back up for that. Her platelets actually came up on their own last night from 48 to 55 so that is good. We had a good night. My chair that I sleep in was not working right so the foot part kept falling down so I finally just gave up on it, curled up in a ball and just slept that way. Not too bad though. They are getting ready to bring another one in here so tonight should be better. Katia didn't have any of her midnight talking sessions but I had a good scare. I forgot about Shrek around 2AM and I had gotten up to get a drink of water. Well, the lights were out in here but the lights at the nurses station were on just enough to light up Shrek's eyes! YIKES!
Funny, huh? Katia would have gotten a kick at how I jumped.
Well we are scheduled to get an MRI done today. No word on the CT SCAN but they are trying to get them done one right after the next. The MRI is to see if the radiation on her eye worked so I along with her doctors are curious and anxious to find out. This is a big thing to see if Katia is even eligible for transplant yet. The CT SCAN will say if her lungs look better or worse. If we just get the MRI done today and the CT SCAN done on Monday, I will be okay with that. Whatever works. It will just give me one thing to be anxious over at a time.
So....
Please pray that whatever tests we are able to get done today, the results will be good and not slow things down more or cause a need for a different treatment. I THINK the radiation worked because Katia hasn't complained about eye pain for a while. She is having headaches but not around her eye and they used to be very precisely right there at her right eye. We also have to see what is going on with the brain lesion to see if the chemo helped that at all. She will get a boost of radiation to her brain each time she goes for the full-body radiation before transplant but we need to know the brain lesion isn't getting any worse.
Okay, I feel like I have just dumped so much on you so I will end this for now. Please pray this halloween goes well everywhere. I always worry for other kids on halloween cause there are some mean people out there that try to hand out harmful things to kids and they have taken a lot of fun and innocence out of halloween.
Sharayah is looking forward to November cause her birthday is on the 13th:) This is her month coming up!
I am happy for her. She will be 15. I remember way back then!
Love, Tracy
PS A big thank you to those of you who have clicked on the link to donate to Caringbridge in Katia's Honor. As you can see this page is so very important to me and Caringbridge has made that a possibility:) If you would like to donate to Caringbridge in Katia's honor just go to the top or bottom of Katia's page and click on Donate to Caringbridge. If you would like to have your business or organization sponsor Katia's page and have your link at the bottom, go to the bottom of the page and you will see a place that says, Site Sponsored by:, click there and follow the links. Thank you so much and thank you CARINGBRIDGE for making this page a possibility!








October 30, 2003 4:45 PM
Can you guess what the big surprise today was? YES, it was the H-U-G-E SHREK up in the top photo. Pictured with Ms. Katia is SHREK, Kristi, and Chadd. Thank you so much for your visit today. She loves the Shrek (did I say HUGE!) and everyone else loves the Shrek. We have put it in the sunroom for the rest of the day so other kids can come by and see Shrek and maybe take a picture! That was just such a nice surprise:) I can't wait to try to drive him home. Imagine the looks I will get in traffic:) Katia has had a busy morning. One of my lifelong friends, Tracy (yes, we were Tracy and Tracy growing up) came down from Virginia for a visit so we had a nice morning and afternoon and had lunch together in the cafeteria. Myron came here with his younger brother who is visiting right now, Tyron and we spent time with him and he got to see Ms. Katia. She has been in a very good mood today. Right before our company showed up, she was feeling bad and started throwing up but she had some medicine and is feeling quite good now. I think she just fell asleep watching the HULK (it is the green-guy day). Well, I am going to go do my "chore" and wash some clothes at the Ronald McDonald House while she is asleep but I wanted to update the page real quick about what the surprise was:) Cool, huh?
Love, Tracy


October 30, 2003 9:00 AM

Last night, Katia woke up about 2:00 AM to just "talk" which was very nice but after about 30 minutes, I didn't see her feeling sleepy again. Then she wanted to watch TV but I told her to let's just listen to the radio so we did. She sings along with some of my favorite 80's songs and chats in between them and then she fell asleep. That was precious. I think I fell back asleep before she did but it was nice to have our little chatting session back and forth and to know that she is a loving little baby even in the middle of the night (I am not sure where she gets that from - pleasant beyond midnight!) WOW. Love, Tracy







October 29, 2003 9:00 PM
Well Katia had some coughing and throwing up again tonight but I think that was brought on by the smell of dinner that I was eating. I feel so bad for her cause I really do think she FEELS hungry but she is scared to eat thinking she will choke and get sick.
She is falling asleep right now all cuddled up in her bed getting ready to start all of her night time meds. Please pray she has a good and restful night. Love, Tracy
PS Tomorrow we have some visitors coming that Katia will be very happy to see:) I will post pictures after our visit!


October 29, 2003 7:03 PM
For those of you who have kept up with Princess Madison, I have just learned she passed away. Please keep her family in your prayers. God bless. Love, Tracy

Katia is having a good evening. We are watching "The Hulk" which is right up her alley! I love the fact that my baby has such a strong and determined personality.

I am going to just spend the evening with her and enjoy her company. I am so tired of so many sweet angels going to heaven. Why can't they be angels here on earth. God bless each of you and your dear families. Love, Tracy



October 29, 2003 12:41 PM
I had a long morning trying to sign on to AOL. Finally it ended up just being a problem with their network so now I am back up and running.
Our night went fairly well. Katia woke up in a very cranky mood but probably because she woke up after dreaming about home. I heard her talking to herself some about pushing the swing so...
She has been lose from her IV pole for a couple hours and walking around and playing but now she is just getting tired and has a headache so she is back in bed.
Her counts have shot back up again, too high for me. Her WBC count is 15.4 so they need to stop her "Immune building medicine". We don't want it to get too high.
I am hoping we can do these CT SCANS on Friday instead of waiting until Monday but I will have to find out. They are trying to schedule the CT SCAN and MRI on the same day one right after the next so she will be sedated just once.
I am glad to see Katia playing and in a happy mood today though. We both kinda woke up on the "wrong side of the bed" but we are feeling better now and in much more chipper moods. I try to not think about how many days we have been here but it is hard when I know we still have all of transplant to go through but I keep myself positive by thinking about how many people have registered and come forward to help Katia, how many lives are being affected in a positive way and that we could be in a far worse situation so I am thankful to God for all He has done and continues to do.
I am so very thankful for all of you who have done everything in your power to keep Katia happy with mail. I wish you could know just how happy you have made her and me for seeing her so happy!!! I have been so touched by so many peoples' kind words and guestbook entries and just the outpouring of love through postcards from all over the world!!! Some of you live in just "fairytale" looking places!!! It is amazing how one world can have so many different looking places.
Thank you so much for coming by today and checking on Katia and of course (AOL willing) I will be back to update later:) Love, Tracy

PS I am glad a lot of you have been recieving your CDs and are enjoying them. I hope you will share them with your friends and family. There is a link above which takes those of you who have not had the opportunity to learn about Katia's CD.
Want to hear a sample? ~~Click Here~~ We are working on a lot more airplay. I do have to share this. I want to thank Heather for doing the backup vocals on "Katia's Song". Myron just happen to run into her at the studio when he was there recording. She is one of the finalist for the upcoming American Idol show and she did a fantastic job with the vocals. So when American Idol starts again, cheer on Heather Piccinini:) God bless. Love, Tracy










October 28, 2003 8:20 PM
Okay quite a bit of "no news" this evening. First of all the biopsy on the lung did not go in far enough to get a good sample of any of the growths they were concerned about so now we just have to wait until Monday and do another CT SCAN and see if the growths get any smaller (that would mean the medicine is working) or if they get bigger then Katia will have to have surgery to do the biopsy (this we don't want to have to go through). So... we waited around to find that out. The reasoning behind them not getting to the point is it was just too close to her heart to go into with a needle by just following the needle through a CT SCAN. So, they needed to put her safety first. My thought is it will be better on Monday. Okay, what else? Platelets are staying around for 2 days and then she is needing transfusions and all of her counts are beginning to drop back down? This is probably due to some type of infection going on which again leads me to think she is dealing with a fungus in her lungs and not with tumors.
Okay, now on to good news. I did get to go to the Ronald McDonald House tonight for dinner. I thought I would go over for a nice quiet dinner but the place had about 50 volunteers over there which were part of a company that provided dinner. It was an awesome dinner!!! Chicken and yellow rice, black beans, salads and such:) What a great dinner!!! That was so nice. I got to eat dinner with a volunteer and her daughter that I had really grown to love last time we "lived" at the Ronald McDonald House so we talked and it felt quite "normal". Well, here I go babbling again. The afternoon was stressful because I feel like we did the biopsy for nothing but dinner took my mind off of that and I had a nice walk over there and back so I got fresh air and I am ready to "roll with the punches" now. God bless you and your family. Love, Tracy


October 28, 2003 1:55 PM
We have had a very very busy day. We filmed for a Public Service Announcement today which will aire soon on the Bright House Network Channels. Thank you Mr. Frank Sanchez for being involved with this and trying to help us raise awareness. Katia really enjoyed your "playtime" today. Thank you Victor and Patricia for working so hard on the public awareness.
Then we had a very busy mail day! As you can see the postcard count went a lot higher today!! Katia is worn down from her busy morning but she is worn down in a very happy way:)
I am glad to see things moving ahead with all the awareness to registering for the marrow donor program.
Then to top it all off, she just had balloons delivered!!! Thank you, Matt and Holley:)
We haven't heard anything today about the lung biopsy yet and I guess we will have an MRI of her eye in the next couple days from what I understand. A lot rides on these results as far as being able to have a transplant so we are quite nervous and anxious for these results. Well, I am going to go catch that breath of fresh air right now. I REALLY NEED IT!! God bless each of you. Love, Tracy



October 28, 2003 8:30 AM
The night here went pretty well minus one HUGE temper tantrum on Katia's part. I am not sure what started the whole thing but it took a good 10 minutes for her to finish. That is good sometimes though to flare up. I know she has had it with this place. So have I. I do have to hand it to the doctors and nurses here, well heck all the staff here, for putting up with us and making this stay here as good as it could possibly be. The doctors, nurses, cleaning services, volunteers, cafeteria workers, even the other parents seem to be able to get some laugh out of me each day. I really try to always stay optimistic throughout all of this. I mean we don't chose our path in life and this happens to be PART of our path so we should make the most of it as we walk this part of our path.
I also want to clarify something. I said the other day we have a preliminary match (which means just that-preliminary) but of course we will continue to look for a better match, a more perfect match because we may only have one shot at this and we want Katia to have the absolute best chances going into this. PLUS if for some reason the first one doesn't graft we would need yet another match so we are trying to find a backup plan out of all of these searches. Bone Marrow transplant even with perfect match is still so risky and will be full of complications but we want to knock out all of the unneccesary complications that we can by finding the closest match to Katia as possible. She is a difficult match but we know the right HLA type is out there for her:)
ALSO to finish out this thought, we will continue to do everything in our power to keep this registry growing by leaps and bounds like it has been over this past 2 months. So many people have come forward and registered to try to help Katia and we always stress if they don't match Katia, they could possibly be a match for someone else waiting for or will soon be needing a match. It is horrible but people will continue being diagnosed for now (until a cure is found) and we don't want anybody to have to struggle to find their loved one a match. So Myron and I have agreed to continue to help the National Marrow Donor Program in anyway we can. We were trying to make a difference before Katia relapsed and we will continue even after Katia does find her match and has a successful transplant:)
Katia is here to make a difference and we feel this is a HUGE difference she can help with, raising awareness to the absolute need for people to go out and have this very simple blood test done to register with the marrow program. I like to compare it with the need for people to register to vote. I would hope people that come to Katia's page, know Katia, hear Katia's song, sees a Public Service Announcement or advertisement with Katia will tell EVERYONE they know to please register and pass on the word. Like a snowball effect. I just felt I had to share that with those of you who come here. That gives us the strength to continue, knowing we can and will make a difference. Well, hopefully today will be a quiet day. Katia won't let me dress her right now cause she says she feels like throwing up so I am holding off. Her blood pressure is staying good now and she is doing very good on that new antibiotic so hopefully she will start getting better and feeling better. Her White Blood Cell count is falling right now about as fast as it came up but hopefully it won't zero out again. Just pray she stays stable in everything and the results we find out today or tomorrow are not bad and that we are already are the right treatment for what they find. God bless each of you and your families. Love, Tracy

PS Hug people today! (Well maybe not complete strangers - well maybe so)


*******





October 27, 2003 10:00 PM
Good night.No more news for today. Katia's blood pressure is doing better and she is feeling okay. She is coughing but that is to be expected. She is happily watching a movie right now and I am hoping she will be asleep soon. We are both pretty wiped out. Myron just came here and spent some time with us which is always nice. I read through the guestbook and am so touched by so many people sending their well wishes, letting us know they are praying and just so many nice messages. That really means the world to me:) God bless each of you and your families! Love, Tracy


October 27, 2003 3:30 PM
Well we are back up from the lung biopsy. They had me nervous but it all turned out okay. We have to go back down in a little bit for an x-ray to make sure the lung stays okay and just to get another picture. I have no news yet, not a thing so when I do, I will update. Thank you for your prayers that the procedure goes well. They worked:) Love, Tracy


October 27, 2003 8:20 AM
Katia's pressure dropped a bit lower last night, not too much but then it just hung right around the 80/40 for the most part of the night. We did finally get her medicines out of the way. Her WBC is back to a more normal range in the 8's so I feel better about that. I have to ask how it dropped even though they gave her another dose of the GCSF which raises them. She is scheduled (I have no idea yet what time) for the lung biopsy today but she needs to get platelets first so I know that takes over 2 hours to run those. I just pray all goes well today and we don't find out any unexpected news. What do I expect? An answer to an infection in the lungs like a fungal infection or bacterial that can be treated with antibiotics. That is what we hope for. For those of you who are asking, I am stepping outside in the air at least once a day (sometimes twice!) There is also another drive going on today for blood and registration of marrow donors. Myron and I plan to keep these going on as long as possible to help as many other kids find donors as we can. We hope the funding issue will be cleared up for good. No family should have to fight to find their kid a donor. As far as I am concerned when a person registers to become a donor, explain to them what it takes to register to be a marrow donor. I am touched by how many people, once they know the simplicity of registering, jump and do it. Most people just didn't understand about marrow donations. Plenty of people thought the marrow was drawn out and saved from the time of registration. Others thought only family members could be donors, etc. The list goes on. It is our plan to continue talking to people long after we find Katia her match. The preliminaries the doctors are looking at for Katia aren't as close as they would hope but it is my understanding that if nothing else shows up, they are willing to use the cord one instead of risking the new type of transplant they were talking about sending her away for. So it would be "settling" which I am okay with. I know the whole transplant is in God's hands and God has taken great care of Katia this far and we will just pray either a better one shows up very quickly or that this one will be excepted and cure her body. We just have to move forward as soon as Katia's body is ready and we get these radiations out of the way or we risk her relapsing while waiting. WE DON'T WANT THAT TO HAPPEN. I am just praying today's biopsy doesn't find something that sets Katia back with yet another problem to fix. She has so many already. Well, I am babbling. I am just nervous. I think I will go get that fresh air and clear my head some. I find myself praying while walking through the halls, sometimes out loud like I am carrying on a conversation but I guess that happens enough here that people don't look at me funny. God bless. Love, Tracy







October 26, 2003 11:30 PM
Okay, we just ran almost a complete bag of fluids through her to raise her pressure some and it is still staying the same. It isn't going any lower but it isn't raising. At least she is asleep or she would be getting very annoyed having her pressure taken so much. Her temperature is also low but not too low for Katia. She stays between 35.7 to about 36.3 normally unless she is working up to a fever and right now she is 35.0
I just feel bad she still has this medicine to go through tonight (we have it delayed right now) and then the procedure tomorrow. She should be home dreaming about her swingset or running around the house putting fingerprints on the glass:)



October 26, 2003 9:55 PM
Katia is now asleep so I thought I would update before it got too late. I don't get around to check on a lot of Caringbridge pages right now but I know a lot of people are in need of prayer. This weekend two more kids earned their angel wings and those are only the ones I know about. Jamie and Jaydog. This is just so heartbreaking when we are in the middle of our own fight. Just too many angels in heaven recently. I have been reading a lot into transplants, I have been reading for over a year but more even now. Transplant CAN be a cure but it is also so risky. I watch people go through it now here and also I have followed quite a bit of stories through Caringbridge through transplant and other sources. Some of turned out so well and others are just so heartbreaking. People ask how I get through each day and all of the different things Katia is going through. Well all I can say is that I trust God completely. I also read and study a lot because I like to be informed about what we are going through. I follow my motherly instincts when it comes to making difficult decisions and I just hug and kiss Katia a LOT!!! No parent should ever have to go through this but if I am going to go through this and if Katia has to suffer through the side effects of these treatments, I want to make sure she is in the happiest environment she can be in and have as many happy moments as possible. Spoil her? Of course!! I want Katia to feel wrapped in love and just know how special she really is. Do I think Katia is the center of the world? She is the center of OUR world and we want her to feel and know that. I really think her positive attitude and happiness have gotten her through so much and I want it to stay that way. I want to thank so many people for helping us to keep Katia on Cloud 9. I feel like so many people have reached out to her and shown love to a little girl that they only know through this page. So many people around the world have let me know they are praying for Katia and have signed her webpage saying how she has touched or changed their lives. Well, since the day Katia was born, she has changed my life. Katia brings a lot of smiles and laughter to our family. She is so sweet and so huggable to us and her sisters. We just love to squeeze her:) Katia is so easy to love and she is never shy to come up and just give us a hug or kiss or just say some cute little thing that just sends my heart spinning:)
Tonight before she fell asleep, she was holding on to me and telling me how much she loves me and MY SHIRT!! She really likes this one shirt I sleep in. It is soft and warm and a pretty ugly shade of brown but she likes it, loves it and gets so happy when I wear it. She tells me about her day and we get to laugh together and cuddle. People ask how I am not going crazy after 62 days in the hospital, well because we try to keep things light hearted as possible and Katia helps make that possible. I am sorry about babbling on and on and on but I just felt like sharing a piece of my world:)
God bless. Love, Tracy
PS Please pray for the biopsy of her lung to go as smooth as possible. Their biggest concern is her lung could collapse but they are prepared for that if it happens. I just don't want any more things to go wrong with Katia. She has been through so much. Her counts have gone very high, too high really and they will be even higher tomorrow. We will have to figure that out tomorrow also. Right now she has quite low blood pressure so I gotta go. I am not sure what is going on with this...
80/40




October 26, 2003 12:20 PM
Well we had a nice night and yes, I stayed at the Ronald McDonald house all night. Katia and Myron had a good night. They had to call in the Respitory Team once cause she was sounding so bad but hopefully they can find out the cause of all this tomorrow with the lung biopsy and get her treatment going to help her recover from this. I enjoyed sleeping on a real bed (although really the chair in the hospital is not my enemy) and getting up and getting dressed without so much rushing and people in and out. Sharayah and Tatiana were with me so that is a first for the last 62 days. Yes, today is day 62 but who is counting?
Anyway, Katia just had a bath and I pestered her with her mouthwashes (we haven't done them over the last 10 days or so and her tongue is pretty messed up from all of the throwing up) so she is mad at me right now - but clean!
I still have no idea what time tomorrow's procedure is but I will update when I know anything.
We are watching Lion King right now and Katia has set up a "Halloween Picnic" (play). Her and Myron designed a halloween table cloth and he got little halloween plates and napkins. She still won't eat anything. She asked for some McDonald's frenchfries for when Myron comes back over from Tampa today so we will see if she eats them or plays with them but at least she is asking for them. Her last meal was a piece of biscuit and some bacon on September 5th!! Well, that is about all for now. Please pray for the rest of our hospital "Cellmates". Love, Tracy

PS Katia is into watching movies A LOT right now!!!! Myron brought our DVD player to the room so we can watch DVD movies and not have to rewind plus she likes the games on the DVDs. We are trying to keep her little 3 year old self happy although she is blocked into this room and movies seem to do the trick right now. Whenever we do go to transplant we will definitely take the DVD in there!!!






October 25, 2003 8:30 PM
Well today has gone reasonably well. Katia is still coughing quite a bit which takes her breath away but she recovers on her own as long as she is not bothered or asked, "Are you okay?" (It really never makes since to ask that when someone can't talk, you know?)
Tonight is a big night!!! I am going to the Ronald McDonald house tonight with Sharayah and Tatiana and Myron is staying here. I have been very stubborn throughout but I think this will be good for everyone. I have never been away from Katia like that. Not at all!! So I may wonder over here at 2:00 AM to sneak a peak and a small kiss (I am kidding - hopefully all will go very well). She has to do that medicine again tonight and it can't be moved up in time so it will run late again. She has too many different things to run to move that up to an earlier time. I did already go to the Ronald McDonald house and eat dinner, do some laundry, take a shower and stretch out on the bed for a little bit!! Everyone thinks I should keep that room so I can go back and forth but not only does it cost $10.00 a day (which really is so well worth it) but there are some days that I just can't get away if Katia is really sick and I really think they want you there to spend the night plus you have a chore everyday to do. GUESS WHAT MY CHORE IS!!!!!
VACUMMING!!
That is one of my all time favorite things to do. I know that sounds so stupid but that is me!!! It is so relaxing to me and theraputic. Plus, in the morning at the Ronald McDonald house, you get up and you smell coffee, another thing I LOVE!!! I wouldn't be able to sleep there unless of course Myron is here. So I will see. We may just try to do this one day each weekend. It is such a long trip for them to make from Tampa to just be here an hour or so. Well, I have babbled on enough. I am looking forward to a good night of sleep. So, it may be late for me to update in the morning. Just so you don't worry. God bless. Love, Tracy



October 25, 2003 9:39 AM
Our night finished out well and Katia and I both had a good night sleep. She woke up a few times but went back to sleep. She is a little warm and working on a fever but so far so good:) She is watching TV right now and looking through her ladybug prayer book that I talk about so much. She enjoys looking through those pictures. We used to check the Caringbridge pages a few times each day and she would be right on my shoulders while I would type in guestbooks so she recognizes a lot of those pictures. Other, than that not a whole lot going on. Over the weekend, we shouldn't have much planned. Maybe the CT SCAN of the brain but that may wait until next week so Katia can have a quiet weekend. Monday will be busy enough. Katia knows she has something coming up and keeps telling me she doesn't want to go get "pictures" (x-rays) cause she heard us talking about it last night - nothing gets by her ears. She understands most anything dealing with her health. Well, I am going to clean up around here and try to have a basically quiet day. God bless. Love, Tracy
PS Remember the new little patient I was telling you about in the previous journal. She is 5 and newly diagnosed just 3 days ago. She will start chemo today. If you would like to send her a card, send it to Katia and on the bottom left corner of the envelope, just put "Katia's Friend". I am sure she would love some cards. God bless. Love, Tracy







October 24, 2003 11:30 PM
Okay, Katia is doing well on this. A few tremors but she should be okay. Hopefully this will continue over the next few hours with no adverse effects. They pre-medicated her to help her not have too bad of a reaction which seems to be working but I know those of you who check on Katia want to know how she is doing and I didn't want to leave you worrying. I pray tonight will go well and on Monday, tests will show what we need to get her better. I have looked up quite a few things to aquaint myself with what they are talking about. I also found out tonight that one of the families that came forward to register for Katia's drives just found out two days ago their five year old neice has Leukemia ALL and they are here on the floor. My heart just broke when I heard this. I hate to hear of anyone coming in her but imagine, they just came forward to try to help Katia and now they are in this fight too. She will be starting chemo treatments tomorrow so please pray for this little girl. If you would like to mail her a card, I can't give out her name but you can address it to Katia and in the bottom left hand corner of the envelope, put "Katia's friend" and I will see she gets it. I know this is all very scary for her and her family. I know this too too well. God bless you and I will update in the morning. Love, Tracy



October 24, 2003 10:44 PM
Well, we are starting a new medicine tonight so I am awake for the next few hours. This medicine can cause tremors (bad ones to knock her off her bed) or spiked blood pressure or fevers. So needless to say, my eyes are on HER and not thinking about sleeping. We WILL be doing a biopsy on Monday, just not sure if how. We will definitely go with the less evasive one but it does need to be done. I just feel that in my heart and I agree with the doctors. Katia's counts are good enough right now to go through it and I have learned to not put things aside. She is having little tremors right now so I am going to sum her up. Just pray this is not something that would put off the idea of transplant because we are pretty well running out of time on waiting and we want to prepare her and if there is not a perfect match by the time she is ready, we will have to just go with the closest one we can. We can't chance a relapse and I know that everything is in God's hands so He will lead us in the right direction and provide what is necessary. We just have faith in Him to see Katia through this.
On a good note, tonight, Chadd from the Chadd and Kristi Magic Morning Show on 94.9 came by to see Katia. She really liked him. He brought her a really cool Mickey given to him by Wayne Brady (from Whose Line is it Anyway?). This Mickey is just too cute for words, tells jokes and when you walk around Disney he starts shaking when you walk past certain points, you squeeze his hand and he tells you about it(like Cinderella's castle, etc.)
The picture above is of Katia with Chadd and in the photo album of course is Chadd with Sharayah and Tatiana because they are total Magic Morning Show fanatics!!!
Thank you Chadd for your visit and we look to seeing you Kristi and of course little Brendan!
Again, thank you everyone for visiting and of course for your prayers. Please pray Katia goes through this weekend okay and that Monday they find something they can just take care of with some medicine. Katia has been through so so much already and I just want to see her happy and healthy and go into a PERFECTLY MATCHED transplant ready and able to kick Leukemia's butt!!! Love, Tracy

October 24, 2003 5:00 PM
Quick update with some CT SCAN results. It seems there are some concerns on the scans so Monday, Katia will have to have a lung biopsy done to find out what is going on. They don't look any better and they are changing in appearance so, please pray that there is something that just a new medicine can take care of. They are making some medicine changes for her over the weekened starting tonight. Gotta run, doctor in here. Love, Tracy



October 24, 2003 9:13 AM
Well we are back from CT SCAN. We just had the chest done cause that is all that was on the orders? We should know if the pneumonia is getting better by these scans later in the day. I think she is improving a lot, really. She is in a good mood today. Katia is such a pleasant baby and so easy to spend the days with. I feel lucky to have so much time with her day in and day out. I hope she feels the same about me! Today she gets to meet Chadd and Kristi from 94.9 Morning Show so that will be nice. They have done so much to raise awareness for these Marrow Drives and they are the ones that played Myron's song on the morning radio show they host. Well, I think that is about it. OH LABS ARE HERE!! WBC COUNT IS 3.51!!! THAT IS GREAT!!! They will probably ease up on the drug that builds these counts now to see what happens. With the drugs, they could be false readings but Katia is improving so I think the White blood cells are all good white blood cells. What we don't want is white blood cells that are blast cells (leukemia cells) but I doubt any of these are bad. She is getting so much better. We need to keep her very healthy to get her to transplant:) God bless and thank you so much for all of your prayers. Please know that all of this is only possible because of prayers. Love, Tracy








October 23, 2003 6:30 PM
Well, I am back:)
I was gone for about 5 hours and that was such a refresher. I went to Walmart and got some soaps and air fresheners for the room and some long sleeve shirts! It is always so cold in here even with a jacket on but I guess the cold helps fight germs too.
WOW, it was nice to get away. Myron is always offering to come stay here so I can leave but then if Katia is having a new treatment or feeling really bad, I don't want to leave and I always end up cancelling. I saw today that I really need to do that more often. I just feel so bad that Katia is stuck here. She is here with Tatiana right now playing video bingo. The hospital plays it each Thursday night on their TV channel. The kids enjoy it a lot.
Not much news today (especially since I wasn't here). I guess Katia wasn't very agreeable with her doctor today so maybe tomorrow she will be able to listen to her better. I think we are due to have a CT SCAN in the morning or during the day sometime of her chest and brain.
You know, as I was driving home, I just look at other people in the other cars on the bridge (yes, that is me staring at you if you were out there) and I can't help but to think how different our world is now compared to what it was 2 years ago. I look at everything different. Sometimes people will say they had a bad day but then their bad day or problems aren't anything compared to mine but that is not totally true. Everyone's problems are important because they are a "problem". To someone in school trying to cram for a test the next day, that is their problem. To a person about to make a move or get married and they have all those lose ends to tie up, that is their problem. To someone going through a hard time in their life with a relationship, that is their problem. My point is that everyone does have their problems and everyone's ability to deal with problems are different. I see that when I look at people. I have learned to be more sympathetic and understanding. I have learned to listen (and talk) more. Well Katia is awake and I have been gone all day so I want to play with her some:) She is so fun to play with.
Remember tell your loved ones (and those you don't love so much) how much they mean to you. When you step outside in the morning, take a deep breath of fresh air and thank God for the new day he has given you. Love, Tracy

PS A promise to myself - I promise to go outside at least one time a day and take a deep breath!


October 23, 2003 10:15 AM
Well I am planning on getting to Tampa for a few hours!!!! I can't wait. One of Katia's nurses, Sarah, is coming in on her day off to stay with Katia. Although I hate to leave Katia (she is ALWAYS with me) I know she really likes Sarah and the two of them get along good and can play the day away. Katia probably won't even realize I am not just down stairs getting coffee or something. THANK YOU SARAH!!! I hope I remember how to drive. I don't know when the last time was I went home. I think it was September 10th. Anyway, today will be a relaxing day. I am just going to be leisure, maybe go have coffee at a bookstore:) Go home and take a real shower and try to get some of my clothes together that are better for the cold in here. I hadn't had the need to take out any winter clothes. Well, Katia is kind of cranky right now so let me go. Love, Tracy






October 22, 2003 9:11 PM
Well Katia again has a very upset stomach (which had been okay all day) and is gagging and vomiting again. She got all quiet and upset all the sudden and then...
Just pray she has a good restful night please. I like to see her sleep cause I feel her body is healing. She did take 2 good naps today so hopefully she will improve. I am glad she was able to play awhile tonight. Thank you, God. Love, Tracy


October 22, 2003 9:25 AM
Today has brought Katia's counts up even more:)
I am so happy she is getting some White Blood Cells to help her fight some of her infections and this pneumonia. She is in a much better mood. This morning we had round 6 of radiation which completes the eye radiation protocol. Now we wait a few days (I guess about 7 days) to see if the radiation did the job. With Katia's counts coming up, I am not sure if they are going to put her back on a low dose chemo to make sure she doesn't relapse. It has been quite a while that she has been off of chemo and the last thing we need is her to relapse! I am going to talk to the doctor today about that. So much has been going on with our family lately with all of the media and the drives and then the release of this CD. We haven't had a chance to just breathe so I really hope things will slow down some. I am planning to have a meeting on Monday to get all of the latest information of the donor match results. I do know we have 2 good preliminaries right now so that is hopeful. I don't know much about them as a lot of information is not able to be released. One is a cord match and the other is an adult match (which is a MUD match-"Matched Unrelated Donor")
I just pray these will pan out to be something that will work for Katia. As soon as I know, I of course will post and we will also follow up with the news. Since Katia's plea has been so publicized, I want people to know the outcome. I hate when I see a story or any news and never know how the story turned out. Do you ever watch Unsolved Mysteries and wonder what happened? Or you hear something on the news about a missing child or person and wonder what happened? I hate that!
Katia is feeling better today. She is still coughing a lot but not as much. When she coughs it is hard for her to catch her breath but she does. Her oxygen levels are staying above 95o that is great!! I praise God for her progress and thank each of you for your ongoing prayers. That is so important. I thank each of you who pray for my strength and sanity. It is working (well most of the time!) This morning when it was time for radiation, I could barely get my eyes open for the long walk over there. I hope tomorrow morning has no early plans. I am getting too old for late nights and early mornings:)
Please pray for the family of the girl that passed away last night. Her mom had a baby yesterday and lost her daughter in the same day. I cannot imagine what they are going through right now. I try to not dwell on things but at certain times, that is impossible.
There is a link above "Kinder Cans". Let me tell you a little bit about it. It is a new company. Katia received one of the cans yesterday for her age group and it had puzzles, books, games, a pink squeaky duck, a shirt and some water paint. It all came in a very nice decorated can and just was so well thought out. They are the perfect gift idea for someone in the hospital (it cheered Katia up quite a bit and she adores the CAN!) It is also a great gift idea to just call in and have shipped to someone cause they seem to have really thought the items through as to what to put in for each age group. The quality of the toys is just awesome and they are unique. I just wanted to mention them because they donated Katia's to her and it turned out to be a very nice gift idea. Well, Katia is asleep right now and Myron is on his way here so I want to run down and try to meet him outside. I miss meeting him coming home from work, yes 15 years of marriage and I still go out each day and meet him coming home:)
Love, Tracy




October 21, 2003 10:40 PM
Just a quick update to let you know Katia's evening did improve. She played a little on her bed and started talking more which was great to hear!!! I am just glad to see her feel better. She tried to eat some jello and had 2 small bites of orange jello:) She looked like she was enjoying but then she choked and that lasted a few minutes and she wanted nothing else to do with it BUT she got down 2 bites and they are down in her little belly right now which is probably shocked to see food!!! That is a start, a good start. I am pleased with any progress. On some sad news, a young girl on the floor passed away tonight. She was in ICU. She was an AML patient who had recently went through transplant that had been originally diagnosed around the middle of Katia's first treatments and also relapsed not too long ago. She was 19 years old. She did not have a webpage but I am going to add her name to the angel links but it just won't be linked.
"Fly free Vanessa" Well, I am going to try to stop early and take a breather before I go to bed. I really need to clear my head tomorrow because there has just been so much stress over the last few days. I have to organize my thoughts. Love, Tracy



October 21, 2003 5:30 PM
First I forgot to say today that Katia's WBC count continues to rise which is very good and she has been fever free for more than 36 hours now!!! That was on my mind this morning but I kept getting interupted and didn't realize I didn't add it. Her day has been much better than yesterday. She isn't getting out of bed at all and is still coughing a lot but throwing up a lot less. They suctioned her out really well today so hopefully she will stay clear even into the evening and night. She does have quite a bit of pneumonia and her esophagus is showing to be quite swollen and torn some so she has a very sore throat but she has a good attitude today much better than the last few days. She wants to eat but can't. I am glad she wants to and hopefully that want will continue after her throat heals. I hope they are able to find the problem for her throat and put her on whatever medicines it will take to make it better cause she is miserable feeling and yet she TRIES so hard to be happy. What a hero!!! Well, I am going to bathe her and see if that will make her evening go better. I usually bathe her in the mornings but I am going to do it twice a day since she is feeling so crabby most of the time and maybe that will pep her up some. She can't get a shower or a bath but I sponge her down. She doesn't much like it but...
Well she has just started crying so let me go:) Love, Tracy


October 21, 2003 9:33 AM
Well we are back from the endoscopy. We have some pretty pictures of Katia's insides but no results. They were able to suck a lot of junk out of her so hopefully she will be clear for the morning. Her oxygen levels are staying right around 93ight now but she is feeling okay. Last night she had an appetite but couldn't even get water down her throat so hopefully this will answer some questions within the next 24 to 48 hours. They sent off for some labs and biopsies. I really appreciate the kindness in the guestbook. I know I don't get around to guestbooks too much but I do try to drop in on pages to check updates when I have the chance. Please, if there is anything good or bad going on, please email me so I am sure to know. I feel so bad not knowing how each of you are doing and I really want to stay updated. I have received some pictures to add to "Katia's picture prayer book" of people needing prayer or those that are newly diagnosed. If you would like to be in this book, we do go through it very often and show it to our visitors. Just mail a wallet size picture with the name and diagnosis on the front of the picture somewhere.
We have some envelopes here for "Katia orginals" but Katia can't color right now, maybe in the next few days. She tries to color but the coughing just is so upsetting to her. Right now, she is watching an Elmo movie and keeps clearing her throat. She was mad cause she woke up while they were suctioning her out and she kept telling me and pointing out the nurse that did it. Although I appreciate the fact Katia was suctioned out, she is memorizing faces:) Poor nurse.
Well that is about it for now. We had a decent night, did send off another stool specimen but no matter how that turns out, Katia isn't able to get out of her room right now anyway. So...
I just want to thank each of you for your prayers and cards, postcards and packages. Everything comes together to bring Katia health and smiles. God bless you for being a part of our lives. Love, Tracy






October 20, 2003 8:30 PM
I really don't have another update but I don't want anyone to worry that I couldn't update for any reason. We just have a big day ahead of us tomorrow and I need your prayers that we don't find out anymore bad news. Pray that this is something that can be fixed quickly and we can continue to move ahead. Tomorrow's radiation has been canceled due to it being too hard on her to do so much in one day and she is just not feeling good at all so we don't want to sedate her twice. Well, I am pretty much just going to try to settle with Katia early. Myron is getting ready to leave. I am glad she had fun with daddy tonight. That is so important to me. Love, Tracy
PS A new friend Lori is designing a play page for Katia called
KATIA'S KIDS PLAY PAGE.

It is just being started and will be having alot added to it. Thank you so much Lori, the page looks great!!! Love, Tracy





October 20, 2003 1:45 PM
Okay, we have an other update. This one is not too good. Katia has to have an endoscopy in the morning because her esophagus is showing in the CT SCANS as being VERY swollen and torn and they don't know what is causing this so they need to do the endoscopy to find out why. It is pretty serious from the sound of it and they just came in to let me know. This is probably why she is feeling so bad and sounding so bad and coughing and throwing up so much PLUS the pneumonia has now worsened quite a bit so ... we are waiting for answers for that as to what the plans will be. Right now, the plan is to go ahead with the last radiation tomorrow and then right from there go to surgery for the endoscopy under the same type of sedation. Please pray this in not something that will slow down her progress and the ability to even go through with a transplant when that is found and settled. We have been on SUCH a rollercoaster ride and when I saw the doctor headed back in here so fast, I knew something had to be up. I will update as I find things out. Love, Tracy



October 20, 2003 11:50 AM
Finally have some labs here!!! WBC is 0.46 (normal is 4.0 - 12.0)!!!

We are moving up:)

Katia is having a lot of coughing and now some type of rash appearing around on her? We don't know what that is. Her bottom is also VERY sore and showing irritation so we will see where that leads but her counts are coming up so we will focus on that right now! Love, Tracy
Love, Tracy
October 20, 2003 8:00 AM
Well we just completed radiation treatment 5 of 6. Katia is getting tired of all the early morning treatments but I am so proud of her for her strong attitude. Katia is my hero!! I know I have said that before. "Katia's Song" was played on 94.9 FM
this morning and I want to thank Chadd and Kristi and the producers of The Magic Morning Show for taking the time to help us raise awareness. So many people have come forward to get registered for the Marrow Donor Program and I not only pray we find Katia a perfect match but I pray for all of those awaiting a Bone Marrow Match to find their donors and very soon.
Last night went reasonably well. We had some problems with her oxygen dropping but once we got her levels situated she slept good:)
Thank you for checking in on us this morning. I will of course update, as usual, during the day or if I find out any new information or results.
If you are new to Katia's site, please take a moment to just say hello in the guestbook so we know you came by and we hope you will drop by again for a quick visit with Katia:)
I said this before but I truly believe this so I will repeat it.

Thank you for coming by and checking on Katia and as soon as you are done reading this, hug your family. Give your spouse an extra kiss before they go away to work or out to run errands. Call your parents, and just thank them for bringing you into the world. Get your kids to do an extra special piece of artwork so you can hang it up on your refrigerator and do something really nice for yourself that is relaxing. I have learned to look at life in a complete way of appreciation for the good times, the slow times and especially the boring times:) God bless. Love, Tracy


**




October 19, 2003 10:16PM
Thank you so much for all of your prayers, cards, letters, and packages. Thank you to all of you who have registered a Marrow Donor recently and all of you who had already felt that need to do so before you heard of Katia. I hope people will continue passing the word on the importance of registering long after Katia has successfully gone through a transplant:) I have good faith that God will bring Katia a near perfect match, if not a perfect match. Already so much good has come from Katia's story and I am sure some people will get matches from those of you who have registered. Katia was able to walk around today for about an hour cause she was feeling good. Her bottom is hurting her a lot tonight which put her back in bed but it was nice to see her up for a bit. I pray she will have a restful night as tomorrow starts early with radiation again. I can't wait to get Katia's counts tomorrow so I can see how much they go up. Positive thinking!!! Sharayah and Tatiana spent a lot of today here playing with Katia, reading to Katia and just making her happy. It is nice to see the three of them together because they are very close with Katia even though she is so much younger than they are. God blessed me with 3 sweet girls!!!
Katia is just now going to sleep so I am off to go shower and get myself tucked in to my "sleeping chair" (comfy) and try to get some shut eye. Myron should be interviewed tomorrow on 94.9 and possibly have his song released for play on there. I will let you know. To go to the radio station online and listen LIVE, 94.9 FM
Love, Tracy

October 19, 2003 1:20 PM
WE HAVE COUNTS GOING UP!! Today the WBC is 0.24 so we are getting closer to the 4.0 we are going for:) I thought I would add that:) Katia did get platelets transfused today. They were down to 17 but that is probably due to the continuing fevers. So she is all packed with platelets today.

October 19, 2003 10:45 AM
(Vomit news following, if you have a weak stomach, move down to ***)
Good morning. Yes, our night went reasonably well (for a night of ours that is). Katia threw up a few times in the night but the worst being over by midnight. She seems to be throwing up some blood and a lot of brown stuff, not much mucus. I wish she would just get all of the mucus out of her system.
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She sounds rough when she breathes but she is resting okay right now. During the night she wakes up so much crying that I feel like I am the mother of a newborn again except a alot of throwing up and monitors beeping (sorry I mentioned throwup).
Well, today will hopefully be a smooth day. I want her to get up and take a really good bath (as good as a sponge bath can get). She hates baths right now because her bones just hurt to have to stand up on the towel and she is so protective of her broviac not to get it wet so she doesn't like anything wet from her shoulders to her waist. At home, she used to love to jump in the shower (not a big fan of baths anyway) but she loved the shower!!!
I plan to try to organize some of my room today. We will see how far I get. I want to get some plastic utility drawers for whenever we go to transplant. That would help a lot and then when it is time to go home, I just pack up the drawers:)
I am a very organized person, very organized!!
I miss being able to run to Walmart and walk around and pick up the little things here and there that make life easier. Now, my mind stays so full and when I ask Myron to pick up something, I usually forget the things that would help tidy up. Someone did send me an organizer fold-out folder so that gave me the uumph to organize my papers:) Thank you for that!
Katia is really enjoying the postcards. We were going through them late last night and she was showing me the places she really thinks would be fun to visit. She really likes the things with rivers and bridges and trees, stuff with nature and then the ones that show cities and towns with people. But of course, her favorites are the theme parks. We really do spend a lot of time going through the postcards. She of course loves opening packages and seeing what goodies are inside.
Okay, I keep having to stop so I better get this update done before AOL kicks me off again.
Thank you for coming by and checking on Katia and as soon as you are done reading this, hug your family. Give your spouse an extra kiss before they go away to work or out to run errands. Call your parents, and just thank them for bringing you into the world. Get your kids to do an extra special piece of artwork so you can hang it up on your refrigerator and do something really nice for yourself that is relaxing. I have learned to look at life in a complete way of appreciation for the good times, the slow times and especially the boring times:) God bless. Love, Tracy








October 18, 2003 11:30 PM
Wow, exactly 12 hours since the last update. Well first I will say I had a 2 hour nap today!!!! That was great. Katia fell asleep on me and we slept for about 2 hours just cuddled in bed. I have a brown night shirt that is long and soft and she likes to hold it and sleep. It is my favorite shirt to sleep in because it is so comfortable and soft. Anyway, we were laying on her bed and she ask me to go put it on so I knew she was really sleep so I did and we had a wonderful nap:) :)
I am so happy she slept those 2 hours and me too.
She is still coughing a lot but she had a restful nap and right now seems very restful sleeping not making much noise. So I hope this will be a good evening and since we don't HAVE to be up at 6:00 in the morning, maybe we will get some extra morning sleep:)
We will feel like new people.
I haven't really heard any results but I do know the CT SCAN shows some spots on her lungs which they expected and some more "junk" in the upper part of her left lung but with her counts going up, this should help her to start feeling better and her body can heal itself some. She has needed oxygen on and off throughout most of the afternoon and evening and when she is asleep I just put it in front of her face to blow on her. She WILL NOT wear a mask or let them put it on her nose so this is the best we can do. They don't like it to go below 94but it gets into the mid to upper 80s a lot. It makes her head feel bad so if she is awake she will put the air up to her face and breathe it in until she feels better which is usually when her level reaches 95 or 96.
Well I feel like I am babbling. We did see Christina walk by this afternoon and that was GREAT! I love seeing her feel good enough to get out of her room sometimes. It will make her stronger and that is always good. She is such a sweet girl and we have really gotten to know her whole family pretty well. Sherry and I can vent on eachother since we are only 7 doors away from eachother. Both of us are pretty locked away most of the day taking care of our daughters though but we do know what eachother is going through (which is sad).
Well, I am going to try to get some shut eye. Tomorrow I am going to do some organizing around here and try to see if Katia will sit up and color with me:) That is always fun cause she tells me a lot about her pictures. When they say a picture is worth a thousand words, that is soooooooooooo true with Katia. Love,Tracy


October 18, 2003 11:30 AM
Very quick. Our evening did go better, a few times of throwing up and some low oxygen levels but then we got her comfortable and we made it through a few hours of straight sleep. Right now we are headed for more scans of her sinuses from what I understand. No results yet from the scans yesterday. Her platelets have dropped again but I don't think she will need them today since she has no radiation in the morning. Her WBC count is up to 0.16 which is up from yesterday some which was 0.12 so that is good. We are headed in the right direction:)
Thank you so much for coming by and I hope I didn't have you worried by not updating this morning. We at least got some sleep. I feel better at least and my head feels a little more clear. God bless you. Love, Tracy





october 17, 2003 11:34 PM
Okay, somehow I updated an hour ago, I come back and it is gone! So a quick summary since things change even over an hour. Katia is having a lot of coughing and gagging still but less throwing up. Her oxygen levels keep dropping but I assume that is because of all the junk she has in her throat and lungs (although her lungs don't sound so bad which is the confusing part). She is asleep right now. We did open some mail tonight and we both enjoyed going through postcards. There were 37 new ones!!! We are quite tired from our trip around to your states and other countries tonight:)
Katia loves the pictures on the postcards. There are so many things to point out (she isn't talking right now) and some of the postcards are funny, others scenic and the ones of towns and cities are just so full of living! We really like the postcards. I still want to hang them up but I prefer when we go to transplant. Maybe we will just wallpaper the walls and windows by that time:)
Katia had a worse day today than yesterday but we always pray tomorrow will be better. She does have the two day break from the radiation but she is due to have another CT SCAN tomorrow of her sinuses and we still haven't gotten the results from today!! The machine that gives the reports or something is messed up so the radiologist can't view the films. The computer is holding on to the images and not letting them out. Then we had all types of IV pump troubles tonight for about 2 hours of beeping and squealing but they are finally working. Then, her broviac was clogged but now that is working so we are about 4 hours behind on medicines but they are going:) So you see, things do improve with time. Please pray little Katia's counts go up for the morning "report card" (that is what we call her lab reports). Myron's song should start being on 3 of the local channels here and there is an interview with him on Monday on 94.9 with Chad and Christy. I really think this song may spread around. It really turned out good and it is so touching. I may be prejudice so those of you who will be receiving your CDs I would love your comments!!! Okay, machine is beeping and just scared the wits out of me and I need my wits and my sleep:)
Katia is asleep so I better say night night:)
Love, Tracy

October 17, 2003 3:45 PM
I just wanted to update, things are about the same, no better, no worse. Katia's cough is really bothering her a LOT. We did have the CT SCAN done and are waiting for some results on that. There seems to be a problem with the machine right now so we are still waiting. Katia is not sleeping as much today which is both good and bad because she is just so irritated and upset with the cough. We haven't opened mail for 2 days right now because she is feeling so bad (that is bad when she doesn't want to open mail!)
Her doctors are doing all they can right now because without answers, we all are stuck for what to do to make Katia feel better. I pray her counts will continue going up and that will help her enough to start improving or at least not get any worse. We have no radiation treatments for 2 days since it is the weekend so hopefully we can get some rest! We both really need it. I feel like complete DRAB right now!!! Katia feels just totally down and worn out. She smiles here and there but I can see how really bothered she is by the way she looks at me.
We had a friend, Emily, come by and give Katia a hat that she made for some of the patients up here. It says, "Cancer SUCKS". How true is that and on such a perfect day for Katia to wear it!!! Katia is just sick and tired of being sick and tired. I will try to update later with some results or just to say, "BOO and good night". Love, Tracy


October 17, 2003 8:03 PM
Okay well good news first,WBC is up to 0.12 which is WOW to me!!! At least it went up and not down and for that I am so thankful. She also held onto her platelets over night:) YIPPPPEEEEE!!!!
We just got back from radiation which took a little less time so therefore she didn't need the extra dose of sedation which means she is in a better all around mood! We will have CT SCAN today which means she has to drink down the contrast right now which she HATES. I just pray she will drink it and not throw it up. I get to be the bad guy that makes her drink it all but that is okay. I know she stays less upset if I give it to her. The CT SCAN is looking for more information on what could be keeping her so sick and throwing up and feverish which continued all night, on and off. Sometimes she thinks she is going to throw up and goes through all the motion but nothing comes up and that upsets her even more. Okay, let's see what else. The fevers hung around 102 most of the night. BUT HER COUNTS CAME UP SOME:) SO THAT IS WHAT I AM HOLDING ONTO TODAY:) I am also very thankful for our wonderful doctors and nurses and the staff of this hospital. Today is day #53 and the staff have made this stay a lot more tolerable. They help keep me and Katia sane and Myron feels better with me here seeing that they take such wonderful care of us. THANK YOU ALL CHILDREN'S HOSPITAL!
I know they are running another search today for donors or I think they put it in yesterday actually so we are staying very positive about the whole search. I think GOD has wonderful plans for Ms. Katia. Okay, I keep having typos so I better sum all this up. Just pray that today goes well and answers are found to her ongoing sickness. Love, Tracy




October 16, 2003 8:10 AM

We are back from radiation. 3 down and 3 more to go! The night was probably one of our worst so now we are going to be suctioning Katia out to keep her clearer and hopefully ease up her choking and throwing up. She did however hold onto her platelets. So that was great news. They checked her twice. She will probably need them by the end of the day or into the night because she is burning them up fast with her fevers but it was nice she didn't need them suddenly like yesterday morning. Her WBC count is now 0.05 which is the highest it has been since around September 15th. Who knows, maybe this is the start of a good thing. We will go to O.R. in a couple of hours so they will do the brochoscopy, suction her lungs out real good and try to find the source to all of these problems. For now, please continue your prayers that Katia can get some rest. Her body really needs it. She is a very sick little girl right now and I want her to rest, feel better, and smile:)
The news story was really nice and the station is trying to send it out to their affiliates so who knows, watch your local WB channel, you may see it.
Thank you for checking in on us. This will be a long and draining day but hopefully today will bring some tests that we can get some answers. We are still waiting for good news on a match but I am feeling very very positive about this and that is a good thing:) Love, Tracy
PS The link to Katia's Song CD page keeps messing up for some reason so I am going to put the address here in case the link doesn't work.

http://hometown.aol.com/katiasongcd/katiasongcd.html

Katia's Song CD Page








October 15, 2003 9:40 PM
Thank you for coming by to check on Katia. She is sleeping right now but sounding very noisy and moaning so I am sure she is not resting too well. I prayed she will have good rest with happy dreams! God bless you. Please pray tomorrow goes well and we can find out what is wrong with Katia and get her feeling better, quickly. Love, Tracy
PS Katia is going to be on the local Tampa WB channel's 10PM news. I am not sure yet if there will be an online link but they say it is really a good story so I hope I can share it with everybody. I will find out. Love, Tracy

October 15, 2003 5:30 PM
Well tomorrow will be a long day but hopefully after some tests, we will find out something. They are going ahead with tomorrow's radiation at 7AM and then she will have a type of lung test, Bronchoscopy, where they stick a scope down and view her airways and lungs and take some samples. She of course will be asleep through this also so that means 2 sedations and possibly 3 if the CT SCAN still needs to be followed up. Right now Katia is coughing about 90f the day and the fever just won't go away so they feel something else is going on inside her lungs and I am glad they are jumping on it first thing tomorrow. Pray she has a decent night. She is just tired so just Myron is coming over here right now to stay a bit and spend some quiet time with Katia and I. Tatiana has been home today sick and throwing up. I swear, when it rains it pours. Tatiana gets like that though when she is worn down and they have been staying over here late at nights and then going to school early in the morning. This is very hard on all of us cause we really enjoy being together and it is just so hard to do that with school, homework, drives going on, different meetings and then this CD project. So hopefully the CD will do well and we can slow down some now that the project part of it is basically done. It turned out AMAZINGLY well and I don't say that lightly. It is as good as anything I have heard on the radio ever. It is very well written and produced. You can see a copy of the label on the CD PAGE I have linked above the journals. Well, I have to keep this short as I try to stay on the bed with Katia just in case of anything. She will be having her labs drawn twice a day to make sure her blood and platelets don't bottom out so bad again. Love, Tracy
PS Everything dealing with the CD needs to be handled by viewing the CD page and using the email address for the CD so I can stay organized. The email for that is on the CD SITE.



October 15, 2003 2:15 PM
Okay, update. We are going to get Infectious Disease and Pulmonology to come in and check on Katia. The antibiotics not working and the continuous fevers and need for transfusions has them thinking this may not be pneumonia so they need to look at her x-rays and CT SCANS to find out what to do from here. Katia feels absolutely horrible right now and is doing her best to just stay asleep. Everytime she wakes up, she throws up and she keeps spiking high fevers. She is looking puny right now as I watch her sleep and I just want her to feel better and smile and laugh. I am not used to her getting so down cause she always bounces back from things so I want her to feel better. Just please pray they find the right solution to the problem as she has no counts and things can get out of hand quickly. God bless you. Love, Tracy

PS There is a link above for the CD information on a seperate website. To learn how you can obtain a copy of the CD, follow the link above and use the email address listed on the CD page for any further questions pertaining to CD information. I want this page to only be centered around Katia and her day to day journey and progress:)
Katia's CD Page

October 15, 2003 9:55 AM
Okay, let's see, stay positive... stay positive.
Okay, we got another radiation behind us at 7AM and also had to have a chest x-ray done which went well. That is positive. The news episode went well last night and the one tonight should be really good but this one will not be online that I know of. I will find out.
Last night did not go so well. Katia spiked a fever, lost all of her platelets (the level was 2 this morning) so they had to rush her some platelets as she was also febrile so the rest of the platelets would disappear and that is just not good at all. She woke up throwing up and threw up before going to radiation. This is due to the pneumonia we think which is why we had the chest x-ray ordered this morning. Her counts which had come from 0.01 to 0.02, 0.03 and finally to 0.04 (which in all terms =0) dropped back down again today to 0.02. For anyone to be happy around here we at last would like to see 0.40. Normal is 4.0-12.0 so...
She is laying here right now contently watching Blue's Clues.
Since so much went on last night, nobody got any sleep so hopefully we can take a small nap today. I think we should have a quiet day. She does need a blood transfusion today and they are going to start doing labs two times each day so nothing critical goes unseen for too long. We will go again tomorrow for more radiation bright and early or actually dark and early. Katia pointed out the sun wasn't awake today when we were:) Cute, huh?
Love, Tracy




October 14, 2003 11:40 PM
I am putting the link here for one of the news stories that were on tonight. The other is not online. I forgot something but Katia did not realize they had marked her head for radiation until the news story came on. She was a little confused but when I told them it was so they could just take the picture faster tomorrow (she thinks she is getting her picture taken in radiation) then she was okay with it. She first said, "Katia's head is sick!" I felt so bad. But all is okay now and she isn't upset by it. Here is the link.
CBS NEWS STORY OCTOBER 14, 2003
We go again in the morning at 7AM for Wednesday, Thursday, Friday, Monday, and Tuesday. Then we will repeat an MRI about 2 weeks later to see if that was enough. Love, Tracy


October 14, 2003 1:25 PM
One radiation treatment behind us (to the eye), 6 more to go. We will go each morning at 7AM except Saturday and Sunday. She did okay, had a rough time waking up but she is okay now, just grumpy. Love, Tracy

October 14, 2003 10:06 AM
Not much to update this morning and I am pretty rushed for time. We are about to go over for the fittings and setup for Katia's radiation treatments. She had a very bumpy night with a lot of coughing and gagging which may slow things up today since she is supposed to be sedated. I am trying to find out but I will update when that is behind us. Katia's mood is pretty low today and I am not sure why. She is clammed up and not talking to even me but I try to not harass her. I think she knows something is up this morning.
She needs some cheering up so I will figure something out for the afternoon.
She still has all of her many cards and postcards in her room which she does take time to just look at now and then. I will see her just looking around the room and we play I SPY a lot! What a great room to play I SPY in. Her balloons have lost their uumph (however you spell that) and since she doesn't feel good, she isn't getting out of bed even when she is unplugged. She will come sit with me.
Here is something cute (now I can say that) that she did yesterday. I wanted to take a nap with her in the chair. I pictured us curled up together. Well Katia's idea was to keep bumping heads with me and saying, "CHEERS MOMMY!" and then laughing and doing this again and again. Needless to say I was getting a headache and no nap but I did try to look at it then as a funny moment. Now, I definitely see how cute she was being and I am glad she can find that humor within herself. God bless you. Love, Tracy






October 13, 2003 10:37 PM
Well tonight is going rough. Katia is again going up with a fever but it is just playing with us it seems. She is going tomorrow to prepare for her radiation treatments so they will fit her with a radiation mask and set the settings they need. She is expected to sit still for an hour which means she will be asleep for that. Hopefully for the actual treatments each day, we can just give her a mild sedative. Katia is still having breathing problems and coughing and gagging. She seems to be such a tough cookie and tries to bouch back quickly before it happens again. She doesn't like messing up her bed or her shirt. That upsets her and she doesn't like to see the puke. She just asked her nurse, "Do you remember my Leukemia when I was little in the crib?" The nurse answered her and Katia said, "Yeh, now I am a lot bigger." She is so matter factly you know?
Poor little thing has been through so much but in her little mind, I think she sees this as a "normal" childhood. She doesn't know that everyone doesn't do this because most of the friends she has made are going through treatments and at home she is just so much around us. I can learn a lot from Katia about just going full spead ahead and keeping a smile and good attitude. Even when she is throwing up, she will smile when she stops and then start again. She just looks at me like, "I love you for helping me." I love helping her:)
God bless. Love, Tracy
October 13, 2003 8:45 AM
We are getting up from a rough evening last night with Katia throwing up or trying to throw up. This pneumonia is really bothering her and she can't seem to relax too much. She did have fun last night with her daddy and sisters but she kept having quiet spells cause she didn't feel good and she doesn't like to show she doesn't feel good. Today is day 49 in here and I think she is just getting to the point of having enough. It seems everytime we turn around, a new problem pops up. She was filled up with blood and platelets yesterday. Normal platelet levels are 150 - 450, today hers are 10. Yesterday they were 6 and she received 6 units and POOF they are gone! Normal White Blood Cell count is 4.0 - 12.0, hers is 0.04 which is the one of highest they have been since September 5 but nobody understands why the aren't coming up. She has been on double doses of medicine to bring them up and it is doing nothing. Without White Blood Cells(WBC), her body can't heal. She is on antibiotics to help things hopefully not worsen but she needs those WBC to GET better (like the pneumonia, her biopsy sites, her thumb, sinus infection, etc.) I hate to sound so negative but I just feel like we keep spinning our wheels and we haven't even begun a transplant which is so much harder compared to what we are going through. I am watching people here go through transplant, like Christina and I just see how wiped out they really get and so sick and unable to even stay awake or walk. I have faith that first, God will get Katia her match and then He will get her through transplant with small goals that she will keep meeting. This week should give us a LOT of answers!!! I am both anxious and nervous for this week.
On a good note, Myron had a very nice interview on the radio today to introduce the song and to announce the drive going on at Tampa International Airport today on the 3rd flood, landside. Katia was so happy to wake up to daddy's talking on the radio right by her head. We have this radio in here that barely picks up the radio but we mainly use it to listen to CDs so this morning was filled with a lot of static but pleasant static.
God bless you and thank you for dropping by to check on Katia! Love, Tracy






October 12, 2003 6:15 PM
Today has gone well. Katia has been filled up with blood and platelets (the blood is still going as we speak!). Her platelets got so low her gums and lips started bleeding and she was throwing up. I was afraid she would rupture something in her esophagus while she was so low but she didn't and now the platelets are in place. I am right, radiation should start on Wednesday. That is the one to the eye and it should go on everyday for 2 weeks unless they have changed that. I will find out tomorrow. Katia is very sleepy right now and daddy is headed here so she is napping:)
We have been listening to the new song on and off all day. She loves her song!
She has been very bubbly today but then she will clam up for a while and get very quiet. I am sure her stomach is bothering her, it usually does when she gets blood and platelets back to back but she should feel better and energized when she wakes up. See how important it is to REGULARLY donate blood and platelets. The children up here live on them. Some kids get 3 or 4 bags and they need them daily. There are a lot of diseases and accidents that require blood transfusions and platelet transfussions. Well, I am not sure if I am going to be able to update later. I am having my little computer problems. I will probably be without my computer a couple of days due to upgrading the memory so... I will let you know:)
I will really try to add the pics later in the evening. We have stayed busy today and now we have a meeting with some people that are doing drives and such. They finally get to meet Ms. Katia! Love, Tracy

October 12, 2003 10:40 AM

The night went very well. I put Katia in pullups which seem to do a much better job since the are the right size. Hopefully when she loses some of this puffiness, I can go back to regular diapers:) But the pullups have the Disney Princess Prints so.... Katia loves them!!!
Her CT SCAN results show some sinus infection and they had a better look at the pneumonia which seems to be under control so that is very good!
Hopefully near the end of the week we will start getting results in from the drives and know our plans. They have a rush put on the testing. I know that Katia's story is going to be a positive story and help MANY people around the world!!! No matter where she ends up being treated, she will touch lives and do great!! I really feel that. Myron completed his song and we are trying to figure out how to mass produce them right now so hopefully they will be ready by the end of this week. The song is BEAUTIFUL!!! It turned out so very good. The name is, "Katia's Song" and it just lets you feel the love Myron has for his daughter. When I listen to the song, knowing Katia's caring and loving personality, I could hear her singing this too.
It will be a while before I put it on the page cause I am not sure where we are going to go with the song. We are trying to get it released to the radio. It just really turned out great and it is a great project. Hopefully we can team up with someone to sell them and maybe donate a dollar to one of the research facilities from each CD. I don't know. We want something on going to continue to benefit research and Marrow Drives.
We have decided to continue to push awareness to the need for the Marrow Registry even when Katia DOES have her transplant behind her. This is something that has just wrapped around our hearts and lets us know, we have to be a part of this as long as we have the ability to speak (which for those who know us - know that will be a long long time!)
We have a long road ahead of us, with a lot of unsure days but with the help of God and the encouragment of our friends (that means you!) we know we will get through this and have something very positive to look back on.
Most of you know I try to look at all of this in a positive way each day. Sometimes, that is very hard to do but when I read guestbook, the letters that come with cards, and the emails some of you send me, I just really feel like so much good has already come from this struggle.
I would love for KATIA'S name to become a household word that embodies SUCCESS and HOPE for all of those fighting similar fights. You are helping to make that possible. Thank you for spreading Katia's story to your friends, families, coworkers and even some of you to your local papers. We have learned that cancer can strike ANYBODY at ANYTIME so really it is ALL of our's fight to fight together so that we can find a cure to end cancer but also in the meanwhile to do the small things like encourage, support, and spread the news. God bless you for all you DO. Love, Tracy
PS I will post new pictures some time today. I need to end this now cause Katia keeps coughing and it really is bothering her cause it gags her. She is in BAD need of blood and platelets today. Thank you to the person who donated these bags of blood and platelets we are about to receive. You are saving lives!




******



October 11, 2003 8:00 PM
Well it seems Caringbridge is done with its changes so that went smoothly. Our day has been going well. Katia's eyes are very puffy and she is complaining that her vision is bothering her. She keeps saying she sees spiders or she gets pains in her eyes but then she starts just acting normal again and having fun. I have new pictures for tomorrow that we took tonight of Katia playing. Myron, Sharayah and Tatiana just left here and that was very fun. My sister and one of Katia's cousins came by for a while and we had a friend of ours and his wife visit so today was nice. For all of us. I had about a 3 hour nap so that was awesome. Katia kept anyone coming in the room quiet for mommy and she just watched the Piglet Movie. She loves watching movies especially the Barney, Pooh, Raffi, and Sing-a-longs. Those make her happy and keep her occupied. Someone gave her Flipper and Zeus and Roxanne and she really gets into those movies. She follows the story very well. Katia is an amazing baby. Like I always say, she is my hero. She goes through so much and just smiles at me like, "It's okay, Mommy." She does everything with a great attitude (sometimes she turns into the Incredible Hulk when she is really getting her buttons pushed through some of her biopsies).
The biopsy on the lump of her side seems to be okay. I am so glad to hear that because they seemed worried and when they look worried, I get worried. I am trying to find out the CT SCAN results because Katia's face is so swollen around her eyes. We will probably start radiation on her eyes early in the coming week and I pray that is not too much for her eyes to handle but also that she will be able to go through it without sedation. I don't like the idea of having to sedate her everyday. She is sedated so much already. She always comes out of it fine but I just don't want to overdo it, you know? Right now she is playing with her fingers, her God-given toys!! Thank you God for her 10 fingers and 10 toes. I knew they were there for a lot more when Katia was born. She has always liked her feet and funny socks! Well I am going to cut this short so I can go snuggle before they plug her back into her lines. I love "Katia hugs"!!! They are so much a part of my positive attitude and so are her kisses and her loving eyes. Katia is my heart!! Love, Tracy


October 11, 2003 10:45 AM

Today has started off a little rough with a lot of coughing and gagging and a soaking wet bed that needed to be changed. Katia is peeing well again so hopefully she will drain some of this unwanted fluid that is making her so puffy. Her eyes are bothering her quite a bit and are pretty swollen looking. Today it is more the right eye than the left eye. It seems to go back and forth but the left eye is the worst one overall. I am hoping we will start the radiation by Wednesday or so but some of that depends on Katia's counts which again today have dropped. She has been zero since September 5th!! They have to come up so we can do anything. But the thing is as long as the good cells aren't coming up neither can the bad ones so we are really on hold to find out what is going to come back when she does get counts. So... we wait. Well, I am going to keep this short as I have no idea how Caringbridge will be acting today so these updates will be going on KATIA'S TEMPORARY SITE" also. Please bookmark that if you haven't already. Love, Tracy




October 10, 2003 4:30 PM
Okay, a few things. Remember if you haven't bookmarked Katia's temporary page above, go ahead and do that because sometime tomorrow Caringbridge will be down and could be down for 72 hours so if you want to keep up to date, that will be the only way. I am not sure if this page will be viewable but not able to be updated or if it will be completely blocked out during the change over.
Okay, now onto today's news...
The chest x-ray shows pneumonia which I thought could be possible because she has been this little cough getting worse over the past 2 days. So they put her back on another antibiotic and they will do a CT Scan in the morning to see if she also has a sinus infection. They will also scan her belly, why? I forget why. Pneumonia is bad enough for the normal person but to a person with absolutely no immune system and not a white blood cell to her name, it has to be dealt with immediately. They can just get so sick so quickly. She is still running slight fevers but not needing tylenol to break them. They come and go on their own.
Myron is probably finishing his CD tonight with "Katia's Song" on it and hopefully we will release it on Monday:) I can't wait to hear the finished product as I haven't heard anything but Myron live with his piano. I want to thank Heather for helping with the backup vocals. Thank you, Heather:)
Sharayah and Tatiana are fine and glad it is the weekend, I suppose:)
Hopefully other than the CT Scan tomorrow will be event free.
The totals so far of tested donors is over 800 so we should know some of the results within 10 - 14 days:) It would be great if one matched Katia and each of the others matched someone else. Wouldn't that be just awesome!! What would be even better is a CURE!
Well I have babbled on enough. Remember to bookmark the Temporary Site above:)
Love, Tracy

October 10, 2003 10:18 AM
I couldn't get on and update last night due to some sign on problems with AOL but that is all working now, I think. I changed my access phone number I was using. It takes a lot getting used to dial up again.
Okay on to the update. First off all, Katia did have a good afternoon yesterday. She has still been having fevers and spiked another one during the night so they have her back on her magical antibiotic. She feels decent though but Katia's body feels awful when she even reaches 99.7. That seems to be her breaking point. They have been giving her a little something for depression and anxiety which they also use for nausea but it does seem to wind her down when she gets high strung and makes her pleasantly relaxed. She has been havin some temper tantrums over me asking her to eat or take any medicine and when she does that she starts choking and gagging and with Katia, that is so easy to cause her breathing to be blocked so we need to avoid her temper tantrums. She chokes very easily. The gagging over smelling food has not come to a stop yet. We have no results back yet on anything from yesterday but the marrow looked clear in the preliminaries. I was not going to put that if I updated last night due to what happened last time I said she was clear and then just minutes later I found out she was 93eukemia cells so I would have waited till this morning on that anyway. Katia's big thing right now is coloring and playing with the balloons she receives. Katia has fallen in love with balloons!!!! We inflate them as they start deflating and we can do that for a while so we still have some orginal ones she got on day 8 in here and today is day #46!!! We mailed out all of the "Katia Originals" yesterday that hadn't been mailed yet cause she was "in the mood" to color!!! So, if you hadn't received your yet, it is on the way:)
Sharayah is doing completely better. She says she still feels weird when she breathes but she sounds much better and is back at school. No test results are back yet from the environmental testing they did but she has testing this week and Sharayah is in some very challenging classes and hates to miss school and get behind.
I think that is about it for now:)
I will try to update when I hear any test results. Thank you for coming by:) Love, Tracy and KATIA!




October 9, 2003 4:30 PM
Katia is up right now and coloring pictures for her "Katia Originals". She has some new cool crayons to use so these are turning out awesome!!! Look above for the update on Caringbridge being down for a few days. There is a temporary link that will have Katia's updates on it and a guestbook to sign. Thank you Code Blue for setting this up. It would be a good idea to go ahead and bookmark this link because I don't know if you will be able to view this page during those days.
Katia's Temporary Page
We just came up from having an x-ray done of Katia's chest and belly. I have no idea why this was ordered because nobody said anything to me about it but...
I can't be in on everything, huh?
Love, Tracy

PS See how prayers work? Katia is happy and coloring!!


October 9, 2003 12:30 PM
Katia has just been resting which is great. She needs that. She is still running fevers. Just pray that she will have a good afternoon when her daddy and sisters visit. I haven't taken any pictures lately because the flash is really bothering her eye so that is why these pictures are staying the same. When I get the chance and she is ready, I will share more "Katia smiles" with you:) Love, Tracy

PS This poem was in the guestbook and I wanted to share it here.

PROTECT MY DAUGHTER....

Angel, stay with my daughter
through the night,
wrap her in your
loving wings of white.
Hold her close,
and never let her go.
I ask you to protect her,
because I love her so.
Like you, she's pure of heart,
you see, she will always be
the greatest gift that Heaven
sent me!!!


October 9, 2003 9:50 AM
I am typing this very tired. The throwing up stopped which is just great because that was really beginning to tear at her throat and cause bleeding. However at 4:00 in the morning she woke up crying and saying she had a fever, which she did, of 103.6. That kept up for about 3 hours and then the Tylenol finally did the trick. Of course they drew labs which usually show nothing but we will see. Possibly there is a line infection which would explain a lot. I am thinking the throwing up was just tied to this fever coming on. She is acting like her normal self this morning a little but she is extremely cranky. I asked her if she needed anything and she got screaming mad at me. I do have one cute thing to share. About 8:00 AM (I had fallen back asleep) her nurse comes in to find Katia with her diaper half off. Katia had been awake since 4:00. Anyway, she asked the nurse to hand her a wetwipe cause she was changing her diaper so the nurse did, Katia wiped herself and handed the diaper and wetwipe to the nurse. Hey, what can I say? She is smart AND she doesn't like other people changing her diaper:) I thought that was very cute. I will update later when / if I find out any answers. Oh, her counts are still 0.02 but she did keep her platelet count up overnight so that is great! Love, Tracy


****



October 8, 2003 11:19 PM
What a night! Katia had an okay afternoon, slept for while and then at 7:00 PM she woke up crying and throwing up and the crying and throwing up didn't stop till after 9:00 PM. It was just constant and she hasn't eaten anything all day so it was really hurting her to throw up. I feel so bad for her cause she doesn't understand why I just can't make her better. She has had this weird kind of look in her eye and even now that she asleep, I am still not comfortable because she never did act back to herself before she fell asleep. After the procedures today she came back around and was fine for a couple of hours before she fell asleep for her nap. This evening she wouldn't talk to me at all and she just looked blankly at me and wouldn't really respond to me when I would do something or ask her a question. I am just praying the morning brings back Katia with her pretty smile and her talkative self and giggles. So, pray for a good tomorrow! God bless each of you and thank you for coming by. Over 100 people registered today at the drive. That is all the drives on my list right now but the Kennedy location for Florida Blood Services is an ongoing place. Please don't stop pushing people to sign up because we don't know if we have a match yet and we won't for at least 2 to 3 weeks. Also there are many many people needing marrow matches and organs and just daily blood and platelet supplies. Always remember how it is possible to save lives. That is an ongoing mission for Myron and I is to continue to spread the word for this. Love, Tracy

October 8, 2003 3:36 PM
Just a quick update. We had our procedures all done. No results but they are done and behind us and Katia did very well. Alot of singing and "Eyes open but nobody home" but she did it all without any struggle:) She is still very out of it so I have to stay right with her. I just wanted to update. Love, Tracy

October 8, 2003 11:30 AM
Sorry this update is so late. We have been trying to get some stuff figured out around here today. Katia just had platelets so she should be fine today well now she is lower than ever so we have to get those in her before we can do any procedures. She should have her bone marrow aspirate, lumbar puncture, spinal chemo, and stitches removed from her broviac this afternoon which means we won't have the results until tomorrow now as to whether she is in remission or not. The can give me a preliminary report but for those of you who remember the preliminary report on August 26 said she was still in remission and then 2 hours later we found out she was 93eukemia so we don't ride on prelimary reports anymore. I still get teary eyed and a lump in my throat when I think back to August 26th. That was just a horrible day and our worst fear came true, relapse. I think back to the lady that said our family didn't need to act like we were bothered by cancer anymore cause Katia had been in remission... that cancer was out of our lives. I just think about that all the time because that was just so mean but also so ignorant. The idea of relapse is always in the back of our heads, us parents and kids dealing with cancer. There is never a moment to just relax and think, "Great, we are done with that, let's just move on now." Anyways, that is why I am so involved in getting Katia's story heard because I want people to know what cancer does to a child/ adult and their families. It just changes your whole world. I see almost everything differently now. This may sound dumb but I don't even look at a sunny day the same. A sunny day can bring tears to my eyes, a Hallmark commercial is just too much sometimes to watch and a simple phrase of, "How are you doing today?" just means something totally different than it used to. Oh, the other thing is, "I hope you have a BLAST today!" Well in our cancer world, a BLAST is a cancer cell so we never want to have a BLAST! See how I mean everything changes? I just appreciate so much of you coming by here and not only offering words of encouragement in the guestbook but also your day to day stories. A few of you have shared dreams about meeting Katia when she is older. I hope every night when I go to sleep, I can see a dream like that for real and your dreams give me hope. Sometimes, you come by and just tell me a little about your day, or you just tell me, "Hey I am thinking about you and praying for you." Those mean the world. Of course I always like the ones who talk about Katia's story has made your lives more positive and you see your kids in a different light or your day to day lives differently. Thank you for sharing your lives with us. God bless and pray that today will go better than yesterday and all the results will be good and productive. Love, Tracy



PS Visit Christina's site, she is 100onor but nowhere near out of the woods but that is GREAT news!!! Christina's Site

There is another girl here at the hospital, Olivia. Her webpage is pretty new but maybe you can drop by again to tell her hello and offer her some words of encouragement:)
Olivia's Site







October 7, 2003 3:59 PM
Well just a very very quick update. Katia wasn't able to be sedated for the bone marrow biopsy, lumbar puncture and spinal chemo so we have to do it tomorrow in surgery. She is getting to tough for mild sedation and wiggles way too much and just screams and screams so they don't want to slip and hurt her spine of course. She did have the biopsy on the lump and we will have results in a few days. The site is bleeding and it is taking a couple hours to get that stopped and her oxygen levels keep dropping BUT she is singing and playing of course while I do all the worrying and the nurses are running around. I just wanted to update. I am going to take a quick shower to calm down and then I will try to update later in the evening. I just wanted you to know the marrow biopsy didn't happen. Love, Tracy
PS Visit Christina's site, she is 100onor but nowhere near out of the woods but that is GREAT news!!! Christina's Site

October 7, 2003 9:00 AM

Okay, so the Bucs lost (38 to 35 in overtime) but hey, it was a great great game!!!! I just can't believe it ended the way it did. Yes, Katia watched till the end and then she stayed awake for a while after and stayed awake till around 2AM!! She woke up around 8AM, me around 7AM so we had a decent night. I don't know much of what is going on today. We NEED to find out if Katia's marrow is in remission and if her spinal fluid is staying in remission but today again, no counts so I don't know what the plans are to do. They will do those and the biopsy on the lump when we do get it done. I really think they will try today. As far as the poopy results, negative! BUT they need another sample to release her to make sure the labs are right. I thought that was the last one they needed but it wasn't. So we wait for another poopy again. Today is another big drive at the Hillsborough Community College in Plant City so the registry is continuing to grow!! I will update throughout the day as much as I can as I find out anything. God bless you. Love, Tracy





October 7, 2003 12:16 AM
Well I just talked to Myron and he is headed home from the game after a very busy and successful day. No national news but a lot of people registered today so today was a success! We did see some posters in the crowd which warmed my heart and Katia saw one ladybug (she was busy playing with her ladybug stuffed animals). I am very pleased with all the TampaBay area is doing but then I read Katia's guestbook and I see this has not only gone national but international. So many people in different places are going to register and that is our goal, the registry. I don't know how many people really that Katia's story has touched but I know it has already had to have helped someone or more than one. Thank you so much everyone for all you do in helping me to pass out Katia's story. Not just now but even before Katia relapsed and I am sure it will continue to go out as she WILL have a successful transplant and have a positive story to tell as she gets older. Just as Katia has touched your hearts, know that you have touched our hearts:) God bless you and we will hopefully have a good night sleep. Katia is still watching the BUCS (she likes football) and the score is 28 to 35 so there was a success for the BUCS tonight. They will again win for Katia!!! (Am I safe to say this? There is 1:41 left in the game. Hum, should I update or wait? This is way to close!!! Okay, I may be back. Yeh, well I am back! This game is very tense and down to the wire! Okay, the Colts just got a touchdown so it is 34 to 35 and they have their point after (it's in), 35 to 35... WOW!
Come on BUCS!!!
Okay now you are getting the "Tracy's play by play action"!! This is unbelievable!! Okay we are moving and there is 20 seconds left in the game. Call me dumb, but do they go overtime for a tie? Katia is sitting here making all sorts of noise and she doesn't know why but just the excitement of the game gets her happy.
HOW MANY TIME OUTS CAN THEY TAKE NOW!!!
I am the kind of person to sometimes skip to the back of the book if it gets too stressful. I can't fastforward or flip to the back of the game.
We are trying and now Gramatica has to go to kick, poor guy. I wouldn't want to be in his shoes right now.
He is going for a 62 yard field goal... BLOCKED!!!
Okay, yes they go to overtime so I will have to go till tomorrow and leave the ending for you to know or find out in your morning news but no matter what this was a success for Katia and I hope for the BUCS too:)


PS Pray for all good results tomorrow for Katia. I am sure if they decide to follow through with the biopsy in the morning, we won't know that for a few days but the biopsy we will hopefully know by tomorrow afternoon. PLEASE PRAY HER MARROW IS IN REMISSION! IT MUST BE FOR A TRANSPLANT!! Love, Tracy

October 6, 2003 8:00 PM
As game time approaches, we are praying hearts will be touched and people will register. I am hoping the show of support outside the stadium and on the news and the radio will touch people's hearts and bring them to register to be a marrow donor. I am sure no matter how much support is shown in the stadium tonight we will reach my personal goal of getting 3,000 Tampa Bay people to register. Tampa Bay has been super. Here is a news story link from ABC news.
ABC NEWS STORY October 6, 2003

Katia is taking a pregame nap. I hope we can watch the game together in the hospital with some of the nurses. Myron is there at the game:)

God bless. Love, Tracy

October 6, 2003 4:43 PM
Okay, I said I would probably update a few times today for a few reasons. We are waiting on some results from tests and also all of the media and drive things going on. This time it is neither. We now have another test to run tomorrow. I said earlier that Katia has a new bruise/bump on her abdomen area and now they feel the need to biopsy that bump cause it is confusing and may be another fungus so we will probably get that done tomorrow with the next Bone Marrow Biopsy and Lumbar Puncture to check remission status. So my nerves are very much on end right now. I was asked to step outside to talk (which they never do) but since Katia will scream if I walk out, I just let them talk to me in the room and basically that is what they said that they feel the need to do another biopsy because this is "concerning" so please keep this issue in your prayers and that the biopsy and lumbar puncture will both show remission. She has been off chemo for about 3 weeks I think and we don't want her to relapse again.
Myron is staying VERY busy and getting pretty worn down but at the same time he is seeing so much support being showed by people just wanting to do whatever they can to register on the Marrow Registry. It warms our hearts to see such an outpouring of love. I get that feeling everytime I click to read the guestbook! THANK YOU!! Love, Tracy
PS I am about to add a new photo of Katia's POSTCARDS this far!

October 6, 2003 12:50 PM
Okay another update is due. The problem this morning was a bad reaction to a medicine she had before the MRI. She usually gets anestesia and does fine with that but they gave her another medicine because she seems to be coming down with a cold and they didn't want drainage choking her so... she had a bad reaction to it and now she is clearing up and decently happy again. She has some bumpy bruises on her and they don't know what that is, could be fungal, we are waiting to see the other doctor about that. The MRI results show the left eye optic nerve looks normal size again and not much going on there but the right eye (original tumor site) is enlarging so they need to do the radiation sooner. We have been on hold due to Katia's counts not coming up and not knowing whether we will be able to find a match and have transplant here or no match and have to do the newer procedure at St. Jude. I guess the place that will ultimately have her for whatever transplant is the one that wants to do the radiation to the brain and eye. So this morning has been very busy and I assume we will be finding out more throughout the day about plans.

Sharayah is doing about the same and I just called the Health Department to update their records with her because the news is saying it is "assumed the problem is being caused because of construction during the summer and exposure to polyurethane". That is because the original group of girls that became ill are all cheerleaders or band members and they had practice camps during the summer when the construction and repairs were going on in the gym. HOWEVER Sharayah was not there in the summer and has no classes in or near the gym so that wouldn't make since. The health department asked a lot of questions and are updating their records and will get back with me. Too much is going on right now in our family and I feel bad that I can't be with both daughters (well all 3 even though Tatiana is not sick, she says she really misses me at home). This is a very hard strain on our family in a lot of ways and we are now running on complete adreniline. I am sorry for all the spelling mistakes but I am just in a rush to finish this while I have a break. Check back later for more updates. Love, Tracy

October 6, 2003 10:30 AM
We are off to a rough start here this morning. We got awakened at 6:30 to go get an MRI but we didn't have the MRI until about 9:00 AM so we spent time watching TV in the little room across from MRI. Then she had her MRI which took about an hour and woke up in a very bad mood with her nose and mouth really hurting and itching so we have had nothing but crying and kicking and screaming. Now that is calming down:) so I thought I would update. Myron is at the NBC studio about to go on the air and Katia is watching for daddy! This is going to be a busy day and my personal goal is that 2000 more people will register just today. I am praying and praying. Katia's eyes are really bothering her more and more now so I am eager to get the MRI results and find out why. Her vision is beginning to mess up on and off through the day. Things get blurry or small or "flashy" to her. Well please pray we get some answers today and that Katia will have a good day. Please be praying that "Katia's match" will be walking through the door! Thank you for checking on us and make sure you are watching the game. I hope there are thousands of "Katia Posters" out there and that ABC will make a National announcement to go register for the Marrow Donor Program. Love, Tracy




October 5, 2003 7:20 PM
Katia ate one piece of bread with butter and 4 ounces of apple juice!!!! I am so happy with her. She is sleeping right now. No fevers and happy. It sounds like the drive today at Tara's Roti Shop went great with alot of people volunteering with signs and helping out. Thank you Tara's Roti Shop!!! This is a Carribean Food Restaraunt. Tomorrow is a big day. Myron will be on the NBC Daytime show at 10:00 AM which is a live show. Then I think he has an appointment with Sharayah, that may be Tuesday. He has a few radio interviews and then the game tomorrow night so make sure you watch ABC the Bucs vs Colts game. The Dodge Dealership by the Stadium is also having a drive and from what I understand if you register there they are giving out posters for you to hold at the game, "Katia Posters". I think they may be giving them out even to people not registering depending on how many they print up and the early turn outs for the marrow drive. I am so tired right now but I need to get something to eat. I am so so so tired of hospital food. Myron usually brings me dinner which is like heaven!! A home-cooked meal! But tonight, he may not come by with Sharayah being sick and so much going on tomorrow plus Katia is asleep. Thank you so much Tampa Bay. Thank you so much to all of the drives going on across the US. I have gotten some flyers that people are printing up to hold marrow drives in their area. I even got a leaflet from Italy that is being passed out asking for prayers for Katia. I know of people in Germany, New Zealand, Honduras, Brazil, Canada, Australia and a few more places I am sure I am not thinking of right now that people are having prayer circles for Katia. God bless you. "Lord please help researches to find a cure for all of these blood diseases and cancer. Please let it be in Katia's lifetime. Please let all of these drives find a lot of matches for people waiting for transplants. Thank you for everything you are doing to help Katia have good days and fun times and days without pain. In Jesus name, Amen."

Love, Tracy

October 5, 2003 3:00 PM
Today is going okay for Katia. She really really needed blood today which she is getting right now. Hopefully that will help her to feel better. Don't get me wrong, she is in a great mood but she keeps getting headaches when she gets up and she gets shaky. So, that should be better after getting blood. She is not running a fever right now. She just keeps getting close to fevers and then coming back down. To let you know what I mean, Normal is 37.0 but Katia's normal is 35.7 - 36.3 (all of us are different) but today hers is staying between 36.7 - 37.6. That is why we are think she is headed for a fever and her heart rate is fast which usually for Katia means a fever. So, they have changed some of her medicines around. She still isn't eating. I haven't brought that up for a few days. She did have a little bit of rice for two days once during each day. Yesterday she had about 5 pretzels and maybe 6 ounces of water. Today she has had about 10 chips and maybe 1 ounce of water so... it is still a problem for her to eat for some reason. She is chipper and happy though 90f the time and being very sweet with her doctor and nurses.
Myron is very busy today with drives and interviews so now he is going to do the rest of the interviews at the drive he is going to right now so that makes it easier than going different places. There is another drive going on that is new at the Dodge Center near Tampa Stadium tomorrow and from what I understand they will be handing out posters there too for people to take to the game. I just want to thank everyone involved in all of this and also for those of you who come by to wish Katia well in the guestbook. Thank you for the cards, postcards, and HAPPY packages which really do the trick:) The new picture is Katia in 2 ladybug costumes she received so we combined them:) She kept saying that she was Ms. Ladybug and Katia was in her belly then Katia would come back when we took the costume off. She is dressing up a lot right now. I just wish Katia could meet this cute little ladybug that keeps visiting her room but Katia keeps disappearing? Love, Tracy

October 5, 2003 9:40 AM
Day 41 in the hospital

Just a quick update. Katia is beginning a fever here today and we aren't too sure why. She shouldn't have anything cause she hasn't gone anywhere. We have had a very limited number of visitors so...
She has had no counts now for 31 days, I mean she is ZERO!! That should have been coming up by now but it isn't.
She is due to have her MRI tomorrow and we hope she will get some counts so we can check her bone marrow for remission. We aren't sure if her marrow is in remission yet.
I am having a lot of problems with my computer right now. I have a Toshiba laptop and I love my laptop!! I think it is just the lack of memory.
I really miss checking on other sites but as soon as I start going to pages to check, I get knocked off so I am doing the updates in the notepad and then signing on to just paste it in the journal. BUMMER!
Well tomorrow is the big game. There is a drive going on today at Tara's Roti Shop and I pray they have a really good turn out. The Outback Steakhouses had a good turn out. God bless the Bay Area!!! Myron is headed to do a TV interview right now on Fox's Pregame show with Chip, I forget the name of the show. Then I hope he will be able to run out to the Drive going on. Sharayah is doing the same today just making more noise when she breathes. Tatiana is doing great compared to everyone else. Hopefully she can stay away from getting sick. Myron and I are fine just getting worn down for the most part. Well, thank you for coming by and checking on us:) I have a new picture I want to add on to the page but it won't let me right now so I will do it later in the day. Love, Tracy




October 4, 2003 9:20 PM

Not much to really update today (since I waited so long for the first update). Sharayah does sound bad but from what she says, I guess it is more irritating than painful. She has to concentrate to breathe. She is doing her medicines and breathing machine so I guess we won't find out anything more until Monday. If she gets critical then she is to go to the ER but other than that, wait till Monday.
Tomorrow, Myron will be on some PreGame show on Fox, I think that is a local show. On Monday he will be appearing on NBC's Daytime show (that is a live show) so I am really praying the word is spreading, I really think it is going to find a match for quite a few people. I just have a good feeling in my heart.
Other than that, I think I have caught everyone up on today.
"Lord, thank you so much for giving Katia a wonderful fun afternoon."
Her early afternoon didn't go too well cause her bottom is really hurting her a lot but she finally had a POOPY so hopefully those tests show a negative!!!! That would mean we could walk the hallways:) That would just be wonderful. I am so happy for a POOPY, we have been here too long. Today is day #40. That is like the Noah's Ark rainy days, imagine?
Okay, I have babbled enough:)
Love, Tracy

October 4, 2003 3:35 PM
I know I am updating late today. I have been trying to sign on and update a few times but my computer keeps messing up. I need to add more memory to this really bad. I am going to just paste this message in and see if it will let me be on long enough to update.
So, let me see. What is going on today? Well Katia is up and out of bed right now. She has been unplugged since 11:00 AM but her booty was hurting so she didn't want to walk around and play until the doctor looked at her. She has this problem all the time. Right now she is playing "Ladybug" and she says "Katia" is out of the room right now. She is dressed up as a ladybug. She has received a few very cute costumes for Halloween but we are using one today so she can have some "Ladybug Fun"!! All the nurses keep coming in and looking at her. She is plugged into the IV for 12 hours a day now so that is a nice break. I try to do most of that at night. She can't leave her room but the fact she can roam around is like AWESOME to her!!! She really gets in such a better mood and we hope the movement will help her use the bathroom. I am not sure how many days it has been since she went but too many days is going by again so we are increasing her laxatives. Well Katia wants me to play so what Katia wants (or "Ladybug" wants) that is what Mommy Ladybug will do!!! God bless each of you and pray really hard that alot of people come to these ongoing drives and a lot of matches will be found (one being for Ms. Ladybug here). Love, Tracy

PS I almost forgot (I feel so bad) Sharayah sounds a lot worse but is not feeling as bad. She is on some steroids, antibiotics, cough medicine and her breathing machine. There are still no answers and for the most part they are just teaching these kids to breathe a different way? Most of the kids are getting some relief but they aren't improving. This is more confusing than worrisome at this point. I hope some answers will be found. Sharayah can't come here till we have some answers. Tatiana and Myron are on their way here so that will make Katia (and me) very very happy!!!! I just wait for the day we are all at home eating dinner around the table together. We always did that and we miss that very very very very much!!!! Love, Tracy






October 3, 2003 11:21 PM
Yes, it is very late but I just had to come update and say thank you to everyone who stops by and checks on Katia on a regular basis and to those of you who are responding to TV or Newspaper ads. Thank you for taking the time to seek out further information. I just know a LOT of people will find matches from all these drives!!! Love, Tracy
PS Katia has BEEN asleep for about 2 hours, so I am going to sleep!

October 3, 2003 5:20 PM
Just a small update. Today has been a busy but good kind of busy day. A lot of emails and phone calls of people wanting the "Marrow Drives" information. We have gotten a great response from the Tribune article and also from a lot of radio stations broadcasting information about the drives going on. I pray this brings up the National Marrow Registry by 1,000s of people!!! Katia needed platelets today which she got. She has been needing those about every 2 days and blood about once a week right now which she will probably need tomorrow. She was free today for quite some time but is out of energy pretty quickly.

There is some Mystery Illness going around Sharayah's highschool with breathing problems, coughing "Noisy Breathing" which is the name for this illness right now.
Well, today she was sent home and is right now at the doctor having breathing problems and raspy sounding breathing. It is not coming from her chest but from her throat. The cases that have been reported are more swollen vocal chords that start cutting off breathing and causing chest discomfort, noisy breathing in and out and some esophagus problems. One of the girls needed some type of surgery. I don't know but I wish they would find out what the problem is. They don't know much information to give us parents. Mystery Illness
Please pray this is not found to be contagious for the community's sake as well as Katia's sake. Love, Tracy

October 3, 2003 9:00 AM

Pictures today are looking back at "Katia Moments"

Good morning! Katia is in the Tampa Tribune today, a very nice article and hopefully that will move mountains. I am so excited for a few reasons. We are getting a lot of good feedback about this and I just wish I could know how the much the registry is going and who finds matches due to all of this. I know some matches for people have to be coming through those drive doors and hopefully one of those people becomes Katia's match! I am not going to update long here. I just wanted to share that but another bit of good news is we had a very good night of sleep. Katia did finally wind down and fall asleep shortly after midnight and although I heard her a few times in the night, I didn't get up till right before 8:00 this morning so that is enough for me:) I am going to put the link to the article above along with some other links she has been in. Love, Tracy




October 2, 2003 11:00 PM
This will be quick, I am so tired right now I can barely keep my eyes open. What a busy busy day but good busy. The drives are going very well. Myron attended one at Williams Middle School. They had made cards for Katia and a student choir even sang a song for Myron which he said was just breath taking they did such a great job!!! My little nephew Casey goes there so he has told everyone about Katia and has been having them make cards, collect postcards for her "Trip Around the World" and just has done so much for little Katia. He is 12 years old and he has such a great heart! We love you Casey:)
Katia had a good afternoon here. She had quite a few people come to visit and she really played so nice. A photographer came by for the Tampa Tribune (there should be something in the paper tomorrow) and she just put on a modeling show for him. I had everyone "held captive" here while we waited for Myron to arrive so of course I showed them pictures, let them listen to Katia's songs and just get a full "Katia dose" for the day!! It was a very nice visit. This morning we had a visit from Anna Maria from the Leukemia and Lymphoma Society and she brought by Katia's beautiful "LIght the Night" banner. It is beautiful with a big ladybug on it. She took it back so all the staff can sign the banner. They have done so much for the fight against cancer but also they have been so personally involved with Katia and their friendship means the world. Katia is an honorary member of the Team in Training and she is so proud of that!! She loves her little medal and big Team in Training button! Thank you for letting her participate:)
I think that is about it. I know I am very tired and Katia is NOT so I hope she will get tired and have a good night sleep.
Please pray that our perfect match comes to register. I have the perfect way to update the page the day we find a donor!!!
Also, I am finding out Caringbridge will be down on October 11th from 3pm to 6pm. They are updating their server. It may be 72 hours from then to be able to update. HOWEVER, I will figure out a link you can visit for updates and post that link in the next couple of days. I will miss the guestbook but it may be the guestbook will be able to be signed. I will find out more and let you know. Thank you so much for dropping by and reading this and giving me the opportunity to share Katia's story as she battles this Leukemia again. This time, we will win! Love, Tracy

October 2, 2003 9:00 AM
Just wanted to update this morning (so you don't worry). I am still in awe of all the drives going on and I just pray a match is found. I wanted to clarify something. If a match is found anywhere from the registry, it does help us here. The match is brought to us to do the transplant here. The only reason we would have to leave if is no match comes in on the registry. The registry is national and international so... no matter where a person lives, it helps. There is an active search going on so if something pops up on the registry today that matches Katia, it is activated for Katia. I hope that clarifies a lot of questions. And, blood type doesn't matter when it comes to Bone Marrow Transplants. Katia is 0 right now but if her donor is A , AB, whatever, that is what she will then become. It is really neat how that can happen. I always look at God's wonders and just think how neat it is that Katia was in me for 9 months, I am A and my blood was nurturing her and helping her grow but when she was born, she was 0 like her daddy:) Isn't that just a miracle how things work? Well, I have not had any coffee yet. I wake up and check this first. Katia is still asleep. We had an okay night. She woke up about 3 times calling me but I fell back asleep after getting up each time. I am used to that so the night was not at all bad. I know it could be worse and I know these are our good days right now. Whenever we do go to transplant, whichever transplant she gets, the nights will be very long and the days just exausting. I watch other families and all the sicknesses the children go through, the endless nights and the rollercoaster days. I am appreciating this time right now that Katia is feeling well. Love, Tracy





LONG BUT GOOD UPDATE AND VERY INFORMATIVE! INCLUDES ALL DRIVE INFORMATION!

October 1, 2003 8:45 PM
Okay, I didn't want to update too much earlier today because a lot was going on with the drives for Katia and it looked like we were going to have to back off on the number of people BUT...
Myron had a meeting today with Florida Blood Services and between them, our dear friend Tony, and Myron they got a lot of great things worked out so here is the schedule of events.
Tomorrow, Thursday there will be a drive for her at Williams Middle School and some media focus on the kids there making cards for Katia.

Tomorrow sometime they will be having the Bucs Team coming on saying they are promoting Katia drives also. They will be asking people to make banners to bring to the game as Get Well messages and Well Wishes for Katia. I will get into more about the game later.

Also, there will be an open call for people wanting to donate marrow at the Florida Blood Services Building on Kennedy Blvd. They would appreciate you calling ahead to 1-800-68-BLOOD.

The address is
4041 West Kennedy Blvd.
Tampa, Florida 33609
(Between Lois Ave & S. Dale Mabry)
This location will be taking people for the meanwhile and there will be no charge for anyone wanting to sign up for the marrow registry. Just let them know you are there for Katia. They should have some pink paper for you to fill out for "Katia's Gift of Life Donor Club".They would like you to call in advance but you can also just drop by there.

On Friday Outback Steak House in Brandenton and Sarasota are holding drives. Thank you Outback Steakhouse!

On Sunday, there are plans for the Band "Democracy" to put on a performance and hold a Bone Marrow Drive at the Tara Roti Shop on Bush Boulevard and Nebraska. Thank you to all of those involved in putting this together. There will be refreshments there. That is definitely open to walk-ins and they will be having signs and people walking on the street with signs to advertise and get people to come sign up for the registry. This will be going on from 3PM - 6 PM.

On Monday will be the Bucs vs Colts game at Tampa Stadium. There will be Florida Blood Services Blood Mobiles out there for Blood and Marrow drives from before the game till after the game. They are planning to get out there when during the Tailgating parties. Thank you Florida Blood Services for putting this together:)
Then there will be a mention during the game for those who want to donate and sign up for the registry after the game.
That will be a busy busy day and I am sure many people will register that day!! Myron will probably be interviewed up in one of the booths (that is still in the planning stage).
Okay, there is more!! The Florida Blood Services Kennedy location will be open during all of these days for people to come to and sign up for the registry.
*Tuesday, HCC (Hillsborough Community College) in Plant City (HCC-PC is right off of I-4 at Park St in Plant City) will be holding a drive which will also be open to the public. The students and staff of the school have been working very hard to set up this drive. Thank you HCC!!

THEN on Wednesday there will be a BIG KATIA DRIVE DAY at the Kennedy location for Florida Blood Services from 9:00 AM - 8:00 PM. There will be food and drinks out there and maybe a band but there will definitely be media coverage of this and I am so thankful they are dedicated this day and facility trying to find Katia a match.
No matter what happens with all of this (I pray Katia finds a match) but someone will definitely find a match out of all of this, maybe a few people. Wouldn't that be GREAT!!! There are many people out there in need of matches and we have really been trying to draw attention to that all this time Katia was in remission. I am sad that it has come down to Katia needing a match but I am praying this will help the registry.
Okay, Katia is unhooked from her IV pole right now and we want to play and enjoy this good mood and all the hopes we are feeling right now.
To our Bone Marrow Match Person: Please be at one of these drives and save Little Ms. Katia's life! We love you! Love, The Solomon Family

PS Thank you Tony for all you are doing to help push these drives along. Thank you Florida Blood Services for putting all of your combined efforts into this. Thank you Tampa Bay for participating. Thank you Tampa Bay Buccaneers (the Superbowl the Bucs won last year was on Katia's 3rd Birthday!) and Thank you to everyone who reads this message just for coming by:) Love, Tracy

October 1, 2003 5:10 PM

I am trying to stay very positive here:) It is hard though. We are on day #36 in the hospital and day #31 in isolation. Katia is doing better than me at not leaving the room. I do get out to go get my coffee and run down to the cafeteria. I have gone home twice for a few hours. It just breaks my heart that I can't get HER out of the room. We are waiting for poopies to send off for more testing to see if she is still positive and contagious. I certainly don't want to put harm in the way of any other patients. Still no match has been found and everyday that goes by just is harder to handle. I know the doctors are just kind of standing by to see what happens with these drives before they make a decision. Some people think we just don't want to go to St. Jude. Of course I do want to stay close to home for the sake of our family. We would be looking at being gone (and Myron out of work) for about 6 months. That is a long time and a lot for us to financially figure out. That would be like pulling a rabbit from a hat. BUT aside from all of that. The most important thing is that the procedure there would be a lot more risky than the type of transplant we would hope for here. It would take a lot longer to engraft which means a lot longer with no counts and the worry of major organ damage. It would be months of isolation and just a lot of the unknowns because the procedure is so new. It would be hard for us to be able to talk to others that have gone through this. I have kept up with quite a few people that have had more common types of bone marrow transplants and they are scary enough! There are a few patients here with their bone marrow transplants just behind them and I watch all the things they face each day and it is just so scary. I wish somehow there was just a way to know who would match Katia out there and just go up and ask them, "Can we get you to do a Marrow donation for our baby?" I am getting to the point I ask everyone I run into if they are on the registry. We want to make T-shirts with Katia on them with some type of a message to get people to ask us about her story. It is horrible when as a parent, we feel like our hands are almost tied on this. That is why I come here to Caringbridge. I know that a lot of people come by here, read her story, pray for her and pass her story on. I know that so many people have reached out and sent Katia a box of goodies, balloons, cards, postcards, and etc. It is just amazing to me the amount of love coming to Katia. God bless each of you, tremendously:)
Love, Tracy

October 1, 2003 8:40 AM
Good morning!! Yes, good morning!! I actually slept through the whole night from like Midnight-8AM. That was just awesome!!
Katia is still alseep so I thought I would update here real quick and since I am just getting up and I updated right before I fell asleep, the only thing I have to update is the fact I slept! But I know that is an answer to a lot of your prayers:) I did just check the guestbook and Katia will be so excited to see that Mickey and friends said hello to her:) WOW!!! That is unbelievable and she will just be all smiles (I try to read those in the Disney Voices!) She has gotten a few letters from some of the characters and she really gets a kick out of those! I have figured I will decorate with the postcards during transplant and someone else emailed me the idea of putting a lot in photo albums! That is a great idea, it will be like a big vacation book (or a few vacation books) and they can be sterile so she can hold the book in her bed!! Awesome idea! We are having fun right now with coloring and making pictures for the "Katia originals" and also for the doctors and nurses. I love to see Katia color and explain to me what she is coloring. That seems so "typical 3 year old!"
Myron brought me the video of the newscast they taped here at the hospital and Katia looked adorable and happy. I am sure people will respond to that newscast! I am going to update pics this morning too so keep an eye out for the new ones. I was going to do it last night but I couldn't concentrate since I was so worn down. Thank you so much for checking in on us and thank you so much for spreading the news about Katia to your friends and families all over the world. There have been a few people to actually make prayer cards and leaflets and pass them out to others leading people to the website, asking people for prayers and making others aware of these childhood diseases. God bless you. Please remember we are not alone in this hospital and there are hospitals of this sort all over the world and the sad news is we run short of beds a lot. I wish there were no more newly diagnosed patients and there were a cure to send us and everyone else home!! When you watch the telethons, they are so real. Now they have just become way too real. God, please allow someone to discover a cure but for now please find little Katia her match. Love, Tracy



***




September 30, 2003 11:32 PM

I AM SO TIRED RIGHT NOW I DON'T EVEN THINK I WILL UPDATE UNTIL TOMORROW. I AM SEEING DOUBLE BASICALLY. MYRON CAME ALL THE WAY OVER HERE FOR ABOUT AN HOUR SO HE COULD SEE US AND TELL US HOW THE DRIVE WENT TODAY. A LITTLE OVER 100 PEOPLE REGISTERED. HE HAS SO MANY SWEET STORIES TO TELL. ONE OF THE FAMILIES ACTUALLY HAVE A CHILD HERE BUT THEIR CHILD HAS A PERFECT SIBBLING MATCH. THEY HEARD ABOUT KATIA ON THE NEWS AND DIDN'T EVEN REALIZE SHE WAS IN THIS HOSPITAL UNTIL A NURSE TOLD THEM LAST NIGHT! ANOTHER LADY WITH A HUGE HUGE FEAR OF NEEDLES CRIED THROUGH THE WHOLE ORDEAL BUT SAID SHE JUST HAD TO COME DO HER PART. MYRON SAID SHE HAD HUGE TEARS AND WHEN SHE WAS DONE EVERYONE CHEERED FOR HER:) JUST SUCH SWEET AND OUTPOURING LOVE!!! KATIA IS TIRED BUT PRETTY RESTLESS RIGHT NOW. I THINK WE WILL HAVE A GOOD NIGHT:)
LOVE, TRACY

September 30, 2003 5:30 PM
Very quick update. Katia did great in the filming today for UNIVISION and that should be on tonight, if not, tomorrow. Univision is Spanish TV but they are the first ones to have footage of her at the hospital. She did very well with the camera guy:) I can't see it. We don't have Univision here at the hospital so Myron is going to tape it for me:)
Don't forget Monday night football!! They will be running advertisements for people to make banners for Monday's game. I am so excited to see it on TV! Wow Tampa Bay is really coming together for this!!!
Katia is getting platelets right now and coughing a lot so I am keeping my eye on her. Her gums started bleeding today so she needed platelets.
Love, Tracy

UPDATE ABOUT MARROW DRIVES...
September 30, 2003 1:50 PM
I just found out there is going to be a mention of Katia's search for a marrow donor and a lot of big posters and get well wishes to Katia on Monday nights game Bucs vs Colts.
Myron will be there in one of the booths to be interviewed!! Katia's birthday this year in January was on Superbowl Sunday when the Bucs won the superbowl so she thinks they are HER team. I guess now that is more true than ever. If you get a chance to watch the game, look for the mentions. They will be preparing Tampa for the event asking people to make large signs for Katia. I guess they are going to be doing that on the news stories these coming days. Myron says quite a few people are turning out at today's drive at USF. The building is kind of hard to locate on campus so hopefully those going will be able to find the building and register. God bless Tampa Bay. Love, Tracy

PS For those of you not in the Tampa Bay area, I think the game should be played everywhere so keep an eye out and I hope you can see the coverage. I am so excited about this!!!!

PSS By the way, I forgot to add earlier in the morning update... Katia had her blessed thumb in her mouth. I about fell over. I can't believe she would put that back in her mouth. Anyway, if it is a problem, then we will have to wrap it up again. We cannot let that happen again to her thumb! Also, she is starting to eat some bread and butter. She eats about 1/2 the piece of bread two times a day right now but we are headed in the right direction. She will be getting another bone marrow aspiration done to check if her marrow is in remission probably mid next week as soon as her counts rise enough. Still no word on anything else. AND the thumb biopsy showed nothing to be concerned about, it was just infected.
I think that is all I know right now. Love, Tracy


September 30, 2003 9:54 AM
I can't believe it is already the end of September! We have now been in here 35 days and for 30 of them, we have been on isolation. It has gone much smoother than I thought it would and I have to definitely thank "Mail Time" for that. I would have figured Katia would have been climbing the walls by now wanting out of here but she is staying occupied. My story to her as to why she can't go out is that the halls are really dirty and they have to clean them. I can't believe that has worked this long! (The halls aren't dirty, they are quite clean!)
Well last night was a long night,long long night! Neither of us got much rest. Katia was very restless and kept waking up and calling me for all types of different reasons. I just kept looking at the clock and realizing only 30 minutes or so had passed since the last time we were up. I think she was basically awake from about 11PM - 4AM and I would just doze on and off. She is not in the greatest of moods today (I know why) and I am having to rely on coffee right now to keep me going. She is going to be on the news tonight and they are supposed to come film her here this afternoon. I am praying she will be in a good mood (hopefully she will take a catnap this morning some) and the filming will go smoothly. She doesn't really like the lights they set up to film so I am trying to ease her into it today by keeping more lights on in the room. I am trying to set up the room to make it more cheerful looking. I am glad we have been hanging up the cards and pictures around the room. I think hospitals for kids should be decorated in cartoon characters and cheerful paint on the walls. Katia does light up the room quite a bit herself!!! I love it when she laughs. She has this belly laugh that is just so cute! Well, Katia wants me to play with her and her dolls. I have a hard time remembering their names (dolls should have name tags) so she finds it funny to correct me when I call them the wrong name. There is another drive going on for Katia today so pray that perfect match walks through the doors. Love, Tracy



September 29, 2003 7:30 PM
When I am done here, I have new photos to share. You have to see the one of Katia with the balloon. It will be in the photo album:)
The one at the top is Katia and I in our "Yellow Belle (from Beauty and the Beast) Gowns". This is what the nurses and doctors have to keep putting on when they come in so we decided to all dress up and take pictures. Katia calls them "The yellow people" when they come in the room!
Today has been good. She was unhooked from the IV pole for about 3 hours so that was nice. She likes to walk around the room. Her uncle is here visiting from Honduras right now so he came and spent a couple of hours with daddy:) They played around and mommy got to go eat dinner (yummmmmm). Katia's thumb is looking so much better. Post card count (drum roles)

186

Can you believe it!!!!! Katia loves going through them all. We are waiting to put them on posters until we find out if we are staying at the hospital or not. WE REALLY WANT TO STAY HERE! but, if not than we will decorate wherever we go. There is another big drive for Katia tomorrow so I am praying something turns up. I know they have some results from the search they did Friday but I haven't heard yet. Let's see what else. The TV crew from Univision is coming to the hospital tomorrow to film her some in her room. Myron will be at a Marrow Drive so they will go interview him there (the channel is a spanish channel) and then they will come get the footage here to edit in. I think it should come on the evening news. They are still urging people via radio to go to these drives and from what I understand a lot of people are stepping in to help promote these drives. All I can say is THANK YOU! THANK YOU SO MUCH!!! Well, Myron just left here and Katia is now asleep so I am going to try to sneak out to get a shower and try to go to sleep earlier tonight than last night! I am so tired and I keep getting headaches. I need to get some serious shuteye:) I require beauty sleep. Katia is always adorable!!! I have to go kiss her, she is smiling on and off as I type like she knows what I am typing. She had a good mail day and I thank each of you for that. I am not getting to all the postcard email addresses but please know we are getting them and we appreciate them so much. I try to let people know when their packages arrive. I know I would worry not to know if something was received. Love, Tracy

September 29, 2003 1:11 PM
Sorry to be updating so late. Busy busy morning but for the good. Katia is feeling quite well and we are getting a lot of feedback from some of the news coverage. Some results are coming back for some lab tests! Her thumb looks great. It was a big scab and now the scab came off to a "beautiful new thumb" as she calls it and she promises that she won't suck her thumb ever again! I hope not because that was very bad. Also the stool samples came back negative but they need 3 negatives to release her from her room so we are waiting for some poopies!!! Come on poopies!! Let's see what else, a lot of people are showing up to the marrow drives and we are so very thankful for that. There is another big drive tomorrow at University of South Florida in the Phyllis Marshal building from 11AM-4PM. If you need more info, call Florida Blood Services at 1-800-68-BLOOD. Blood type doesn't matter for those of you who are asking. You do need to show up with a form of identification and let them know you are there for Katia. There is a special paper to fill out. We are praying so hard something is found so we can stay here. Please continue your prayers. We do believe prayers is what has gotten us this far with Katia and I KNOW for a fact prayers is what gives me the strength to get through each day and our family the strength to go through these struggles and still find smiles and laughter each day. God has blessed us with so many people praying and showing Katia such an outpouring of love with cards and gifts and the postcards:) Today was a great mail day. I think mainly because they didn't deliver her mail on Saturday so it was two days worth:) She had fun though. She is wiped out right now from so much fun. Her counts were going up but today they dropped back down again so hopefully she stays away from getting sick again. Her eyes still bother but only on and off during the day and when they hurt sometimes wearing her sunglasses is enough but other times she goes into hiding under her blanket or puts her hand to cover her eyes. I was watching her sleep last night and she was smiling on and off. Thank you God for giving her sweet dreams last night! Oh, she also ate a whole piece of bread yesterday and a few gummy bears!! Awesome job! This morning she had half a piece of bread with some butter. AND she is off of the medicine she takes by mouth 4 times a day. She hates that medicine but I always tell her it is to help her butt to get better and since her butt bothers her so much, she takes the medicine! But she is off of it for now. YIPEE! I feel so bad having to give it to her. She cries but she does take it. I think that is all for now. I will update pictures probably tonight. I have some cute ones to put from yesterday. Today she hasn't been too happy with the flash and since we can't have the lights on in the room (bothers her eyes) I can't really take pictures. But hopefully that will improve and not worsen. We are still waiting to do the MRI of her eyes to see what is going on and also her brain to see what the lesion is doing. Love, Tracy



September 28, 2003 10:45 PM
First I want to say thankyou for everyone who is participating in these drives. Many people are helping to organize the drives, volunteer at the drives or signing up for the registry. It is just amazing to me and I know someone's life is going to be saved, a lot of lives. As a cancer mom, I of course want my baby cured. I also see many families going through fighting cancer and needing matches. Please always pass the word on to your friends and families. I know plenty of highschool kids have been interested but are not yet old enough. If you are 15 now, you will be old enough in a couple years and I pray then, you will go register. I never ever thought I would have a child facing this disease but I do. I know it is a shame but I know that each day more children are diagnosed and their lives and the lives of their families are sent into turmoil. This effects every aspect of our lives. Nothing is the same or will ever be the same again. Even during the months that Katia was in remission and we were enjoying seeing her running around and playing, it was always in the back of our mind, the "R" word, relapse. Plus during that time many of our friends relapsed or passed away. Our whole lives are centered around cancer, saving our daughter and helping to find a cure to help all who have to face this battle. I am a very strong person but I am a very compassionate person. This fight has definitely changed my life. I look at other people's children even in a whole new way. I just pray for their health. I don't know them but I pray they stay healthy and have a great fun life. I pray the worse thing they have to face is their childhood immunizations. Please continue to keep our family in your prayers but then say a prayer for everyone in the world. So many different people have cancer but they are all someone's spouse, son, daughter, aunt, uncle, mom, dad, cousin, friend, etc. Nobody should have to face this ever in their lives. Nobody should ever have to watch a family member go through this. I thank God every night and throughout my day for His grace, my family and friends and for each and every one of you who have become a part of my life through this page. God bless you for caring enough just to say you care:) God bless you. Thankyou so much for the cards and gifts you are sending. Thank you so much for the postcards. Thank you so much for the balloons. Thank you so much for letting me know you are praying. Thank you so much for letting me know you check a few times each day. Thank you so much for passing Katia's name, website and mailing address along to your friends and family. Katia loves the cards and gifts and balloons and postcards and they make her happy, very happy! I like to see her be the 3 year old she is opening packages and cards. When she gets a letter, she tells me to read it to her. She really has a great heart!! Katia is going to change the way cancer is looked at somehow. I know she has a huge responsibility in this life. God has given her a divine plan. She has wisdom in her eyes and compassion in her heart but yet she is THREE years old and her smile could set off fireworks!!! God bless each of you. Love, Tracy

September 28, 2003 9:55 AM

Katia woke up this morning screaming about her eyes and the lights again but she is doing better now. I always worry about that because we really don't know how her eyes are being affected and she is too young to really explain things to us. Other than that she had a good evening, slept good and is doing okay right now. She has eaten a couple bites of bread with butter and some small pieces of grapes:) That is good. I really wish she would eat enough that she could be taken off the TPN AND LIPIDS (those are nutrional supplements fed through her broviac).
Last night she ended up having her story on a few news channels. CBS (Link to News Story video), ABC, FOX and Bay News 9 en espanol. This morning she is in the St. Pete Times section 3B. Here is a link to the article. The pictures aren't in the online edition.Katia in the St. Pete Times
It would be so great to find a match through all of this or even to know someone finds a match that is in a similiar situation. The people participating in becoming donors now can join something called "KATIA'S LADYBUG GIFT OF LIFE DONOR CLUB". There is a paper you fill out which is a way of sending Katia a message. Yesterday it was really nice to read through the messages from those donors that registered at the Tampa Convention Center. Our prayer request right now is that the Transplant Coordinator will walk in our room and say, "We found Katia a perfect match and everything is a go to have her transplant right here." That is our wish. BUT our main goal is to do whatever it takes to just give Katia another chance at life. If we have to leave Florida than I am sure God will provide a way for things to work out. God can and has worked many miracles and it is our prayer that Katia will be an adult talking about the miracle of life she received when she was 3 years old:) Love, Tracy



September 27, 2003 9:56 PM
Well we had a very nice afternoon and evening. Katia has been in a very good mood and full of energy. She is being sweet to everyone, coloring pictures, eating a tiny bit (but that is better than nothing) and playing with her kitchen set. Daddy and sisters spent the day at the Tampa Convention Center for a Marrow Drive and quite a few people turned out and registered. Myron made a shirt to wear by putting an iron-on picture of Katia on one of his T-shirts. He is such a proud daddy! He did an interview for a few of the news stations so they will be playing tonight on some of the news. I teared up when I saw the first one just watching people go be tested to see if they could help Katia. As I type this, it just is coming on the news again:) God bless everyone involved and participating!!!! God bless you!!! Katia is asleep right now and I just want to watch the news and fall asleep with a smile on my face and a prayer in my heart. Love, Tracy

September 27, 2003 12:02 PM
I am feeling better. Katia let me take a little nap while she played quietly with her kitchen. She is so sweet. She did keep asking me if I was okay but her sweet voice never bothers me. I was just exausted I assume. There is a newly diagnosed patient up here and I would like to put her address here and ask you to stop by her page. Her name is Olivia and she is 15 years old. She was diagnosed in May 2003 and has tumors but they aren't sure what type of cancer she has yet. You can learn more about her on her page and leave her a message in her guestbook. Thank you so much:)
Olivia's Page

September 27, 2003 10:20 AM

Well it is day #32 in the hospital. I feel pretty bad today and I am not sure why. We had a decent night of sleep. Just regular things woke us up. Katia's thumb is healing and she still isn't having anymore fevers. That is just so great! I am praying her counts are coming up. There are 2 big marrow drives going on today and they were advertised on TV and Radio yesterday for Katia so hopefully a lot of people turn out and I pray there is a match found that will allow us to get the transplant here:) Katia is in a good mood today. She has a headache but she is dealing with it and not letting it really get her down. Every so often she will just lay down and feel glummy. I can't type much right now. For some reason this is blurry and it is bothering my head to be on here. I just got a really upset stomach to start with and now my head hurts so I am going to try to lay back and relax. I CAN'T get sick right now. Love, Tracy




September 26, 2003 9:50 PM
Today has been pretty hectic but in a good way of course. I hope these different news coverages will bring a lot of new registered donors:)
Katia requested that daddy bring her a little kitchen and she would eat so...
Of course, Myron brought this little talking kitchen today that is just so cute!!! She cooked eggs, peas, and chicken. BUT the good news is we did get her to drink some sips of chicken soup (real soup) and a few bites of a dinner roll. HEY I guess I knew what she was talking about. I am so happy she had those few bites and saw that it wouldn't make her throw up. Katia has been FULL of smiles these last two days. She has some bad moments when her eyes or head hurts and when she has runny diapers but for the most part of her day she is happy right now! I am so happy when she is happy. I have been able to sit and chat with her and she is so smart about what she is going through. She really understands we are pretty well stuck in the hospital until the leukemia goes away and that the medicines that make her feel yucky are trying to make the leukemia inside her mad so it will leave. She is a sweetheart!!! Her smile just gives me a warm heart. Myron was playing "kitchen" with her and I was able to go get something to eat. I have been trying to organize things in case things get hectic when decisions are being made. Katia is very happy (as happy as she can be) right here at All Childrens so I pray things will work out that a perfect donor is found here and we can procede with her brain and eye radiation and then transplant. That is my hopes. God will work things out according to his plan. God bless each of you that come by to visit Katia's site and pray for her. Thank you with all of my heart. My family and I appreciate your concern more than words can ever say. You are all invited to her graduation from highschool someday!!! Love, Tracy
PS If you would like to see a picture of her thumb, go to the link Medical Journals Go down near the bottom of the page. A lot of you have emailed me about how bad the thumb is and how did it happen. Katia is a severe thumb sucker! She tears it up and with no counts it gets bad but this is the first time it became infected. Infectious disease checks it each day as well as her doctors to make sure it isn't getting worse but today it looked a tad better:) I don't think she will ever suck that thumb again! Love, Tracy

HERE IS THE LINK FOR THE DRIVE INFORMATION IN TAMPA AND THERE IS NO CHARGE FOR THESE DRIVES! JUST TELL THEM YOU ARE THERE TO HELP KATIA.

100.7 FM SITE

September 26, 2003 3:30 PM
For those of you in the Tampa area, Katia's story will be on Fox 13 TV .This is to raise awareness of the local drives going on in Tampa area and to let people learn of Katia's story. FM 100.7 has been making announcements today on her behalf also. I appreciate everyone's involvement in this. "Love comes back when it's given to someone else."

As far as today has gone, we did get platelettes today so hopefully that will ease headaches. She is still having a lot of runny diapers which just really upset her BUT she is in a basically good mood. The effects of her chemo (round one) are going away and soon (round two) effects will start up. She should feel good for a few days though, I pray. Love, Tracy

September 26, 2003 11:50 AM
This morning has been a busy morning. Just a lot of small things going on, nothing big but I find it hard sometimes to get on here and update. Katia has a bad headache right now. She needs plateletes which she is about to get. The night went very well. She slept throughout the night and woke up around 5:30 this morning. Then we fell back asleep from about 7:00 till 8:00 so that was a nice little nap. No fevers and no itchies. Her right eye is causing her some pain but not enough to use morphine. Her WBC is now up to 0.02 so we are headed up at least. Normal is 4.0-12.0
Tatiana doesn't have a fever today but she stayed home from school just to be safe and take it easy today.
Myron is having to take some time off from work. His mind is just to preoccupied an since he does airport security, his mind has to be fully there. He is getting some lose ends tied up, trying to finish this CD and continuing to push for the marrow drives and of course coming here to see us each day. When he is here I want so bad to stay here and visit but then I want to get out of this room too so I get torn in between. I try to get out for just a little bit and go shower and get something to eat but then I like to see him and Katia laughing and playing. That always makes me happy. Myron has always been very loving and involved with our kids and I am very lucky to have that and so are the kids. They are all very close to daddy:) I will update later in the day when things slow down. Love, Tracy



September 25, 2003 9:15 PM
Today has been good. Katia has been in a decent mood with everyone. The picture in the photo album from yesterday is her doctor examining her and the reason I put the photo there is because Katia always gives her a horrible time with yelling and screaming and just carrying on. Well yesterday Katia was still on her "dopey juice" from the CT Scan so she was laughing and smiling with the doctor and I just had to take pictures. It was a wonderful experience for her not to be screaming. Today she has been more talkative with her doctors and nurses which is more like the way she used to always be in here. Katia normally has a very pleasant and outgoing little baby and we like to see that cause it means she feels better. Her counts are still zero so hopefully they start coming back up. I am praying a lot right now that everything will fall into place. This has already been very hard on our family emotionally, physically, financially and just in every way. I am so glad I have my little family though cause we are all very supportive of eachother and that is so important to me. Katia feels a lot of love from her family and I think that really physically and emotionally helps her. Katia has learned to pray when she feels bad or when I tell her someone else is feeling sick. She even prays daddy is okay in his car when he leaves and she hears me tell him to drive safely. She is just too sweet for words! I know God has big plans for Katia in this life. She just has this look on her face sometimes like she knows something I don't know. I love my little baby so much and I could just kiss her and hug her all day, everyday!
Tatiana came home from school today sick with fevers. I am keeping her home from school tomorrow and hopefully it is just that she is worn down. That happens to her when she isn't getting enough sleep and she gets the least little cold or something but she can't come visit right now no matter what. I told Katia that daddy couldn't come tonight because Tatiana was home sick and she prayed for Tati:)
Today is day #30 of being in the hospital. I don't feel out of place here because we spent so much time here before but I am getting very homesick, not for the house but for my home and our family eating dinner at the table and just our routine. I miss Katia having the whole house to roam through and I miss her following me around as I did housework or hanging on my back when I checked Caringbridge sites. We did that everyday, two or three times a day. I miss drinking coffee on the backporch and looking for butterflies.
Okay enough self-pity! I know there are far worse situations than mine.
Myron is trying to work on his next CD project. We will again use it as a way to gain awareness to the need for Marrow registration, blood donation, and supporting these different organizations that research for cures and better treatments. Myron feels so much better when he can be doing something to help the situation. I know it is very draining on him to keep on going day in and day out so this music helps him to concentrate on something that he knows is so worthwhile. We were trying to find a sponsor to help with the studio and production cost but now we feel like we really need to push this along because time is just passing us by and we feel very strongly about our involvement in this.
Of course, as soon as the CD is done, I will try to get the songs on here. One is a type of thank you song to those people who help either by being involved through research or treatment, financially or just emotional encouragment. The other song is a lullaby to Katia:) She loves both of these songs!!!
Well, I am not going to hold everyone up. I get very long winded. Oh, yes. Someone sent Katia a pretty Lucite star with her name engraved in it and a note that said, "You are a shining star." I did not find a name but I want to say thankyou. That was so sweet.
To everyone who has sent cards, postcards, balloons, and packages, thank you so much:) A line from Myron's song says, "Love comes back to you... When you give it to someone else."
That is so true and I just want each of you that visit this site to know how very special you are to me and my family. May God bless you abundantly. Love, Tracy

September 25, 2003 9:00 AM
We had an uneventful night which is GREAT! The runny diapers seem to be slowing down. Katia is still pretty puffy. Her thumb? Well she seems to have everyone confused. We are still waiting for results from the biopsy on that. Katia sounds congested when she cries but since she shows no pneumonia we are thinking that is because of inactivity. She does get up and play on her bed some. I make her stand up and walk around on the bed as much as she can to keep her leg muscles from getting weak. There are still drives going on for Katia to find a marrow match and the hospital is still searching in the registry so we will see if something is found. A few people have told me that cord blood transplants are good and I definitely agree with that. It isn't that we aren't comfortable with the cord but there is not a backup plan here in case that doesn't take and the hospital doesn't want to do anything to hurt Katia's chances of having a plan B so that is why they are checking with these other hospitals first. It may be that the other hospitals would want to be the original transplant team so they can completely oversee her instead of just getting her if the transplant fails. I am extremely pleased with All Children's Hospital, their staff, their abilities and their sincere love for Katia. This has become like home to us and at the same time we are close to our home and our other 2 children. I know that Sharayah and Tatiana would do whatever is needed for Katia. They are just wonderful like that and love Katia and put her life ahead of their wants. It would just be very hard for Myron and I to go with Katia and run our lives here too. I know we could get someone ( a grandparent) to stay with our kids and take care of our house but since Myron would be temperarily out of work, that would be the problem - keeping up with our financial obligations. We are praying that things will work out that we can stay here in this hospital and close to our house. We pray that a perfect match for Katia walks through the doors to a donor center and signs up for the registry. Remember, even if it doesn't help Katia, it is helping Someone in her same predicament. If it comes down to us having to go to another hospital, then we would have to face that and figure things out. I know God will put the right things in place for His plan. Tonya, thank you for telling me to take things one day at a time. I am such a planner and yes, it is true that with AML you can't plan anything, not even your afternoon. I am just nervous that we will all the sudden be set up for transport and then I won't have my head on straight to make the necessary plans. Katia is sitting here looking (staring) at the door for the mail lady to show up. That is Katia's escape each day. I think it is cute that she has found such solace in her mail:) Love, Tracy



September 24, 2003 7:38 PM
Katia has had a reasonably good day. She is having good oxygen levels, the CT scan showed a little bit of (I forget the word) in her lungs but not pneumonia. It is mainly, they think, due to the fact her activity level is so low so her lungs aren't working as hard as they should. She of course still isn't eating, however, she does ask for food.
We had a meeting today to discuss how the transplant search is going and what the plans are due to the fact time is passing us right now. There is a cord blood that may be a good try but then nothing else which means no backup plan if the cord doesn't graft so it may be that we will end up having to go to St. Jude in Tennessee for a new type of transplant they are studying. Even though Myron and I are not a match, there is a way they are using what we would have and do a different type of procedure to then do the transplant. This is a very new procedure, very new. I think the procedure sounds promising but the time it takes to graft would be much longer and we would be looking at being in St. Jude for months and then around Tennessee even longer. The problem with that is what we would do with our life here? Our house, our kids, etc. It just leaves alot for us to figure out. Of course Myron and I would plan to make the trip and be with Katia throughout but just so many other things come up. I know we would make it work if it comes down to that because whatever we would have to do for Katia is what we would do. We would just be having to support and run two households. I don't know. I know so many of you are concerned and are asking about what we are finding out so I wanted to share this information with you as we have just been given this information. All Children's is going to call around and find out if they do the cord transplant here and it doesn't graft (since it isn't a perfect match) than who would be willing (there is only 2 hospitals to chose from) to do this new procedure as a backup. Usually they don't want to be involved as a second solution, they want to take the case on immediately which would mean we would go there for the brain and eye radiation, full body radiation and then transplant. That would be right around the corner. The doctors here are still searching the registry each day for a better match and let's just pray they find something and we can stay here and have everything done here. That is best case scenario BUT Katia is worth everything so we will do whatever we need to do. Well, I am pretty stressed right now so I am going to try to get a shower and wind down. Our minds are pretty well swimming more than they were. Throughout all of this we face new dilemas everyday and we have to figure out ways to work around and make things work. Now THIS is just another HUGE decision to make. Please pray for us. Love, Tracy


****

September 24, 2003 9:00 AM
Good morning:) The night went reasonably well. Katia had a few episodes of runny diapers that woke her up but then she went right back to sleep. Her oxygen levels are staying above 95 and this morning they are staying right at 99o that is good. She is due to have a CT scan today sometime. The biopsy on her thumb will take about 24 to 48 hours. She is still C-Difficile positive so no leaving the room but she doesn't have the energy to walk anyway. She is keeping a good attitude though throughout. She only cries when she hurts and we are working on being nicer to her doctor. Katia tries. I was thinking last night about the fact sometimes Katia's page is so positive and other times I feel like I only update with problems but then I feel the page is always positive because it is filled with a positive attitude about how prayer really is working for Katia and how her story has reached so many people and touched so many lives. I look at the guestbook and although an update may not be good, the guestbook is like a huge ray of sunshine with positive vibes, prayers, and just the most loving and thoughtful people all gathered together in one place! I hope that when you have the time, you read eachother's messages in the guestbook because they are so uplifting. Right now, Katia is watching My Little Pony and carrying on a typical "Katia morning conversation" with me. She is so sweet and I am so lucky to have her in my life:) Love, Tracy



September 23, 2003 8:01 PM

Well let me see, where do I start. I am about to post some new pictures. We had a GREAT mail day!!!! That was a fun thing to do and Katia was just tickled pink so there is a picture of our mail delivery. We did do the biopsy on her thumb which didn't go as smooth as I had hoped. She bled a lot and then her oxygen levels dropped down to 70nd now they are staying in the low 90's so we are going to have ANOTHER CT scan done. The last two things were x-rays but the other night during the Scan of her belly is what brought the start of, "What is going on with Katia's lungs?" So we still haven't gotten a good answer but it seems like she may have pneumonia. Her WBC (white blood cell count) is 0.00 so she can't fight off anything. She is on 3 antibiotics which helps things not to worsen (like her thumb) but it doesn't heal anything till she gets some WBC counts. She is also on an antifungal medicine which covers a WIDE variety of fungal infections so hopefully that is the right one for her. We should hear back about the biopsy on her thumb maybe tomorrow. Let's see, the Lasix didn't do a whole lot but we aren't repeating it tonight from what I understand so she remains puffy. Katia has become a pro on how to react when her oxygen alarm goes off. She puts the mask on her face and pumps it for herself until the alarm stops. She is giving oxygen to all her animals too:) She is sweet! Well, let me go post the pictures. My mind has been pretty scattered and I am still pretty shook up about Codi. Everytime I think about her not being there with her family, I get teary eyed and huge lump in my throat. I know a lot of people think I can handle things like a pro but I have become a crybaby at even Mayonnaise commercials. I can barely handle a LifeTime television movie. I just pray for God to give me the needed strength each day to confront what I must and make the right decisions and also to keep my cool if things go haywire during any procedures. God does grant me that strength and I thank everyone of you for praying for us but also for me. I REALLY need to keep my head straight and be able to find a moment of peace during the day. Thank you to those who have mailed me little gifts to refresh myself and pamper myself! God bless you. OH THE POSTCARDS!!!! 123 POSTCARDS!!! Awesome, huh? I tell Katia, "Let's get on our postcard plane and see the world!" Thank you for those participating and always, thank you for your prayers, cards, letters (I love the letters people send about your lives and how Katia's page has helped you in anyway). Thank you for those of you sending her packages (that is better than any medicine - I am sure Katia would agree here) and thank you for visiting our links to other children we visit. Love, Tracy

PS There are quite a few of "Katia's originals going out in the mail tomorrow and we are working on some for the following day too:)

September 23, 2003 8:40 AM
First, I must let you know that Codi has passed away. This is an email from Loni. I am sharing it because it just shows how wonderful this dear family is and what a special, really special, little girl Codi was. Codi will be a beautiful beautiful angel.
"Hi Tracy,

I wanted to let you know that Codi passed away this morning at 12:52 am. She was surrounded by the people who loved her most.

Yesterday morning, I mailed a package to Katia. Codi helped me pick the things out that we sent to Katia. That was the last shopping trip she ever went on - at the hospital gift shop at Doernbecher.

I'm praying for you and Katia. Take good care of yourselves. Know we love you and now Katia has another Angel looking after her.

Love,

Loni"


My throat hurts from the lump in it right now. I was really praying for a miracle for Codi but I suppose God really needed that beautiful little girl with him to be an "Angel Leader" or something. Maybe she was needed in Heaven's choir. Whatever Codi did in life, she did it to the fullest. I am sure her family is so proud of her and I am sure their hearts are just feeling absence right now. Loni, please know how much of a difference you and Codi brought into our lives. Please know your family is in our prayers as Codi has now gone to be alongside her mother. Please know you showed so much love and compassion to Codi and it showed:) God bless you and your family. We love you. Love, Tracy

Update on Katia:
We just returned from a chest x-ray which they had wanted to repeat. Please pray it is clear. I have a good feeling it is. The Lasix she took last night only caused one full diaper of pee. I figured it would be a lot more. She is still pretty puffy but I think she is somewhat more comfortable. I am having to squeeze diapers on her cause now even the large ones are tight from being so puffy. I can't really put my mind to update on Katia right now. I am just going to have to take some breathing time and get my wits back together. I can say this. I know there are a lot of new angels in heaven that we have come to know and I am sure there are mountains being moved by them to pray for Katia. How do I know that? Well, over the last year, it seems that so many beautiful, kind hearted children have passed away and earned their angel wings to Heaven. They were some of the best children, most loving and angelic children here on earth. I cannot imagine what glory they will bring to Heaven. The choir must be magnificent in Heaven. Playtime must be filled with joyful laughter and running and flying and just pure excitement! I try to imagine how happy these children must be but I always get such a feeling how missed they are right here on earth with their precious families that stood by them and fought the fight with them. The parents and families that cried when these children hurt, laughed and smiled when tests came back positive, had broken hearts when labs came back with the wrong numbers and then had to find a way to graciously let their child pass from earth to Heaven. My heart goes out to these families, literally I feel like pieces of my heart and spread throughout the US and from side of the world to the other. Caringbridge has allowed us to come together and share our stories with the world but at the same time, share the heartaches that we all are facing at these times. Something that has always been "Someone else's story on TV" has now become my family's reality on a daily basis. Something we try to face with a positive outlook, gracefullness, and just pray that God's grace gives us the strength each day to get through just to face another day of the same day. I pray our journey will end with a cure for Katia and all the children, adults and families going through this day to day battle, minute by minute roller coaster and a journey that no one should ever have to live. God bless each of you. Hug your families, your children, your spouse, everyone and just tell them each day how important they are and that you love them. Do something spontaneous and sweet for them that lets them know, "Hey I was thinking about you and I wanted to make you smile." Get a cake and have the bakery write, "Today is a special day because of you!" Send flowers or balloons to the one you love just to brighten their day. Sit down and just color a picture, even if you are 70, you are never too old to just color and smile for yourself. Love, Tracy
Please visit Codi's page and leave a message for her family. Take the time to read about this special little girl and all she fought for and stood for.
Codi's Page (Heaven's newest Angel)


From Codi's site:
September 23, 2003"Sadly, we must report that Codi passed away at 12:52 am this morning. Our hearts are broken but Codi once said that if she died before first, she would want people to remember her and be happy. That's what we will try to do."



September 22, 2003 10:15 PM

First, please pray for Codibug, she is back in the hospital undergoing a lot of test. If you don't know Codi's story, you must go to her page. She is amazing!!
Codi's Site

As for Katia, the runny stools have stopped:) Her fevers are gone:) She is very puffy from a lot of fluid retention since she isn't eating and getting all her nutrition via IV fluids. So she has gained about 6 - 8 pounds of fluid which we are trying to drain with Lasix tonight. Boy, is she peeing! She needs to get some scans of her eyes but her face is too puffy right now. They want to repeat the chest x-rays probably tomorrow and we are waiting to find out what is going on with her thumb. It is purple (about 90f it) and hard with a blister on it. It is very painful to her right now so she is very protective of it. I want to thank everyone sending Katia the sweetest little care packages! You make her day and for everyone praying, I guarantee you are making a difference. That was proven with these chest x-rays. First of all when I updated and asked for prayers last night, my heart was pounding and I was so nervous but I felt calm after a while just knowing the prayers were going out from all of you. It is so comforting to know you are there and to read your uplifting words of encouragement in the guestbook. The postcards are amazing. There are many beautiful ones, funny ones and some that are so interesting showing me things I never knew. I feel like we are on a trip. Katia loves all of the pictures. She loves the bridges and buildings and flowers and animals and of course the Mickey and Minnie ones. She has gotten a letter from "Minnie Mouse" and "Baby Mickey". She loved those!!! She still is all big on going to Disney and this is keeping her positive about the whole thing. Thank you for hearing what I say and responding to it. We are mailing out about 15 of "Katia's orginals" to some of you that have mailed the self addressed stamped envelopes. It is turning out to be a fun project that Katia and I enjoy working on. She doesn't feel to great to sit up for long but we do a little here and a little there and it is nice. Last night we were up changing a lot of dirty diapers and waiting for x-rays (that didn't happen till morning) and tonight will be changing a LOT of wet diapers. She is soaking one about every 20 - 30 minutes so hopefully she isn't as puffy tomorrow. Thank you so much for ALL of your prayers. Thank you so much for your "Love Packages" and "Smile Packages". Thank you for participating with the postcards and always the cards! Love, Tracy and Katia

PS I am not able to take too many pictures right now due to swelling and the flash hurting her eyes. I always want Katia's pictures to be positive and with her being happy and wanting to take the pictures. I am sure you understand:)

September 22, 2003 1:15 PM
Okay, some results are in and the prayers do help! The chest x-ray "looks" clear but since the CT Scan showed something, the will repeat the x-ray tonight or in the morning. All the other tests (labs) are still pending. There are so many things pending I can't hardly keep up with them. Her thumb hopefully will start healing with all of the antibiotics and fungal medicines. Her White Blood Cells are totally wiped out. I think this is the lowest they ever went. They have never just been gone but now they are at 0.01. So hopefully when the counts start coming back, things can begin to heal. Katia is puffy all over since the only nutrition she is getting is through fluids so they are going to give her something to drain some of that water and see if the swelling will go down on her left eye but they want to do an MRI again of her eyes to see what is going on anyway. That is a concern to them because it doesn't make a whole lot of sense what is going on there. Aside from that, we did have fun with mail. Katia has had 8 runny diapers since 7 AM so she is wiped out but when the mail lady knocked on her door, Katia sat up and said, "Come in, come in! My mail!" That always makes the people delivering the mail, and me, very happy to see her perk up. THANK YOU SO MUCH!!!! LOve, Tracy

September 22, 2003 10:00 AM
Chest x-ray done (no results yet). Infectious Disease came by and looked at her rash and her THUMB (they took a sample from the thumb to test) and they are ordering more stool samples since she is on 4 antibiotics by IV and one by mouth and STILL has a number of runny diapers. Katia's left eye is more swollen right now. I am not trying to sound completely negative. She will still smile and watch her little movies. The picture at the top is a smile to say hello to all of you:) Love, Tracy

September 22, 2003 7:25 AM
Nothing happened last night. We waited until about midnight but radiology never called for her so I guess it will be done this morning. We are up bright and early (about 5:30 AM) due to a lot of commotion on the floor. It is sad but there are about 5 babies up here right now and of course babies wake up hungry and they make sure to announce that. It breaks my heart that they are here though. I will update as soon as I know anything. I rather x-rays be done during the day so her regular doctors can look at them and give me answers. I am not sure exactly even WHY they are running the test but I know the nurses can hear a problem when they listen to her but it can be a number of things some I would worry about and others would just mean more medicines. I am exausted right now so I can't think to type so I will update when I know anything. Love, Tracy




September 21, 2003 8:30 PM
Okay we went and had the CT Scan, took 2 tries, the first time she just screamed so we had to come back upstairs and give her some "dopey juice" and we went back down and that worked. Then I heard them saying she needed a chest x-ray also (which hadn't been run past me yet) so I asked and they said the CT Scan is showing "something" in her lung and they are trying to order it right away for tonight? Now we are in the room, Katia is asleep, waiting to find out what is going on. I have no idea but I just have this nervous feeling going on inside my chest. Please pray that it isn't anything serious. Love, Tracy

September 21, 2003 5:30 PM
Well today is not getting any better, YET:) We are trying to keep positive and lighthearted. Katia and I are listening to Raffi (ALL DAY!). She hasn't eaten for days and didn't even drink anything yesterday but today they want to do a CT SCAN of her belly since she can't stop pooping and the fevers are still going on. Well they have her drinking 10 ounces of the contrast juice which I am having to bribe her, force her and plead with her to drink. We do have 3 hours to get it done but it isn't as easy as I thought it would be cause her throat is sore and she keeps gagging. The fevers are maintaining around 103. She started another antibiotic and also a medicine to fight fungal infections cause they think her thumb may have fungus and her hands are all peeling pretty bad (just the finger tips) but it seems like layers are dropping. This never happened before. A lot of things are going on that we didn't expect. BUT the chemo is stronger this time. She got the rash all over her head and upper body again but they are trying to stay ahead of the itching and they are doing a good job at that. Let's see, what else. Her left eye is almost completely swollen shut? We don't know why. There are no answers for that yet. She did get swabbed to send off some samples of her nose, rectum, and mouth. She didn't like that at all! Other news? YES! Postcards! 56 so far:) She really loves all the pictures. We are getting some fantastic traveling in:) Right now, that is our link to the outside world. I have some from North Carolina and I told her, "That is where all the rain is coming down." She is able to link things together using the postcards and the news:) She has been telling me all day that she loves me which just warms my heart especially since I am the one that has to pester her so much. She looks like she is just worn down and miserable but I get smiles out of her and she was even singing with the Raffi video which just shocked me to hear. She is such a precious little DOLL! Thank you for checking up on his. I have to cut this short cause she is digging at her eyes and face. Love, Tracy


SEPTEMBER 21, 2003 7:55 AM
BEFORE I UPDATED, I WANTED TO GO CHECK ON SOME SITES AND SEE HOW OTHERS WERE DOING. CODIBUG IS FEELING A LITTLE BETTER. SHE IS NOT AWAKE MUCH AND HER PAIN MEDICINE HAS BEEN INCREASED AS WELL AS HER OXYGEN LEVELS. CODIBUG'S SITE

KATIA HAS HAD A HORRIBLE NIGHT, REALLY. SHE CAN'T STAY AWAY FROM THE FEVERS. THIS MORNING SHE IS AT 103.2 AND THAT MAKES HER SHAKY AND MISERABLE. SHE HAS HAD SO MANY RUNNY DIAPERS IN THE NIGHT ALSO AND SHE HATES THE DISCOMFORT OF BEING CLEANED UP. PLEASE PRAY FOR HER COMFORT. THAT IS SO IMPORTANT TO ME. SHE IS ON 3 ANTIBIOTICS AND WE ARE NOT SURE WHY SHE CAN'T SHAKE THESE FEVERS. SHE DID FINISH HER CHEMO LATE LAST NIGHT SO HOPEFULLY SHE WILL RECOVER HER COUNTS SOME AND THAT WILL HELP HER THUMB TO HEAL AND HER BOTTOM TO HEAL SOME. SHE JUST STARES AT ME WHEN SHE FILLS UP A DIAPER LIKE SHE KNOWS IT HAS TO BE CLEANED BUT SHE HATES ALL THE FUSS OVER IT. POOR BABY. WE NOW HAVE TO WAIT FOR HER COUNTS TO RISE SOME SO SHE CAN AGAIN BE KNOCKED DOWN WITH THE RADIATION. I AM LOOKING AT THE RADIATION AS THE ONLY WAY TO RID HER EYES AND BRAIN OF HER CANCER AND PREPARE FOR THE TRANSPLANT. I JUST PRAY SHE CAN HANDLE ALL OF THESE TREATMENTS. THANK YOU SO MUCH FOR CHECKING ON US. I AM SORRY THIS CAN'T BE MORE POSITIVE BUT WE ARE BOTH COMPLETELY EXAUSTED RIGHT NOW AND KNOW WE ARE JUST HEADED FOR MORE AND MORE. I DO PRAY SHE WILL HEAL ENOUGH AND KEEP THE FEVERS AWAY ENOUGH TO GO TO RONALD MCDONALD HOUSE FOR A FEW DAYS BUT RIGHT NOW I DON'T SEE THEM RELEASING HER. LOVE, TRACY


Wednesday, September 17, 2003 7:08 PM CDT



UPDATE: CODIBUG IS NOT DOING WELL TODAY AT ALL. HER LINK IS ABOVE FOR YOU TO VISIT HER SITE. HER ORGANS ARE BEGINNING TO SHUT DOWN. CODI IS SUCH AN INSPIRATION TO ALL OF THOSE AROUND HER AND THOSE OF US WHO HAVE LEARNED OF HER STORY ONLINE. "LORD, PLEASE BE WITH LITTLE CODIBUG." LOVE, TRACY


September 20, 2003 6:30 PM
I just want to update cause I have a feeling this is going to be a long night. Katia just can't keep the fevers away. She gets Tylenol, the drop for an hour and then pop right back up. She is on 3 antibiotics would should have started working by now but...
She had one bite of Tatiana's cake (yes, we finally cut the cake) but that was all. We got her out of bed and let her sit with us by the window to look at the rain. I am going to try to update pictures as soon as I update. She is just wiped out. She did get her blood and platelet transfusions (blood is going right now). I just feel so bad for my little baby to have to go through all of this and not even fully understand why. I put eye drops in her eyes to protect them from one of her chemos and she doesn't understand that I am not trying to just torture her every few hours with something she hates. She can't stand eye drops! She is breathing pretty rapid right now and I just know she feels really bad but can't tell me how. Please pray that she will communicate with me and she will have a restful sleep. I am just worried about a huge fever spike like she has done before and that scares me. Well, let me try to get the pictures up. I like the ones of us watching the rain:) Love, Tracy

September 20, 2003 9:20 AM
Quick update:
Katia doesn't feel well at all this morning. Fevers are back and she just feels so puny already. Her thumb is very bad looking so they have changed antibiotics since last night. No change yet but hopefully it will start looking better. She has runny stools right now and is still not eating anything. She does drink her water though, about 10 ounces a day. She is still on Nutritional Supplements through her broviac so they are keeping her plump and pretty:) We are going to again try to have cake today so... It will be a huge event if she takes a bite of cake! Well, she is coughing a lot so I need to end this for now. Please pray for Katia that today can be fun and relaxing as much as possible. Love, Tracy



September 19, 2003 8:50 PM
WOW exactly 12 hours since my last update:) I actually went home today for a few hours and it was very nice. Myron was here with Katia and they played, read books, watched her movies, and she was just all worn out when I got back. She said she had a lot of fun though. I am glad Myron got to spend that time with Katia alone. It is hard to always have to spread attentions around when he comes to visit so today was nice for both of them:) I miss Katia in the car when I drive home and I look forward to getting back to her. We have still not cut Tatiana's cake. Katia is just not feeling well and she is very gaggy so we are on hold. Tonight she threw up after her medicines and kept gagging so I thought it was best to wait until tomorrow, maybe (we all agreed). Katia now has 43 postcards!! We should go for a world record or something:) She loves these postcards. She also got a postcard from Mickey today and that was so special to her. AND she got a letter from Baby Mickey:) WOW!!! Thank you so much everyone. Love, Tracy

September 19, 2003 8:50 AM
Well we didn't get to cut cake last night. Katia felt very crabby so we decided to wait until this afternnoon. Tatiana and Sharayah both will pass up on things if Katia feels bad. Last year we celebrated Sharayah's birthday about 2 weeks late. We had come home from the hospital about 4 days after Sharayah's birthday but she wanted to wait until Katia's counts got better and she felt better so she would enjoy the idea of the cake. Thankyou to those who sent Tatiana birthday presents. She got teary eyed when we sang happy birthday to her. She just stared at Katia as she sung Happy birthday to her sister.
Katia is feeling pretty bad right now and will probably stay this way for another week or so now. Her bottom is hurting her a lot and she is having stomach aches and headaches BUT no itchies!!!! That is a relief. This new method is working to keep the itchies away. Katia is very tempermental right now with the nurses and doctors. She needs a breath of fresh air away from here. I am having to give her so many medicines and then also eye drops every 2 or 3 hours so she isn't too happy to deal with me either and since her bottom hurts, of course all exams end up there and she hates that!!!! Okay, well that is enough. Oh, we were happy to see survivor start, we are big fans of that show. We started watching that the first season when I was pregnant with Katia and is our family show to watch. I wanted to get her one of those survivor ties but then more so when she was diagnosed. Katia is our little survivor and now she is battling again but she is going to win:) Thank you to all of you sending postcards. We are up to 38 so far:) WOW. Katia is traveling the world in her hospital room. There is almost enough to make the first poster. She loves holding them like a deck of cards and point out what the picture has in it then she acts like she is reading what is written on them. Then she hands it to me to read the, "real words" as she says:) Thank you so much for participating in this. Remember, Katia is drawing pretty pictures and if you want one of her "originals", just send a self addressed stamped envelope (regular size envelope) and we will send it right back to you. We even have a cute little signature idea for Katia:) Love, Tracy


September 18, 2003 7:25 PM
This is going to be a quick update but I just wanted to do it now instead of later:) Okay, Katia's ultrasound and x-rays look good. Her fever is staying away for the last few hours:) Yeah! She isn't eating anything. Tatiana is about to get here with cake so hopefully Katia will eat a few bites. Thank you so much for all the birthday messages to Tatiana. She is loving this!
Okay, you want to hear something that just threw me for a loop! I was online today (I use AOL) and all the sudden I thought! "Oh my gosh, I have never changed my account back to unlimited dial-up!" At home I have broadband unlimited which comes with 5 hours of dialup usage. So I started freaking out seeing how I spend so much time online lately. Anyway so I click to view my bill and OH MY GOSH! $1064.00!!!!! I almost literally fainted. So I start trying to find a number to call AOL and tell them what is going on and I can't find a real PHONE NUMBER for them only online stuff and I don't want to be online because it is outrageous!!! So, finally I call information and get the number. I called and the man that answered the phone got shaky in his voice when he saw the billing amount. He listened to my explination and his first words were, "We can fix this, no problem. But if you hadn't called before your billing cycle ended (two days from now) then it wouldn't be that easy." So he changed my billing plan, back dated it, and wah lah! Oh thank you Lord for getting that fixed. I turned all shades of red in my face and neck, I literally felt sick and I just couldn't think straight but it was handled by a very nice gentleman who was very understanding. He had been a burn victim and understood how things change all the sudden and you forget to do certain things. Thank you Mr. Billing at AOL. Okay, that was my excitement for the day. I am going to try to have a quiet evening and enjoy Tatiana's little birthday. Thank you so much for reading my little venting but it all turned out okay and for that I am completely thankful!! Love, Tracy
PS Thank you Diane for letting me know Codi was released from the hospital. I really needed those good news. I am so happy for Codi!

September 18, 2003 12:43 PM
HAPPY BIRTHDAY TATIANA!!! WE LOVE YOU!

Yes, today is Tatiana's 11th birthday (Katia's sister). We hope to have a fun evening and have some cake:)
Katia's fevers are still persisting. She is back on antibiotics but this time they are trying a different one. She also started another chemo last night (the one that started all the itching last time) but this time we are giving her IV cortozone before all of the treatments around the clock plus we changed eye drops to see if it helps her not have all the lighting problems. Her stomach is puffy and sore still. We had an ultrasound done this morning to look at her stomach, gut, bowels, kidneys, liver, etc. I don't know any results from that or the x-ray of her belly from last night. She is sitting here going through postcards right now (she really loves these postcards! That was a great idea!) She is "reading" the messages on the postcards. Well, I really don't have any more information right now. I will try to update later. Thank you for sending Katia all of her happy mail (it works) and the postcards for her to "travel the world with her friends". Thank you so much for always checking on my baby and our family:) Love, Tracy
PS Remember, if you want a "Katia original" colored picture, then send a SASE (self addressed stamped envelope)and we will mail you one back. It is just our way of saying THANK YOU!!




September 17, 2003 8:55 PM
Adding new photos:)

September 17, 2003 8:10 PM


Just a quick update. Most of the day went okay. Now Katia is spiking fevers again???????????? Her tummy is bothering her so we went for an x-ray. I guess this is the part where the chemo starts to take over again. I had an idea. Since so many people do such nice things for us, we would like to return the niceness. If you would like Katia to color you a picture and send it to you, just mail a self addressed stamped envolope and I will put a pretty picture from Katia's little art desk to you:) I think that will be nice. Tell me what you think. So many people have shown her and our family so much love. She has some paper and pretty little crayons. Thank you so very much for all you do:) Love, Tracy

PS Please go by and visit our friend Christina's website. She is 7 doors down from us and on September 2, went through transplant. She is having a lot of difficulty and she could really use some cheerful messages and her parents could use some encouraging words. Her 11 year old sister, Ashley is up here all the time too so... I know you guys will go visit her site and leave some awesome messages. Her parents are Sherry and Mike. Thank you.
Christina's site(Leukemia AML-recent transplant)

September 17, 2003 10:45 AM
Last night went well. Katia is in a good mood today and as I type, mail just arrived! So yes, she is begging to open mail but I want to update first. Last night, I was up for quite some time trying to do some bills and organize and that is always stressful anyways but worse in here. I feel like things get ahead of me and it is just overwhelming sometimes. Then, I looked over at Katia and she had this little sideways grin like she was dreaming something funny:) I looked at her thinking I would do anything for her, anything! A little later she kinda just held up her hand and put it on the bedrail like she knew I was still awake and wanted to hold my hand so I stopped what I was doing and did just that. I fell asleep for a while that way and woke up when my arm felt like it had become detached but my heart felt better. This illness and hospital stays and just things that come up really does throw a huge wrench into our families finances and life but all we care about right now is that Katia goes through all of this with flying colors and finds a cure! I can't imagine the lump I will have in my throat the day we reach our year, than 3 year mark etc. after transplant but I will probably burst into uncontrollable sobbing the day she graduates or gets married! Katia is my heart. She helps it beat each beat and keeps me lighthearted with her "3 year old way" of looking at life. Right now she is the one having chemo pumped into her, she is having headaches from pressure on her eyes and she has no appetite and gagging but you know what she is doing? Singing to Raffi:) I love her so much. Love, Tracy


****



September 16, 2003 5:05 PM


Small update (I think)
Today has just kinda been a humdrum day but that is okay. Katia is being bothered by her eyes but not horribly. Just on and off. The chemo she will start on the 18th (Tatiana's birthday) is the one that really seems to mess with her eyes and give her all the itchies. Hopefully Tatiana's birthday will go smoothly and we can have a nice evening for her sake. I know this is harder on Tatiana than she shares. She is very very sensitive to Katia's unhappiness or pain. It is hopeful that we may have a week break between the chemo and radiation so we MAY get to go to the Ronald McDonald House? I am not going to get over excited yet. Of course, Katia's counts will have to come up some so that will be a week or so and then... I don't know. I just asked the doctor today. Katia really does need some break even though she may feel lousy just to see something different. She just looks so mature sometimes like she really has a lot on her mind. When I ask what she is thinking she does say things about being sick and wanting to be better and sometimes she just ask for a certain toy and then just sits and plays there in her bed. Right now she is playing with 2 little dolls quietly. Let's see, what else? No more word on donors. I know they are searching and working but just no word yet. Oh, she did tell me today she liked the way her head feels. She pats it a lot and likes the little slappy noise:) Please always remember to check on the kids above when you get a chance. I don't get to go by as often. When I get the chance to sit down and go online, I like to update Katia's page and read the guestbook:) I know I say it a lot but I mean it more than words can say. THANK YOU for praying for a writing to Katia and I. I love to check the guestbook and Katia loves when they come in and bring her mail. Sometimes they bring it as they sort it so they can come in here 3 or 4 times a day with mail here and there. I like it when they do that and they enjoy seeing Katia light up. She is quite good at opening mail:) She reads the card and checks out the stickers on envelopes and then hands it to me and says, "Read the real words". I guess she just enjoys play-reading. I can't wait till she can really read. I know she will really like books and stories:) Well, Katia wants me to go by her and hold her hand:) :) :)
Love, Tracy
PS We have about 15 postcards so far... I am going to do a map too. That was mentioned in the guestbook and I agree, Katia could see it both ways and really enjoy it. I want to get a big colorful map that I can pinpoint things on:) There have been some great ideas given to me (yes I do pay attention to them and enjoy them)Love, Tracy


September 16, 2003 9:40 AM
Katia woke up today with quite a headache but feels better now. One of her pupils is larger than the other and we aren't sure why. I am sure it has something to do with the problems in her eyes but I am not sure if she is affected by this or not. We have received some postcards today:) Our project is starting. Thank you so much. I tell her, "You have a friend here and here and here," She likes this idea. At first I was going to get a map and mark where everybody was to show her but then I thought of the postcards and thought that would be even better cause she could travel the world without traveling:) Thank you so much for helping her to travel far and wide:) Love, Tracy



September 15, 2003 9:20 PM

Well we are just about to start chemo but better late than never. The new photo at the top is Katia's "Snow White Hairdo". Someone at Myron's work thought of that. I never thought about using those wigs. Katia just fell in love with it:) That is about all. Not much really went on today. She did have a nice bath and then got to sit with me for about an hour tonight all unplugged from her IV. We just talked about how we have to get rid of the Leukemia so we can go home and play and then go to Disney. She is very smart about all of this. She had some questions about medicine "to make her better" hurts her belly and gives her headaches. That just breaks my heart because I don't know how to really answer that other than she just has to trust me and her doctors and pray to God for everything to make her better. I told her the nurses and doctors are her friends even though she doesn't like what they do sometimes (she had her spinal chemo today) and they only want to see Katia Leukemia free. I am teary eyed just typing this so I better go ahead and update the pics tonight. Sorry. Thank you for checking on us today and pray for Katia to just trust things and pray when she is scared. She likes to pray and I think that is very helpful to her feelings. We are looking forward to working on some projects this week. We have a hand molding kit to do and the postcards coming in we will be decorating the posters so hopefully this week will go smoothly and she won't feel too bad. Thank you for passing the word on about the postcards. I think this will turn out fantastic and be a lot of fun and also very educational when we get to see where all of our cyberfriends live:) I can't wait! Love, Tracy


September 15, 2003 1:00 PM
Mini mini update:) Katia ate 10 M&Ms!!! Hey that is a start, right? We are waiting to go get her spinal chemo done and then her IV chemo will be plugged in. Pray, pray, pray. It is a 5 day round I found out. Love, Tracy

September 15, 2003 9:20 AM
The night was fever free:) We are waiting for chemo to get started. If you haven't seen the ladybug poems left in the guestbook, you have to check them out, they are GREAT! I read them to Katia this morning. Thank you Cassie. I love rhymes and such but those were just great especially the one about "LadyBug Jack". I am about to post some new pics. This update may sound kind of choppy cause I keep stopping to take care of things here. Katia hates when they walk in and have her medicines in their hand. Most of the nurses know just to come lay it down without her seeing it and I will give it to her without all of the drama but if she sees them, she goes into a screaming mode which sets off her alarms for her heart rate and... so she gets all worked up. Thank you so much for checking on Katia. Pray that the chemo starts on time (which I don't know what that is) and that she handles it without going into the complete itchies again. Love, Tracy



September 14, 2003 8:30 PM
Katia had a good morning even though it did start off with a fever. This afternoon was going okay and she again was unplugged from her IV pole for a while but she got weak and tired and went to sleep soon after. Right now her fever is slowly coming back up. She is shivering. We are due to start chemo in the morning as scheduled even though this is going on. She has already gotten a little behind schedule. Her sisters visited with daddy today and of course that made her happy. They decorated her room more (it is quite colorful) and she played for about 15 minutes walking around her room. So, the day went well and for that I am thankful. She won't eat anything though, only had 7 ounces of water. She did get this Teddy Bear that smells like chocolate today (like a big fudge brownie) and I thought, that would get her hungry. She does like the smell of him but he came with some M&Ms and she wouldn't eat them. The room smells great though:) Please pray for Katia that she will feel stronger and she will PLEASE eat something. I just want to see that her digestive system and everything is not hurting by not eating. I just feel so bad to not see her eat. That is so not like her. At home she is always this 9 meal a day child, no joke! Now, this...
I also just learned a little girl I have kept up with earned her precious Angel Wings today after a battle with Leukemia ALL. Please visit her site. Her name is Taylor H.
Angel Taylor
I am sure her family will appreciate your kind words. Love, Tracy

PS I am so excited about this week with postcards coming in. It sounds like people are really starting to spread the word around and get them from all over the nation and even the world. Thank you. Sharayah and Tatiana are into this too looking forward to decorating the postcard posters:) Tatiana turns 11 on Thursday which will be birthday number 2 here at All Childrens Hospital. She is handling that very well as long as she gets to make it here that day. Hopefully Katia will at least eat some cake. Last time she went through chemo treatments, you could always get her to eat cake but so far no luck. We had about 4 birthday parties for her last time in the first few weeks of treatment:) Hey, whatever works!

September 14, 2003 9:25 AM
Last night went relatively well. Katia fell asleep good before Myron even left for the night. She was just very tired from all of the day's activities:) In the night she spiked a fever of 102.4 so she is on another antibiotic now and the isolation period has again been extended. We are supposed to start chemo tomorrow and I am pretty sure she will depending on the blood labs they sent off to be tested. She keeps getting these fevers without reason and no signs as to why. This time, she was on antibiotics (2) when she spiked again? So... We will see:) She is happy today but feeling kinda puny and shaky but we will have fun doing something today. It is my goal each day to make her have a belly laugh! Love, Tracy
PS Thank you to those of you who are mailing out the postcards. I am hoping we will have quite a few to make a really nice project of it (therapy for me too)




September 13, 2003 9:05 PM
I have wanted to update so bad today but we have just been having so much fun and I didn't want to stop! First, Jalen's Grammie (Terry) and her friend Mary came to visit us and I was so happy to finally meet them in person. I have quite a bond with them because we contacted eachother while Jalen was in the hospital. They gave Katia Christmas in September!!!! I mean, Katia was just so tickled and she really enjoyed their visit. We all had fun:) Then, soon after they left (thank you so much Terry and Mary for your visit) Myron, Sharayah and Tatiana showed up! Myron and Katia got to show eachother their collected hair in their ziplock bags (I will post pictures soon after this update). Yes, Myron did most of his hair and will continue to do it more and more. Katia was very tickled to see Daddy's little bag. She lost quite a bit of what was left of her hair today so now it is about 95one. THEN, we had balloons delivered from someone that is an AML survivor and that was just a great pick-me-up for all of us!(Thank you so much Linda for sharing your story with our family). Katia had balloons delivered yesterday from our dear friend Holley (thank you) and Myron has brought her some. Needless to say, if we wanted to escape, we could fly away. Okay, it just gets better. The kids were blowing bubbles with Katia and she was just belly laughing and laughing and they were all singing songs together and laughing. I was just in awe at watching the three of them just be their normal happy selves all together:) That lit my little heart up. I really needed that. That is better than any medicine! Katia was feeling so great! Okay, do you think it could get better? YES! They came in an unplugged Katia totally from her IV pole so she was free for 3 hours! She said, "I am better now so we can go home." Okay that really broke my heart to hear. We let her walk around in the room and play with us and blow bubbles and go through her toys and just be herself. At first she was shaky and unstable but then for about 45 minutes, she played! After a while she got shaky again and I picked her up and just held her close with no IV lines to watch out for or a pole to drag around. I just so much enjoyed today. I took a bunch of pictures and Jalen's grandmother took a bunch when she was here. We videotaped this evening of the kids playing and singing and laughing and I think we all know what a treasure that video will be to us over these next few weeks. Today was just a super high day!!!! Thankyou so much for today Lord:)
I want to thank everyone for all your prayers and support because that is what makes this type of happiness in this time so possible. Thank you so much for just coming by and checking on us. Thank you so much for doing what you can to cheer Katia and our family up. Thank you so much for trying to help find a cure for cancer. THANK YOU! Pictures are going to follow this update in a few minutes. Love, Tracy
PS I will probably have to post a few pictures a day for a few days cause I took a lot today:)
OH for the postcards people are sending (we are trying to collect postcards from all over the US and different countries) the Hospital Address is at the bottom of the webpage. Thanks:)

September 13, 2003 10:25 AM
The night went well with no fevers:) Basically she has lost all her hair now except for some stubble. She has been very loving this morning to me which just warms my heart. We are still waiting for some more tests to come back for the cord blood. They are worried there may not be enough cells to use for Katia. The adult donor they have let that one go because some of the numbers that came back show too much chance of rejection. There are preliminary numbers that come in first and then they do further tests and further tests as the numbers come in. Of course they would love to find a perfect match for Katia so they still continue to look. The idea of having enough cells in the cord blood is that they would be able to give her the transplant and hold onto a few extra bits in case Katia doesn't seem to be grafting after 14 days to 30 days so they could give her an added boost of cells again. I am confident that God will provide the right match for Katia so in the meanwhile we just have to prepare her for transplant and make sure we are getting rid of all the leukemia cells in her marrow, blood, spinal fluid, brain and eyes. I start each morning testing her vision and she always passes the tests with flying colors:) She is in a very good mood right now. I look at her and it just seems like yesterday her hair was all gone. It is amazing how quick her hair grew long again. Hopefully that will be the same thing again:) I know this update seems a little choppy but Katia is talking to me so I keep stopping and chatting with her. She LOVES to talk:) I LOVE to hear her talk:) Thank you for checking on Katia and keeping up with her progress. Thank you for praying for me to have the strength to deal with this. I can tell you those prayers are being answered:) I am trying to keep the room completely sterile. I spend a lot of time spraying lysol, wiping things down, and keeping hair cleaned up from her bed and her clothes. I have become very attached to my lint roller (perfect for picking up hair) and I go through a lot of Lysol wipes and Clorox wipes. She is so pretty:) I keep looking at her:) Well, I will go now so I can play with her. I enjoy her good moods and laughing. Love, Tracy
PS Remember we are trying to get postcards from all of the places you live and visit to decorate some posters in the room. I know there are quite a few already on the way so help us give Katia the WORLD:) If you have family or friends that live abroad or in other states, let them know what we are trying to do. I just think that would be a very beautiful project to work on. Also, if anybody would like to send Katia a "Letter from Mickey Mouse" or other Disney characters, please do. I think that would be cool and she is young enough to really pull it off and make her think they are right from Disney:)
Love, Tracy



September 12, 2003 9:25 PM
We had a great afternoon. Katia is still running some fever but she was playing with her daddy and me. She was so happy when he arrived this afternoon. Her sisters went to a football game with some friends of ours so it was just the 3 of us. The first thing Katia wanted to tell Daddy was to shave his hair. She spent the afternoon pulling out chunks of hers. All of the sudden I think in her 3 year old way, she decided to accept the fact it is going to fall out so... make a game of it so she was pulling it and throwing it on the pillow. (I am about to post pictures of this)
Anyway, Daddy and Katia read books and put some stickers in a book she got today with the Carebears. She did eat one spoon of her toddler meal right when daddy was leaving so all of today she had that and about 5 marshmellows. She dropped right under a pound in one day. Her chemo is "supposed" to start on Monday but I think that depends on this fever. Today it got up to around 103. Hopefully it doesn't spike tonight or they will have to add another antibiotic and take more labs to test. She really shouldn't be running a fever right now due to chemo. Anyway, let me add the pictures and then I will go check out the guestbook entries. I love checking that. It always makes me smile and rest assured so many people are praying for her. Thank you to those that are sending Katia her mail. She really enjoys that so much. I love to see them walking up to the door. I tell her, "OOOOOHHH it is mail time!" She gets so very happy and we make a big thing out of opening her mail. She had a fun evening. Even though we are locked in this room (at least she is which means me too basically) she seems to really make the most of it and not complain:) Love, Tracy



***

September 12, 2003 11:40 AM
Well I thought first as to whether I should start with the negative or the positive but I believe in ending on a positive note. The only negatives today is that Katia's hair is now so thin, you can see her scalp BUT it is a pretty little scalp. I was reading in the guestbook and to Sherry C., I will have to say that Katia has an "onion head" (that was funny). I also am not being able to get Katia to eat anything but a bite of marshmellows here and there but Daddy will be on his way this afternoon. He drives 45 minutes both ways each day, sometimes twice. He really loves his little baby and he knows she waits all day to see him. Myron is the light of Katia's eyes and he is the light of hers! Katia has been the center of our little family since each of us first saw her. It is amazing how loved she is!!! She is never one to upset anybody or be a burden. She is always a delight and very playful and huggable and just so kissable!!! (The doctors and nurses may not always agree)
Okay the positives. We had a good night sleep, although Katia spiked a fever but she was very cooperative to take the tylenol from the nurse so that was great. She is back on her antibiotics now and I pray this doesn't postpone chemo, I don't think so. KATIA ALSO HAD A POOPIE LAST NIGHT!!!! It had been a week and a day since the last one so we are always happy to see that. This morning when it was time to take the tylenol I asked for chewables and she LOVED them. That makes it easier! I am now very confident with the decision to do all the radiation before. I prayed and prayed last night and I woke up this morning with an overwhelming amount of assurance in that decision. Another positive thing is the guestbook!!! I am so touched by ALL the messages and wish I could really take the time to respond to each and every one of them. I want you to know I am so appreciative of those. Katia had some balloons delivered today (thanks Holley) and she just got all happy with those. She got her mail, which we haven't opened (she is waiting for daddy) and she had 2 soldiers visit her today. They are running for her in the Team In Training Marathon to raise money for the Leukemia and Lymphoma Society. This morning has been a very good morning and I pray the day is very good! I think it will be even with the fever. Katia is smiling more. I know we should really relish these times since she is about to go through so much but I just feel that with all the support we are getting from all of you (which keeps me and her feeling very positive) and with Katia's strength (some people call it temper) that we are going to do very well throughout everything. We are planning to shock everyone and just do great!! Katia has so much love backing her up and I have all of you to thank for that. Your love and support are a huge part of my attitude and strength. THANK YOU!!! Thank you so very much for visiting the site, signing the guestbook, sending Katia little Love Packages, notes and letters to me, and just all of your prayers. Thank you for passing Katia's name and site on to those you know and thank you for your love, care and support. God bless each of you abundantly:) Love, Tracy

September 11, 2003 8:40 PM
Okay, one more update today to share some information about the radiation treatments for Katia. From what the doctor is saying and planning, Katia will get her chemo next week and when it ends, about a 2 to 3 day break if she is doing well, then 2 weeks of brain and eye radiation once each day (yes this has me very nervous) and then she will probably go back on chemo to make sure she doesn't relapse before transplant and then right before transplant (we still don't have a date or anything concrete on that) she will get 3 days of full-body radiation two times a day. The main concern to them is for her site because the eye radiation can cause cataracts and that would mean a lense transplant of the eye. My main concern is all of this is going to just weaken her down to almost nothing and then she will have to face transplant. I am very nervous about all of this and the fact she will be having her regular problems following the chemo and then have to face all of this radiation. We are also told there are high possibilities of brain damage with the direct radiation to the brain but they can't wait any longer to do it. The good thing about radiation to her eyes is hopefully it will reduce some swelling in her eye sockets which are causing pain and pressure. I just look at her right now asleep and I am just so sad to know everything she will be expected to endure. Please pray for her to have all the strength she will need and then some more to face all of this. Love, Tracy

September 11, 2003 4:45 PM
I just wanted to update before the evening gets too hectic. Katia is in a completely depressed mode today. Her hair is just falling out all around her, even if she just sneezes or touches her hair. I had to cut it shorter to her head because it was just dropping off into her eyes and nose and mouth and causing her to scream and try to pull it off. We also found out that we can't go on a "Dream Fund" trip to Give the Kids the World at Disney because she won't have any breaks before transplant. They have chemo, eye radiation, brain radiation, chemo and then full body radiation scheduled all in next two weeks if all goes well (whatever well means). I am upset about not being able to take a break but I do understand. I just worry what will happen after transplant? How sick will she be? How much damage will all this radiation cause? I have to worry about her survival and I just really wanted to see her totally happy and Disney is just her favorite thing. She loves to meet the characters. At the Give the Kids the World park, the characters come to you. You can eat breakfast with Mickey or lunch with Pooh, whatever. You can visit the park if you want and you go straight to the head of the lines. The Give the Kids the World area has apartment type living, your own little mailbox:), icecream parlors (free), food places (free), arcades, all sorts of stuff and they just treat you like an absolute queen. If the child is too weak to go to the park, they practically bring the park to you. BUT, we will have to plan for after transplant. I am getting quite nervous now and will probably faint when they finally set a date. It is just alot of stress emotionally and mentally to think about all that is ahead for Katia's little body in the next few weeks. Please pray for ME for peace of mind, comfort in the fact that God is in control, and courage to go through all of this with a positive attitude that Katia really needs to see in me. Thank you for checking on me, yet again today:) Love, Tracy

September 11, 2003 7:45 AM
"Dear Lord, Please allow people to realize how precious life is, how important it is to reach a loving hand out to those "in need" and those just living day to life. Please help us to see how equal all of us really all. We all live with the beating of our hearts and blood through our veins. Allow us to find the good in people and to have a positive outlook in our day and for our future. I ask you to not only bless America but all of the world and those who live in our world. Bless us even though sometimes we don't pray to thank You for the blessing we have in our lives each day. I pray for the families who lost loved ones in the September 11th attacks and for those who have lost families in any way through the years. I pray for Your guidance in all of my decisions and all of my thoughts and actions. Thank you for all you have blessed us with, for the many friends You have sent our way, and for the reassurance you place in my heart each morning and throughout the day. I feel your presence in my heart. In Jesus name, Amen."

People ask me how I keep myself feeling positive and upbeat and that is how I do it. I pray and pray and pray. I have many moments throughout the day where I am faced with something that could break me down but I pray for strength and as I ask for strength, I thank God for the strength I know He is about to give me. I am watching some of the news coverage about September 11th and I see the family members speaking about their loved ones that perished that horrible day. I have heard many people say, even directly to me, that it is harder to suddenly lose a loved one than to gradually lose a loved one (like through Cancer). I do not believe that. I have known plenty of families who are sent home on hospice knowing there is no further treatment available and given weeks or months to have their loved one. They sit and watch, knowing their child or parent is slowly growing their angel wings but nobody can prepare for the death of a child or loved one. When that moment happens, it is sudden. I think when things are stretched out over a period a time, the grieving is just longer lived. When someone is lost suddenly, it throws everyone else involved suddenly and all of the sudden the person you maybe talked to on the phone yesterday doing perfectly fine, is now no longer there. I wish there was no death, because no death is easier or harder to face. The death of a child, parent, or friend even whether sudden or through a process of time is difficult no matter what. The families of those lost on September 11th not only had to grieve but grieve publicly. They had to shelter their children from the news coverage and the surrounding grief all throughout their families, cities and the world. The only thing we can do, since we can't stop death, is to lend a hand to those who need it. Don't go without saying something because you don't know what to say. Never stop using the name of someone who has passed. Just let the person grieving know you are thinking of them and although their loved one is no longer with us, they were here and they touched many lives.
This day is another big day for my family. A year ago today, Katia completed her chemo treatments and we prayed she would always stay in remission. Now, she is back in the hospital again fighting for her life. This time the fight is harder and we have to move quicker to heal her little body.
Thank you for checking on my baby and me and my whole family. We so much appreciate it. Thank you for following the links to the other children on this page. That is very important to me. We are all in this fight together. I have become very close to alot of these other Cancer families.
"Dear God, please bring a cure for Cancer."
Love, Tracy

PS Remember, we are trying to collect postcards from all over the U.S. and the world to decorate some posters to hang up. We would love to see a postcard from where you live or visit:) Love, Tracy




September 10, 2003 10:50 PM
I have just noticed Katia is losing quite a bit of hair in her blankie, bed, and on her pillow. I use a lint roller to pick it up so it isn't such a big thing to her. I guess her hair will take maybe 10 days to fall out from now. Last time it was already 50one at this time so she is holding onto it longer. She will start another round of chemo next week so that will definitely push it the rest of the way out. I just don't want her to be upset. She is sleeping soundly right now holding onto a little wooden ladybug:) Love, Tracy

September 10, 2003 5:52 PM

I have just learned that Julia has earned her angel wings this morning. Please pass on some encouraging words to her parents. This must just be devasting. Here is Julia's website... Julia's Website


We just changed the dressing around Katia's broviac and hopefully that will help. She still is saying it hurts. I hope it doesn't come down to having to pull that line out and put a new one in. That would mean another surgery. Please pray her broviac will stop hurting her.
There is something I would like to ask. I hear from people all over the world and I think it would be very pretty to put up postcards of all the places Katia's friends live. If you can find a postcard that you would like to send, we will put them all on posterboards to hang in her room.
She is saying she is hungry but as soon as she starts to eat, she is getting sad and wants to lay down. She says when she is sad or mad or tired. I am glad she can communicate her feelings better this time than last time. Tatiana just reminded me that we will again be in the hospital for her (Tatiana's) birthday. Last year we were home but at 2:30 AM on September 18th, Katia started throwing up and we were back in for quite some time. We had just finished Katia's last chemo round on September 11th and went home on the 13th. We had Tatiana's cake and presents all ready so I just left her presents on the table for her and we felt so bad. Sharayah's birthday and my birthday we were in here to last year. Tatiana is going to be 11 years old. She is Katia's favorite playmate!!!! She has been with me today cause she missed her schoolbus so I decided to just let her stay home and come in with me when I came back from Tampa. She makes Katia very happy playing:) I will try to post some new pictures this evening if all goes well. Love, Tracy
PS I ended abruptly on the last update because her doctor came in and I really needed to discuss some things with her. Sorry:)
September 10, 2003 3:50 PM
I am sorry to have not updated earlier. I actually went to Tampa for a few hours this morning to organize some paperwork, take a real shower and just see the house! It was wonderful to go but my heart was sad because Katia wasn't following me around like she always does. She is my shadow at home. I came back and she had fun with her daddy. They were listening to a Raffi CD and dancing together and he read her books and played with her toys. Since we can't take her out of the room, he couldn't take her to the bridge. BUT, they had a nice time and he fed her a whole Gerber Graduate Meal!!!!! She is having a much better day. Every once in a while she will clam up and just hold her chest. I am having the IV team come up here to change the dressing on her broviac. There is some blood on it and maybe it is bothering her. Plus one of the medicines she is on could be causing bone pain so maybe her chestbone is just hurting. She is really enjoying the volunteers delivering her mail and they are really getting a kick out of Katia's reactions to mail. She perks up for the "mail people". Thank you so much for thinking of Katia and I very much appreciate the cards to me with the very kind and encouraging words:) Love, Tracy

September 9, 2003 5:30 PM
Just a moment ago, the child in the room next door to us passed away. Please pray for his family...
There has to be a cure found for this horrible disease! This is just sickening to see it take people away. Not just kids but anyone.
I want to ask again for anyone that hasn't yet and can, to please support the Light The Night Walk with the Leukemia and Lymphoma Society. This society does so much research on a daily basis and is making huge strides towards not only a cure but better treatments in the meanwhile offering a higher quality of life while on treatment. Our walk is November 8th and I pray we can make it but no matter what I want Katia's team, "Katia's LifeBugs" to raise a good amount of money towards this cause. I am mailing in the checks we have received already and for those of you sending checks now, I will be mailing them on a weekly basis. Checks should be made out to the Leukemia and Lymphoma Society. You can make a note at the bottom of the check "Katia's LifeBugs Team". There was a date set up to go in and hand in what checks you have received but with so much going on, I want to go ahead and mail these in. Every dollar counts, even $5.00 gets us closer to a cure:) I have said many times, I want a cure to be found in Katia's lifetime. I want Katia to get up in front of her high school class and tell them about her fight with cancer but assure them she is cured and they don't have to worry about it and their kids won't have to worry about it. Wouldn't that be just fantastic!!! I look around here and just see parents day in and day out suffering because they can't help their children. That is a horrible feeling for a parent. We have lost some awesome kids to this monster of a disease and each time, it upsets me so bad. When you see one child lose their fight, it just puts a sad feeling throughout your whole body. We are all dealing with the sad truth it could be any of us up here being led of the floor...
I don't want to think about that anymore right now.
I am sitting here looking at cards we have received and Katia's toys on her bed and that her little body is wrapped in T-shirts sent with bundles of love. I just feel so priviledged to be able to share Katia's story with each of you. Katia is just a sweetie pie and I want everyone to know that about her. Love, Tracy

God is in control of all things.


***


September 9, 2003 around 3:00 PM
Well a few things. Katia is soundly sleeping right now. She has been playing in her bed a lot more this morning than over the last week so that is good. We are going to probably start her next round of chemo next week and go ahead with the eye radiation and brain radiation right after that. This all has me very scared and nervous because I understand this is going to really break her down. Then before she does have transplant, she will then go to full body radiation (more). So, these next few weeks alone are going to really be trying. I want this done though to ensure that when the transplant does come through (they are still searching for a better match each day) that she won't relapse after transplant because of some tiny bit of leukemia that was hanging around in her eye or brain. There are a few matches they are looking at but they are really trying to get a closer match to her. With everything she will be going through, we can't take a chance on her body rejecting this marrow. I just wanted to update while she is asleep. I know many of you check on Katia throughout the day so you know how to pray for her and that is just so uplifting to know that so many detailed prayers are going up for my little baby:) Love, Tracy

September 9, 2003 9:00 AM
Day 14 of starting over...
I just wanted to let you know the night went very well. Katia slept peacefully, I got sleep and that is just so needed:) She has her thumb wrapped because she has just really torn it up since her counts are zero. I figured she wouldn't be able to fall asleep or would wake up wanting it but she didn't. She woke up in a very good mood actually saying, "I am having a good day." That lasted about 30 minutes and now she is back to being very grumpy and crying at anything but hey that was 30 glorious minutes and I appreciate the good start to the day:) Thank you God!! The medicines really seem to have the itching down to a minimal amount. She still itches but not so bad. She still isn't eating but she is holding on to a bag a marshmellows (she did all day yesterday too) so maybe that is a start. She seems to have a little appetite bounce up in the late afternoon hours. I can't type very well, no coffee this morning yet. I wanted to update about the night so you could rest easy knowing we got our rest:) Thank you so much for always checking on us and signing the guestbook. That is one of the first things I do each morning, check the guestbook:) That is just such a nice thing to read over and I really really appreciate all your notes of encouragement:) Thank you so much each of you!
No news on Donor status...
No news on eye biopsy plans...
No news on brain or eye radiation plans...
No news on when next round of chemo starts...

But, I will keep you updated.
Love, Tracy

September 8, 2003 9:55 PM
I just wanted to update to let everyone know that after a very rough day full of emotional outbreaks from Katia, a lot of itching and a lot of pain, I think we may have the right mix of meds going right now. She ate half of a Gerber Toddler Meal without throwing up, her pain in her eye seems to have lessened some and her temper flareups (although still very much there) are fewer and farther between. She is still itching but not as much so hopefully all these marks she has from tearing at herself will heal soon. One area she scratched is infected. She does have an infection in her stools so we are having to stay in our room now, for how long I don't know but last time we were locked off was for about 14 days. Hopefully this won't delay the next round of chemo. I don't want to risk a relapse again. Her heartrate and oxygen levels are remaining normal and right now she is sleeping soundly:)
All of this is only possible because of prayers and God's grace. I also appreciate the fact the doctors and nurses hear my opinions and work with me as best they can. That is so important. Katia's hair is hanging in there for the most part.She is shedding but not a noticable amount yet. Her hair is precious to her but I think she will quickly adapt. Katia had a very fun day of mail. She was miserable when it arrived and couldn't sit up to participate but this evening she was going through things and really having a lot of fun. I waited all day for a smile and tonight, both sides of her mouth headed upward for a big smile. That just lifted my WEARY heart. This was a hard day for me. I don't want her to get out of hand but I don't want to correct her much either. If I call her down, she says, "Mommy don't love me." and she says it over and over. Then she ask for kisses and hugs and says she is sorry. I know she doesn't mean to really act up, it isn't her nature. Katia is a sweetie and loves to say she is "Mommy's talking BABY". She is so squeezable and huggable and kissable:) I just enjoy all my time with her and I never wish I could go away from her. I don't mind being here with her at all. Thank you so much for your guestbook entries. Today I read them a few times through again and again for encouragment and some very needed inspiration. THANK YOU SO MUCH for taking the time to sign:) God Bless you!!! Love,Tracy

September 8, 2003 11:55 AM
Right now Katia is so mentally worn out and physically just an itchy and painful mess. She is just beyond irritable and just being downright uncontrollable so we are changing her drugs around to see what will happen. She tearing her skin so bad. Her mail just arrived and she got so happy but then doesn't want to open anything cause she is just uncontrollably crying right now. Her heart rate keeps dropping down and so does her oxygen level but when she isn't crying her oxygen level stays normal so we need to get her under control. She will probably be more tired with the new drug but that is okay cause she really needs a break right now. I feel so bad for her, my chest is literally hurting. Everything I do upsets her and sends her into a screaming fit. She is resting right now but that last about 5 minutes and then she wakes up raging. Pray for peace in her little mind and that her body will treat her better. Love,Tracy

September 8, 2003 9:40 AM
Last night was pretty long. Katia was getting a blood transfusion and her heart rate kept going up and down from 104 BPM down to 72 BPM so that was keeping me nervous. But, we finished the transfusion finally after slowing the rate down that it was going into her. She is still dropping some today even though she is awake but my "guts" tell me she is fine:) She is in a better mood today but which is GREAT! She is still broken out quite a bit in rash and her stool samples came back positive for infection. I don't know what they are going to do about it this time around but they may just let it ride its course. I just bathed her and washed her hair (which hasn't been falling out) and she looks so pink and pretty today since she got blood. I am going to try to take pictures if she feels well. I don't like to post pictures of her looking miserable. I appreciate each and every guestbook entry. They have become such an important part of my day and they help me keep a positive attitude. I feel like I am not in this alone but with a LOT of support:) I will update later today about what I find out from the doctors. Love, Tracy

September 7, 2003 7:40 PM
Well, we have been told two things today. First, not to get over excited about the donor because there is more testing and more matching to be done. He is a 5 out of 6 match so far but there are more things they are concerned with more than that number since it isn't cord blood so... we have to wait to find out more BUT Katia's Central Nervous System has reached a decent level of REMISSION!!! Those are preliminary numbers but it looks like she is responding to these chemo rounds. She responded well last time around so it is nice to see she is responding again. We are still not sure about the Bone Marrow but it means with all these bad reactions to the chemos, at least her body is responding in some good ways:)
Even the doctor was surprised at those results. Again, we don't want to get overexcited with that because so many other things are going on but it looks like things are improving in some things which gives us a LOT of very needed hope. I am going to keep trying to update this page througout the days. I know right now we are at a peak of positive things and I like to share that with you because so many people have shown so much love to Katia so today has become a good day in that since:) Katia is in a lot of pain right now with her butt. There is a lot of irritation and she is still itching a lot. She did get her spinal chemo today so we are moving ahead with that:) Thank you for checking on us. Love, Tracy


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September 7, 2003 9:55 AM
Please pray for little Katia. She is in so much pain with her eyes right now, words can't describe. I am having them up the morphine but of course that is like an act of congress! Plus she is saying the lights are hurting her. She says it over and over. The lights in the room are all off and the blinds are shut so this is worrying me. I am praying there is not serious damage going on to her eyes / sight right now. I just wanted to update again so the prayers can be specific:) Love, Tracy

September 7, 2003 5:35 AM
Well I wanted to wait to update so I could kind of think some things through and not be getting disturbed. First of all, Katia had a very restful night last night. What woke me up this morning is her gasping for air but just a couple gasp and then she was back to normal? Yesterday was very rough until around 6PM when Katia had some Cortozone through her IV. That seemed to help with the itching and the rash some. She had it every 4 hours, 3 times. She is also on a nutritional supplement through her IV, 2 actually. These are all the medicines (through her IV) she is getting. Other than IV meds she is only doing 2 mouthwashes (which just gag her but help mouthsores). IV MEDS: TPN (nutrition), LIPIDS (nutrition) GCSF (Immune Builder to bring blood counts back up), Diflucan (to fight yeast infections), Cefepine and Vancomycine (antibiotics) Morphine (pain), Narcan (to fight the morphine itch), benedryl (to help with itch), and Cortozone (to help with itch). She has a pretty decent size IV pole to support all the medicines and is connected to quite a bit of lines into her broviac. (She considers this nothing out of the norm). She looked fine going to bed, the rash was fading. The nurse came in around 4 AM and Katia was red as a tomato again but asleep. She had a cortozone dose again and looks okay right now. The surgeons are supposed to come look at her broviac site and surgical insertion site in the next hour. Okay, the MRI results... Well the MRI shows that she now has growth in both eyes on the optic nerves and also in the tear ducts. They don't really know the significance of this so she will need another eye biopsy done, when, I don't know. She will definitely have radiation to her eyes but I guess the biopsy is needed to say how much. Last night she was crying and I just wanted to make her happy cause now I worry so much about her eyes and I don't want them to have to make tears to cry. This is just a lot for her and all of us to deal with. I really can't say what treatments lie ahead for little Katia but I know these are the good days and they suck already. The doctors are discussing a lot of things and then they will always run it by me. I told them I want to be included on decisions and they respect that. I am not a doctor but I do have my gut feelings on things and now looking back, I wish they had followed my gut on a few things more.
GOOD NEWS! We may have a match. Preliminary results show one good match, an adult donor which seems to line up pretty good with Katia's numbers. It is a man and that is really all I know identity wise. They will need to find out if he is still available and then do further testing. The bad thing about adult donors is to find them and tests them more and see if they are still willing. Cord blood is just there and waiting and already tested completely so... The good thing about adult donors is if Katia's transplant seems to be weakening and she needs more, they can contact the donor again or even at the time of the marrow donation, take more. This way, in case Katia needs a "boost" of marrow down the road, she will have what she needs. If it is cord blood, they would have to search again because once the cord blood is used, there is no more. So... that is hopeful, not final, but hey, it is hopeful and we need that right now. With just one match there, I pray the person is able to be located and still willing to donate. It is very important if you do sign up for the registry to always let them know if you move or ever wish to be removed from the registry for any reason (just a note of advice). Well, I think that sums most things up.
I want to thank everyone for always checking on us. I know I say this all the time but I am always so thankful. It just warms my heart so much to read the guestbook. Katia may be young to read and appreciate the guestbook but I do print it and put it away for her later. When she is big, that will help her understand just how many people jumped in and prayed for her and loved her. Katia just warms our hearts and seems to have warmed so many hearts and I am truly grateful for this. I love little Katia so much and I want everyone to know how special she is. All kids are special and I have met so many wonderful kids via Caringbridge, hospital visits and just many ways. I am glad to have a chance to know them and be a small part of their lives. Life is just so quick and passes us by and I really think we should take the time to know eachother. Ask people questions and really listen to their answers. Enjoy people's company and thrive on their knowledge and love. This world is full of awesome people. There are so many bad news on TV but there is so much good everywhere. We have really learned that by the responses we get and the outpouring of love. Katia loves to meet people (on her good days) and she loves the cards she receives. I have received some very hearttouching cards and I appreciate them so much. I want to put some new pictures up! So I better close off here but THANK YOU! Love,Tracy


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September 6, 2003 1:40PM
Well the itching really isn't improving and she is bothering it quite a bit. She did take a nap. They are going to add TPN to her so she gets nutrition through her broviac cause she just won't eat more than a couple bites at a time and in a day, it adds up to nothing really. We still aren't sure about the MRI results but she is just an itchy mess. They have doubled the dose on one of the itch medicines and that isn't making any difference and we keep running the benedryl so... She is starting to bleed a little in some of the areas that is irritated. She will fall asleep sometimes and not scratch so she is best asleep. I want to take her for a walk but she won't go, she says it hurts to sit up or stand. Katia is hard to communicate with but it really upsets her when you don't understand her. Well, I just wanted to put in a quick note when I have a few seconds...
Love, Tracy

September 6, 2003 9:04 AM
Well the night went pretty well. She did sleep. During the night her oxygen levels were dropping but then they came back up. She is on 2 antibiotics right now, anit-itch IV medicine to fight off the itch from the morphine and benedryl 4 times a day. She has sucked her thumb to where it is now tearing so we have a pretty sock on it right now (instead of wrapping it) to give it a break. She is quietly watching the Carebears. She seems to be itching about 1/2 as much as yesterday. The pictures I posted were from 4th of September. Yesterday was not a picture day. I take pictures all the time but I only post the ones on good days:) There was no more hair on her pillow this morning so she may have been having extra amounts cause she was scratching her head so much. Thank you so much for ALL your messages and prayers. Maddie, thank you dear for telling me about the "trapped ladybug" that became free. That warmed my heart. I asked Katia last night, "Are you going to be a big girl." She said, "Yes, mommy". I said I want you to get big and strong and go to school and graduate and get married." She said, "Married?" It was funny but I like the fight in her even when she feels bad. We should find out a few results from blood tests (about infections) and her MRI results. We found out she is allergic to one of the clear tapes they use on her broviac site so we have changed that and it does look a lot better. That was driving her nuts yesterday! She still has no appetite and if you try to make her eat, she gags and throws up. So... We are working on that. Thank you so much for checking on little Katia. I like the top photo up there. She was really clowning around. That is right before she started that "freezing up" thing but she was really having fun taking pictures by the different animals in the hallways. Love, Tracy

September 5, 2003 8:20 PM
Katia is peacefully sleeping right now. She is losing a lot of hair on her pillow, I just noticed that. See prayers work and are helping her sleep. I pray tomorrow is a lot better:) Love, Tracy

September 5, 2003 5:30 PM
Okay I am going to try to take this time to update. Katia is very very cranky today and extremely itchy from all the Morphine plus we found out she has an infection inside her line (broviac) and at the surgical site where they put it in. It is very red and puffy and painful. The morphine doesn't seem to be helping that pain at all. Her complaints are numerous today and she still isn't eating. You give her any food and she gags. She had a half a banana though so...
Her back is in a lot of pain but the doctor said that may be because of the chemo she just finished. She is on two antibiotics which hopefully will clear up these line and surgical site infections and she is covered with a rash all under her hair, her neck, her belly, and back. She is just an itchy scratchy mess. SO, the prayer request I am asking is that everyone pray that tomorrow is a brighter day. She did have her MRI today so we should hear about that tomorrow in the morning to know whether the tumor has grown and what the idea is for the radiation to the eye. Myron is trying to decorate her room with the cards she has received. We are in a private room now because of the infections which came just in time because she has been screaming most of the afternoon. She had a breakdown of screaming and kicking and telling me to get away earlier today and in the hall as we transferred from one room to the next. I am worn out right now. I did go outside while she was getting her MRI done just to get some fresh air (in the pouring rain) but it was nice to get outside. Thank you so much for your wonderful messages. I feel like I have so many friends when I read my guestbook. You guys really do brighten my day and make this better than it really it is. God Bless your wonderful kindness. Please know I am keeping you in my prayers. I am sorry I can't get around the sites too much right now but I do pray for you and think about all the wonderful children out there needing a cure to be found for this diseases. Katia is itching really bad so bye for now. Love, Tracy

September 4, 2003 9:07 PM
First of all, thank you so much for everyone's prayers. I have to see they really give me strength to deal with all of this. Thank you so very much for your guestbook entries. They are the highlight of my day. I copy them and save them offline so I can sit down and read them and they also give me such a sense of reassurance. THANK YOU. Last night was not very good for Katia at all. Her right eye (the one with the tumor) started swelling quite a bit and causing her a lot of sudden pain. That just came out of nowhere. It looked puffy in the day but then it just swelled up. During the night she had a very runny diaper and then around 8AM, she had a HUGE runny mess all over her bed. This made her feel very puny as she hasn't been eating or drinking anything for a couple or few days now. She is on IV fluids but...
And today has not been a good day. She isn't eating and she is just not at all herself. Sometimes she perks up and plays but mostly she is quiet. Today we took a walk out to the bridge, Myron was here, and on the way back she was talking and having fun and then just stopped dead in her tracks and was holding her chest and acting like she couldn't really breath. She wanted Daddy to pick her up and go back to bed. She was pretty non-responsive for while and that was just a sudden change. She has been holding her chest all day. Well, I changed the dressing on her broviac hoping that would make her feel better and it didn't. The not eating is really beginning to show and she has already lost over 3 pounds in just a few days. Then, this evening she was chattering and talking some sitting on her bed and in a good mood for the most part and again, she just froze and bit her lip and it started quivering and she was crying that she hurt and then just again became non-responsive to Myron or myself. She started getting red patches on her face so we called the doctor in to look at her. They ordered another echocardiogram which looked okay. That was to check the placement of the broviac. She is scheduled for another MRI in the morning to check the eye tumor and maybe a chest x-ray (I thought tonight but...) if the pain does not cease. She is getting ready to start a morphine pump to help with the pain but I just don't know where all of this is coming from and so suddenly. Her counts have really dropped off which they are supposed to. Chemo kills all good and bad cells. We are not going to get any breaks at the Ronald McDonald house cause she is getting too sick. They are checking her stools and blood for any infection and I think there probably is something that may be causing some of her problems. Too much and I am not typing well cause my brain feels pretty overwhelmed right now. I am nervous about upcoming radiations, the rest of the chemo rounds and then transplant because she is already starting to feel so bad and have so many problems. All of this would be hard on anybody, very hard, but she is so small and she really can't communicate for herself. I just hate seeing her feel bad and not really be able to make it all better for her. She relies on me for that. I kissed her chest tonight and asked, "Is it better?" She said, "No". Please pray for little Katia in your prayers and pass her name on to your friends, families and churches. My dream is for Katia to stand up in front of her graduating class from highschool and talk about her successful fight against Leukemia. I am putting a poem here that I wrote some months back just because it is how I feel. Love, Tracy

If Only for a Moment


If only for a moment,

I want to hold you tight,

I want to see your pretty face,

Treasure your very sight!



If only for a moment,

I wish to see you play,

Smile, laugh and run,

On a beautiful Spring day.



If only for a moment,

I will watch you as you sleep,

Eat a sugar cookie,

Or just play hide and seek.



If only for a moment,

I want to hear you sing,

See you learn to ride a bike,

Or soar high in a swing.



If only for a moment,

Let's do all we can do,

Cause here now and forever,

My sweet baby, I LOVE YOU!




Written for Katia by Tracy
Solomon (Mommy) * April 6, 2003






Mommy Makes it Better



The times you have a boo boo

On your arm or leg or toe,

Mommy makes it better,

And off to play you go.



If someone takes your toy

Or gives you a mean look.

Mommy makes it better,

Reading a story from a book.



When you go off to the doctor

And something has to hurt,

Mommy makes it better,

by calling you her "SQUIRT".



As you roll off of the sofa

And fall onto the floor

Mommy makes it better,

By kissing what is sore.



If Mommy has to go bye bye,

And she tells you that you can't,

Mommy makes it better,

By putting "Kissies" on your hand.



Now Mommy has a question,

If there's cancer in your blood,

Can Mommy make it better

With her kisses and her love?




Written for Katia by Tracy Solomon (Mommy) * April 6, 2003




September 3, 2003 1:15PM
Well I just want to put a mini update and then hopefully more later. (I don't know how "mini" this will be). The doctor came in and I talked to her and they really think the tumor in Katia's eye caused her to relapse. So, this time she will have radiation to that eye even though the biopsy last August showed it to be benign, it does accumilate blood and therefore could be causing a problem. Since it was embolized before her last chemo started, it may not be getting the chemo (this was my thought a year ago). She said it is just so rare for an AML patient to relapse in the CNS (Central Nervous System). She will also need radiation to her brain but they want to put that off hopefully till after transplant to give Katia's brain a little bit more time to develop. Radiation to the brain is just so damaging at her age and causes so many developmental delays so everyday she can go without it is just so important. As I type this Katia is just waking up and humming to her daddy's CD. That is so sweet. Music is so soothing to her and I plan to surround her with music to keep her spirits up so if we get a roommate, they will just have to deal with it! Anyway, Katia has been throwing up today still and is still not eating or drinking anything. She will finish this round of chemo today and there was word she could go to the Ronald McDonald house but now her doctor says no because Katia is getting sicker and with her counts dropping, she will only go downhill from here and she will be getting more chemo to her spine on Friday and then a week after that have to start round 2 of this chemo treatment. That will be a very hard chemo for her to tolerate. They are taking out one of the chemo drugs because her heart just won't be able to handle it but they will have a mix of chemos going in her. That is about all I can update. Katia is awake now and needs me. She loves the cards and packages she is getting. She LOVES them and so do the people delivering the mail. They enjoy seeing Katia light up! Thank you so much. I am slowly trying to get around and visit websites and see how everyone is doing but remember if there is anything you really need me to know, email me and I will get back with you. Please send pictures for our prayer book so we can keep everyone by face and name in our prayers. If you send a card or package, put your email so I can be sure to thank you:) Love, Tracy

September 2, 2003 3:00PM
Well another box just came in and Katia just lit up. She was crying actually when they opened the door but she was happy and opened the box. She got some ladybug candles and a book and some very cute clothes (Thank you Holley!) Katia is reading the book to Buster, her teddybear. Thank you so much!! We are going to go for our walk now. When we tried a while ago, she was kinda dragging but I think we will make it out to the bridge:) Love, Tracy

September 2, 2003 2:45 PM
Well first of all Katia just got some mail and she is so happy. She got a little package with a Teddy Bear Nurse Music Box. There was no name who it is from but I just want to say thank you so much!!! She loves it and so do the nurses:)
We are going to try to walk out to the bridge but she is having some pain at the moment.

We also got to meet the IG's MOMMY today. Thank you for coming by Aminah. Love, Tracy

September 2, 2003 8:38 AM
First, I have just learned Brittany has become an angel. Katia and I believe that children become butterflies when the go to heaven so they can fly free high in the sky and come visit the ones they love. I can't imagine what Brian, Patty, Christopher and Stephen must be feeling right now. I know this has been such a long road for them. I can't help but to always think of their family when I begin to feel down about our own situations. Please visit their site.

Angel Brittany


Katia is doing okay this morning. She hasn't eaten yet, breakfast is on the way. I don't think she will because she keeps gagging. She wants to eat (she has ordered everything under the sun to me) but she is just choking and gagging a lot. This really breaks our heart because Katia is known for eating. The other thing she is known for is she is so funny and happy and smiling all the time. Now she is depressed and quiet and just looks around or stares at you. Don't get me wrong, she has her good moments still of being happy and I am so glad she does but for the most part she tells you she is sad and just wants to be home. TV is great for distracting her but then a commercial or something comes on that makes her sad and missing home. Katia is very close to her family so she really misses Myron and the girls when they aren't here and a lot of times when the get here she is sick and can't enjoy their visit. Last night she was sick and quiet until maybe the last 10 minutes of their visit. I am lucky because I spend 24 hours a day with her so I am there for her happy times. Katia has become one of my best friends. We are together so much that we can talk and carry on conversations and I enjoy that cause she is funny and so sweet. When she really gets to talking it is amazing how she thinks. She says the nicest things that just bring tears to my eyes. She is so understanding of what is going on. She says the broviac in her chest is to push away the Leukemia and then we can go home and swim and sleep there. That is basically her wording. I hate that my 3 year old has to confront this illness and endure so much at her little age. She should be home running around and knocking things over. She was always putting finger prints and hand prints on the glass windows and doors in the house and the coffee table and Sharayah and I were always cleaning up behind her but since Katia had already been through so much, we enjoyed cleaning up. Sharayah and I both knew that she may end up back in here and not leaving those chubby little handprints everywhere. Yesterday Sharayah and Tatiana were cleaning house and they said they cleaned the windows. I asked Sharayah if she missed cleaning all the handprints and she just looked at me and smiled and said yes. Katia is everyone's little doll but our family is just like glue to her. She is so important to ALL of us and we love to spoil her with the attention she deserves. Thank you so much for checking on us and I will try to update later today.

Christina will be having her transplant sometime today so today will be Day 0 of her new life. Please pray for her. Love, Tracy

September 1, 2003 5:15 PM
Well today started off bad with some throwing up and not a lot of appetite. She finally had a biscuit and some bacon. Then we walked out to the bridge (her highlight) and came back to
the room for a bit when she became tired. We colored a few pictures to hang in another patient's room in the bone marrow unit and again returned to the room to nap and eat lunch. Katia had Spagetti O's!!!! That was great, she ate the whole bowl. There was a craft party in the playroom so we went for about 30 minutes and she did a pretty water color picture and she was tired so we came back and gave her the chance to take a nap. She has been asleep on and off for the last 2 hours. Just now, we had a CODE RED (fire someplace) which brought back memories of the other night when we lost electricity till 5AM. I just wanted to get this quick update in and I will try to update at the end of the night if I can. Myron and the girls are headed in here. They are bringing me dinner!!!! I haven't eaten anything but a biscuit so far so I am looking forward to dinner:) Please continue to pray for and visit our other friends' pages. Christina will have her Bone Marrow Transplant some time tomorrow so we are all anxious about that. I know her parents are both worried and anxious. Thank you so much those of you signing the guestbook. I read them over and over when I get anxious or bored. They really do help me so when you come by, sign so I know you were here:) Love,
Tracy
PS If you are out and about and see a pretty T-shirt size 4T or 5T that you think Katia would like, that would be great. She only wears T-shirts in here and she has one pajama outfit (I think there are 2 more on the way) but with her throwing up through this, I go through a lot of T-shirts each day. She loves characters and bright colors and they look cute when she is out in the hall. Oh, I cut her hair decently short today and won't cut anymore off now. I will just wait out the time until it falls. It is starting to shed so she will be back in hats. Hats too are always a great idea. People keep asking what they can send so maybe this will be a good idea.
It is raining a lot here so pray we don't lose lights!

August 31, 2003 9:30 PM
Katia is feeling quite puny right now. She was throwing up a bit but now she really doesn't want to eat dinner so there isn't anything on her stomach. They did take care of one of her meds making her sick by mixing it different so that is great. Tomorrow she goes on another chemo also and then another one will be added the following days. Most of them she did before but now the doses are higher. Her hair was shedding a little today but not enough for her to notice. I say maybe 10 days and it will start being noticeable and she won't let me cut it so she is going to have a mess around her. I pray she will let me cut it some cause I think it will be worse on her if she sees clumps around her. I don't know. I am just upset that she is having all this chemo pumped back into her. It is so hard on her little body and she doesn't understand how making her feel sick is supposed to make her feel better. Hopefully some mail will come through for her on Tuesday since tomorrow is a holiday. We did some crafts today. We made a butterfly and a door hanger. They are pretty. She picked the colors and I painted them. We also got to make a "LadyBug" card for another patient here and colored her a picture for her room with butterflies and ladybugs. Right now Katia is watching a movie she likes, "I Spy". She is tired but isn't going to sleep. Thank you so much for all the guestbooks entries. I really am touched by what they say and just to know you are coming by to check on Katia each day. I will really try to keep updating daily as the opportunity presents itself. Myron is coming over here each day and bringing Sharayah and Tatiana. It is about 35 miles each way so it is tiring and taking a lot of gas but Katia lights up and that is the only reason he needs to come visit. They brought me a homecooked meal today! YUMMY!!! Well, Katia has one more mouth rinse to use for mouth sores so I need to do that before she does go to sleep. Love, Tracy

August 31, 2003 3:15 PM
Katia is sleeping a lot today because she was throwing up and they gave her some medicine which makes her sleepy. I am trying to get her to eat. She did eat some oatmeal and a buscuit for breakfast but chemo makes her tastebuds act up and things don't taste good. I read the guestbook and am so touched by so many entries. Thank you so much for continuously checking on our LADYBUG:) Love, Tracy

August 30, 2003 9:00PM
Well today went fairly well. Katia is on her chemo around the clock. Tomorrow the add in another one. She has mouth sores so she didn't eat hardly anything today and what she did eat, she was forced and didn't enjoy really. I tried to get her to drink a milkshake and she won't do that either. Hopefully tonight is quiet. The chemo they are blending in tomorrow got her sick last time everytime she used it so... I just pray this time goes smoothly, fevers will stay away and she doesn't feel to bad. We really do try to keep her entertained because I firmly believe her happiness last time made her do a lot better than she would have normally done. Well since last night was so long, I am quite tired so I am oing to try to call it a night early as I can. Please keep little Katia in your prayers and thank you so much for continuing to check on her. Love, Tracy

August 30, 2003 7:55 AM
Well this is just a brief update. Last night the electricity went out in the hospital around 8PM or so and didn't come back on till 5AM!!! Well talk about confusion. The AC was off, no lights in the rooms, no TVs, etc. The cafeteria had to give all the food away to staff and parents because it would spoil. There was no ice or cold water, etc. etc. Then in the midst of all of this confusion, some had a Code Blue which means they have either stopped breathing or had some type of a life threatening emergency. That was just a few doors down in transplant, some child who just had a transplant a few weeks ago, one moment doing fine and then this nightmare starts. It was horrible and everyone was so concerned and stressed at the same time. As a parent up here you worry about all the children. We are all up here in the same fight, just different rounds. That went on for quite some while as we all stood in the halls where there was light and a little cooler, waiting to hear word how this patient was doing. I really still don't know but I know the transferred the patient. This morning things are getting back to normal, still some confusion but Katia is happy the kitchen is working. She seems to have mouth sores already from the chemo so I pray she will eat. She doesn't want to close her mouth even cause it hurts and she is crying and sore. Well that is what the night was like...
Love, Tracy

Hospital Address
Katia Solomon
All Children's Hospital
801 6th St. South
St. Petersburg, FL 33701


***

August 29, 2003 (throughout the day)
I am going to add to this little by little today and then place it on the site. Katia awoke hungry for breakfast so she had 2 pancakes, 4 pieces of bacon, some oatmeal (with medicine it it) and drank her water. She has a good appetite right now so I am taking advantage of that! Then we walked around a little bit and she did very well with that. We had a meeting with the Transplant Coordinator and talked about the preparations for transplant and what transplant will probably be like (everyone is different) and she answered a lot of questions she had. She put Katia into the registry to search and should have preliminary answers on Tuesday. I know there are a lot of people going to register and I appreciate that so much. Even if you don't match Katia, you could match someone else. I know people usually stay on that registry for years and years but when and if you do get called you are literally giving someone another chance at life. I think it is an amazing thing to be a donor. There is a lot of information to learn about transplant. I told the coordinator that I really like to know exactly what is going on, no surprises and she agrees with that. I am still not sure if she will start radiation right away or wait until right before transplant. I don't know what they want to do for the lesion. The lesion is opposite of a tumor. Instead of a tumor, there is a tear in the brain. I do not know a whole lot about this but of course I plan to learn all that I can. Through all of this, so many people have come to offer their support and happy packages for Katia and cards. This is just so uplifting and I don't think words can describe what a warm feeling that gives our hearts. You are amazing. As I am typing this Katia is pretty bummed and I think she is getting sick of being here, not feeling well, and tired of seeing me really. She is not so easy to amuse this time. She is taking some steroids to help the swelling in her brain and she has to take one of them by mouth. She hates the taste so I am sure she is not happy with me since I give her the medicines. Then she doesn't know this yet but she will get eyedrops two times a day to lessen the damage to her eyes from one of the chemos. SHE HATES EYEDROPS!!!! I am trying to get a TV in the room because we brought some videos Katia likes to watch over and over but all the TV/VCR combos are being used. I did cut a small amount of hair from her bangs and over her ears. I am going to do more and more over the next week until it is just shorter so it doesn't get everywhere falling out. She will lose it a lot faster this time then last. She was mad when I was cutting it saying she wants to be a princess and not look like a boy so I am worried about the effect of hairloss this time around. Last time it didn't bother her. Well, she is getting cranky here so I will finish this off later this evening I hope but if I don't add more, I will just post this update so far. Thank you so much for checking on Katia. Please pass her website information along. I enjoy people getting to know little Katia and I think she has a mission to make people aware of her fight and so many kids' fight with cancer. Love, Tracy

4:05PM My baby is now getting those horrible chemos pumped back into her. I hate those things and I pray her little body handles them okay. Please pray she tolerates the necessary doses of chemo and her body responds and goes into remission quickly.



August 28, 2003 8:30 PM
Well today went fairly well. Katia is still in a lot of pain in her bottom area and we aren't sure why. Her eyes were really red around them and puffy. The good news is we were the first ones to MRI today so she didn't have to wait long for breakfast. That really made the morning better. We waited almost all day for results to the MRI. They did two different things, her orbits (the eye sockets) and her brain. The eye doctor came in first and said the tumor in her eye doesn't show any growth and the optical nerves seem to not have any pressure on them. Around 5:00 PM, the oncologist came in and said the same thing about the orbits but that there is a lesion in the top middle of Katia's brain. They are not sure yet what or how serious it is. The main thing is to see how she responds to the start of chemo tomorrow. We should find out tomorrow also about whether this will make them want to do radiation or just wait to do the pre-transplant radiation. My prayer is that they will wait until after these first few rounds of chemo because they are throwing so much chemo into her to try to get her back into remission and I worry about it tearing down her body and radiation just being way too much. Katia is only 3 and is already having abdominal problems and rectal problems. Last time the chemo alone kept her sick for over a year in these areas.
That was without radiation. So... I don't know, like I said we will have a lot of decisions to make tomorrow and be hearing a lot of information about the next months ahead and prognosis. She is getting all the same chemo drugs she had before plus some new ones. Katia is in a decently pleasant mood right now but so much wants to go home and at her age she is not able to understand why we have to plug her into chemo which makes her feel really bad and we say it is to make her better. She doesn't understand why she has to be away from home. We have medicine at home for her. She will have spinal chemo tomorrow too where they inject it into her spine. Then they will plug her into chemo through her broviac. We have a major meeting in the morning with the bone marrow transplant team to learn what their plans are. I know my head will be swimming tomorrow and I pray Katia won't get sick tomorrow with the chemo. I know she will by day 2 or 3 into it but I pray tomorrow we can have a good day because of so many things going on. Please pray that radiation can be held off until the first few rounds of chemo are done. Please pray she goes into remission quickly in all areas of her body. Please pray the lesion does not increase in size or develop problems. Please pray Katia will keep her sweet and happy little attitude and God will give us all peace of mind and the ability to make the right decisions for our baby. Always pray for the doctors that they will follow God's will. Also, we are not in the hospital alone. There is a full
house up here so please keep all of these children and their families in your prayers. It seems so many people are relapsing right now. We just found out another kid that was in here before with her passed away a few weeks ago. As a Mom of a cancer patient, that breaks my heart in many ways. Katia's friend Christina is a few doors down preparing for her transplant. Another friend of ours Vanessa is right next door to her trying to recover from her transplant. She really needs a lot of prayers. She is going through most of this completely alone.
THANK YOU SO MUCH TO EVERYONE WRITING IN THE GUESTBOOK. I DO READ THOSE AND THEY BRING SMILES TO MY FACE, SOMETIMES A LAUGH, A LOT OF ENCOURAGMENT, SO MUCH ENCOURAGMENT AND MOST OF ALL I KNOW SO MANY PRAYERS ARE BEING SAID FOR KATIA AND OUR FAMILY. I AM ALSO SO TOUCHED BY SO MANY PEOPLE COMING FORWARD TO BE TESTED FOR THE REGISTRY. GOD BLESS YOU. I AM LEAVING PREVIOUS UPDATES ON HERE RIGHT NOW SO THE CONTACT NUMBERS WILL STAY THERE. REMEMBER YOU ARE IN OUR PRAYERS. I KNOW THAT JUST BECAUSE OUR FAMILY HAS BEEN SHOCKED BY THIS AND STARTING OVER, I KNOW OTHER CHILDREN ARE STILL FIGHTING THEIR DAILY BATTLES AND THAT IS IN MY HEART. I SHOW PEOPLE KATIA'S PRAYER BOOK. THERE ARE A LOT OF PICTURES IN THERE OF CARINGBRIDGE KIDS
AND THEIR DIAGNOSIS AND NAME. IF YOU EVER WANT US TO ADD YOUR CHILD TO THIS BOOK PLEASE MAIL ME A WALLET SIZE PHOTO WITH THE NAME AND DIAGNOSIS WRITTEN ON THE FRONT AND I WILL ADD IT. IT IS IN A SPECIAL PHOTO ALBUM WITH FOUR LADYBUGS ON THE FRONT. GOD BLESS EACH OF YOU AND
THANK YOU SO MUCH FOR YOUR CONTINUED PRAYERS AND SUPPORT. MYRON HAS BEEN HERE THE LAST 2 DAYS AND WILL HOPEFULLY BE ABLE TO BE HERE FOR A FEW MORE DAYS. WORKING IS GOING TO BE VERY HARD BECAUSE HE IS SO DISTRACTED BY SO MANY THINGS BEING ABLE TO SUDDENLY GO WRONG. PRAY FOR MYRON. HE IS AN AWESOME FATHER WITH SUCH A HUGE COMPASSIONATE HEART AND HE IS BROKEN BY HIS BABY BEING BACK IN THE HOSPITAL AND OUR FAMILY ONCE AGAIN BEING APART LIKE THIS.

THANK YOU MYRON FOR BEING SO WONDERFUL AND SO SUPPORTIVE OF ME. YOU GIVE US STRENGTH WHILE WE ARE AWAY. I LOVE YOU, BABY.

LOVE, TRACY



August 28, 2003 4:50 AM

I write to get through a lot of feelings. I am always writing something. Maybe in an organized way or just jotting notes down or researching and making notes. The best way I know to confront feelings sometimes is to write. This is what I wrote this morning. I got up at 4:00 AM and just stepped aside and wrote while Katia was asleep. My head feels like a rock hit me that fell from space. My heart right now feels broken. I can't think but yet I
have to think and make decisions. So I have to clear my brain somehow.

FEAR KICKS ME HARD AND BECOMES REALITY

Katia has been sick the last week or so. She has been grumpy, clingy, having headaches, no bowel movements, bruising, etc. She went to the doctor on Monday and had her regular CBC blood test panel run and the numbers are still in the norm but some numbers have dropped significantly lower. We were asked to come back the next morning for a lumbar puncture and bone marrow aspiration. We did. That took hours. Katia hates those procedures and with her incredible strength, she makes it very difficult to get done. It is done and we are sent home with the understanding the bone marrow looks clear. On the way home I am looking over the bridge into downtown Tampa really appreciating the fact we are going home. I was so
worried something would turn out bad that I had a bag packed for the hospital the last 2 days and I am taking those bags and my baby home. We get home and I make her a nice big lunch and she wants me to sit on the bed and eat with her. She had a hard time with the lumbar puncture so her back hurts and she wants to stay in bed. I do. I go out and update her webpage that all is well and we are home from her tests. Myron calls me on the phone and
I tell him about the visit. He needs to run a few errands. While I am on the phone with him,
my cellphone rings. I look at it and it says All Children's Hospital...I tell Myron I have to go and answer my cell phone and it is Katia's doctor sounding very stressed and quiet. She tells me Katia's lumbar puncture shows the spinal fluid is full of leukemia. Katia needs to return the next morning for admit, to have her broviac put back in
and start chemo immediately. I ask her how many Leukemia Cells are there and she said about 85That is high. The bone marrow they aren't sure yet. My heart aches and my breath is just taken away. I just look at Katia and think, "Oh my gosh, not this again. My poor baby hasn't gotten over all the last hospital stays, all the
last chemo, all the side effects, and not even over the day's appointment and she has to go back in and face this hell again." I can't think what to do. I call Myron and tell him the horrible news. He is devistated and heads home. Tatiana comes in from school and I tell her
and she starts crying. This is her little sister, her playmate, her friend. I still can't tell Katia. I call my dad and just break down with him on the phone. I have to let him know because he was expecting me to call anyway to let him know the appointment went well. Now what? Who do I call? Do I tell Katia or wait for Myron? What will Myron be like when he gets home? "Hold it together, Tracy." I go in and just look at Katia and she is just happy, belly full, watching Charlottes Web on TV. I go in and I sit down and I tell Katia. "Baby, guess what? We have to go BACK to the hospital tomorrow." She tells me, "I don't want my
back poked." I said, "No, we have to go and get your Broviac back and put more medicine in
that. You are sick inside again." She says, "But, I don't want to go back. I want to be home." That just breaks my heart and I think my heart leaked out warm stuff all throughout my chest. I tell her, "It's going to be okay. We can pray and everything will be okay." So we pray to Jesus. I talk and she repeats the prayer very sincerely. I have to walk out because my eyes are watering up and I can't let her see how upset I am. I call a friend to break down with on the phone and just moments after I blurt it out, Myron pulls up so I hang up from my friend. I go meet him and I he just looks beat down. Myron loves his family together. Myron loves his baby girl. He does not want to see her go through this again. Everything was going so good and she was so happy. He comes in and goes to see her and just
hugs her and holds her and tells her in his words about going back in. I know it is breaking his heart but he making her feel better. Then Sharayah comes home and Myron and I are in the living room just trying to breathe and figure this out. We tell her as soon as she walks
in the door and the family just feels cold ice thrown on us. It is just too much. We want Katia to just be well and feel well and all of us like seeing her happy and playing and dressing up, laughing, eating, etc. But we HAVE to do this. There is no choice.

We are back in the hospital now, a lot of tests later and a broviac in her chest, Katia is about to start this awful fight again. She had a complete breakdown last night when it was bedtime. She realized she wasn't sleeping at home. It all came back to her suddenly what was happening and she just cried and screamed and wouldn't look at me, then she would want a hug then she would push me away. She is too young to express her feelings but she is old enough
to feel them. She is old enough to know she just wants to be home. She just wants to not feel sick. She just wants to play and laugh and be like other kids. But she is again a
cancer kid, a kid fighting for life.

August 27, 2003

We arrived at the hospital around 8:30 this morning and since then we have had an x-ray of Katia's belly, her Broviac put back in with surgery, a chest x-ray, some blood labs drawn and getting a lot of information. I don't have a lot of information but what I do know is her spinal fluid is showing 93eukemia cells which is a lot. Her blood is showing 85eukemia cells and I do not have word on how many are in her bone marrow. This is a bad relapse. They
will start her chemo in the next few hours and she will be getting VERY high doses, more so then the beginning last time. With AML relapse, she has to have a bone marrow transplant. That is her only hope. First we will work on getting her back into remission and I do not know the possibilities of that. I have no percentages but I really don't rely on percentages when it comes to this. Every patient is different. Katia had a pretty rough
evening last night with quite a few questions which we didn't expect but she is very mature for her age when it comes to medical care. She did not want to come back to the hospital, she did not want another Broviac in her chest (that is a central line where she will be hooked up to her chemo and have her labs drawn from each day. She will also need that for the bone marrow transplant- it is a double cathetar line that goes into her main artery and
comes out of her chest so instead of poking her or putting IVs in her, she will just be plugged into the chemo and labs can be drawn without poking her). Anyway, the thing that really bothered it the most it seems was that she will again lose all her hair. She loves her hair. She likes to play with it, have it put up in pigtails, and she thinks her hair is beautiful. She is a little girl with 2 older sisters so of course she is into hair. Myron is very distraught right now but he is being very strong for Katia and the other girls. Myron also allows me to have my strength. I am a strong person especially when it comes to my family's health but I couldn't be that way without the support Myron gives me. I am lucky to have my little family. I am typing this through many interuptions so please excuse me if it sounds bumpy. This is her first day in so she is having all sorts of tests run. They just
came to examine her eyes to see about the tumor in her right eye. She is to have an MRI in the morning to see that tumor if it has grown and to check the rest of her brain for any other abnormalities. Please pray they don't find any. I am concerned about her head due to the fact she has had so many headaches recently. We are in a shared room right now with a girl that has Downs Syndrome and just relapsed with Leukemia ALL. Our friend Christina (her link is above)is here in the hospital that I have been you check up on. She just relapsed with Leukemia AML not too long ago and is in here preparing for a bone marrow transplant on the 2nd of September. This is one place you hate to run into familiar faces. Her immune system is already low and we haven't started chemo yet. So, I am not sure what the next few days will bring but I will try to update as much as possible. For a few days I will have a hard time
responding to emails or entries. I am not sure when I will be able to but trust me, I will be reading them and checking my email when I can. Please keep Katia in your prayers that a match will be find and her body will react well to chemo and get into remission without getting to sick. Thank you so much for all the guestbook entries. I was checking them all evening and this morning and I am about to read through more of them right now when I plug
this in and go online. I am praying for each of you. Thank you also to the people doing blood drives and bone marrow registrations. I have been so touched by the amount of people wanting to be tested. Love, Tracy

UPDATE AUGUST 27, 2003 6:50 AM
I JUST WANTED TO UPDATE ONE LAST TIME BEFORE WE GET OUT OF HERE AND SAY THANK YOU SO MUCH FOR ALL THE EMAILS AND GUESTBOOK ENTRIES. I MAY NOT BE ABLE TO UPDATE THIS EVENING BUT I WILL TRY. THANK YOU TO EVERYONE MAILING CARDS AND LITTLE GIFTS. I WISH I COULD ANSWER EVERYONE SEPERATELY BUT YOU ARE ALL SO SPECIAL AND YOUR ENCOURAGMENT DEFINITELY GIVES ME SUCH STRENGTH. I NEED THAT RIGHT NOW. PLEASE PRAY FOR KATIA THAT SHE CAN HANDLE THE TREATMENTS THAT ARE NECESSARY AND GOD WILL SHOW HIS LOVING GRACE TO HER AND OUR FAMILY. I KNOW HE WILL. I LOVE YOU ALL. LOVE, TRACY

UPDATE AUGUST 26, 2003 2:37PM
I AM SHAKING LIFE A LEAF RIGHT NOW. I JUST GOT A CALL. KATIA HAS RELAPSED IN HER SPINAL FLUID. SHE WILL BE ADMITTED AT 8AM TOMORROW TO ALL CHILDREN'S, HAVE HER LINE PUT BACK IN AND STARTED IMMEDIATELY ON TREATMENT. THE NUMBERS ARE HIGH. THAT IS ALL I CAN SAY RIGHT NOW. MY
HEAD IS JUST SPINNING AND I HAVEN'T EVEN TOLD KATIA. I JUST CALLED MYRON. LOVE, TRACY
PS PLEASE PRAY FOR MY BABY. SHE NEEDS A TRANSPLANT AND DOESN'T HAVE A MATCH!

THE HOSPITAL ADDRESS IS:
KATIA SOLOMON
801 6TH ST. SOUTH
ST. PETERSBURG, FL 33701

IF YOU ARE INTERESTED IN BECOMING A DONOR PLEASE EMAIL KATRINA HOLLEY, PUT "DONOR FOR KATIA"
IN THE SUBJECT LINE. KHOLLEY@FBSBLOOD.ORG or call her at 727-568-2170.
SHE WILL BE ABLE TO TELL YOU WHERE DRIVES ARE GOING ON ALREADY THAT YOU CAN GO TO. LOVE, TRACY

KNOW THAT YOUR PRAYERS, CARDS AND WELL WISHES GET US THROUGH THIS. IT HAS BEFORE AND IT WILL AGAIN. THIS IS A HUGE HUGE HIT ON OUR LITTLE FAMILY AND WE REALLY ENJOY HEARING FROM YOU.

PLEASE FORGIVE ME IF I DO NOT GO BY PAGES RIGHT NOW TO VISIT. EACH OF YOU ARE IN MY PRAYERS AND I AM TAKING OUR PRAYER BOOK TO THE HOSPITAL. IF THERE IS SOMETHING UPDATED THAT I REALLY NEED TO BE A PART OF PLEASE FEEL FREE TO EMAIL ME. I WILL RESPOND. THE DIAL UP CONNECTION AT
THE HOSPITAL MAKES IT HARD TO LOAD WEBPAGES (INCLUDING KATIA'S) LOVE, TRACY



**



AUGUST 26, 2003 1:54PM
WELL WE ARE BACK. KATIA'S MARROW LOOKS CLEAR UNDER THE MICROSCOPE!!!! THAT IS SUCH GOOD NEWS. THIS TIME WAS THE WORSE EVER TO TRY TO GET THE TESTS DONE SO FINALLY WE TRIED TO SEDATE HER. WELL THAT WAS HARD ENOUGH BUT WE FINALLY GOT HER "DRUNK" ENOUGH THAT SHE WAS WEAKER. SHE HAS A GOOD SIZE BUMP WHERE THEY DID THE SPINAL (SHE IS WALKING A LITTLE FUNNY) BUT HOPEFULLY SHE WILL BE OKAY AND THE BUMP WILL JUST GO AWAY. WE GET THE FINAL RESULTS IN 3 DAYS OR SO BUT TO ME WHEN IT LOOKS GOOD UNDER THE MICROSCOPE THAT IS GOOD TO ME:) THANK YOU SO MUCH FOR YOUR PRAYERS. HER FACE IS ALL BROKEN OUT FROM CRYING SO NO NEW PICTURES FOR ABOUT 2 - 3 DAYS UNTIL SHE CLEARS UP. SHE IS WATCHING SHREK RIGHT NOW AND JUST ATE 2 CHEESE SANDWICHES AND 2 SIPPY CUPS OF WATER WITH ICE. SHE WAS REALLY HUNGRY. I AM SO PROUD OF MY LITTLE BABY. EVEN THOUGH SHE HAS THE STRENGTH OF THE INCREDIBLE HULK, SHE HAS A HEART OF GOLD AND TOLD THEM THANK YOU FOR DOING HER BACK. I REALLY THINK SHE UNDERSTANDS IT HAS TO BE DONE. SHE KEPT TELLING THEM SHE DIDN'T WANT HER BACK POKED BUT... WELL IT IS DONE AND HOPEFULLY IT WILL BE 3 MONTHS BEFORE THE NEXT TIME. WE JUST GO IN ONCE A MONTH FOR COUNTS. I AM STILL CONCERNED ABOUT WHY THE COUNTS ARE DROPPING BUT I JUST PRAY THEY COME UP NEXT MONTH:) LOVE, TRACY

UPDATE: AUGUST 25, 2003 5:10PM

WELL KATIA WAS TAKEN OFF ALL LAXATIVES AND WE WERE TOLD TO DO AN ENEMA AND GUESS WHAT! HUGE HUGE POOPIE!!!! I AM SO HAPPY. I FEEL LIKE HOW YOU FEEL WHEN YOUR CHILD POOPS FOR THE FIRST TIME AFTER BIRTH. EVERYTHING IS STILL ON FOR TOMORROW BECAUSE SHE IS HAVING TO MANY OTHER PROBLEMS TOO BUT THIS IS ONE BIG THING DOWN (OR OUT I SHOULD SAY). LOVE, TRACY :) :) :)

UPDATE: AUGUST 25, 2003 5:45 PM
KATIA IS SLEEPING. I AM SURE SHE IS JUST EXAUSTED FROM ALL SHE HAS BEEN GOING THROUGH BUT I FEEL SO MUCH BETTER KNOWING SHE HAD A POOPIE!!! I AM COOKING DINNER AND JUST WANTED TO UPDATE ON HER SLEEPING. SHE LOOKS SO PEACEFUL. PLEASE PRAY FOR HER TOMORROW. THEY ARE GOING TO TRY TO PUT IN AN IV LINE SO SHE CAN BE SEDATED FOR THIS BONE MARROW ASPIRATE AND SPINAL. SHE IS JUST TOO HARD TO HANDLE FOR US AND SHE IS REALLY STARTING TO HAVE SOME VERY BAD MEMORIES OF ALL OF THIS. SHE HAS TO HAVE THESE DONE TO CHECK THAT SHE IS IN REMISSION. LOVE, TRACY

Please go by and meet our new friend Kayleigh. She is diagnosed with Wilm's Tumor and visited Katia's site to introduce herself.

Kayleigh (Our new friend with Wilm's Tumor)



PS FOR THOSE OF YOU CHECKING IN ON CODI AND NOT SEEING ANY UPDATES, THEY HAVE MOVED TO A NEW HOUSE AND THEIR INTERNET CONNECTION IS NOT READY. LONI DID UPDATE IN THE GUESTBOOK SO YOU CAN READ THE UPDATE THERE BUT CODI IS ENJOYING THE NEW HOUSE AND SOME GOOD DAYS:)


UPDATE: AUGUST 25, 2003
FIRST, NO POOPIES!
SECOND, WE WENT TO CLINIC, SPENT 3 HOURS THERE, TALKED TO THE DOCTOR, DID A CBC (BLOOD COUNTS) WHICH LOOKS OKAY BUT HER WHITE BLOOD CELLS HAVE GONE FROM 6.8 TO 4.9. IS THAT BAD? I HAVE NO IDEA. HER PLATELETES ARE FINE WHICH I WAS A LITTLE WORRIED ABOUT DUE TO THE HEADACHES. AS FAR AS THE POOP, THERE IS NO MORE ADVICE THEY CAN GIVE ME SO WE WILL GO BACK TOMORROW (ALL THE WAY OVER THERE) FOR HER GASTRO DOCTOR TO SEE HER. ALSO AT 8AM SHE WILL HAVE A BONE MARROW ASPIRATE AND SPINAL SO PLEASE PRAY ALL OF THAT IS CLEAR. WHY DIDN'T THEY DO IT TODAY? I HAVE NO CLUE. WE WERE THERE, WE WERE READY BUT "COME BACK TOMORROW!" ANYWAY, ANYTHING FOR KATIA. I WANT HER FEELING BETTER. SHE RAN A FEVER IN CLINIC BUT IT BROKE IN THE WAITING ROOM WHILE WE WAITED. I DON'T THINK SHE HAS GOTTEN OVER 38.0 BUT IT IS GETTING UP TO THAT AND THEN BREAKING BACK DOWN TO ABOUT 36.3 OR SO. SHE SWEATS IT ALL AWAY. WELL, I HAVE A BUNCH OF EMAIL TO CHECK AND I JUST NEED TO TAKE A BREAK BEFORE TOMORROW. AM I WORRIED? YES. I HAVE NO EXPLINATION WHY SHE IS HAVING SO MANY PROBLEMS ALL OF THE SUDDEN, ALL HER ACHES AND PAINS, NO POOPING, HEADACHES AROUND THE CLOCK, ETC. BUT, LORD WILLING IT WILL BE JUST SOME INFECTION OR SOMETHING. LOVE, TRACY


AUGUST 25, 2003 9:15AM
I JUST FOUND OUT PRIYANKA PASSED AWAY THIS MORNING. HER LINK IS ABOVE. PLEASE GO BY HER PAGE. PRIYANKA FOUGHT THIS FIGHT VERY VERY HARD. LOVE, TRACY

UPDATE AUGUST 25, 2003 4:25AM
WELL, NO POOP SO... I CALLED THE ON-CALL DOCTOR LAST NIGHT AND LET THE DOCTOR KNOW WHAT WAS STILL GOING ON WITH KATIA. I NEED TO TAKE HER TO CLINIC TODAY. KATIA IS JUST HAVING QUITE A BIT OF DIFFERENT THINGS GOING ON. THE LACK OF POOPING SEEMS TO BE BOTHERING HER THE LEAST AS LONG AS SHE STAYS IN BED. AS SOON AS SHE GETS UP, IT STARTS TO HURT. SHE DID GO OUT ON THE PORCH AND GO THROUGH HER LADYBUG TENT AND TUNNEL ONE TIME. SHE WOULDN'T GO A SECOND TIME WHICH KINDA BROKE MY HEART BUT WE SAT OUT THERE AS IT STARTED TO RAIN AND SHE WAS JUST TALKING AND TALKING SO THAT WAS GOOD. KATIA IS HAVING PAINS IN HER FEET, BEHIND HER KNEES AND HEADACHES (THE HEADACHES BOTHER HER THE MOST BUT I WOULD SAY ON A SCALE OF 1 - 10, THEY ARE PROBABLY A 5 OR 6. THEN YESTERDAY, HER SISTERS AND HER WERE WATCHING TV ON MY BED AND WHEN I WENT TO CHANGE A PEE DIAPER, IT REALLY HAD A FOUL ODOR. WELL THE ONE I CHANGED ON HER RIGHT BEFORE SHE FELL ASLEEP LAST NIGHT WAS EVEN STRONGER. PLUS SHE HAS BEEN COUGHING A LOT DURING HER SLEEP. I THINK IT IS BEST TO TAKE HER IN AND AT LEAST GET HER CBC, A BLOOD TEST TO CHECK FOR ANY BACTERIAS AND POSSIBLY DO AN ENEMA OR SOMETHING THERE. YESTERDAY MADE DAY #9 OF NO POOPIES AND THAT IS JUST TOO LONG. OF COURSE I WILL UPDATE. PLEASE PRAY FOR OUR FRIEND CHRISTINA, LINK ABOVE AND BELOW, AS SHE GOES BACK IN TO THE HOSPITAL TODAY TO PREPARE FOR HER TRANSPLANT. SHE IS AN AML PATIENT LIKE KATIA AND SHE JUST RECENTLY RELAPSED. LOVE, TRACY


UPDATE AUGUST 24, 2003 3:30PM
There is one new photo in the album. We decorated Katia's potty today with stickers she picked out:) We still aren't potty training but it was a nice thought and fun today. I arranged them all while Katia was in bed and then she came over to see and get her picture taken. Good thing she is young or she wouldn't want her potty on her website:) Still no poopies! Love, Tracy


UPDATE AUGUST 24, 2003 2:15 PM
STILL NOTHING EXCEPT FOR A VERY SMELLY WET DIAPER. SHE ISN'T PEEING MUCH BUT AT LEAST SOMETHING. SHE TAKES ALL HER MEDICINES FINE THOUGH.


UPDATE AUGUST 24, 2003 11:15AM
NOTHING YET...

UPDATE AUGUST 23, 2003 5:00PM
WELL JUST A QUICK NOTE, STILL NO POOP. KATIA DID PEE DURING THE NIGHT SO THAT IS GOOD OR I WOULD HAVE TAKEN HER IN TODAY. SHE HAS HAD A LOT OF PROBLEMS WITH THIS IN THE PAST FOLLOWING CHEMO TREATMENTS AND THE LONGEST SHE HELD IT WAS FOR ABOUT 8 DAYS I THINK, I WOULD HAVE TO LOOK BACK AT MY NOTES. SHE IS GETTING PACKED WITH LAXATIVES AND SUPPOSITORIES NOW. MIRALAX 3 TIMES A DAY, MINERAL OIL 3 TIMES A DAY, CITRATE MAGNESIA 3 TIMES A DAY AND SUPPOSITORIES MORNING AND NIGHT. NOTHING IS WORKING. SHE WAS VERY UNCOMFORTABLE YESTERDAY BUT TODAY SHE SEEMS A LITTLE MORE COMFORTABLE. HER STOMACH IS BIG AND HER FACE IS GETTING PUFFY. SHE HAS PETICHAE ON HER FACE AGAIN AND A RASH IN HER DIAPER AREA AND ON HER BACK A LITTLE. I AM NOT SURE WHERE ALL OF THIS HAS JUST COME FROM BECAUSE HER DIET HASN'T CHANGED AND SHE IS A WATER HOG, SHE DRINKS ALL DAY. IF SHE DOESN'T GO BY MONDAY, SHE WILL HAVE TO GO IN. USUALLY WHEN THEY DO AN MRI, IT SHOWS SHE IS PACKED FROM TOP TO BOTTOM BUT I WANT TO GIVE ALL OF THESE MEDICINES AND STUFF A CHANCE TO WORK. THANK YOU FOR YOUR PRAYERS AND IDEAS. LOVE, TRACY




August 22, 2003 12:10AM
JUST A SMALL UPDATE. KATIA IS VERY CONSTIPATED NOW. SHE HASN'T USED THE BATHROOM FOR 8 DAYS. SHE HAS BEEN ON MIRALAX, MINERAL OIL AND SUPPOSITORIES BUT SHE JUST ISN'T GOING. SHE HAS HAD A LOT OF PROBLEMS WITH THIS IN THE PAST BUT SHE HAS BEEN FINE FOR ABOUT 3 MONTHS NOW. SHE HURTS AND HER STOMACH IS PRETTY BIG (BUT SHE CONTINUES TO WANT TO EAT OF COURSE). ANYWAY, JUST SAY A PRAYER THAT SHE CAN GO POOPIE. I CALLED AND TALKED TO THE DOCTOR AND WE ARE GOING TO HOLD OUT TILL MONDAY AND SEE IF GIVING HER MORE OF THE MIRALAX AND MINERAL OIL WILL MAKE HER GO. IF NOT, THEN WE GO IN... THERE MAY BE SOME TYPE OF BLOCKAGE. LOVE, TRACY

UPDATE AUGUST 22, 2003 3:30PM
WELL KATIA IS PRETTY WELL STAYING OFF HER FEET RIGHT NOW, SHE IS GRUMPY AND SORE IF SHE WALKS. HER FACE IS PINK BUT SHE DOESN'T HAVE A FEVER, SHE FEELS WARM BUT NO FEVER. I HATE THE FACT THIS IS THE WEEKEND NOW BUT IF SHE GETS REALLY MISERABLE TO THE POINT I THINK SHE NEEDS TO BE SEEN, WE CAN GO TO ER. I JUST PRAY IT DOESN'T COME TO THAT AND SHE WILL POOP. SHE IS WRAPPED UP IN HER LITTLE LADYBUG QUILT THAT SHE JUST GOT SO THAT MAKES HER HAPPY:) LOVE, TRACY

Please go by and visit these very special children and their families.

Brittany Zipter and her Mom are both fighting Cancer. Today I visited her website and..."Well it happened again, THANK GOD. Brittany has pulled through another desperate situation and surprised all the doctors and nurses here at the hospital."
That is just a small part of her dad's update! I am thrilled. Brittany is just full of fight. Her mom is having her surgery today so please pray for her and the doctors and of course Brian, because he is having to make so many decisions and be in so many places for his wife and daughter.
Brittany's Page

Christina Gates is now facing a Bone Marrow Transplant. She was treated with Katia for Leukemia AML also. She has recently relapsed. Christina is just a bundle of energy normally and now is losing her energy. She and her parents both want to get this Transplant behind them and start a new life with Christina healthy! Christina is 10 year old and very wise for those 10 years.
She has been through a lot already and knows this transplant will not be easy by any means. Christina loves to receive cards:)
Please visit her page for more information
Christina's Page

Codi Frazier is fighting Bone Cancer and her doctors only gave her a few weeks to live but that was over a month ago. This little girl is so courageous and is such an example to live by. She has gotten her community very involved in her fight. She just recently found out a pink iris will be named after her. "Codi's Angel Face". This little girl is just someone you would want to
know and hug and love. Please visit her page.
Codi's Page


Wednesday, August 20, 2003 9:41 AM CDT



NEW PHOTOS IN ALBUM AUG. 20, 2003 11:30PM

*****AN IMPORTANT NOTE: SOMEONE WHO HAS MY EMAIL ADDRESS IN THEIR ADDRESS BOOK KEEPS SENDING ME A VIRUS. I KNOW IT IS SO HARD NOW A DAYS TO KNOW HOW THIS HAPPENS OR WHEN IT IS HAPPENING BUT I HAVE CONTACTED AOL AND THEY JUST SAID THAT PEOPLE SHOULD RUN THEIR ANTIVIRUS SOFTWARE BUT THERE IS NO WAY TO KNOW WHO HAS THE VIRUS. WELL THERE IS NO WAY FOR ME TO KNOW WHO ALL HAS MY ADDRESS IN THEIR ADDRESS BOOK SO THE BEST I CAN SAY IS FOR EVERYONE TO RUN THEIR ANTI-VIRUS SOFTWARE RIGHT AWAY BECAUSE IT IS REALLY MESSING UP MY COMPUTER AND MY EMAIL PROGRAM. I DON'T RECOGNIZE THE ADDRESSES. ALSO, PLEASE NO MORE FORWARDED EMAILS. I FIND THEM DIFFICULT TO OPEN BECAUSE I REALLY DON'T KNOW WHAT THEY CONTAIN AND WHO THEY HAVE BEEN FORWARDED TO MY FRIENDS FROM. I KNOW THIS ALL SOUNDS CRAZY BUT I CAN'T HAVE MY COMPUTER CRASH AGAIN NOR DO I WANT TO PASS ON A VIRUS TO ANYONE ELSE. THANKS SO MUCH. LOVE, TRACY

UPDATE: AUGUST 20, 2003 4:48PM
WITH EVERY PROBLEM THERE IS A SOLUTION. I HAVE BEEN DEALING WITH AOL ALL AFTERNOON BECAUSE I HAVE JUST BEEN BOMBARDED WITH RETURNING EMAILS THAT I AM NOT SENDING AND HERE IS THE PROBLEM. SOMEONE DOES HAVE THE W32.SOBIG.F@MM VIRUS OUT THERE. IT IS A HUGE THREAT RIGHT NOW TO HOMEUSERS ESPECIALLY. THERE IS A SIMPLE SOLUTION. YOU CAN FIND FREE HELP AT MCAFEE.COM. I HAVE THEIR VIRUS PROGRAM ON MY COMPUTER 24 HOURS A DAY AND I PAY AOL MONTHLY TO KEEP IT UPDATED BUT...
SO IF YOU NEED TO CHECK YOUR COMPUTER BECAUSE YOU ARE ALSO GETTING A BUNCH OF THESE MAILER DAEMON THINGS THEN I WOULD SUGGEST YOU GO TO THEIR SITE. THERE IS ALSO A PART YOU CAN USE TO JUST CHECK YOUR COMPUTER FOR THE VIRUSES OUT RIGHT NOW. IT IS A VERY USEFUL SITE. AS I HAVE TYPED THIS AND I TYPE FAST, I HAVE HAD ABOUT 13 MORE EMAILS COME IN!!!! LOVE, TRACY


Please read all the way to the bottom so you can go visit our friends who could really use your prayers and words of encouragment:)
THE PICTURE AT THE TOP IS KATIA'S NEW HAIRCUT!!! IT IS HER FIRST POST-CHEMO CUT. I JUST LITERALLY CUT THE TIPS OF THE BANGS BUT SHE IS JUST THINKING SHE GOT A MAKEOVER!! HER BANGS WERE HANGING DOWN OVER HER EYES AND MAKING HER LOOK LIKE SHE WAS ALWAYS GETTING INTO TROUBLE SO NOW WE CAN SEE HER PRETTY LITTLE EYES:)
Katia is here watching Barney this morning! That is acting like her old self. It is amazing how I can't remember a list of 10 names but I have the Barney video memorized! Does that tell you something? Anyway, I am just glad she is up and around and acting more like herself. I hate to see her feeling sluggish. Well tomorrow is my birthday, I turn 34. I am not shy to say my age (if I don't people GUESS that I am OLDER so I better come right out and say it). Anyway, Katia is all excited for me. When I was growing up I was always so big about my birthday, I was Queen for the MONTH of August! Now I have grown up (well I grew up 2 years ago). For my 30th birthday I was pregnant with Katia and we went out to a park and took pictures with me and my big belly with Katia inside and Sharayah and Tatiana were holding my belly and talking to Katia. That was so sweet and a day I will never forget. It is really the simple things I love so much:) Another birthday, we were living in Germany, and Myron took me for a LOOOOOOOOOOOONG walk through these woods that look like the woods in Robin Hood with Kevin Costner. They were beautiful BUT we walked for over 2 hours and Sharayah was 2 at the time so I was getting worn out and so was she. I kept wanting to go back to our apartment but NOOOOOOOOOOO. Anyway, finally we got to go back and there was a SUPRISE PARTY!!! We had been gone while they set up. There were people there from Myron's batallion and they had blown up a TON of balloons. I had to walk through balloons, they were on the wall, the bedrooms were full of balloons, etc. It was so nice!!! I have a very special group of family and friends. I have been very blessed with my kids and Myron. I always feel very loved and needed by them (too needed at times) but that is always a good feeling. If I come to the computer when everyone is home, they beg me to come back by them and that makes me feel good. THEY MISS ME!!!! Well I am not going to go on and on. I am just lucky to have my sweet little family:)
Thank you for dropping by to check on us.


Please go by and visit these very special children and their families.

Brittany Zipter and her Mom are both fighting Cancer. The latest update for Brittany is saying she possibly does not have much longer to fight. Things are getting rapidly worse. This is a small part for her father's last udpate on August 19, 2003.
"Brittany’s condition has declined over the past week, she has a very hard time breathing, and her pain has increased. They don’t feel she has a lot of time left. You can’t imagine how hard it is to hear those words over and over again, every time they tell us this it feels like we are in a dream and we can’t wake up. "
Please visit their page.
Brittany's Page

Christina Gates is now facing a Bone Marrow Transplant. She was treated with Katia for Leukemia AML also. She has recently relapsed. Christina is just a bundle of energy normally and now is losing her energy. She and her parents both want to get this Transplant behind them and start a new life with Christina healthy! Christina is 10 year old and very wise for those 10 years.
She has been through a lot already and knows this transplant will not be easy by any means. Christina loves to receive cards:)
Please visit her page for more information
Christina's Page

Codi Frazier is fighting Bone Cancer and her doctors only gave her a few weeks to live but that was over a month ago. This little girl is so courageous and is such an example to live by. She has gotten her community very involved in her fight. She just recently found out a pink iris will be named after her. "Codi's Angel Face". This little girl is just someone you would want to
know and hug and love. Please visit her page.
Codi's Page

There are so many more I could list but I want to get these posted right away so you can visit their pages. Please sign their guestbooks to let them know you were there. It really does make a world of difference to sign on and see new entries in the guestbook:) Love, Tracy


Sunday, August 17, 2003 6:37 PM CDT


UPDATE: AUGUST 19, 2003
KATIA HAS BEEN SLEEPING MOST OF TODAY SO I HAVE BEEN DOING SOME PROJECTS AROUND THE HOUSE. THE MAIN REASON I AM UPDATING IS THERE ARE ALWAYS SO MANY PEOPLE ON CARINGBRIDGE REALLY NEEDING PRAYERS SO I AM NOT WANTING TO LEAVE ANYONE OUT BUT I WANT TO LIST A FEW WHO REALLY NEED YOUR PRAYERS AND VISITS URGENTLY. PLEASE TAKE A CHANCE TO VISIT AND PASS THEIR ADDRESS ALONG TO OTHERS. THESE SITES ALSO HAVE ADDRESSES WHERE THE CHILDREN CAN RECEIVE CARDS:) LOVE, TRACY



Please go by and visit these very special children and their families.

Brittany Zipter and her Mom are both fighting Cancer. The latest update for Brittany is saying she possibly does not have much longer to fight. Things are getting rapidly worse. This is a small part for her father's last udpate on August 19, 2003.
"Brittany’s condition has declined over the past week, she has a very hard time breathing, and her pain has increased. They don’t feel she has a lot of time left. You can’t imagine how hard it is to hear those words over and over again, every time they tell us this it feels like we are in a dream and we can’t wake up. "
Please visit their page.
Brittany's Page

Christina Gates is now facing a Bone Marrow Transplant. She was treated with Katia for Leukemia AML also. She has recently relapsed. Christina is just a bundle of energy normally and now is losing her energy. She and her parents both want to get this Transplant behind them and start a new life with Christina healthy! Christina is 10 year old and very wise for those 10 years.
She has been through a lot already and knows this transplant will not be easy by any means. Christina loves to receive cards:)
Please visit her page for more information
Christina's Page

Codi Frazier is fighting Bone Cancer and her doctors only gave her a few weeks to live but that was over a month ago. This little girl is so courageous and is such an example to live by. She has gotten her community very involved in her fight. She just recently found out a pink iris will be named after her. "Codi's Angel Face". This little girl is just someone you would want to
know and hug and love. Please visit her page.
Codi's Page

There are so many more I could list but I want to get these posted right away so you can visit their pages. Please sign their guestbooks to let them know you were there. It really does make a world of difference to sign on and see new entries in the guestbook:) Love, Tracy

UPDATE: AUGUST 18, 2OO3

I REALLY WANT TO THANK THOSE OF YOU WHO ARE PARTICIPATING IN RAISING MONEY FOR THE LIGHT THE NIGHT EVENT. THAT IS JUST SO APPRECIATED. IF YOU WOULD LIKE TO HELP, MAKE A CHECK TO "LEUKEMIA AND LYMPHOMA SOCIETY" AND MAIL IT TO KATIA'S PO BOX. ALL OF IT GOES TO THE SOCIETY AND IT GOES TOWARDS US MEETING OUR GOAL OF WHAT WE WANT TO RAISE. I KNOW THE LEUKEMIA AND LYMPHOMA SOCIETY DOES A LOT OF RESEARCH THAT REALLY PAYS OFF. THEY HAVE A NEW PILL FOR PEOPLE WITH LEUKEMIA CML THAT BASICALLY ALLOW THEM TO LIVE THEIR DAILY LIVES JUST BY TAKING THEIR PILL AND THEY DON'T LOSE THEIR HAIR. WOULDN'T THAT BE NICE TO BE ABLE TO DISCOVER A WAY FOR THAT TO BE A CANCER TREATMENT FOR EVERYONE? WELL THE LEUKEMIA AND LYMPHOMA SOCIETY IS DOING SO MUCH TO MAKE TREATMENTS BETTER AND TO FIND A CURE. WHY IS THIS SO IMPORTANT TO US? WELL, WE HAVE SEEN FIRST HAND THE BAD SIDE EFFECTS FROM CHEMO. KATIA HAD A HORRIBLE TIME MAINLY BECAUSE OF LOSING HER IMMUNE SYSTEM. BUT, IT COULD HAVE BEEN MUCH WORSE! I KNOW ONE THING KATIA DID NOT SUFFER FROM WAS NAUSEA MUCH AND A LOSS OF APPETITE. A LOT OF THE MEDICATIONS THAT HELP THOSE SIDE EFFECTS WERE FOUND THROUGH JUST THIS TYPE OF RESEARCH. THIS IS THE WAY TO A CURE. ANY DOLLAR AMOUNT IS GREAT. IT DOESN'T HAVE TO BE A BIG AMOUNT. I HAVE LEARNED THAT $5.00 GOES A LONG WAY WHEN QUITE A FEW PEOPLE DO THAT. I HAVE ALSO LEARNED THAT THE MONEY I DONATED TO ST. JUDE (WHEN OUR FAMILY WASN'T FACED WITH THIS DISEASE) DOES HELP MY FAMILY. THEY DO RESEARCH TOO. I CAN'T BELIEVE HOW I USED TO WATCH THAT SHOW AND THINK, "WOW THOSE POOR FAMILIES" AND NOW WE ARE THAT FAMILY. YOU NEVER THINK THIS CAN TOUCH YOU BUT IT CAN AND I BELIEVE THERE IS A CURE. I JUST PRAY IT IS IN KATIA'S LIFETIME. LOVE, TRACY


August 17, 2003
I don't really have much to update. Today has just been kind of a down day with a lot of thinking involved. I am blessed that Katia is doing so well and I really do try to tell myself that over and over when I feel in a slump. I think of the Zipters going through what they are and just so many other families and I feel horrible when I even think I have a problem. I really always try to be completely upbeat when I update or just steer clear of the computer. I have learned that. I know I haven't been around to guestbooks as much but trust me when I say that although I am not there, you are on my mind here, really by name. I wish I could find a cure and just hand them out, email them or send it to a PO Box. Nothing would make me happier than to just bring that one HUGE gift to the world. I saw a sign on my way home the other day that said, "God never gives us more than we can handle." That has really had me thinking a lot. I think God can give us grace and patience but I think as humans, a lot of times we try to race ahead of God and find the lights at the end of the tunnels we are supposed to go through. I am not going to say, "WE" here I am going to say "I". I know that I look at things and really wonder how I am supposed to solve this problem and that and when I don't find an answer, I panic. I believe God knows my heart and knows that it isn't because I don't trust in Him but that I can't understand sometimes what I am facing. I have really tried to get the word "WHY" out of my vocabulary but it sneaks up a lot lately. I find myself praying a lot more both because of needs and also because of thanks. I don't think I used to thank God enough for the simple things in life. I really try to now. I try to not ask for things for myself but more often people in general. But, I do feel very over-stressed a lot. I pray that God understands that in me and knows my heart. I know He does. Please continue to always keep Katia in your prayers and our whole family as well. When I pray I always try to close in saying to please help those that I don't even know need prayer. I figure EVERYONE needs prayer, especially those who think they don't. I pray for more kindness to be shared between each of us as that generally brings more smiles and happiness. I also read something, I don't remember where and I just loved what it said.
"The curve of a smile can straighten out many things."
I thought that was so true. God Bless EVERYONE.
Love, Tracy


Tuesday, August 12, 2003 4:52 AM CDT


UPDATE: AUGUST 17, 2003
Please do not leave anonymous entries on Katia's guestbook. There isn't a need to leave an email address but at least a name. This is why I am saying this...
I am going to add this here just because there is too much stuff going around about Jessica a.k.a. barbiegirljessica2003@netzero.com. I think we have all seen her around Caringbridge on our guestbooks. I had a link to her site on Katia's for a while just to introduce her and get her some visitors to her site. I removed her site when I updated those links and took off other sites and added new ones. I do that often. She was signing Katia's guestbook very often and I went to her page quite a bit. I noticed some of her messages left on other sites were a bit awkward for what was going on (like a death or a very bad day) but her message was as though she didn't read the update. Anyway, I then started getting some guestbook entries saying she was a fraud and fake and also emails. Of course most of the guestbook entries were anonymous. Well, I decided to look into myself and found enough evidence to believe enough to just try to stay out of it but not add to an already growing problem. Then came the word that she was behind the MacKenzie Rose site and that was a fake put up by Jessica. Since all of this has really grown, she has been removed from other sites (quilting sites, Hugs and Hope, etc.) and has stopped visiting most of the guestbooks. I emailed her asking her about it and she responded but not very directly. I mainly just asked why her site was closed down and she more brushed it off. I am saying all of this to say, that although I get entries and emails that I don't see proved, I do look them up. I appreciate people trying to "warn" me of things very much because I don't want to be hurt by someone else and I certainly don't want my family hurt in anyway. When we put these Caringbridge sites up, we put a lot of our lives right out there for others to read and we take a chance in doing that. I put Katia's site up as a way for new patients to find information and for us to be able to get in contact with people that I can learn from. Please always know who you are dealing with or your children are dealing with. If you don't know, try to find out. That is just good sense in everyday life. As far as Jessica, I don't know why she would have done any of this so therefore I am not going to comment on that. I just pray for people to be able to live life in a way that is right and not to hurt others. Love, Tracy



UPDATE: AUGUST 16, 2003 1:30PM
WELL WE ARE BACK HOME FROM THE KICK OFF EVENT FOR TEAM IN TRAINING. VERY NICE AND THERE WERE A LOT OF PEOPLE THERE TO RUN THIS YEAR! I WANT YOU TO PLEASE GO VISIT BRITTANY'S PAGE. HER LINK IS ALWAYS UP TOP HERE BUT I AM GOING TO ADD IT HERE RIGHT NOW. BRITTANY HAS BEEN BATTLING BONE CANCER FOR QUITE SOME TIME NOW AND IS JUST AN AMAZING GIRL. WHAT I DID NOT KNOW IS HER MOM, PATTY, HAD BEATEN CANCER 8 YEARS AGO. WELL, NOW HER MOM'S CANCER HAS COME BACK. I CANNOT EVEN BEGIN TO IMAGINE WHAT THE ZIPTER FAMILY IS FEELING AND STRUGGLING THROUGH. I HAVE ALWAYS ADMIRED BRITTANY AND HER WHOLE FAMILY AS I HAVE WATCHED THEM ALL GO THROUGH SO MUCH WITH BATTLING BRITTANY'S CANCER. BUT NOW, THIS. PLEASE GO BY THEIR PAGE AND KEEP UP WITH THIS FAMILY. SIGN THEIR GUESTBOOK TO LET THEM KNOW YOU HAVE DROPPED BY. THEY ARE JUST AMAZING PEOPLE!! THIS IS A PART OF THE JOURNAL UPDATE FROM THEIR PAGE WRITTEN BY BRITTANY'S DAD, BRIAN.

"I think about all the times that we thought we were losing Brittany and all the times she has bounced back. I just can’t imagine life without her. Now I have to face and equally devastating reality, my wife Patty has relapsed, had a reoccurrence or what ever they call it. Her cancer is back. I live every day with the knowledge that I may lose my baby, now I have to somehow exist knowing that I may lose my precious wife, my soul mate, my rock. "


BRITTANY'S SITE


UPDATE: AUGUST 16, 2003 8:00 AM
WELL TODAY WE ARE OFF FOR A KICK OFF EVENT IN ST. PETE FOR TEAM IN TRAINING WITH THE LEUKEMIA AND LYMPHOMA SOCIETY. ALSO THANK YOU TO THOSE WHO HAVE DONATED TO THE SOCIETY IN HONOR OF KATIA FOR THIS LIGHT THE NIGHT EVENT. I REALLY APPRECIATE YOUR INVOLVEMENT AND THE LEUKEMIA AND LYMPHOMA SOCIETY DOES A LOT IN THE RESEARCH TO FIND CURES AND BETTER TREATMENTS.
KATIA HAS BEEN DOING GOOD. SHE IS PRETTY BRUISED UP RIGHT NOW BUT I AM NOT GOING TO WORRY BECAUSE I ALWAYS DO AND HER COUNTS COME BACK FINE. HER PLATELETS DID DROP 50 POINTS LAST TIME BUT THEY WERE STILL 239 SO I AM NOT TOO CONCERNED UNLESS THEY HAVE A DROP LIKE THAT AGAIN, THEN...
WE HAVE HAD A FEW DAYS NOW OF BEAUTIFUL SUNSHINE AND EVEN THOUGH IT GETS HOT, I AM SO HAPPY TO HAVE THE SUN!!!! KATIA LOVES MORNINGS. WELL WE HAVE TO BE OFF TO ST. PETE SO I WILL UPDATE LATER. LOVE, TRACY


Please go by and visit a new friend of ours. We met her on the Care to Share board with the NCCS. Her name is Michelle. Here is a small part from her page.
This page is Dedicated to my daughter, Michelle aged 15yrs and 3mnths. She was diagnosed with neuroblastoma stage IV, two days before her 13 birthday. She has been nineteen months in remission. Sadly, we learned on 19 july of this year that the disease has returned. This time we have been told that the only thing that can b done is to think of quality of life.

Here is her site and please sign her guestbook.
Michelle's Page




UPDATE AUGUST 13, 2003 7:50PM
WELL TODAY WAS ANOTHER VERY NICE DAY!!! THIS IS SO GREAT. WE CAN WALK IN OUR YARD AND NOT SINK. SO.... WE DID YARD WORK ALL AFTERNOON. I HAVE A BIRTHDAY ON THE 21ST OF THIS MONTH AND I AM SUPPOSED TO BE TURNING 34 BUT RIGHT NOW, IF FEEL LIKE I AM 80!!! BUT, THEY SAY "GROW OLD GRACEFULLY". WE WILL SEE. KATIA HAS BEEN DOING GOOD TODAY. VERY GOOD MOOD ALL DAY. SHE TOOK A LONG NAP THIS AFTERNOON WHICH IS NOT NORMAL FOR HER BUT SHE WOKE UP FEELING GOOD. THEN SHE LAID BY THE FRONT WINDOW AND WATCHED ME DO YARD WORK. I FELT SO BAD BECAUSE I KNOW SHE WAS BORED. SHE WAS LAYING ON THE CARPET WITH HER BLANKET, SUCKING HER THUMB. NOT MUCH ELSE IS GOING ON. I HAVE BEEN DOING A FEW ROUNDS TO PAGES AND I AM GLAD TO SEE PRIYANKA HAS HAD SOME IMPROVEMENTS. WELL I AM COMPLETELY SORE AND EXAUSTED SO I AM GOING TO GET OFF MY FEET AND REST MY BACK (SEE, DON'T I SOUND 80?) SO REMEMBER ALWAYS PRAY FOR EACHOTHER:) LOVE, TRACY AND KATIA




AUGUST 12, 2003
UPDATE AFTERNOON
LOOK WHAT KATIA RECEIVED IN THE MAIL TODAY, A LADYBUG TENT!!!! SO I HAD TO CHANGE THE PICTURE TO SHOW THIS! SHE LOVES THE TENT!!! THIS WAS SO VERY SWEET!!! THANK YOU SO MUCH. LOVE, TRACY





I HAVE TO SHARE WITH YOU AGAIN THIS STORY OF A YOUNG GIRL NAMED CODI!


CODI HAS OSTEOSARCOMA AND ON JULY 8, 2003 WAS TOLD SHE ONLY HAD A FEW WEEKS TO LIVE. CODI IS JUST MADE OF 100 PERCENT PURE ANGEL THROUGH AND THROUGH. SHE HAS PUT SO MUCH ENERGY INTO SPREADING THE WORD AGAINST CANCER. SHE IS 11 YEARS OLD AND SHE IS A TRULY AMAZING CHAMPION!!!! I READ HER SIGHT DAILY AS SHE IS ALWAYS HAVING IT UPDATED. SHE KNOWS SO MANY PEOPLE AND HAS MADE SO MANY APPEARANCES AND SHE IS JUST SUCH A DOWN-TO-EARTH LITTLE GIRL. YET, THIS LITTLE GIRL WILL BE GONE SOON. I HAVE TO SAY CODI HAS MADE A DEEP IMPRESSION ON ME AND I AM SURE SHE HAS MADE A DEEP IMPRESSION WORLDWIDE!!! SHE IS OUR FIRST PERSON TO MAKE A DONATION TOWARD THE LIGHT THE NIGHT WALK IN HONOR OF KATIA AND WHEN I RECEIVED THAT TODAY, I CAME TO TEARS! I MEAN HERE IS A FAMILY WITH A TREMENDOUS BATTLE AND YET...
SHE LOST HER MOM IN JANUARY 2002, UNEXPECTIDLY FROM SEPTIC SHOCK. I JUST CAN'T IMAGINE WHAT THIS LITTLE GIRL HAS BEEN THROUGH AT SUCH A YOUNG AGE BUT SHE HAS BROUGHT HER COMMUNITY TOGETHER IN FIGHTING THIS FIGHT!
PLEASE VISIT HER SITE AND SIGN HER GUESTBOOK. SHE IS A TREMENDOUS PERSON BEYOND WORDS! MAKE SURE TO SIGN HER GUESTBOOK. SHE DOES CHECK IT:)
CODI'S SITE




UPDATE AUGUST 12, 2003 11:30AM

THE SUN IS OUT! THE SUN IS OUT! THE SUN IS OUT!!!! SEE ME ON MY SWING!!!!




AUGUST 12, 2003 5:52 EST


HI THERE :)
Well, I am up early so I thought I would update Katia's page. I just have a lot on my mind. So many kids really need a lot of prayers. It is very nice to have met so many nice children and their families via Caringbridge but it is also very difficult. I haven't been spending much time on here for that reason. Oh, please always know I pray for each of you and I don't forget about you, NEVER but I am just taking a little time to spend from spending SO MUCH time going around and signing so many guestbooks. I need to take some new pictures around here but for those of you asking, the RAIN WON'T stay away! I am grateful for the rain because Florida has had drought problems in the past years but now our yard is MUSH! We have an everflowing river in the street and I think enough is enough. Katia so much wants to go play outside. It seems to always be thundering and threatening to rain even if the sun peeks out for a bit. I am sure the rain won't last too much longer, hopefully we stay clear of hurricanes. Katia has just been very hyper and pretty cranky lately and I think it is just a lot of wound up energy in her.
Sharayah and Tatiana are glad to be back in school :)
They haven't seen their friends much during the summer. A lot of them go visit family so they aren't around here much. This year the girls both get home within about 30 minutes of eachother so that is nice. It gives us the evening at home. Sharayah used to get home right around 5PM and it was just nonstop till dinner and then she would hide away and do her homework. She is enjoying HIGHSCHOOL! I do think she misses uniforms a little. She won't say that but I know she enjoyed not having to get up and worry what to wear.
Not much else has been going on around here. I am feeling a lot better. I started on a "supplement" type of drink 3 times a day and it is really helping my back a lot and my right hand. I still can't write letters too well (but I type) but I can definitely say I feel better. As far as my mammogram? I am going to just pick up the films and find a new doctor!! I have had it with this one. He was out of the office for a while but now he is back and it is like I am on his "back burner" so I am going to just give up on him. I mean, come on, that is ridiculous!
Well, I am here having had no coffee at this early hour so I am going to say good bye and remember to always pray for eachother. Love, Tracy


Come see my new slideshow!

The voice in the slideshow is not Myron just in case you wonder. The music is by Brian Culbertson featuring John Stoddart.



Thursday, August 7, 2003 9:31 PM CDT

UPDATE SUNDAY, AUGUST 10, 2003 12:20
HAPPY BIRTHDAY TO MY DAD, HE IS 69 TODAY:)
OKAY, ON TO OTHER NEWS. NOT MUCH HAS BEEN GOING ON AROUND HERE BUT A LOT OF RAIN AND MORE RAIN AND MORE RAIN. WE END UP HAVING TO CLEAN THE BACKPORCH QUITE A BIT BECAUSE THE YARD IS FLOODED AND IT COMES IN SOME ON THE BACKPORCH. ASIDE FROM THAT, NOT MUCH ELSE. KATIA HAS BEEN QUITE THE CRANKY ONE. WE KNOW THAT THE CHEMO SHE HAD TO HER BRAIN CAN CAUSE SOME DISABILITIES AND LEARNING PROBLEMS SO WE ARE KEEPING AN EYE ON HER AND SEEING IF IT IS "NORMAL" 3 YEAR OLD STUFF OR BEYOND THAT. IF SHE EATS ALL DAY, SHE IS HAPPY. FUNNY, SHE EATS SO SO MUCH AND HASN'T GAINED A POUND IN THE LAST FEW MONTHS, NOT AN OUNCE! WELL, THAT IS ABOUT ALL THAT IS GOING ON WITH HER. SHE IS DOING GOOD AND WE PRAISE GOD FOR THAT. LOVE, TRACY


UPDATE: FRIDAY, AUGUST 8, 2003 11:15AM
RAIN, RAIN, GO AWAY
COME AGAIN IN 10 MORE DAYS!
LITTLE KATIA WANTS TO PLAY.



Come see my new slideshow!

The voice in the slideshow is not Myron just in case you wonder. The music is by Brian Culbertson featuring John Stoddart.





Thursday, August 7, 2003 9:31PM
Just updating a little note: Today went really well. A friend of ours had her baby at midnight last night so we went to go see the baby! I love little babies. Katia wants to meet the baby but we have to wait until they go home:) The dress in the picture above was from a friend of ours, Terry. Thank you so much Terry! You and Jeanette have just been such a blessing to have in our lives. Love, Tracy


Tuesday, August 5, 2003 1:47 PM CDT

UPDATE AUGUST 6, 2003 4:00PM

WENT TO CLINIC AND ALL OF KATIA'S COUNTS LOOKED GREAT!!! HER DOCTOR SAID IF THE PETECHIAE DOESN'T GO AWAY OR SPREADS THEN THEY WILL DO AN MRI OF HER ORBITS (EYE SOCKET AREAS) TO CHECK ON THE TUMOR IN HER RIGHT EYE AND MAKE SURE NOTHING ELSE IS IN THERE BUT SHE FEELS IT IS JUST BEING CAUSED EITHER BY CRYING OR RUBBING HER EYES HARD MAYBE. KATIA HAS BEEN PRETTY TEMPERMENTAL LATELY SO...
SHARAYAH AND TATIANA LOVE THEIR SCHOOLS AND THEIR TEACHERS. I JUST GOT A 1 HOUR TALK BY EACH OF THEM ABOUT THEIR DAYS. I FEEL LIKE I JUST CAME HOME FROM SCHOOL. I AM VERY HAPPY THEY LOVE SCHOOL AND HAVE ALWAYS BEEN ABLE TO DO WELL. THEY WERE BOTH HOMESCHOOLED FOR A WHILE AND ARE VERY SELF-MOTIVATED LEARNERS. GOD BLESSED ME WITH THEM:)
KATIA WAS KINDA LONELY WHEN SHE GOT UP AND SHE CAME AND ASKED ME IF I WOULD EAT BREAKFAST WITH HER SO WE SAT DOWN TOGETHER AND HAD CEREAL AND CHATTED. IT WAS REALLY NICE:) SHE IS SUCH A DOLL WITH A GREAT HEART! LOVE, TRACY
PS HERE ARE SOME OF HER COUNTS
WBC 6.8 LYM 4.3 MID 0.4 GRAN 2.1
RBC 4.37 HGB 12.9 HCT 37.4 MCV 85.6
MCH 29.5 MCHC 34.5 RDW 12.6 PLT 237

NOT MUCH CHANGES FROM LAST MONTHS. A FEW NUMBER WENT DOWN A LITTLE BIT AND THE PLATELETTES DID DROP DOWN 50.



KATIA HAS QUITE A BIT OF Petechiae ON HER FACE, UNDER HER EYES. PLEASE PRAY THIS IS NOTHING. WE GO IN FOR HER CBC NEXT WEEK. LOVE, TRACY

WELL I JUST GOT OFF THE PHONE WITH THE CLINIC TO SCHEDULE AN APPOINTMENT FOR NEXT WEEK AND THEY WANT TO SEE HER TOMORROW. HOPEFULLY ALL IS WELL. I AM FEELING OPTOMISTIC BUT MYRON IS WORRIED ABOUT HER COUNTS.

I WILL UPDATE WHEN I RETURN HOME. LOVE, TRACY


Sunday, August 3, 2003 7:48 PM CDT

KATIA HAS QUITE A BIT OF Petechiae ON HER FACE, UNDER HER EYES. PLEASE PRAY THIS IS NOTHING. WE GO IN FOR HER CBC NEXT WEEK. LOVE, TRACY
UPDATE: WELL I SAW MY CARDIOLOGIST TODAY AND ALL THE TEST REVEAL MY TICKER IS JUST FINE! THAT IS SUPER NEWS. NOW I DON'T HAVE TO WORRY ABOUT THAT. THAT REALLY MADE MY DAY! THAT DOESN'T EXPLAIN THE CHEST PAINS TOO MUCH BUT SHE WANTS ME TO EXERCISE MORE (I KNEW THAT WOULD BE AN ISSUE) AND TRY TO LOWER MY CHOLESTROL. I WILL GO BACK TO HER FOR SOME MORE TESTS IN A YEAR. LOOK ABOVE THE JOURNAL ENTRY FOR A SONG WRITTEN FOR KATIA FROM "SONGS OF LOVE". IT TURNED OUT REALLY NICE AND IF YOU HAVE A SICK CHILD, I URGE TO VISIT THEIR SITE. SONGS OF LOVE THE SONG IS ACTING UP SO I WILL WORK ON IT AND GET IT BACK ON THE SITE IN A FEW DAYS, SORRY. BUT PLEASE VISIT THE SITE.
I ALSO WANT TO THANK THE QUILTING ANGELS FOR KATIA'S BEAUTIFUL LADYBUG QUILT. I AM TRYING REALLY HARD TO GET A PICTURE OF HER WITH IT BUT SHE ALWAYS BALLS UP IN IT OR SHE GOES TO SLEEP, SO... BUT THEY DID A REALLY NICE QUILT FOR HER WHICH SHE SEEMS TO HAVE A VERY FOND ATTACHMENT TO! YOU CAN VISIT THEIR WEBSITE AT QUILTING ANGELS
KATIA IS OUTSIDE PLAYING RIGHT NOW AND BEING VERY LOUD ABOUT IT BUT THAT IS OKAY. HER SISTERS START SCHOOL ON WEDNESDAY!!!! HELLO PEACE AND QUIET! LOVE, TRACY

Well today was just a relaxing day. We went to a birthday party for a friend of ours and had a nice relaxing time. I just watch Katia as she goes around talking to people and it amazes me how many new phrases she has learned. Her eye was a little more puffy today but hopefully that will go back down. It does that periodically. We worry because the tumor is still in there and there isn't much that can be done to remove it. It is wrapped on the optic nerve. I really hope it doesn't bother her vision but she is too young to really give us a good answer. She never wanted to stop eating at the party. People probably think we never feed her but that is Katia :)

School here starts on Wednesday. The girls can't wait to get back to school. (Secret: I can't wait for them to get back in school). I like having time with just Katia cause she and I both really miss that. I used to read to her a lot more and I haven't really during the summer. Plus she likes helping me fold laundry and clean the kitchen counters. She likes to play like she is vacuuming behind me too. Katia is a doll to have around a very sweet little baby. Our family is blessed with her and we all know it!

Well, I am tired. I haven't really been sleeping too much at night. A lot on my mind. But, my computer is 99orking. Out of about 1500 pictures, I have a good 900 back plus I have more people emailing me some pictures I recently sent them so it isn't so bad. I think everyone knows how much I love pictures! I really like the fact they are digital and I don't have to print them anymore. That adds up when you take 5 to 7 rolls of film in every 2 weeks. Now I just upload them and start over :) God bless that part of technology.

Thank you for coming by and checking on Katia and our family. Words cannot express how much that makes my heart sing :) Please take the time to sign the guestbook every once in a while. I enjoy reading them and I print them for Katia to read later. She loves to hear the messages and see some of the pictures.

Love, Tracy

I have just learned to that our Hospital Buddy, Christina G. has relapsed. Her birthday party is scheduled for August 9, and they are praying they can continue with that. Christina loves to receive greeting cards. She has a PO Box address and I bet she would love to hear from you!


Christina Gates
P.O. Box 7773
Lakeland, FL 33807-7773
You can visit her site also to read more about her story.
Christina's Site



Last but not least, please read the above about the Light The Night Walk with the Leukemia and Lymphoma Society. Our goal is to raise $400 for this event. If you would like to donate, make your check out to THE LEUKEMIA AND LYMPHOMA SOCIETY. They can be mailed to Katia's PO Box at the bottom of this page. We will be mailing in the funds in special envelopes to go towards our goal. Our team name is "Katia's LifeBugs" which of course, the ladybug is her symbol. If you would like to come out and walk in honor of Katia on November 8, please email me as I need a general head count so the Leukemia and Lymphoma Society will know how much food and snacks to have out there. I have heard this is an event that will forever live in your heart! We are VERY MUCH looking forward to participating. We will carry red balloons and Katia will carry a WHITE balloon as a survivor:) Doesn't that sound nice, a SURVIVOR? Well the Leukemia and Lymphoma Society has had a HUGE part in Katia's success! So please help this wonderful organization continue to help us and many adults and children fighting these diseases. You can visit the Leukemia and Lymphoma Society page to read more.
Leukemia and Lymphoma Society's Site

Love, Tracy



Saturday, August 2, 2003 7:57 PM CDT

OKAY, FOR THE MOST PART, MY COMPUTER IS BACK UP AND RUNNING. I LOST ALMOST EVERY DIGITAL PICTURE OVER THE LAST YEAR AND A HALF BUT...
I RECOVERED QUITE A BIT FROM MY AOL ACCOUNT, SOME FROM A CD I HAD COPIED FOR MY UNCLE AND THEN SOME IS GONE, INCLUDING THE TRIP TO GINNIE SPRINGS THE OTHER DAY. I DO HAVE THE PART THAT IS IN HER PHOTO ALBUM IN HERE BUT THERE WERE A LOT OF BEAUTIFUL PICTURES TAKEN A GREAT RESOLUTIONS. ANYWAY, I AM NOT GOING TO WHINE FOR MYSELF. I HAVE GATHERED A LOT TOGETHER. MY COMPUTER IS STILL PRETTY DISAGREEABLE WHEN SHUT DOWN. IT HAS A HARD TIME COMING ON BUT LITTLE BY LITTLE I AM RESOLVING THOSE ISSUES. I AM SORRY I HAVE NOT SIGNED GUESTBOOKS TODAY BUT I DID CLICK ON AND CHECK QUITE A FEW PAGES BUT SINCE I WAS ON DIALUP, THAT TOOK FOREVER AND I USE CODES TO SIGN ADDRESS BOOKS WHICH I HAVE TO NOW REWRITE ALSO SO... MAYBE I WILL GET TO SOME TOMORROW. JUST KNOW MY PRAYERS ARE ALWAYS WITH EACH OF YOU. I HAVE BEEN WORKING FOR ALMOST 24 HOURS STRAIGHT AND I AM EXAUSTED! SO I AM GOING TO SIGN OFF FOR NOW, CHECK ON A FEW CARINGBRIDGE SITES AND GO TO BED! THANK YOU FOR YOUR CONCERN. LOVE TRACY

Also, a LOT of you are going to be seeing entries from Jessica in your guestbook. She is a real blessing in these guestbooks. She also enjoys hearing from new people. She has Cerebal Palsy. She enjoys very much hearing from people and you will definitely hear back from her!
Jessica's site


Friday, August 1, 2003 4:01 PM CDT

UPDATE: WELL I UPDATED EARLIER BUT OF COURSE IT ISN'T HERE. I WAS ON A LAPTOP I NEVER USE WITH A DIAL UP CONNECTION. MY COMPUTER WAS ZAPPED DURING A STORM TODAY SO I AM HAVING TO WORK ON IT. I HAVE IT UP AND RUNNING AND AOL WORKING BUT I HAVE LOST ALL MY FAMILY PICTURES AND MYRON'S ALBUM LABELS AND JUST SO MUCH MORE. I WILL BE WORKING A LONG TIME TO REBUILD THE ALBUM COVERS AND DIFFERENT DESIGNS I HAVE BEEN WORKING ON. I USED TO ALWAYS SAVE EVERYTHING TO DISK BUT OVER THE LAST MONTHS I HAVE NOT. I HAVE PICTURES THROUGH AUGUST 2002. I SAVED SOME IN MY AOL PHOTO ALBUMS BUT THEN A LOT ARE JUST GONE GONE GONE! I JUST CAN'T BELIEVE I WAS THIS STUPID AND I JUST DON'T KNOW HOW THAT INFORMATION (EVERYTHING ON MY 2 HARD DISK) IS JUST GONE. I AM VERY COMPUTER LITERATE AND JUST BAMMMMM IT IS GONE!! I WILL TRY TO BE IN TOUCH OVER THE NEXT FEW DAYS BUT ANY SPARE TIME I GET WILL BE TRYING TO RECOVER A LOT OF LOST ITEMS AND REBUILDING THESE DESIGNS. I JUST FEEL LIKE AN IDIOT! LOVE, TRACY

Okay, I am taking a deep breath and typing this update. First, Katia is doing wonderfully!!
On to whether or not I have my mammogram results... the saga continues...
I did go pick up the films today AND the report from the radiologist which states that "due to so many classifications in the breast, we are unable to determine any abonormalities..." I can't remember much of the rest but my General Surgeon has not SEEN the films but has been read the report which sounds "okay" to me. The report is pretty inconclusive and the doctor I deal with will view the films on Monday (so why did I have to pick them up today?) Well at least I have my films!! So I have to wait till Monday. I am thinking they will probably either want to run a new mammogram being more specific or just see me every three months for a mammogram to see how things are changing. The breasts are also very dense which makes things difficult. Last time, this doctor did a biopsy just to be clear and took out some of the "classifications" to test them and found them benign. I still am unsure but I feel better having seen the report and knowing the films are in good hands.
Please though, stop right now and say a prayer that God will protect our Caringbridge Families and all of the adults and children fighting all diseases known and unknown. This spring and summer has just seen so many deaths AND if you are not a REGISTERED bone marrow donor, please follow the links in Katia's page and become one. Your marrow could save a life:) Love, Tracy Luke Ervin's Site

Luke Ervin passed away this morning. He is with the Lord.


Thursday, July 31, 2003 11:12 AM CDT

UPDATE: PLEASE PRAY THAT TODAY I FIND OUT MY RESULTS. I AM GOING TO PICK UP THE FILMS MYSELF AND DELIVER THEM TO MY DOCTOR. I KNOW THEY HAVE BEEN READ SO HOPEFULLY THE REPORT HAS BEEN FAXED AND I CAN KNOW WHAT THE RESULTS ARE. THIS IS DRIVING ME UP A WALL! LOVE, TRACY
Well today is the last day of July. I can't believe how fast the summer has gone by. Katia has really been having a lot of fun and we have been enjoying hearing all her new sentences she comes up with. That has to be her biggest change! She LOVES to talk and we (basically) love to hear her talk. She mainly ask for food!
On another note: Please always visit the links above on the page. I add new links. There is a link above about a lady Maha. Her site was looking for a Marrow match. She lost her battle with cancer on July 29, at the age of 28. That is very sad. Her site is very full of information and links and also how to donate Cord Blood. This is something I really push because the cord is usually just discarded at birth but with so many babies being born each day, imagine how many matches for Marrow are just being discarded. Please pass this information along. There is a link up in the page about cord blood also.
I add new children's links who I know need prayers and visitors to the sites. These children really look forward to reading their guestbooks each day and I want them to have a lot there to read:)
Please continue to keep Priyanka in your prayers. She is fighting SO hard and new things just keep happening causing her to have to fight even harder.
Priyanka's Site

Also Luke Ervin is in a coma but from what I understand he is struggling very hard with his breathing. He has a brain tumor and as of July 25, the family was told there was nothing that could be done. The family is hoping he will not suffer but have a peaceful journey to heaven. He is growing his angel wings as I type.


Monday, July 28, 2003 3:07 PM CDT

UPDATE: PLEASE GO BY AND VISIT LITTLE LUKE ERVIN'S PAGE. HE HAS SLIPPED INTO A COMA AS OF NOON YESTERDAY AND HIS PARENTS ARE THERE WITH HIM AS HE BEGINS HIS JOURNEY TO HEAVEN.
http://www.caringbridge.org/oh/lukeervin/
I AM SURE THE WORDS OF ENCOURAGMENT AND LOVE ARE GREATLY NEEDED AT THIS TIME.

UPDATE:JULY 30, 2003 4:40AM
I HAVE HAD SOME EMAILS ABOUT WHAT IS GOING ON WITH MY MAMMOGRAM RESULTS SO I WILL TRY TO BE VERY BRIEF HERE. I DO NOT KNOW! CAN YOU BELIEVE THIS? I HAD THE TEST DONE ON THE 17TH, MY APPOINTMENT TO FIND OUT THE RESULTS WAS ON THE 24TH (REMEMBER WE RUSHED BACK TO GET TO THAT APPOINTMENT). ANYWAY, AFTER CALLING BACK FRIDAY, MONDAY, AND TUESDAY TO LEARN NOTHING AND JUST GET MORE AND MORE MAD AT MY DOCTOR, I FIND OUT THE RADIOLOGIST HAS NOT EVEN READ THEM AT THE DIAGNOSTIC CENTER WHERE I HAD THE MAMMOGRAMS DONE! SO THEREFORE, THEY HAVEN'T LEFT POINT A TO GET TO POINT B! SO TODAY, I AM GOING TO THE POINT A TO MAKE THEM READ THE FILMS, FILL OUT THEIR REPORT AND I WILL PERSONALLY TAKE THEM TO THE GENERAL SURGEON AND SIT THERE UNTIL THEY GO OVER THEM WITH ME. THIS IS COMPLETELY NOT RIGHT. I AM SURE THERE IS A REASON AND I AM SURE IT IS A PERFECTLY GOOD ONE BUT I JUST DON'T HAVE THE PATIENCE RIGHT NOW FOR ALL OF THIS. IT IS TAKING A LOT OUT OF ME BECAUSE I WOULD JUST LIKE TO FINALIZE ALL OF THIS AND MOVE ON, YOU KNOW?

OKAY, NOW FOR SOMETHING A LITTLE FUNNY. THE OTHER DAY, 2 DAYS AGO, I WAS AT THE GROCERY STORE WITH A FRIEND AND I SAW THIS MAN THAT LOOKED VERY VERY FAMILIAR (I HATE WHEN I CAN'T REMEMBER WHO SOMEONE IS BUT THAT HAPPENS A LOT NOW!) WELL ABOUT A MINUTE LATER I TOLD MY FRIEND, I KNOW HIM. I KNEW HIS NAME AND I TOLD HER, "THAT IS MR.... MY SPEECH TEACHER FROM COLLEGE." WELL I WAS VERY PROUD OF MYSELF AND DID SOMETHING ELSE I NORMALLY DON'T DO, I WENT AND FOUND HIM JUST TO SAY HI AND TELL HIM ABOUT KATIA (WE LEFT SCHOOL SUDDENLY WHEN SHE WAS DIAGNOSED). ANYWAY, I TALKED TO HIM FOR A GOOD 15 MINUTES AND THE FIRST THING I SAID TO HIM WHEN I TOLD HIM ABOUT KATIA WAS THAT I REMEMBER I HAD MADE ONE OF MY FINAL SPEECHES IN HIS CLASS ABOUT HER AND THE TUMOR IN HER EYE. WE WERE GOING THROUGH ALL OF THOSE APPOINTMENTS AND I DECIDED TO SHARE IT IN A SPEECH WE HAD TO DO ABOUT THE UNCERTAINTIES... LITTLE DID I KNOW THEN. ANYWAY, I ALSO TOLD HIM THAT I HAD LEARNED IN HIS CLASS ABOUT NOT USING THE WORD, "UMMM" WHEN I TALK. TO SUM IT ALL UP, I GET HOME AND I TELL MYRON, "YOU WON'T BELIEVE WHO I SAW, MR ...., OUR OLD SPEECH TEACHER". YOU KNOW WHAT MYRON SAID? HE SAID, "TRACY THAT WAS OUR MATH TEACHER." DO YOU KNOW HOW DUMB I FEEL RIGHT NOW? THE TEACHER NEVER DID CORRECT ME, PROBABLY JUST FIGURED I HAD BEEN UNDER SO MUCH STRESS AND I HAVE POSSIBLY JUST LOST MY MIND. I FEEL LIKE AN IDIOT. I GAVE HIM MY EMAIL ADDRESS AND NOW I AM JUST WAITING FOR HIM TO EMAIL ME THE SAME THING. WELL, WHEN MYRON WENT TO WORK THIS MORNING, HE SAID, "YOU KNOW WHY I BET HE DIDN'T CORRECT YOU? I BET AT ONE TIME IN HIS CAREER, HE HAS TAUGHT SPEECH AT THAT SCHOOL AND DOESN'T REMEMBER WHETHER YOU WERE IN HIS CLASS OR NOT." I HOPE SO. I WAS FEELING VERY STUPID ALL THE WAY THROUGH THE EVENING LAST NIGHT. MY FRIEND IS GETTING A BIG KICK OUT OF THIS. I HOPE MYRON IS RIGHT! I THOUGHT THAT WAS FUNNY (WELL SAD THAT MY MEMORY IS THAT BAD) SO I THOUGHT I WOULD SHARE IT. YOU SEE KATIA'S EXPRESSION, THAT WAS PROBABLY THE TEACHER'S EXPRESSION WHEN HE GOT IN HIS CAR! LOVE, TRACY

JULY 28, 2003 3:07PM
Well I have a lot of updating to do. Please pray for the following families. Their websites are listed above in the links. Please pray for Chassidy's family as they go through making the plans for Chassidy's funeral. Chassidy earned her angel wings yesterday. She will be greatly missed.
Please pray for Priyanka and her family as she continues to be in critical condition.
A person not listed in our links which doesn't have a website is Betsy. Please pray for Betsy as she was just rushed to the hospital not breathing. She is a new friend of ours and very dear. Please pray for her family that God will give them the strength through these times.
Please continue to pray for our families that have recently lost children. The families of Jalen, Colby, Taylor, Reese, Anthony, Brandon and just so many are really suffering as they face life without their beautiful children.
This summer has just been so hard for so many. So many kids are fighting this battle and so many kids are just huge heroes with all they go through. People say kids can just bounce back easier but that isn't true. I think kids are innocent and because of that, they have strengths beyond our imagination.
Please always pray at night before you go to sleep for those children and adults and their families battling this disease. There are kids on machines fighting for every breath and there are kids who have been cancer free for weeks, months, and even years that are scared of a relapse or a tumor growing back. Families live each and everyday that a cold may get out of hand or a headache could be caused from something more than a stressful day.
Please pray for those children having MRI, CT scans, and tests run that the results will be clear.
Please pray for eachother, healthy or not. EVERYONE NEEDS PRAYER EVERY DAY!
Please pray for people that do not go through this fight with a family, friend or themselves to never judge those that are facing this. So many people have come to Katia's site that have no connection with cancer except through these sites and their hearts pour out kindness and encouragment that I just admire. That is true love and that is true compassion.
Thank you for coming to check on Katia today. Please visit the links above of the other children on her site and the sites of information pertaining to finding a cure and making a better life for those with these diseases.
Love, Tracy

Also, if you would like a prayer page made for your child, go to this address:

http://childrenofpromise.net/

They have it up in about 24 hours and the pages are very nice and can continuously be updated.


Friday, July 25, 2003 5:45 PM CDT

I WANTED TO UPDATE TO LET YOU KNOW CHASSIDY EARNED HER ANGEL WINGS. PLEASE GO BY THEIR SITE AS I AM SURE HER MOM, TONYA WILL NEED A LOT OF ENCOURAGMENT. THIS WAS A LONG HARD BATTLE.

Chassidy (Passed away July 27, 2003)

MAKE SURE YOU LISTEN TO THE SONG ABOVE. IT IS CUTE!

Interesting story at bottom of updates


NEW PHOTOS ADDED IN PHOTO ALBUM


UPDATE JULY 26, 2003 4:40 PM EST
I JUST WANT TO UPDATE REAL QUICK. KATIA IS DOING VERY WELL. SHE SEEMS TO BE OVER HER COLD FROM OUR VISIT TO THE SPRINGS. THAT IS WONDERFUL BECAUSE THAT IS THE FIRST COLD SHE HAS HAD AND FOUGHT ALL ON HER OWN WITHOUT GOING TO THE HOSPITAL. THAT MEANS HER LITTLE BODY IS DOING ITS JOB! SHE HAS JUST BEEN PLAYING AROUND THE HOUSE TODAY. WE HAVE NOTICED THAT KATIA HAS SO MUCH MORE VOCABULARY JUST IN THE PAST 2 MONTHS. AND, SHE LOVES TO USE IT! THANK YOU EVERYONE FOR YOUR ENCOURAGEMENT ALWAYS AND FOR VISITING KATIA'S PAGE:) LOVE, TRACY




FRIDAY, JULY 25, 2003

Hello everyone! I thought it might be about time I jumped in here and said HI. This is Myron, Katia's Daddy.

I wanted to personally thank you for the amazing amount of love and concern that you have shown my family and I. Daily I get to read your comments and your words of encouragement toward Katia's battle with Leukemia.

Katia is doing sooo well! We thank God daily for the miracle He is performing in her life.

Mainly I am writing this little note to thank you for the source of strength and support you have been to Tracy. Our world changed dramatically on April 15, 2002 and ever since, our focus has been to educate ourselves about this, and other, diseases and in doing so, share our lives and whatever knowledge and experience we have with others. Tracy has found a daily confidant in many of you and she looks forward daily to SHARING AND CARING. We raise our prayers everyday for each of you, and give thanks for those of you who show so much love.

Tracy has dedicated her days to being a friend and I am very proud of the person she is, a wonderful mother who devotes her everything for our three girls and yet seems to have so much more to share with others. Thank you for filling her days with anticipation and allowing her to be blessed and be a blessing to you.

I want to thank you for all the words of encouragement you have given me in reference to my music. I hope to start working on another project soon and be able to share it with all of you.

We are still working closely with Florida Blood Services and look forward to the opportunities allotted us to encourage people to share the gift of life, and to register with the National Marrow Donor Registry.

I would like to shortly address a recent negative entry that was made about my family's integrity. All I would like to say is we are a God fearing people and believe very strongly in the Golden Rule, "Do unto others as you would like done unto you". To that person I would like to say, take back those ugly, bitter, poisonous lies you said. My daughter's life is no joke.

In conclusion, may God bless and keep you all, receive best wishes and love and health from me and mine.

Your friend, Myron


This is Tracy, here are 2 new sites someone just sent me about a lady named Maha fighting Non-Hodgkins and another site about how to donate cord blood.

Come meet Maha (A VERY imformative site)
Cord Blood can save lives (Click here to learn more)



Two little boys who would love your visits:)


Jackson (A very very special boy)
Luke Ervin (Brain Tumor-Home on Hospice)


Too many people put off something that brings them joy just because they haven't thought about it, don't have it on their schedule, didn't know it was coming or are too rigid to depart from their routine.

I got to thinking one day about all those women on the Titanic who passed up dessert at dinner that fateful night in an effort to cut back.

From then on, I've tried to be a little more flexible.
How many women out there will eat at home because their husband didn't suggest going out to dinner until after something had been thawed? Does the word "refrigeration" mean nothing to you?

How often have your kids dropped in to talk and sat in silence while you watched Jeopardy! on television?
I cannot count the times I called my sister and said, "How about going to lunch in a half hour?" She would gasp and stammer, "I can't.

I have clothes on the line. My hair is dirty. I wish I had known yesterday, I had a late breakfast, It looks like rain." And my personal favorite:
"It's Monday." She died a few years ago. We never did have lunch together.

Because Americans cram so much into their lives, we tend to schedule our headaches. We live on a sparse diet of promises we make to ourselves when all the conditions are perfect:

We'll go back and visit the grandparents when we get Stevie toilet-trained. We'll entertain-when we replace the living-room carpet.
We'll go on a second honeymoon when we get two more kids out of college.Life has a way of accelerating as we get older The days get shorter,and the list of promises to ourselves gets longer One morning, we awaken, and all we have to show for our lives is a litany of "I'm going to," "I plan on" and "Someday, when things are settled down a bit." When anyone calls my 'seize the moment' friend, she is open to adventure and available for trips. She keeps an open mind on new ideas.
Her enthusiasm for life is contagious. You talk with her for five minutes, and you're ready to trade your bad feet for a pair of Roller blades and skip an elevator for a bungee cord.

My lips have not touched ice cream in 10 years. I love ice cream.It's just that I might as well apply it directly to my hips with a spatula and eliminate the digestive process.
The other day, I stopped the car and bought a triple-decker. If my car had hit an iceberg on the way home, I would have died happy.
Now...go on and have a nice day. Do something you WANT to......not something on your SHOULD DO list.

If you were going to die soon and had only one phone call you could make, who would you call and what would you say? And why are you waiting?

Make sure you read this to the end; you will understand why I sent this to you. Have you ever watched kids playing on a merry go round Or listened to the rain lapping on the ground?Ever followed a butterfly's erratic flight Or gazed at the sun into the fading night?

You better slow down. Don't dance so fast. Time is short. The music won't last.
Do you run through each day on the fly?
When you ask "How are you?" Do you hear the reply?
When the day is done, Do you lie in your bed with the next hundred chores running through your head?
Ever told your child, We'll do it tomorrow And in your haste, not see his sorrow?
Ever lost touch? Let a good friendship die? Just call to say "Hi"?
You'd better slow down. Don't dance so fast. Time is short. The music won't last. When you run so fast to get somewhere, you miss half the fun of getting there.

When you worry and hurry through your day, It is like an unopened gift....Thrown away... Life is not a race. Take it slower.
Hear the music before the song is over.


Thank you Shirley for sending me this story:)






Thursday, July 24, 2003 7:01 PM CDT

I will be updating tonight with a letter from Myron:)


Tuesday, July 22, 2003 11:03 AM CDT

UPDATE: OUR FRIEND CHASSIDY HAS NOT BEEN DOING WELL AT ALL. PLEASE PRAY FOR HER AND HER MOM. THEY HAVE BEEN GOING THROUGH A LOT OF UPS AND DOWNS, MAINLY DOWNS SINCE CHASSIDY'S BMT. PLEASE VISIT HER WEBSITE AND OFFER HER YOUR SUPPORT.

Chassidy's Site


PLEASE VISIT OUR FRIEND PRIYANKA'S PAGE (THE LINK IS ABOVE). KEEP HER IN YOUR PRAYERS AS SHE IS IN VERY SERIOUS CONDITION.

Priyanka's Page



Please drop by and visit Mark and sign his guestbook. He is a really nice little boy who we have just begun to know:)
Mark' Page


Well right now it is storming here and man do I mean storming!!! It actually blew down plants I have hanging up, soaked our back porch from raining blowing in and flooded our backyard. I had just emptied the little pool and put it away since we will be gone for 2 days (I can't wait!) Katia is all bummed because she thinks the rain means we don't go but we will! I mean unless a hurricane was to come in (knock on wood) then we will be on our way in the morning. I will be posting a lot of pictures when I get back because where we are going is just full of nature and beautiful freshwater springs! I have to share it with you:) You are my friends:)

Anyway, I am feeling decently well today. I actually slept through the whole night last night which is not normal for me. I am normally awakened at least 4 or 5 times each night and it is hard for me to go back to sleep. I just start thinking about things. My Caringbridge Families who are struggling, Katia, finances, school starting, my health, just everything. I usually am a very busy-minded person!

I cannot believe all this rain we are getting. Myron called and said lightening was striking very close to the airport and messing with the lights. We get a lot of lightening here. When I was 15, I lost the house I grew up in. It was struck by lightening. We weren't home. We actually went up to see a friend which lives about 10 minutes from where we are going tomorrow. PRAY FOR NO BAD LIGHTENING STORMS HERE! Anyway, the house was totally burned down. Nothing was left, I mean NOTHING!

Well I better get off of here and shut down this computer through the rest of this storm. I would really be in a mess if something happened to my computer!

I will check in on Caringbridge while I am gone but I probably will not update. I hope I can check in. I may not have any access to the computer. We will see.

Love, Tracy and Family:)

Our Family's need right now.


I have found this awesome site! It is an Online Bible. It has a concordance so you can search for a particular scripture with a few words and once you find what you are looking for, you can view it in King James, NIV, Living Bible, or a lot of other versions. The neatest thing is you can click on this button and it will read you the verse or chapter, whatever you chose. That only seems to work with the English versions. The other languages don't seem to be available to have it read them to you. I enjoy this and I urge you to try it. My favorite scripture (Myron's Great Aunt told me about it) is Psalm 91. I just clicked and had it read me the whole chapter. Try it and see what you think:)
Audio Bible (Very easy to use!)

"Some people drink at the fountain of knowledge, others just gargle."




Saturday, July 19, 2003 4:48 PM CDT

UPDATE: PLEASE VISIT OUR FRIEND PRIYANKA'S PAGE (THE LINK IS ABOVE). KEEP HER IN YOUR PRAYERS AS SHE IS IN VERY SERIOUS CONDITION.

Priyanka (AML - BMT just recently)


OUR DAY TODAY WAS PRETTY SLOW. I NEEDED DIAPERS FOR KATIA SO WE MADE A COMPLETE OUTTING OF THE TRIP TO WALMART. KATIA ACTUALLY HAS FUN GOING TO THE STORE SO I DRUG EVERYONE WITH ME. THEN THEY SPENT THE AFTERNOON PLAYING IN THE POOL AND GOOFING AROUND. THANK YOU FOR COMING BY AND KEEPING OUR FAMILY IN YOUR PRAYERS. I APPRECIATE SO MUCH WHEN I SEE PEOPLE GO VISIT OTHER KIDS I LINK TO. THEY REALLY APPRECIATE THE VISITS. WE HAVE A NEW FRIEND MARK. HIS LINK IS ABOVE ALSO. I THINK IT WOULD REALLY MAKE HIS DAY FOR PEOPLE TO GO BY AND SIGN HIS GUESTBOOK AND JUST SAY HELLO:) LOVE, TRACY

Mark(DX Wilm's Tumor He is a new friend of ours.)


July 19, 2003
Well today we made it in the pool! Katia got this as a wish from a Hugs and Hope member! We went in there two times today. The first time when we got her out, it started raining and thundering and she was screaming, "I don't want to go home, I don't want to go home." So I promised we would go in later. When Myron came home, he went out there with them and they talked me in to getting back in again. We were out there acting like dorks and I am sure our neighbors are wondering if we are "okay" but we had fun and took some cute pictures and videos and that is what matters in life! Happy Times! We need those right now, a LOT! I had a blast. I am sore right now but that will pass. I want to take advantage of the sunny days we are having in case it comes up a lot of rainy days again. STAY AWAY RAIN! Anyway, I just thought I would share this nice experience and put new photos on:) Love, Tracy

Our Family's need right now.



"Whether you think you can or whether you think you can not, you are going to be right."



Thursday, July 17, 2003 9:08 PM CDT

Well, I wanted to update earlier when I came home but I was just exhausted and decided to try to take a nap. I took about an hour nap but I am just so worn down feeling. I don't know why. Thankyou so much for all of your prayers. I do have to say today's appointments went very smoothly, not a lot of waiting and my nerves weren't too rattled. I did get lost driving from the first appointment to the second. I literally ended up at some railroad tracks? I had to turn around and back track. I have no results on anything yet. The mammogram is what has me concerned most because they ran quite a bit of films, had me wait, ran more films, had me wait and ran more films! There was quite long waits in between running them. They said I may have to come run a few more once they look at them more in depth? I am going to try to not let that bother me over the weekend (who am I kidding?)
The first appointment was to remove that holter monitor for my heart. That was such a nuisance. I am a person who LOVES to take showers!!! I couldn't with that thing on for 24 hours. Have no fear, I figured out a small way to "wash up" but there is nothing like a regular shower! Then when they removed it I was covered in red, swollen circles the size of half-dollars. With all that on me, I had to go do the mammogram:) Well please just pray that things come out well BUT I do want an answer to why I have been feeling so poorly and having so many bumps in my road of health. There are just too many things going wrong and I am only 33 years old, yes ONLY 33.
Katia missed me today and was so full of hugs and kisses when I came home. I felt bad because I basically walked in the door, headed to shower, and crawled into bed but she came in to tell me she loved me (over and over and over) and she kissed me and she said I was her friend, etc. etc. She REALLY missed me!
Myron went to go take his tests today for his job. They are retesting everyone AGAIN for layoffs. Pray he did well. He feels he did okay but we won't know till September when they start letting people go again. They are trying to get rid of a lot of people either by forcing part-time or letting you go completely. He is one of the federal airport screeners.
Well I am going to call it a night. I hope I feel more energized tomorrow.
Thankyou so much for checking up on us:)
Love, Tracy

Our Family's need right now.



Tuesday, July 15, 2003 4:01 PM CDT

UPDATE:JULY 16, 2003 1:20PM
WELL I AM HOME AND THE TESTS WENT OKAY. I DON'T KNOW ANY RESULTS AND I STILL HAVE THE MONITOR ON UNTIL NOON TOMORROW, THEN I WILL GET IT TAKEN OFF AND GO HAVE THE MAMMOGRAM. BUSY, BUSY! ANYWAY, THE TESTS ALL WENT SMOOTHLY EXCEPT THE TREADMILL. THEY DIDN'T WANT ME TO JOG AND I REALLY CAN'T "WALK" THAT FAST. SO WE STOPPED IT A LITTLE EARLY. MY LEGS AREN'T SHORT OR ANYTHING, THEY ARE JUST NOT GOOD AT MOVING ALONG. I USED TO ALWAYS BE THE FAST WALKER IN MY FAMILY BUT NOW MYRON IS ALWAYS TRYING TO GET ME TO CATCH UP. I SWEAR THAT IF ALL OF THIS TURNS OUT GOOD, I AM GOING TO WALK EVERY SINGLE DAY AT LEAST FOR 30 MINUTES. I WOULD LIKE TO GET A TREADMILL. I HAD ONE IN THE PAST AND I USED IT BUT WHEN WE MOVED TO HONDURAS FOR THOSE 2 YEARS, I SOLD IT. I TOLD EVERYONE ABOUT KATIA THERE AT THE DOCTOR'S OFFICE. THEY WANT TO MEET HER SOMETIME. I AM MOST NERVOUS ABOUT THE MAMMOGRAM AND MOST ANXIOUS FOR THOSE RESULTS. I HAVE TO GET MAMMOGRAMS DONE YEARLY BUT I HAVEN'T HAD ONE FOR ALMOST TWO YEARS NOW. I REALLY NEED TO STICK TO THAT ONCE A YEAR. ANYWAY, THAT IS ALL FOR NOW. I AM GOING TO LEAVE THE BOTTOM OF THIS JOURNAL ALONG AND CHANGE THE WHOLE THING TOMORROW WHEN I AM DONE WITH THE MAMMOGRAM. KATIA IS REALLY CURIOUS ABOUT ME WEARING THE MONITOR. SHE LIKES THIS. IT ITCHES THOUGH :(
ANYWAY, I DON'T COMPLAIN ABOUT THESE TESTS BECAUSE LIKE I SAID, I AM GLAD TO LIVE IN A COUNTRY THAT I AM ABLE TO HAVE THESE TESTS DONE AND I AM THANKFUL TO HAVE INSURANCE TO HELP OUT WITH THE COST.
LOVE, TRACY

I HAVE REALLY WANTED TO UPDATE A FEW TIMES TODAY BUT I HAVEN'T REALLY KNOWN HOW TO PUT INTO WORDS WHAT I WANT TO SAY.
I AM SO SADDENED BY THE LOSS OF DEAR TAYLOR JOHNSON. I KNOW SHE REALLY FOUGHT SO HARD AND ENDURED SO MUCH PAIN. I PRAY THAT SHE IS SO HAPPY RIGHT NOW AND FLYING FREE IN HEAVEN BUT THEN I AM SO SADDENED BY HOW HER FAMILY MUST FEEL. I KNOW THEY DIDN'T WANT TO SEE HER TO CONTINUE TO SUFFER BUT WE ALL WERE PRAYING A MIRACLE WOULD HAPPEN TO TAYLOR.

THIS SUMMER, THERE HAVE JUST BEEN SO MANY PEOPLE NOT WINNING THE FIGHT AGAINST CANCER. I KEEP UP WITH A LOT OF CARINGBRIDGE FAMILIES AND SOME OTHER FAMILIES NOT ON CARINGBRIDGE SITES BUT I ALSO KEEP UP WITH A FEW OTHERS THAT DON'T HAVE SITES. MOST I HAVE FOUND FROM LINKS WITH OTHER SOURCES. I DO HAVE TO SAY THAT THE FIGHT AGAINST LEUKEMIA AND ALL TYPES OF CANCER IS JUST FAR MORE BETTER IN THE U.S. AND CANADA THAN A LOT OF OTHER PLACES IN OUR WORLD. KIDS IN OTHER COUNTRIES DON'T HAVE THE HOPES WE DO HAVE. OUR HOPES MAY GET VERY LOW AT TIMES BUT THEIRS DON'T EXIST. A LITTLE WHILE BACK I CONNECTED WITH SOMEONE THROUGH EMAIL TELLING ME ABOUT A GROUP OF CHILDREN IN EL SALVADOR. THEY WERE DOING A "NEW TYPE OF TREATMENT" FOR THEM AND IT JUST DIDN'T WORK. THEY WEREN'T ABLE TO DO THE BONE MARROW TRANSPLANTS. THERE ARE MANY AMERICAN DOCTORS AND DOCTORS FROM OTHER COUNTRIES THAT DO SPECIALIZE IN THE TREATMENT OF CANCER TRAVELING AND TRYING TO HELP OTHERS EVERYWHERE. NO MATTER WHAT IT IS JUST SO SAD TO SEE A CHILD NOT HAVE THE CHANCE TO SURVIVE. THERE ARE A LOT OF PEOPLE IN THIRD WORLD COUNTRIES THAT HAVE LEUKEMIA AND CANCER AND AREN'T ABLE TO RECOGNIZE THE SYMPTOMS.

I JUST BROUGHT THAT UP BECAUSE THAT IS WHAT KINDA BROUGHT ME BACK AROUND SOME TODAY. ALTHOUGH THERE ARE MANY CHILDREN AND PARENTS AND ADULTS DYING FROM CANCER EVERYDAY IN THE UNITED STATES, WE DO HAVE A SENSE OF HOPE. I JUST REALLY PRAY FOR A CURE FOR CANCER. I JUST FEEL IT IS SO CLOSE TO US BUT YET SO FAR AWAY. IT HAS TO BE POSSIBLE. I DON'T KNOW. MAYBE I AM BABBLING. I AM TRYING TO FIND SOMETHING IN THIS HORRIBLE FIGHT TO BE REALLY GRATEFUL FOR AND THE THING I THINK GETS ME THROUGH ALL OF THIS IS "HOPE". I PRAY EACH AND EVERYDAY FOR A CURE BUT UNTIL THAT CURE IS FOUND I ASK GOD TO KEEP KATIA HEALTHY AND WELL FOREVER AND EVER. WHO KNOWS, MAYBE ONE OF THESE KIDS FIGHTING THIS DISEASE WILL FIND THE CURE IN THE FUTURE OR BE PART OF FINDING THE CURE.

OKAY, ON ANOTHER NOTE: PLEASE KEEP ME IN YOUR PRAYERS TOMORROW AS I GO TO THE CARDIOLOGIST FOR A DAY OF TESTS. I HOPE THESE TESTS WILL GIVE ME SOME ANSWERS AS TO WHY I HAVE BEEN FEELING BAD. I HAVE BEEN HAVING CHEST PAINS AND SHORTNESS OF BREATH FOR THE LAST FEW MONTHS AND I FINALLY AM TAKING THE TIME TO GO SEE WHAT THE PROBLEM IS.

HOWEVER, AFTER I MADE THIS APPOINTMENT, I ALSO DECIDED TO PURSUE GETTING MY YEARLY (LATE THOUGH) EXAM AT THE OBGYN AND JUST EXPECTED TO GO IN THERE AND GET A CLEAN BILL OF HEALTH, "COME BACK NEXT YEAR" KIND OF APPOINTMENT. WELL HE FOUND A LUMP IN MY LEFT BREAST/ARMPIT AREA SO THIS THURSDAY I AM GOING IN FOR A MAMMOGRAM. FROM THE SOUND OF HIM, HE THINKS IT IS "PRETTY LARGE" AND MY CONCERN IS THAT IT IS IN THE SAME GENERAL AREA OF MY CHEST THAT I HAVE BEEN HAVING THE PAIN AND MAYBE WHATEVER IS THERE IS CAUSING MY PROBLEMS WITH CHEST PAINS AND SHORTNESS OF BREATH?

SO I HAVE THE CARDIOLOGIST ON WEDNESDAY, THE 16TH AND THE MAMMOGRAM ON THURSDAY, THE 17TH AND I AM SUPPOSED TO GET SOME OF THE RESULTS FROM CARDIOLOGIST ON FRIDAY BUT MOST OF THEM ON AUGUST 4TH (LONG WAY AWAY TO ME!) THE FOLLOWUP FOR THE MAMMOGRAM IS ON JULY 24TH. LAST TIME THEY FOUND A LUMP DURING A SCREENING MAMMOGRAM AND THEY CALLED ME BACK TO THE DIAGNOSTIC CENTER AS I WAS DRIVING HOME FROM HAVING IT DONE. IT WAS LARGE BUT MY DOCTOR HADN'T FELT THAT. IT WAS IN THE RIGHT BREAST AND HE HAD JUST SENT ME TO GET A SCREENING MAMMOGRAM DONE DUE TO MY FAMILY HISTORY. THAT ENDED UP BEING BIOPSIED, TAKEN OUT AND FOUND TO BE BENIGN:)

SO PLEASE PRAY FOR ME BECAUSE I AM LACKING A LOT OF PATIENCE RIGHT NOW AND THIS ALL REQUIRES PATIENCE AND THEY SAY STRESS WILL KILL YOU SO WHY DO THEY STRESS ME OUT :)

OKAY ENOUGH ABOUT ME.

KATIA HOWEVER IS DOING WELL AND I AM SO VERY VERY HAPPY THAT HER CBC ALL LOOKED GOOD! THAT IS ALWAYS SUCH A RELIEF BECAUSE SHE HAS BEEN COMPLAINING THAT SHE IS "SICK". THEN YESTERDAY WE WERE DOING SOME RAKING IN THE YARD AND SHE GOT CLUNKED IN THE HEAD (THAT IS OKAY - PLATELETES ARE 279) AND IT LEFT A NICE SIZE BUMP WHICH IS PURPLE TODAY. THEN IF THAT WASN'T ENOUGH - TODAY SHE WAS PLAYING WITH TATIANA AND SHE TRIED TO PUSH OVER TATIANA AND FELL OFF HER FEET ONTO THE CARPET AND HIT HER CHEEK WHICH IS RED AND SWOLLEN. I DON'T KNOW HOW SHE GOT HURT SO BAD. HER FEET WERE ON THE FLOOR SO SHE DOESN'T HAVE THAT HARD TO FALL?

KATIA GOT A WONDERFUL PRESENT IN THE MAIL FROM A FRIEND, KATHY! SHE GOT A POOL TO PUT IN THE BACKYARD:) SHE IS SO SO HAPPY!!!! SHE HAS BEEN BEGGING FOR ONE AND THIS ONE HAS DUCKS ON IT. CAN YOU BELIEVE THAT? SHE IS SO HAPPY!

SHE ALSO GOT A LADYBUG, FROM JEANETTE, IN THE MAIL THE OTHER DAY AND SHE JUST LOVES THAT TOO!

IF I CAN GET SOME DECENT PICTURES, SHE HAS SOME COSTUMES SHE LOVES TRYING ON (LADYBUG, PRINCESS, BUNNY, MASQUERADE, JOKER, JUST A LOT OF THEM) BUT I KEEP MESSING UP WITH THE CAMERA. I AM TO SHAKY OR THE LIGHT IS LOW OR SOMETHING. I AM USUALLY NOT SO BAD AT THAT BUT I PROMISE TO PUT SOME NEW PICTURES ON. I DECIDED TO PUT ON WHAT I ALREADY HAD, THEY MAY NOT BE GREAT BUT SHE IS HAVING FUN!

PS Please take a chance to visit a new friend of ours. We met his dad at the Children's Cancer Center. His wife and him are both nurses and Mark was diagnosed with Wilm's Tumor. You can only imagine how much time they spend at the hospital. I have added his link above with our other friends.
Mark(DX Wilm's Tumor- He is a new friend of ours)


Our Family's need right now.


THANK YOU FOR CHECKING KATIA'S WEBSITE AND THANK YOU FOR THE COMPLIMENTS ON THE SITE. KATIA PICKS OUT THE GLOBES THAT WE LEAVE IN GUESTBOOKS. I NEED TO GET SOME MORE OF THEM:)

LOVE, TRACY

"Speak when you are angry and you will make the best speech you will ever regret."



Sunday, July 13, 2003 12:57 AM CDT

UPDATE: JULY 14, 2003 2:00pm
WE ARE BACK FROM CLINIC AND KATIA'S COUNTS ALL LOOK GOOD. HER THROAT LOOKS OKAY SO NOT SURE WHY THE CHOKING EPISODES (I THINK IT IS TEMPER) AND THE RASHES HAVE A CREAM TO PUT ON THEM, THINKING EXZEMA. ALL IN ALL I WAS VERY PLEASED WITH THE APPOINTMENT. ONE APPOINTMENT DOWN, 3 MORE TO GO WITH ME NOW. WEDNESDAY, THURSDAY AND FRIDAY:) HOPEFULLY I GET A GOOD REPORT CARD AT ALL OF THEM LIKE KATIA DID TODAY (HER LAB RESULTS ARE HER REPORT CARD!) I AM JUST SO SAD FOR TAYLOR'S FAMILY TODAY. I CAN'T SHAKE THAT FROM ME. I NEED TO FIND A PROJECT TO TACKLE SO I CAN DO SOMETHING TO TAKE MY MIND OFF OF THINGS FOR A WHILE.

UPDATE: JULY 14, 2003 11:00am: I HAVE JUST LEARNED THAT TAYLOR JOHNSON PASSED AWAY LAST NIGHT AND IS NOW WITH HER LORD IN HEAVEN. PLEASE KEEP THE FAMILY IN YOUR PRAYERS AND GO BY TO OFFER THEM YOUR KIND WORDS.


Taylor Johnson(Passed away last night July 13th.)


Please take a moment to pray for Taylor Johnson. She is in a lot of pain and having seizures. The family has returned home from the hospital to have friends and family members come over. Please pray for a miracle to happen to Taylor. She has just been having such a rough time.
Her website is http://www.caringbridge.org/page/taylorjohnson

You can click on the link in the above list of names.

Katia is doing well. Her doctor appointment is tomorrow. We are curious to see her counts because she has been having quite a few complaints on and off. With her being 3 years old, it is hard to get any really information out of her so we completely have to rely on her counts telling us anything.

I just want to say thank you to everyone who checks on her and prays for her. We have met so many wonderful people through this site and it has really warmed our hearts how kind people can really be.


Our Family's need right now.



Love, Tracy

PS Please take a chance to visit a new friend of ours. We met his dad at the Children's Cancer Center. His wife and him are both nurses and Mark was diagnosed with a Brain Tumor. You can only imagine how much time they spend at the hospital. I have added his link above with our other friends.
Mark(DX Wilm's Tumor- He is a new friend of ours)


PS Quote...

"You can regret that rose bushes have thorns or you can rejoice that thorn bushes have roses."


Friday, July 11, 2003 10:03 AM CDT



Stress Test (You must see this!)




Last night we went to our 2nd meeting at the Childrens' Cancer Center and really had a good time. The kids made T-shirts and played games. Sherry, thank you for finally getting us to get to the Center!
Anyway, this morning Katia is sorta moping around here. Her thumb is pretty torn up. For those of you who don't really know her past, when Katia was first diagnosed, her thumb (from sucking it) looked like it would fall off! She really had it torn up and skin just literally peeling off. Now at the knuckle, it has few rips. We go to the clinic on Monday but in the past when it does this it is because her WBC is lower or not doing its job right. Katia's thumb has become her "health guage" to me. I will be sure to update. Next week is the "Big Doctor Week" for us. Katia on Monday, Cardiologist for me on Wednesday and Thursday, and also on Thursday I have the Mammogram. I don't know how I am going to work out the two appointments on Thursday but they are both each equally important. I don't feel as nervous as I did about these appointments, I will just be relieved when they are behind be. I am praying August will be a quiet month:) I say that when each new month is approaching and each month turns out very hectic. Please pray for my whole family during this upcoming week. We have just made it a point to not really discuss the UPCOMING appointments but just find out what is going on and fix it. My family has been very helpful (especially Sharayah) in making sure I don't get myself winded out. She is such a huge help to me!!!!! I am glad school will be starting again for their sake because they really do enjoy school and Katia enjoys having one on one time with me. I will however miss them being around here. They do go through a LOT of groceries however but I think that is more Katia than Sharayah and Tatiana. Katia eats all day but she never really looks like she does so we let her pretty well eat when she is hungry. She has been very tempermental lately and having some pains here and there and headaches but I am not sure of the source of this. I wish kids came with "Health Meters" and we just had to look at the meter and it would say where something is wrong, what is wrong and how to treat it. Wouldn't that be nice? But then how would the doctors stay in business? Okay, let me try to find a quote. We were talking about "Friends" last night at the Center so I will try to find one along those lines:)



"A Friend: One who knows all about you and loves you just the same."


Thursday, July 10, 2003 9:10 AM CDT

Good morning. I just came in from outside and what a nice day! It isn't too hot and there aren't any clouds to speak of right now :) Hopefully the weather will stay nice for the week of the 23rd and 24th of July so we can have a nice time up in Northern Florida :) That will be great. Katia has only really been swimming a couple of times so I want the weather to be good so she can enjoy the weather. Last night I sat down with Katia and we went through a lot of the Caringbridge Sites and she actually really recognizes quite a bit of the kids we visit often. I think Katia will grow up to have a lot of compassion for others. Sharayah and Tatiana show a lot of care, too. They are all 3 such good girls and I am blessed to have them as my daughters. They are well-rounded individuals. I can't believe how fast they are growing up. Before I know it, I won't have them running around and playing anymore. I will miss that. Tatiana is always giggling and making weird voices and she always flashes a BIG smile anytime she catches my eye. Although sometimes the noise can get quite loud, I would miss it if I didn't hear it. School will be starting again in just a few weeks and the house will be all quiet during the day. Katia isn't noisy when they aren't home. She is my shadow. Well that is about all for now. Let me put a quote. I like reading all of these quotes:)

"A smile is an inexpensive way to improve your looks."

:)


Wednesday, July 9, 2003 6:46 PM CDT

I am just wanting to update. I have just heard some very different perspectives on what some of us go through everyday and I was in the midst of updating. I don't ever want people to think I am down on life. I am thankful, so thankful on what I have each and everyday. Things can always be worse and they are not:) I am thankful for Katia's little smiles each day:) My kids are very forthcoming of the adventures of everyday life. They make it all though clear how us adults worry too much. Katia made a big mess today, about 30 minutes ago which was too cute! She spilled a thing of Hersheys Chocolate and that brings me to reality! She thought it was oh so funny and after 30 seconds or so, I found it funny TOO! I wish all of us could look through life in a "Hershey Chocolate" sort of way :) I am just grateful to have those moments! Love, Tracy


Wednesday, July 9, 2003 5:38 PM CDT

You know right now I am so freakin upset by people, I don't know that I should update. People are so caught up in just normal day to day living. I could one time face that and know that was normal but now it is not!! It just seems so unreal to me! I mean we face such real times and such totally mind binding things. I can't really put into words what I mean. I don't think people understand what we go through on a normal basis. Nothing is normal anymore. We look at life in a totally different angle. I think more to British Ancestry that people see a day to day living. I mean you celebrate today and you mourn today. Does that make sense? I meet with people and I email people. Some people really understand the meaning life and some people don't. I mean some people understand what every day means. Love, Tracy


Tuesday, July 8, 2003 6:18 PM CDT

UPDATE JULY 9, 2003 2:51PM



Click Here. You must take this stress
test!!!




PLEASE PRAY FOR MYRON AND I TODAY. THINGS ARE JUST VERY VERY STRESSFUL RIGHT NOW AND ALTHOUGH I KNOW EVERYONE HAS STRESSES, THEY ARE JUST BUILDING UP AND GETTING TO BE WAY TOO MUCH FOR US TO KEEP ON DEALING WITH. WE KNOW WE HAVE TO BUT IT JUST GETS OVER-THE-TOP! I DON'T KNOW HOW I WOULD GET THROUGH MY LIFE WITHOUT MYRON BY MY SIDE AND HE FEELS THE SAME WAY. MY HEALTH KEEPS HIM VERY NERVOUS AND UPTIGHT AND ALL THE EXTRA DOCTOR VISITS AND JUST A LOT OF THINGS GOING ON RIGHT NOW ARE REALLY CAUSING A LARGE AMOUNT OF PROBLEMS. PLEASE JUST PRAY THAT WE FIND THE RIGHT WAY TO CONFRONT EVERYTHING AND STILL TRY TO ENJOY THIS SUMMER. GOOD NEWS IS WE ARE SUPPOSED TO DRIVE UP TO NORTHERN FLORIDA TO VISIT WITH SOME FRIENDS OF OURS. THEY LIVE BY A LOT OF FRESH WATER SPRINGS AND A RIVER WITH A LARGE CAMPGROUND. WE ARE PLANNING TO BE THERE FOR 2 DAYS. THEY HAVEN'T MET KATIA SO OF COURSE WE WILL ALL BE IN FOR A GOOD TIME. I REALLY REALLY REALLY NEED THE BREAK! LOVE, TRACY

PS I JUST GOT THESE FROM MY FRIEND, HOLLEY (SHE SENT ME THESE LAUGHS AT THE PERFECT TIME) SO I WANT TO SHARE THESE GOOD CLEAN JOKES WITH YOU:)


*****


Three boys are in the schoolyard bragging about their fathers. The first
boy says, "My Dad scribbles a few words on a piece of paper, he calls it
a poem, they give him $50." The second boy says, "That's nothing. My Dad
scribbles a few words on a piece of paper, he calls it a song, they give
him $100." The third boy says, "I got you both beat. My Dad scribbles a
few words on a piece of paper, he calls it a sermon. And it takes eight
people to collect all the money!"


*****

An elderly woman died last month. Having never married, she requested no
male pallbearers. In her handwritten instructions for her memorial
service, she wrote, "They wouldn't take me out while I was alive, I don't
want them to take me out when I'm dead.

*****


A police recruit was asked during the exam, "What would you do if you had
to arrest your own mother?" He said, "Call for backup."


*****

A Sunday school teacher asked the children just before she dismissed them
to go to church, "And why is it necessary to be quiet in church?" Annie
replied, "Because people are sleeping."


*****

At Sunday School they were teaching how God created everything, including
human beings. Little Johnny seemed especially intent when
they told him how Eve was created out of one of Adam's ribs. Later in the
week his mother noticed him lying down as though he were ill, and
said, "Johnny, what is the matter?" Little Johnny responded, "I have pain
in my side. I think I'm going to have a wife."


July 8, 2003
Well we had a good day. I haven't felt all that great but okay. We went this morning to a meeting at Florida Blood Services. We are part of the Hispanic Advisory Committee. We are trying to raise awareness for people to regularly donate blood and to sign up for the National Marrow Registry. For anybody's sake, I pray the registry keep growing but right now, if Katia was to need a transplant, we have about a 30hance of finding a match since she is part of the minority group. That scares me. Right now, there are grants for the cost of becoming a registered donor for the minority groups. Please tell everyone you know, minority or not, how important it is to sign up for this program. You just go to your local blood bank and say you want to be put on the registry. They take a simple blood tests and if the time comes that you can save someone's life, THEN they get the bone marrow from you. If a match isn't there, it could take precious time for drives to try to find a match. That is time a lot of patients do not have when it comes down to the need of a transplant. Please pass on Katia's website to anyone you think may want more information on how to become a donor. I will be glad to lead them in the right directions with the people I know. Also, did you know during Hurricane Season, there is a great demand for blood donations? Did you know that blood donated only last for 42 days and platelettes (a blood clotting agent that many patients need when receiving chemo or after accidents which helps your blood to clot) only last 5 days! We did a whole tour today of the labs and they showed us how the test the donations, store the donations, and everything. It was very interesting and I am determined to make a big difference in donations coming in. I don't just want this for Katia's sake but anyone's sake. You never know when you may need a blood transfusion due to illness, surgery or an accident and we have all learned that NOBODY knows if their family will be touched by cancer, leukemia or other blood diseases. Please tell your friends and family to really take this to heart. I am going to be designing a special website to link to in the next few days, explaining more. I haven't felt to good to be on the computer but this just has me PUMPED UP! Well, that is all for now. Katia is due to go in next Monday. We are concerned about a rash and a cough that she has. The cough is mainly when she starts to cry and the rash? I don't know. I think it is due to chemo. Well thank you for checking in on Katia. I know many people check this site everyday and I am so happy to sign on and see more and more people signing on. I hope to pass some very good information along through this site. If there is ever a question you have, please don't hesitate to ask in the guestbook and I will do my best to find an answer. Someone ask a personal question, where we got our kids' names from.

Sharayah is Hebrew and we got it from a Christian song by Amy Grant, "Sharayah".

Tatiana is Russian. We got it from the 1992 Olympics, a russian gymanist named Tatiana Gitsu.
Katia is short for Katerina. We got this from a book but I already had thought of Katerina due to the 2000 Winter Olympics, skater Katerina Goordeeva but I didn't want the full name. Myron found Katia in a book.

Okay middle names.

Sharayah is Sharayah Aminta. Aminta is Myron's mother's name. We promised if we had a girl (there hadn't been a girl born in the family for 13 years) that we would pass on the name Aminta! We had a girl!

Tatiana is Tatiana Lynn. Lynn is my middle name :)

Katia is Katia Ariani. Ariana is a place in the Bible and we made it Ariani so it just sounded better with Katia.

Now you have the history the girls' names.

Myron was named after a music composer (doesn't that just make sense?)

I was named after someone my dad helped house during the Cuban Crisis. Alot of military personel were sent to live off base and my dad took one of them. The man's daughter went back with his wife to live with her folks and the daughter's name was TRACY! If I had been a boy, I would have been ANDREW. But I was a girl and therefore, TRACY!

A lot of useless information for you:)

Now for the quote...

"Bibles that a falling apart are usually read by people who are not."

Love, Tracy

PS Do you have a quote you would like shared? Leave it in the guestbook for others to see:)


Monday, July 7, 2003 4:24 PM CDT

Well today has been a productive day. I went and had my chest x-ray done and so far have heard nothing but I guess that is good, huh? Other than that, not much is going on here. Katia is still very tempermental and quick to have a temper problem. She still starts choking anytime she gets upset but for now I am dealing with it and just giving her water. Her lips looked a little pale today but other than that she looks okay. Sharayah said Katia's lips looked a little purple but when Katia came to me, she looked more like she was biting her lips. I will bring it all up at her appointment next Monday. I am not so much looking forward to Sharayah going to highschool. That means she won't be in uniform which brings us back to school clothes shopping. I enjoy uniforms. Tatiana can still wear hers from last year except she needs a few new shirts but Sharayah, I have to get her some pants and shirts because somehow she is just a blooming bud! She has grown in a month! Finances are terrible here but some how we manage. I am not complaining. I pray for health of Katia and he has granted us that thus far and for that I am so thankful. I still have my upcoming tests on the 16th and 17th of the month. Please pray for me. I need prayer for patience and good results or at least results I can deal with:) Love, Tracy

"Slow down and enjoy life. It's not only the scenery you miss by going too fast - you also miss the sense of where you are going and why."


Sunday, July 6, 2003 7:00 PM CDT

Well not much has gone on today. I added a new song above so have a listen. I really like reggae music so I thought I would throw in a classic reggae song:)
I have a new idea here. I want to put quotes each time I update. I think quotes are neat so they are going to just be at the bottom of whatever journal I update. They may or may not have any particular meaning to me and they may or may not have any particular meaning to you but...

Well that is all. We still haven't had a chance to go out and do our sparklers. Today was a nice day but Katia has been on the grumpy side and she keeps acting like her throat is bothering her, mainly when she gets upset, she starts choking and ask for water, speaking of which... We were eating dinner last night and right when I took a drink of water, Myron said something funny and I went to laugh and man oh man, I started choking for quite some time. I mean I caught my breath but I couldn't talk. Today my throat is still a little sore but I felt like my head and chest were going to just pop. That was scary for me, Myron and the kids. But I am okay now, thank you:)

Okay, so here goes the first of many quotes...

"Whether you think you can or whether you think you can not, you are going to be right."


Saturday, July 5, 2003 8:40 AM CDT

Well I have one word for yesterday. RAIN!!! That is all it did from about 5:00 pm on till around 10pm. We heard a lot of people go out around 9:30 and start throwing off fire crackers anyway but Katia was already asleep. I had gotten them sparklers and those poppy things you throw down and they make a pop noise. She did about 5 of those during a break in the rain right after we ate dinner (hotdogs). Anyway, that is okay, we have today to do it. Who says you can only celebrate independence on July 4th? Not much else is new here. I am just waiting out the time till my appointments. Good news. One of my friend's Mom just found out she had a lump in her breast and yesterday they found out is was benign. Benign is in the air? Well that makes me feel more positive. Oh, on a sad note. ALL of our fish died overnight!!! They weren't even in the same tanks. One was my Beta fish which I just got him cause the last one died. The other 4 were fish we had for months in the larger tank. I don't know what happened. Well, time to either replace fish or put away tanks. My little Beta Fish was only here for about 2 weeks :(
Hope everyone had a good and safe 4th of July.
Love, Tracy


Friday, July 4, 2003 6:26 AM CDT


Happy 4th of July everyone!

Random Acts of Kindness



Click here for the song "Stars and Stripes Forever"





Click here for the song "God Bless the USA"





Click here for the song "America The Beautiful"




Click here for the song "God Bless America"





I was planning on updating this last night but I have just not been myself. I am really trying to stay positive over all of this:) {{{{POSITIVE THINKING}}}}}
I am just kinda worried that the chest pain and shortness of breath and now this lump could be connected. I wish I could just walk in and get all the tests done immediately cause I really hate waiting and I would love to have my energy level back ASAP! I am not used to being worn out. I like taking care of people not being taken care of. But, I guess the 16th and 17th will be here soon enough:) Until then I just have to be like Katia :) She is my little hero by the way she handles everything. Even in her darkest days she was very much a fighter. She had some REALLY REALLY bad days that she couldn't even sit up and was in really bad pain but she always just kept her little determination train moving full speed a head.
Well I hope everyone has a great 4th and be safe on the roads. I am not really planning anything. The most I plan to do is cookout some hotdogs or something and have some sparklers. I am not really a person for a bunch of firecrackers banging around me.
Please continue to pray for all of our dear families that are in the hospital during this holiday. Last year we were home on the 4th and ended back in on the 7th but just being home on a holiday was a huge thing! We had some friends over and were just so happy to be having people over to the house. I am so pleased Noah and Jordan are out of the hospital:) That really made me happy. Pray for everyone on the road and traveling that they will be safe.
Love, Tracy


Wednesday, July 2, 2003 1:00 PM CDT



UPDATE, JULY 3, 2003 @ 9pm
HAPPY 4TH OF JULY ALL OF YOU:)
KATIA PICKED OUT THIS MICKEY GLOBE!




JULY 3, 2003
Well today I had my long awaited for appointment with my OBGYN that kept getting cancelled. The good news is that I finally had my appointment. The bad news is he found a lump under my left arm area. So I have to get another mammogram on the 17th. I just went through this August 2001. This is on the opposite side. The biopsy showed the tumor was benign. Let's pray this time is the same result. I am not sure about a biopsy. I guess they want to see the mammogram but the OBGYN is saying they would probably biopsy near the end of this month. SO WE WILL SEE! Katia is doing fine. The rash areas have turned white on her. Her appointment is for the middle of the month too. I have a lot of doctor visits this month and then hers. Hopefully all goes well and July will be the end of so many doctor appointments. I would like to have a nice August. I turn 34 in August and right now with everything going on, I feel 43. For my 32 birthday, I was waiting for biopsy results, last birthday was in the hospital with Katia. Don't get me wrong, I am not complaining. I mean things could be better but they could be worse too. I will keep everyone posted on when the appointments are very everything so keep checking. God Bless each of you. I hope summer is proving to be enjoyable. Love, Tracy


Tuesday, July 1, 2003 11:26 AM CDT

I can't believe it is already July! It seems like this year just began. I am trying to figure out what to do for the 4th of July. I don't like being around fireworks too much or too close. The noise just makes me too jumpy. I am thinking about a park during the day and then home at night with sparklers and such. Katia's rash is about the same. We think it may just be eczema or something. She is due to go in end of next week anyway so I am going to wait for that. I have been to my doctor appointment 2 times and both times the appointment was cancelled due to someone going into labor. The appointment is OBGYN. So I am going to try again tomorrow morning. So if you live in my area, please wait to go into labor until around noon. Thank you:) Aside from all of that, 4th of July always brings back a sad memory for me. I had a dog for 19 years and our last full day together was 4th of July 1995. He died the next day. I always think about that because that dog had become so close to me. I lived out in the middle of nowhere growing up but we had a LOT of lightening!!! It used to scare me to death. Well Skeezer, that was his name, would always come find me and stay right beside me. He always seemed to know when something was bothering me. He would always come meet me when I was walking from the bus stop to home, he would fetch balls, or he would just sit and be bored if I didn't want to play. He loved cats until Myron came along. Myron taught him about CHASING and BARKING at cats! Skeezer would do whatever it took to protect me and he was so great for that plus he was the most HOUSEBROKEN dog I have ever seen. NO ACCIDENTS even when he was left home for the day and overnight. He would just give you that unhappy look when you finally did come in and then go pee for 5 minutes. He was a first place winner many times in the Florida State Fair Dog Obedience Shows and Showmanship Shows. I always miss him. His picture is still on my fridge from the last time he was groomed. He was a Cock-a-Poo, black with a white stripe down the front of his neck and on each paw. In the last picture he is wearing a flag bandana. If dogs can be proud to be Americans, Skeezer was! Okay, I have rambled on and on but that is one thing I have never talked about on this site, my dear doggie. Katia never knew him but she knows all about him. She sees his picture and knows how special he was:) The little dog we have now, Scruffy (a Peek-a-Poo) was gotten for Skeezer since we thought he needed a friend but Skeezer died 3 years later. Scruffy is the opposite, not too smart, will have an accident in the house 2 minutes after coming inside, and well he really only cares about his safety and his belly being full:) I guess that is all we can expect. You can see Skeezers Picture in the Photo Album! Love, Tracy


Sunday, June 29, 2003 5:42 PM CDT

I have been visiting a lot of sights today and reading updates and guestbooks but I really haven't been signing. I just wanted to put some prayer request on the list of sights I mentioned above. So many people are going through so much right now. We have had a pretty quiet day around here. Myron and I left for 2 hours and went to the movies. We saw Bruce Almighty (very funny!). When we came home, Sharayah, Tatiana, and Katia had made us "fresh fruit smoothies". Quite good I must say! I need to take Katia in to the clinic. She is having rashes around her eye and her knees and elbows. It just looks like rough dry skin in most of the areas but the eye is getting red and itching her. Nothing I do seems to clear it up so... I will probably take her in Tuesday. Monday I have an appointment. I thought this was "summer BREAK". Anyway, hopefully all is well and she just needs a different cream than I have been using. Aside from that, the weather here is being funny. It is perfectly sunny and then BAM, lightening, thunder and down comes the rain. I guess that is okay. The kids have gotten out a little bit each day while it is dry. Well, I just wanted to update the list of links and this journal so please visit the mentioned links and sign their guestbooks so they know you came by:) I am going to place the links here also for today. Love, Tracy
PS You can always find the links a little above the journals so you can keep checking back on these kids' progress.

Please visit our friends' websites


Brittany Zipter(Total Inspiration!)
Luke DeAndrea(Brain Tumor Reaccurance)
Priyanka (AML - BMT just recently)
Max (AML- BMT just recently)
Chassidy (AML - BMT just recently)
Joey Wynn(AML - BMT just recently)
Baby Noah (Krabbes Disease)
Baby Jordan (Hunter's Syndrome)
Baby Kharisma (Histiocytosis)
Isabella (AML - Having B/P problems)
Davin Rucker (Many developmental delays due to treatments for ALL)
Taylor Johnson (Bone Cancer - Having a lot of pain lately)
Samantha (ALL)
Aizee (ALL)
Sean Flanagan (Ewings Sarcoma - Just went through transplant recently)


Saturday, June 28, 2003 11:48 AM CDT

I wasn't going to update the journal because not much is going on here but then I remember that is a good thing to not have much going on. It has been a semi-rainy day here. We had such a fun time the other night and yesterday we finally went throught the gifts given to us and Katia from the night before. The picture above is from the UFCW Region 3 Golf Tournament/ Auction fund raising event. This group gets together each year to raise money for the Leukemia & Lymphoma Society. They do a great job of organizing this event. Everyone there was just so nice and eager to help towards finding a cure. We were able to get up and speak at the event and although I got pretty tongue tied, Myron finished it off with a song:) So that was great. Everyone was really paying attention and so sweet and kind. Then they had a silent auction - where people walk around and write their bids down on gifts they want. Following that was a live auction, actual bids taking place. A lot of fun and great food. Sometimes when people would win a bid, they would bring the item over to us! That was shocking. I didn't expect that at all. I mean they are already donating to the Leukemia and Lymphoma Society but then this too! There was an older gentleman there who has worked at raising money for Leukemia Research for years. Just this past March he started treatment after being diagnosed with Leukemia ALL himself. I met him and he said he was handling the chemo really well so far. I pray he does good and he can be blessed by the research he has helped finance. All in all it was just a night of a complete outpouring of compassion. Thank you. Love, Tracy


Thursday, June 26, 2003 11:25 PM CDT

PICTURES FROM THE UFCW LEUKEMIA FIGHT FOR A CURE 2003 ABOVE! THANK YOU SO MUCH FOR THE WONDERFUL EVENING AND THE FUNDS YOU RAISED FOR THE LEUKEMIA AND LYMPHOMA SOCIETY. GOD BLESS EACH OF YOU:)

I just want to update really quick before I go to bed. We had a very nice day:) Katia's cousin, Jada, came to visit. She is a year younger than Katia. They had alot of fun and we were so happy to see her! Then tonight we had a speaking engagement at a fundraising event for the Leukemia and Lymphoma Society. That was a lot of fun! Katia was all over the place and she really likes meeting everyone. They had a golf tournament earlier in the day and tonight was a dinner and auction. People are just amazing. we got up and told a little bit of Katia's story and Myron sang a song, accapella ( I think I spelled that close enough). It's a Thank You song he wrote just for people like were there tonight. People were there just to raise money for research and funding. It is amazing. Everyone was so willing to donate by bidding on items. THEN, a lot of people would bring things they had just won in the auction and give them to Katia. She even got a BIKE tonight. She got a lot of gifts but she walked around all night with these 2 chickies that chirp when you press their bellies. Myron asked me what was my favorite part of tonight and that was it! The fact that people were so sincere and so thoughtful and unselfish. We listen to the news of all the bad things people do all the time. Why don't they play stories like that on the news? People helping others with no selfish motives, just pure kind hearts! I was so touched by all the generousity! Thank you! Although Katia was running around all night like the energizer bunny, she did fall asleep in the car on the way home:) so I am the only one awake and I am ready to call it a night too:)
I will post pictures tomorrow of today. I just wanted to update and go to bed!

Love, Tracy

PS I haven't gotten around to checking on everybody today but I will get around tomorrow. I pray everyone is doing okay and looking forward to a good weekend.
I hear Luke is moving along and doing well up at St. Jude. He is beginning treatments.
Luke's Site

Please also remember little Bella. She is going through her testing still. Bella's site


Please always pray for eachother:)
Love, Tracy


Tuesday, June 24, 2003 8:59 PM CDT



NEW PHOTOS ARE ADDED IN THE PHOTO ALBUM:)


Well today went well. I went to the doctor and I like her very much. I had never been to that facility before but they were very pleasant and I didn't have to wait to long. They have set up for me to return on July 16th for a day of tests. She listened very well to all of my many complaints and she was actually very attentive (hard to come by) and gave a few ideas of what the problem could be. She asked me about my family and I told her I have an extremely helpful family, kids and husband, that are really not the stresses in my life. She thought that was great so instead of calling me back and forth for a test here or test there, it will be done all on one day and then I will wear something for a while that tracks the heart or something.
Okay, aside from me! This evening went well. First we were expecting company so we made dinner and had the house all ready but they are delayed by a day. So we had a quiet evening around the house and I took Katia out on the porch and read to her after dinner and then went out on the NICE DRY SWINGS!!! No rain today!!!! It was so nice to get out there and let her play.
Then we came in and have been pretty lazy since. I promised the doctor I would take it easy and I do plan to:) I really don't slave around my house. My family is very very helpful. I may have to remind the kids to do something but they do whatever and usually with a good attitude or a "passing" attitude. I guess not many people enjoy sweeping, vacuming and cleaning like I do:)
Anyway, Katia and I sat here and put the globes on her site, the little animated globes. She picked them and she knows the basic walk through of how to put them on so if I start doing something else, she gets all upset (like read email). So they are on there and to her, they all have special stories behind them. I am raising a Web Designer. Well that is all for now.
I just wanted to catch up with all my dear friends and let you know how Katia is doing and the day at the doctors went. I appreciate so much the prayers. I can't say that enough:)
Love, Tracy



Please keep Isabella
in your prayers. She has Leukemia AML and is currently back in the hospital. Isabella is in the hospital due to her kidneys and B/P. She will be having a kidney biopsy on thurs or Fri. Please say an extra Prayer.


Monday, June 23, 2003 7:39 AM CDT

I am back from my appt. and I have a lot of tests to go run on July 16th. I will explain more later. They do feel there is something but they had to schedule for the tests or do an admit. Obviously it is better for me to schedule. I appreciate your prayers. I have just been tired and I am tired of being tired!

Well I think I see the sunshine peeking out this morning and I haven't heard ran for the last hour or so....
Could it be? A dry day? We will see.
Katia has already looked outside and is all happy right now. The yard squishes when you walk on it:)
I can't wait to hear what they have to say about our water levels NOW.
Katia has been a little on the whiney side the last few days so lets hope it is due to lack of leisure. She did go see NEMO yesterday and through most of it she did really well. In the end she just wanted to go to sleep but then so did me and Myron. At night when we sleep, we have one of those OCEAN machines, you know the ones that sound like rain falling or ocean waves. Well NEMO was having to many water sounds and I just was SO tired before we left. We came home, at dinner and were in bed around 8PM. All of us!
Tomorrow is the big appointment for me. The cardiologist. Maybe he can help explain why I feel so tired so much and maybe why my blood sugar levels are just staying low now.

On another note, yesterday I was looking up some scriptures about God's Promises in the Bible. Something just got me wanting to look. Do you have any Bible Verses that you really love and they have a lot of meaning to you? Let me know what they are and why they are so important or meaningful to you. Psalms 103:3 is a little confusing to me. Now, I am not one to question God but I am one to not understand some of the scriptures, a LOT of the scriptures. I know sometimes I may read them differently than what they were meant but here is Psalms 103:1-5

1. Bless the Lord, O my soul;
And all that is within me,
Bless His holy name.
2. Bless the Lord, O my soul,
And forget none of His benefits;
3. Who pardons all your iniquities;
Who heals all your diseases;
4. Who redeems your life from the pit;
Who crowns you with lovingkindness and compassion;
5. Who satisfies your years with good things,
So that your youth is renewed like the eagle.

The part that caught my eye was in verse 3, "...heals all of your diseases..."

Anyway, I just thought I would bring that up and see if anybody had anything to add.

Remember to please pray for Luke. They had a very long day the other day if you visit his page. He was scheduled for an MRI that would let them know what radiation treatment to start on and when they got in the car to head over there, all of the sudden they heard CRUNCH! Luke had gotten hold of a pretzel, so... the MRI was postponed. That was Friday. I know they have some testing today and he is going to have pic line put in this morning. Hopefully they can get that MRI done and get Luke into his treatments.

Please also continue to pray for those families that have recently lost their children. This has to be so horrible for them and confusing. I don't know how that feels and I pray I never do but I know that they need our prayers.
Well, Ms. Katia wants to eat so I must go. She is so patient with me here at this computer. She ask so nicely, "Mommy, you know what I want? I would like some breakfast." Just so softly, I have to struggle to hear it! So let me go get her that oatmeal she ADORES! Love, Tracy


Saturday, June 21, 2003 1:44 PM CDT

HIYA, I am of course surrounded by a rainy day again but we are getting used to this! Did you see the link right above here that says "click to hear a fun song"? Well I am gonna change those songs often so that should be kinda fun. They are just songs most people will know, nothing original.
Anyway, I haven't gone by and checked on everyone yet which is very unlike me but I have been staying pretty busy around here today just going through papers and filing a lot of stuff.
I pray everyone is doing great and that is what I am doing right when I am done here. I don't get around to a LOT of sights everyday but I try to visit most of the ones I keep up with at least once a week.
I really enjoy seeing the new pictures up and hearing about summer activities. Some of the links I have hear for others to visit, the children are doing really well, much better than expected. That is great!
Well, I should go. I want to visit some sites and then finish what I have been doing before I sat down and played around with the music on the page. Let me know what you think about it! Love, Tracy

Please remember to check on Luke D. Luke and his family have arrived at St. Jude Hospital and are beginning treatment. This is a tremendous little boy and his parents are just such a strong source for Luke.
Love, Tracy


Friday, June 20, 2003 9:25 AM CDT

ALWAYS CHECK THE BOTTOM FOR MORE UPDATES:)


We had a lot of fun last night at the Children's Cancer Center:) We met a lot of the people we only knew online. Some of the ones we wanted to meet weren't there so NEXT time we will see them. Katia definitely wants to go back and all of us had a very good time.
The picture at the top of Katia's page is Katia with Ivan from Florida Blood Services. He is a friend of ours and we saw him the other day at the Grand Opening of their newest building in St. Pete. Katia likes him so of course I HAD to get their picture, you know me - Picture! Picture! Picture!
Also, check the photo album, there are new pictures in there from the Children's Cancer Center last night. The girls really had a lot of fun!
Today, right now, there is a glimmer of sunshine outside so MAYBE they can go out and play and Myron can MOW!
Love, Tracy
PS 30 MINUTES LATER - RAIN RAIN RAIN RAIN RAIN!!!


EVERYBODY SAY, "RAIN RAIN GO AWAY,
COME AGAIN SOME OTHER DAY,
LITTLE KATIA WANTS TO PLAY!!!!"


UPDATE: JUNE 20, 2003 5:45PM
OKAY, THERE IS SUCH A THING AS RAIN AND THEN THERE IS TOO MUCH RAIN! WE ARE JUST HAVING TOO MUCH RIGHT NOW. IF THEY SAY OUR WATER LEVELS ARE STILL LOW WHEN THIS FLOODING IS DONE, THAN WE HAVE A LEAK UNDER FLORIDA! IT HAS JUST RAINED ALL DAY! THERE WAS ABOUT A 30 MINUTE BREAK AND I TOOK KATIA FOR A WALK AROUND THE BLOCK AND SENT THE KIDS AND THE DOG FOR A WALK AROUND THE BLOCK AND THEN...
WOW! WE HAVE HAD A NICE DAY AROUND HERE THOUGH JUST KINDA CLEANING (WE DO THAT EVERYDAY OF OUR LIVES) AND JOKING AROUND. THE KIDS HAVE EATEN A LOT TODAY AND THEY ARE BEGGING ME TO NEVER LET THEM SNACK SO MUCH! WE WILL SEE HOW LONG THAT LAST. USUALLY I SAY NO HALF THE TIME THEY ASK FOR SOMETHING BUT TODAY, I SAID, "SURE" JUST TO SHOW THEM WHY I SAY NO. I HOWEVER AM GOING TO GO BACK ON MY DIET (WEIGHT WATCHERS) AND TRY TO LOSE MY LAST 15 - 20 POUNDS I NEED TO LOSE! WHAT BETTER TIME TO DO IT THAN THE PRESENT? I HAVE BEEN KINDA GOOFING ON IT AND STOPPED LOSING WEIGHT. SO PRAY FOR ME THAT I WILL DISCIPLINE MYSELF. USUALLY ONCE I MAKE UP MY MIND ON SOMETHING, NOTHING CAN TURN ME AROUND:) THAT IS A GOOD THING I HAVE. MY BLOOD SUGAR STILL DROPS LOW NO MATTER WHAT I DO. THE DOCTOR, MY FAMILY PRACTIONER SAID TO EAT MORE PROTEIN (WHICH I HAVE) AND LOWER MY CARBS (WHICH I HAVE) AND IT IS JUST PROGRESSIVELY GETTING WORSE SO I WILL BRING IT UP TO THE CARDIOLOGIST ON TUESDAY. THEY ALREADY KNOW I AM HAVING PROBLEMS WITH IT. WELL THAT IS ABOUT IT. SINCE IT IS RAINING SO MUCH I CAN UPDATE MORE OFTEN BECAUSE I CAN'T BE MY REGULAR BUSY LITTLE SELF:) LUCKY YOU GUYS!!!!
LOVE, TRACY

Please remember to check on Luke D. Luke and his family have arrived at St. Jude Hospital and are beginning treatment. This is a tremendous little boy and his parents are just such a strong source for Luke.
Love, Tracy


Thursday, June 19, 2003 4:02 PM CDT

Well today has been SO rainy here. It has been for the last few days. Katia wants to go outside but she just can't. Poor little thing. Anyway, tonight we are going to the Children's Cancer Center. It will be our first time going there so we will meet people we have only known online. Yesterday, the Florida Blood Services Grand Opening was on the news so that was nice. We did an interview for the spanish channel but there was quite a bit of coverage from other channels. We got to see some of the people we had met earlier from other interviews we had done. The little 4 year old boy was so adorable! I hope we can stay in touch with his parents and keep up on how he is doing. His name is Shae (I don't really know how to spell it). Anyway, it is nice to see these types of success stories. The parents were just so grateful to the donor and the donor was just so happy to have participated in saving Shae's life:) It was just all around a great event!

Please remember to check on Luke D.They went to Tennessee on Monday to find out about his plan of treatment after finding out his brain tumor has come back. Continue to pray for the families of Angel Anthony, Angel Jalen, Angel Colby and Angel Akaida. Please also continue to pray for Brittany Zipter as she continues to try to gain strength and enjoy summer. She has been through so many treatments over the past months.


Wednesday, June 18, 2003 3:02 PM CDT

Well today has been along day but a GOOD day:) First we went to the Florida Blood Services Grand Opening of their new building and it was so nice. We met a family who's son had AML and received a Bone Marrow Transplant over a year ago and is doing great! He was 4 now. He also met his donor for the first time today and it was so nice to see the donor be able to meet the recipient. Tears were shed but it was so nice. That was this morning.
This afternoon, we had Tatiana's doctor appointment (we just got home) and all the results are clear. He just wants her using the bathroom more often and see if that avoids her getting the pain. Since she was on the antibiotic for 30 days, she hasn't been having pain so she is off the antibiotic. So I pray things just stay good and it was something minor that has cleared up. I saw the scans and her bladder and kidneys look good. He said her WHOLE colon was full that she needs to make sure she empties that once a day. So I am feeling much less stress right now. Myron had his appointment, Tatiana had hers and mine is next week. I have two, cardiologist and gyno so after that our summer should be more relaxed:)
Thank you for all of your prayers. Katia just woke up from a nap and is trying to climb on me so I have to go:) Love, Tracy

Please remember to check on Luke D.They went to Tennessee on Monday to find out about his plan of treatment after finding out his brain tumor has come back. Continue to pray for the families of Angel Anthony, Angel Jalen, Angel Colby and Angel Akaida. Please also continue to pray for Brittany Zipter as she continues to try to gain strength and enjoy summer. She has been through so many treatments over the past months.


Tuesday, June 17, 2003 12:53 AM CDT

UPDATE June 17, 2003 @9:55PM AT BOTTOM OF STORY


What Do You Value Most?



A young man learns what's most important in life from the guy next door.



It had been some time since Jack had seen the old man. College, girls, career, and life itself got in the way.

In fact, Jack moved clear across the country in pursuit of his dreams.

There, in the rush of his busy life, Jack had little time to think about the past and often no time to spend with his wife and son. He was working on his future, and nothing could stop him.

Over the phone, his mother told Jack, "Mr. Belser died last night. The funeral is Wednesday." Memories flashed through his mind like an old newsreel as he sat quietly remembering his childhood days.

"Jack, did you hear me?"

"Oh, sorry, Mom. Yes, I heard you. It's been so long since I thought of him. I'm sorry, but I honestly thought he died years ago," Jack said.

"Well, he didn't forget you. Every time I saw him, he'd ask how you were doing. He'd reminisce about the many days you spent over 'his side of the fence' as he put it," Mom told him.

"I loved that old house he lived in," Jack said.

"You know, Jack, after your father died, Mr. Belser stepped in to make sure you had a man's influence in your life," she said.

"He's the one who taught me carpentry," he said. "I wouldn't be in this business if it weren't for him. He spent a lot of time teaching me things he thought were important. Mom, I'll be there for the funeral," Jack
said.

As busy as he was, he kept his word. Jack caught the next flight to his hometown.

Mr. Belser's funeral was small and uneventful. He had no children of his own, and most of his relatives had passed away.

The night before he had to return home, Jack and his mom stopped by to see the old house next door one more time. Standing in the doorway, Jack paused for a moment. It was like crossing over into another dimension, a leap
through space and time. The house was exactly as he had remembered. Every step held memories. Every picture, every piece of furniture ...

Jack stopped suddenly.

"What's wrong, Jack?" his mom asked.

"The box is gone," he said.

"What box?" Mom asked.

"There was a small gold box that he kept locked on top of his desk. I must have asked him a thousand times what was inside. All he'd ever tell me was 'the thing I value most,'" Jack said.

It was gone. Everything about the house was exactly how Jack remembered it, except for the box. He figured someone from the Belser family had taken it.

"Now I'll never know what was so valuable to him," Jack said.

"I better get some sleep. I have an early flight home, Mom."

It had been about two weeks since Mr. Belser died. Returning home from work one day Jack discovered a note in his mailbox.

"Signature required on a package. No one at home. Please stop by the main post office within the next three days," the note read.

Early the next day Jack retrieved the package. The small box was old and looked like it had been mailed a hundred years ago. The handwriting was difficult to read, but the return address caught his attention.

"Mr. Harold Belser" it read.

Jack took the box out to his car and ripped open the package. There inside was the gold box and an envelope.

Jack's hands shook as he read the note inside.

"Upon my death, please forward this box and its contents to Jack Bennett.

It's the thing I valued most in my life." A small key was taped to the letter.

His heart racing, as tears filling his eyes, Jack carefully unlocked the box.

There inside he found a beautiful gold pocket watch. Running his fingers slowly over the finely etched casing, he unlatched the cover.

Inside he found these words engraved:
"Jack, Thanks for your time! Harold Belser."

"The thing he valued most ... was ... my time."

Jack held the watch for a few minutes, then called his office and cleared his appointments for the next two days.

"Why?" Janet, his assistant asked.

"I need some time to spend with my son," he said.

"Oh, by the way, Janet ... thanks for your time!"

Life is not measured by the number of breaths we take but by the moments that take our breath away."

~Author Unknown~





Katia is doing very well today and having fun playing outside right now. Tomorrow afternoon, we will get Tatiana's results so I will update on them tomorrow evening. We are attending something at 8AM tomorrow with the Florida Blood Services so tomorrow should be a very busy day. Thanks for checking up on us:)
Love, Tracy




PS UPDATE @ 9:55 PM
What has Tatiana always feared most!?

Getting stung by a bee! Well today, she did in the backyard. She was screaming and really scared. She ran in and we washed it off and watched for it to swell or any bad reactions - NONE! She got through it with flying colors. I gave her a SCOOBY-DOO bandaid and she was on her way. Is she still scared of them? YES, even dead ones she says. BUT, the fact is she knows what it feels like and she knows she has no allergies to them:)




Sunday, June 15, 2003 6:51 PM CDT

UPDATE: JUNE 16, 2003 1:30 PM
PLEASE KEEP TATIANA IN YOUR PRAYERS TODAY. SHE HAS HER TESTS AT THE HOSPITAL AT 3PM AND THEN WE FIND OUT RESULTS ON WEDNESDAY. I AM JUST PRAYING THAT SHE DOES WELL THROUGH THE TESTS AND CAN RELAX. TATI HATES DOCTORS AND HOSPITALS (WHEN IT IS FOR HER) SO SHE USUALLY FREAKS OUT PRETTY BAD. I WAS ON THE PHONE WITH THE RADIOLOGY DEPARTMENT AND THEY SAID THEY WOULD WORK WITH HER AND TALK HER THROUGH THE ALL THING. ALL CHILDREN'S HOSPITAL HAS ALWAYS WORKED VERY WELL WITH KATIA SO I FEEL CONFIDENT WITH GOING THERE. THE TEST IS A VCU. THEY USE A CATHETAR TO SEE INSIDE THE BLADDER AND A TYPE OF CONTRAST TO WATCH THE BLADDER FILL UP AND EMPTY. LOVE, TRACY
Update @5:30PM: We are back and the tests all went well, Tatiana did very well. We should get the results back late Wednesday afternoon:)
Today was bittersweet. Myron had a nice day, most which was spent at work, but we are always grateful his job is there. I know jobs are being taken away from some of our Caringbridge Families. Of course in today's day and age, no job seems to be stable! I just couldn't help but to think about all the people that I know (and don't know) that lost children recently and since last father's day. How much can actually change in a year is so scary. This time last year we were in the hospital, going through treatment for a horrible bacteria Katia got following one of her chemo treatments. I just am so grateful things have been going so well for her and she is just so happy and healthy. Today, that made Myron very happy. Last Father's Day was spent at the hospital on 2SW in room 264. I remember it very well. My dad was in town and we had a meeting at the hospital with everyone, Myron's Mom, Myron, my dad, me and Katia, Sharayah and Tatiana. We were just glad to be able to be together. A little boy had just passed away a few days or maybe a week before. That was the first death I witnessed after Katia's diagnosis. It is just amazing how all of this has changed my life. My whole train of thought is different now. I feel like I stay pretty somber through my days and that may not be fair to everyone around me. I just really don't feel much like goofing around anymore or acting stupid. (I was really good at acting stupid and goofing around before) Well, I have Myron sitting here playing his piano and singing, Katia is running around very happy in a pretty little red, white, and blue dress and Sharayah and Tatiana are cleaning up the dinner dishes. Seems like a scene from a Disney Movie but there is just so much below the surface. I just pray things will begin to feel more "normal" and I can enjoy things again VERY SOON. I pray that prayer for all of you who feel tied up in worry or have just lost a dear family member either by cancer, some other disease, or even old age. I pray for people going through seperations, job losses, auto accidents, just everything. I have learned that when I think I have problems, someone else has more. I like the song Myron is singing right now, it is about WORRY BEING LIKE RAIN, AND IT JUST FALLS ON YOU BUT YOU HAVE TO LEARN THAT THE SUN WILL SHINE AGAIN SOMEDAY BUT FOR NOW, JUST LET IT RAIN.
I like that song, I gotta go:)
Love, Tracy


Saturday, June 14, 2003 2:46 PM CDT

UPDATE BELOW BUT THIS PART IS FOR FATHER'S DAY!


Happy Father's Day to all the Dads of those
here or in Heaven...

I found some poems
I thought would be special for today:)


DADDY, I LOVE YOU


Daddy, I love you

For all that you do.

I'll kiss you and hug you

'Cause you love me, too.

You feed me and need me

To teach you to play,

So smile 'cause I love you

On this Father's Day.


 


A LITTLE GIRL NEEDS DADDY


A little girl needs Daddy

For many, many things:

Like holding her high off the ground

Where the sunlight sings!

Like being the deep music

That tells her all is right

When she awakens frantic with

The terrors of the night.


Like being the great mountain

That rises in her heart

And shows her how she might get home

When all else falls apart.


Like giving her the love

That is her sea and air,

So diving deep or soaring high

She'll always find him there.


MY DAD IS A SURVIVOR


My dad is a survivor too...

which is no surprise to me.

He's always been like a lighthouse

that helps you cross a stormy sea.


But, I walk with my dad each day

to lift him when he's down.

I wipe the tears he hides from others.

He cries when no one's around.




I watch him sit up late at night,

with my picture in his hand.

He cries as he tries to grieve alone,

and wishes he could understand.




My dad is like a tower of strength.

He's the greatest of them all~!

But there's times when he needs to cry...

Please be there when he falls.




Hold his hand or pat his shoulder...

and tell him it's okay.

Be his strength when he's sad,

Help him mourn in his own way.




Now, as I watch over my precious dad

from the Heaven's up above...

I'm so proud that he's a survivor...

And, I can still feel his love~!



Written by Kaye Des'Ormeaux




MEN DO CRY


I heard quite often "men don't cry"

Though no one ever told me why

So when I fell and skinned a knee

No one came to comfort me.

And when some bully boy at school

Would pull a prank so mean and cruel

I'd quickly learn to turn and quip,

"It doesn't hurt", and bite my lip.


So as I grew to reasoned years

I learned to stifle any tears.

Though "be a big boy" it began,

Quite soon I learned to "be a man".


And I could play that stoic role

While storm and tempest wracked my soul

No pain or setback could there be

Could wrest one single tear from me.




Then one long night I stood nearby

And helplessly watched my son die,

And quickly found to my surprise

That all that tearless talk was lies.


And still I cry and have no shame

I cannot play that "big boy" game,

And openly without remorse

I let my sorrow take it's course.


So those of you who can't abide

A man you've seen whose often cried,

Reach out to him with all your heart

As one whose life's been torn apart.


For men do cry when they can see

Their loss of immorality.

And tears will come in endless streams

When mindless fate destroys their dreams.


--Ken Faulk


~A GRIEVING FATHER'S PRAYER~


Dear Lord,

This pain is much too hard to bare, once again I’m kneeling by my chair.

You know grief’s heartache and pain, you see my tears that fall like
rain.

You know this has brought me to my knees, help me Lord, I’m begging,
please.

This world has no meaning since that awful day, I had to stand by while you


led my son away. I know Heaven is our home and glory is so grand...

But, I can’t help my family when I can’t even stand.

Everyone expects more from me because I am, The Dad.

They don’t understand he was the best friend I ever had.

Lord, I’ll never understand why our children have to die, but would

help others know when this happens....even strong men cry.




~EVEN STRONG MEN CRY~


You think because he’s a man he shouldn’t
feel the pain,

of having his heart broken and tears that fall like rain.

Men you say are stronger and never show their fears,

they don’t let life destroy them, a fortress through the years.

Let me tell you of a battle waged daily on this dad,

leaving his heart in shreds with no happiness to be had.

Death came to call and took his loving son,

it left his heart broken, his world undone.

This battle has him crying and crawling on his knees,

if you listen you can hear him begging, "Why God, please?"

He sees what it has done to his children and his wife,

as they live daily with grief’s never ending strife.

Now his closest friend, his son, lives beyond the sky,

and when death comes to take your child..... even strong men cry.


~Charlene Dickerson~ ©2001


WHAT IS A FATHER?


A father is a person who is forced to endure
childbirth without an anesthetic. He growls when he feels good and laughs
very loud when he is scared half-to-death. A father never feels entirely worthy
of the worship in a child's eyes. He is never quite the hero his daughter
thinks . . .Never quite the man his son believes him to be. And this worries
him sometimes. (So he works too hard to try to smooth the rough places in
the road of those of his own who will follow him.)


A father is a person who goes to war sometimes
. . .and would run the other way except that war is part of his only important
job in his life, (which is making the world better for his child than it has
been for him.)


Fathers grow older faster than people, because
they, in other wars, have to stand at the train station and wave goodbye to
the uniform that climbs onboard. And, while mothers cry where it shows, fathers
stand and beam . . .outside . . . and die inside.


Fathers are men who give daughters away to other
men, who aren't nearly good enough, so that they can have children that are
smarter than anybody's. Fathers fight dragons almost daily. They hurry away
from the breakfast table, off to the arena which is sometimes called an office
or a workshop. There, with callused hands, they tackle the dragon with three
heads; Weariness, Works, and Monotony. And they never quite win the fight,
but they never give up.


Knights in shining armor; fathers in shiny trousers:
There's little difference as they march away each workday. I don't know where
father goes when he dies, but I've an idea that, after a good rest, wherever
it is, he won't just sit on a cloud and wait for the girl he's loved and the
children she bore. He'll be busy there too . . .repairing the stars, oiling
the gates, improving the streets, smoothing the way.


~Author Unknown


What Makes A Dad


God took the strength of a mountain,

The majesty of a tree,

The warmth of a summer sun,

The calm of a quiet sea,


The generous soul of nature,

The comforting arm of night,

The wisdom of the ages,

The power of the eagle's flight,


The joy of a morning in spring,

The faith of a mustard seed,

The patience of eternity,

The depth of a family need,


Then God combined these qualities,

When there was nothing more to add,

He knew His masterpiece was complete,

And so, He called it ... Dad


Author unknown


The Little Chap Who Follows Me


A careful man I ought to be,

A little fellow follows me,

I do not dare to go astray

For fear he'll go the selfsame way.


I cannot once escape his eyes,

Whate'er he sees me do, he tries;

Like me, he says, he's going to be,

The little chap who follows me.


He thinks that I am good and fine,

Believes in every word of mine

The base in me he must not see,

The little chap who follows me.


I must remember as I go,

Through summer's fun and winter's snow,

In building for the years to be

The little chap who follows me!


Please Daddy, Let's Go


A little girl with shining eyes,

Her upturned face aglow,

Said, "Daddy, it's almost time

For Sunday School, you know;

Let's go and hear of Jesus' love

Of how He died for all,

To take them to His home above

Who on His name will call."

"Oh no," said Daddy, "Not to-day;

I've worked hard all the week;

And I must have one day of rest,

And fishing's find they say;

So run along, don't bother me,

We'll go ANOTHER day."

Months and years have passed away,

But Daddy hears that plea no more--

"Let's go to Sunday School..."

Those childish days are o'er.

And now that Daddy's growing old,

And life is almost through,

He finds some time to go to church,

BUT, what does daughter do?

She says, "Oh, daddy, not to-day.

Was out almost all night;

I've got to get a little sleep:

Besides, I look a fright."

Then daddy lifts a trembling hand

To brush away the tears;

Again he hears that pleading voice,

Distinctly through the years,

He sees a small girl's upturned face,

Upturned with eyes aglow,

Saying, "It's time for Sunday School.

Please, daddy, won't you go?"


~~Author Unknown


 


DAD SAYS...


Don't ask me, ask your mother.


Were you raised in a barn? Close the door.


You didn't beat me. I let you win.


Big boys don't cry.


Don't worry. It's only blood.


Don't you know any normal boys?


Now you listen to ME, Buster!


I'll play catch after I read the paper.


Coffee will stunt your growth.


A little dirt never hurt anyone--just wipe it
off..


Get your elbows off the table.


I told you, keep your eye on the ball.


Who said life was supposed to be fair?


The fair's in October.


Always say please and thank you.

That way, you get more.


If you forget,

you'll be grounded till the end of the world.


You call that a haircut?


"Hey" is for horses.


This will hurt me a lot more than it hurts you.


Turn off those lights.

Do you think I am made of money?


Don't give me any of your lip, young lady.


You call that noise "music"?


We're not lost.

I'm just not sure where we are.


No, we're not there yet.


Shake it off. It's only pain.


When I was your age ,

I treated MY father with respect.


As long as you live under my roof,

you'll live by my rules.


I'll tell you why. Because I said so. That's
why.


Do what I say, not what I do.


Sit up straight, knucklehead!


So you think you're smart, do you?


What's so funny? Wipe that smile off your face.


Young ladies perspire, they do not sweat.


If I've told you once,

I've told you a thousand times


You want something to do?

I'll give you something to do.


You should visit more often.

Your mother worries.


This is your last warning.

.

I'm not sleeping, I was watching that channel.


What keeps those jeans of yours from falling
off?


I'm not just talking to hear my own voice!


A little pain never hurt anybody.


I knew how to cook

when I was your age, young lady!


Don't take yourself so seriously,

take what you do seriously!


Laugh at yourself first,

you'll take the bite out of others doing so for you.


You're always a winner if you lose with a smile.


Go tell your mother she wants you.


Any fights, I win!


That's the best way I know to put out an eye!


You could drive a wooden man nuts!


In MY day......


Eat it! It will grow hair on your chest!


Don't forget to check your oil.


Four things come not back:

time past, the spoken word,

the sped arrow and a missed opportunity.


You can want in one hand and spit in the other


and see which one fills up first.


If your friend jumped off a bridge would you?


If I didn't love you so much I wouldn't punish
you...

I would let you do whatever you wanted.


Stop crying or I'll give you a reason to cry.


You have things so easy!


When I was your age

I had to walk to school in 10 feet of snow

up hill both ways!


You're only young once.


You're gonna like it, whether you like it or
not!


The early bird gets the worm. Rise and shine!


Don't take any wooden nickels!


Life is a journey

and you've just reached

one of many speed bumps to come.


Don't look at me in that tone of voice!


How many times

do I have to pound that into your head?


I'm not lost, it's just over the next hill!


If you want to do something,

do it because you want to.

Don't do it because someone else did.


As long as you tried your hardest,

that's all that matters.


What do you think this is, your birthday?


If ifs and buts were candy and nuts

then we'd all have a merry Christmas.


Don't believe anything you hear

and only half of what you see.


What do you think I am, a bank?


What part of NO don't you understand?


I don't care what other people are doing!

I'm not everybody elses father!


You're not leaving my house dressed like that!

What will other parents think?


Could those sleeves be any longer?


You look like a bag lady!


Headache remedy:

Put your head through the window

and the pain will be gone.


Worrying about things you can't change

is like a rocking chair...

it gives you something to do,

but it doesn't get you anywhere.


Hurt much? I didn't feel a thing.


I feel for you, but I can't reach you from here.


If you're gonna be dumb, you've gotta be tough.


Didn't your teacher learn you anything?!


You can marry a rich guy just as easily

as you can a poor guy.


It's hard to be good, and easy to be bad.


If you're going to steal a car,

at least make it a Cadillac

(but don't call me asking for bail.)


I got my tongue wrapped around my eye-tooth

and couldn't see what I was saying.


Men are like buses.

Just wait on the corner

and another one will come along.


Don't tell on anybody

unless you tell on yourself first.


Hey, did you hear me talking to you?


. I'm not watching television. I'm resting my
eyes.


Don't use that tone with me!


Am I talking to a brick wall?


If I catch you doing that one more time, I'll...


Act your age.


Two wrongs do not make a right.


Wipe your feet!


Enough is enough!


Don't make me stop the car!


What did I just get finished telling you?


You know you're always

gonna to be Daddy's little girl...


I found all of this around the Internet but I
wanted to bring them to one place for you DADS on Father's Day.


God Bless You on this day:)





Katia is running around here and pretty well tearing this house apart today. I am not sure why she is so hyper but that is a welcome thing here. I am feeling quite a bit better today, I wasn't a few hours ago but now I am. We had a nice chat this morning with some new people we met. I would like to take the chance to introduce this new group. They are "Code Blue" and they want to visit children via their website, mail cards, send emails, etc. They want to help bring smiles to childrens' faces. I chatted with them this morning and Katia sat there and listened to them! She really enjoyed it! Thank you folks from Code Blue. You guys are something else! Anyway, you can drop by and visit their site. It is new. Code Blue Site
Aside from that. I have been doing a lot of thinking. I mean these last few weeks have just been very very bad! I get very (I don't want to say depressed) but maybe overwhelmed by so many children losing their lives. I really don't even keep up with how many adults lose their lives to these diseases. I mean as well as children, plenty of mothers and fathers and sisters and brothers just are fighting a battle no one should have to fight.
Through this I have made so many friends but I just wish they weren't there to be friends. I don't mean that in a bad way but I mean I wish they weren't, you weren't, going through a circumstance that brought you here.
It is just an ongoing sea of information and hard times and we are always seeking answers and treatments and just looking for a solution!
What happened to the days of having people over for BBQs and just talking about stupid stuff! A ball game? Bad grades on our kids's report cards (well maybe I wouldn't want that either).
Is there anyone out there living that life that we refer to as "normal"? Maybe everyone has big things but we voice ours more. I don't know. I mean they are TV talk shows centered around people's abnormal lives so maybe everything is "abnormal". You know?
I am going to really try to focus on a smaller part of life. The here and now. I want to not think ahead to the "what if" and all that. I want to focus on here and now. I want to enjoy this summer, this week, TODAY!
I can appreciate the fact that we are home, unlike last summer. Right now a dear friend of ours, Luke, is facing going back into treatment for a brain tumor. Things are really going full speed for this family and they really need your prayers! Strong prayers. Prayers for healing and for rest and for travel mercies. Prayers the doctors can think clearly and the parents can make the right decisions. Prayers that Little Luke can handle the fact he has to go back into treatments. Please visit their website. This little boy has been remarkable. I have never met them but I feel like I have known them a VERY long time:)
Luke's Site

Well it looks like we are about to have another Florida Storm today so I better close and turn off my computer. Yesterday it just lightened and hailed and POURED down rain. We thought a tornado might just pop up. We all get in our bedroom, had on our shoes and socks (and clothes) and were just watching the news. I HATE LIGHTENING!!! I am very afraid of it and try to stay clear from it.

Please pray for all of our friends and families and always just ask God that each of us can find happy moments where I minds can wonder off of daily troubles and worries. Pray for smiles and laughter:) :) :) :)

Katia says hello to all of you:)

Love, Tracy

Please pray for our friends listed below. Take a chance to visit their site and leave encouraging words in their guestbooks. Thank you:)


Jalen(Earned his Angel Wings June 3, 2003 We will miss you so so much)
Chassidy(Just received BMT. Day 20 and things are finally looking up)
Colby (Earned his Angel wings June 12, 2003)
Connor (Recovering good from his surgery)
Anthony(Earned his Angel Wings June 2, 2003)
Brittany(Battles with this cancer EVERYDAY!)
Hannah and Madeline (Twins fighting Leukemia)
Christina (Katia's 10 year old hospital friend with AML)
Cassie in Europe (Myalgic Encephlopathy, M.E.)
Luke D. (His brain tumor has come back)
Taylor Johnson(Neuroblastoma)

Aizee(Leukemia ALL-Please go by to say hello in their guestbook)


Thursday, June 12, 2003 4:47 PM CDT

As most of you know by now, we lost another beautiful boy today to cancer. Colby, I learned earlier, has passed away. Colby was another one of these that had just fought so hard. I knew he was getting sicker but I really didn't expect to get that news today. I guess we never really expect it though. I walked outside after I read their update and just scanned around for a butterfly. Somehow seeing one really makes me feel better. Instead of a butterfly at first, I saw a Dragon Fly. For those of you who don't know that story, here goes.


The Dragonfly Story
Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in awhile one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.
"Look!" said one of the water bugs to another. "one of our colony is climbing up the lily stalk. Where do you think she is going?" Up, up, up it slowly went....Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return...
"That's funny!" said one water bug to another. "Wasn't she happy here?" asked a second... "Where do you suppose she went?" wondered a third.
No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. "I have an idea". "The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why."
"We promise", they said solemnly.
One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broke through the surface of the water and fallen onto the broad, green lily pad above.
When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings...The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly!!
Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.
The dragonfly remembered the promise: "the next one of us who climbs up the lily stalk will come back and tell where he or she went and why." Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water...
"I can't return!" he said in dismay. "At least, I tried. But I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what has happened to me, and where I went."
And the dragonfly winged off happily into its wonderful new world of sun and air.......
Thank you God, for the story of the water bugs and the dragonflies.





Over the past few hours I have done a lot of thinking and praying and even a lot of questioning. I look at Katia and she looks healthier than most "healthy" kids so why can't I enjoy that and relax? I constantly have the fear of a relapse. I know that worrying is nothing that is helfpul but as a human and a MOM, I just do worry. Myron did have his appointment today and they put him on a fiber therapy each day and want to see him again if it worsens. It has been a little better for the past week or so since his trip so maybe this will help but if it worsens, he just needs to call and they will do something similar to a colonoscopy so he is feeling better and so am I about that. Myron HAS to be healthy and he says the same thing about me. I HAVE been feeling better but I have also been completely limiting my activity and I can't continue to do that, of course but I am until my appointment. I think a lot IS probably due to stress but stress is part of my life so I have to be able to work around it. Only God's grace has gotten me this far and He will continue to bless me with ongoing endurance as I need it but for now, I am relaxing quite a bit and trying to enjoy the summer. Myron and I are going to try getting away a little more often for a bite to eat or something. I always enjoy being able to do that. We enjoy being able to get our minds off of things for a bit and just be ourselves. We used to go dancing but we don't do that anymore. I like to dance but I just don't feel THAT energized!!! I can't believe how much I used to like to get out and stay out late when we were younger. I wish I could take a lot of that time back and sleep now! Anyway, Tatiana seems to be improving but her appointment still stands for the 16th, next week. Please pray for her as she gets SOOOOOO nervous!! Well, I need to get off of this computer. I have set myself a certain time limit and I am beyond that! Yes, I am a very disciplined person:)

PS By the way, I did finally see a beautiful white butterfly. I had gone out by the swingset and it was at the top of the slide just sitting there. I have never seen one so white before and I almost didn't see it there but it was opening and closing it wings slowly so I noticed it:) Fly free, Colby:)




Please pray for our friends listed below. Take a chance to visit their site and leave encouraging words in their guestbooks. Thank you:)


Jalen(Earned his Angel Wings June 3, 2003 We will miss you so so much)
Chassidy(Just received BMT. Day 20 and things are finally looking up)
Colby (Earned his Angel wings June 12, 2003)
Connor (Recovering good from his surgery)
Anthony(Earned his Angel Wings June 2, 2003)
Brittany(Battles with this cancer EVERYDAY!)
Hannah and Madeline (Twins fighting Leukemia)
Christina (Katia's 10 year old hospital friend with AML)
Cassie in Europe (Myalgic Encephlopathy, M.E.)
Luke D. (His brain tumor has come back)
Taylor Johnson(Neuroblastoma)

Aizee(Leukemia ALL-Please go by to say hello in their guestbook)


Tuesday, June 10, 2003 3:40 AM CDT

UPDATE: I JUST LEARNED THAT COLBY JAMES EARNED HIS ANGEL WINGS TODAY. PLEASE VISIT THEIR SITE FROM THE LINK BELOW. GOD BLESS COLBY'S PARENTS AND FAMILY DURING THIS TIME.

As you can see I am up and I just wanted to update this sight and tell you guys thank you for your prayers. You know unlike when a candidate running for office makes his empty promises, when people pray for me, I feel it. I really do. So many things lately have just not been going right. I mean there have been some people I have grown close to lose their little children or babies or just not be able to continue fighting as hard as they have been anymore. That is just breaking my heart. Since I found out Jalen had been sent home on Hospice, I just felt like a blur of life going around me. I was just really really feeling low. I have an appointment to FINALLY go to the Cardiologist which I have been putting off. It will be my first appointment with them so they don't know me and about my life. I am going to tell them basically that things have just been going all wrong lately. Maybe my problems stem around stress. I hope so. Myron wanted me to take a break from a lot of the Caringbridge sites. He says I get very emotionally involved. I have learned through all of this that emotions are a good thing to have. I was watching "A Walk To Remember" (bad choice of movies I know) and the whole story is not something so bad but of a girl that has really found peace and happiness. I get more out of watching movies like that then I do out of comedies right now or any of the violent movies. The same thing with visiting these Caringbridge Sites. I feel like I am able to learn and grow from them. I read about so many strong people fighting one of the hardest fights ever and yet they just do it. The other day, I was at the store and this boy, maybe 9 years old - close to Tatiana's age- was just complaining and complaining cause he wanted to go to a movie and since they had to wait for a prescription, he missed his precious movie. I mean this kid was being so mean to his mother like she had just taken his life away! I just wanted to drag him to the hospital and let him witness kids living through hell and not even complaining about it. Well, I have babbled enough. I just want everyone that comes by here to know to please continue to visit the Caringbridge sites I have mentioned and let me know of any I may not know about. These sites are just ALL filled with amazing stories of awesome children and families and I feel better for having known them:)
Thank you.
Love, Tracy

Please remember to go by and visit our other friends and family. Each of them are so special. Some have recently earned their Angel wings but their parents would love to hear from you. Some have either relapsed or are really struggling and others are just sites that I wanted to mention. But ALWAYS pray for our Caringbridge Families and especially for the families that need this type of support and haven't found a place to get support.

Jalen(Earned his Angel Wings June 3, 2003 We will miss you so so much)
Chassidy(Just received BMT. Day 20 and things are finally looking up)
Colby (Earned his Angel Wings June 12, 2003)
Connor (Recovering good from his surgery)
Anthony(Earned his Angel Wings June 2, 2003)
Brittany(Battles with this cancer EVERYDAY!)
Hannah and Madeline (Twins fighting Leukemia)
Christina (Katia's 10 year old hospital friend with AML)
Cassie in Europe (Myalgic Encephlopathy, M.E.)
Luke D. (His brain tumor has come back)
Taylor Johnson(Neuroblastoma)

Aizee(Leukemia ALL-Please go by to say hello in their guestbook)


Monday, June 9, 2003 9:06 AM CDT

I feel better today, not great but better. I am not planning to spend a whole lot of time around this computer, I am gonna rest today. Even when I am not on the computer, I keep my Caringbridge Families and my friends and family in my prayers. Katia is here climbing all over me which is why I am not going to sit here cause if I lay down, she doesn't climb on me but she will come lay down next to me:) She is doing GREAT and since I haven't gotten any calls from her doctors, I assume that all of the tests she had done last Thursday are in the clear!!!! I am so happy about that. We can have a good summer and not have to worry. Love, Tracy


Sunday, June 8, 2003 5:41 PM CDT

I don't mean to worry anybody, I just don't feel too great, a little shortness of breath but I will be okay:) Love, Tracy


Saturday, June 7, 2003 11:07 AM CDT

Well another week has gone by and we are into the weekend. Already it is raining here which is nice. As you can see I have added on a little shop for Katia. I am trying to figure out a way to add to our income and what better way than to raise Cancer Awareness. If anyone has any ideas of other items, please let me know. I LOVE to design things and I am sure I will stay very busy working on projects to add to this selection. I am only going to leave the pictures of the items there for a while and then it will just be a banner to the shop. This has been such a hard week with losing 2 small children that I have grown to love not just the child but the families. The families that fight cancer are very different from other families. People ask how do I go through all of this and all I can say is, "With the grace of God." God does give me extra strength to deal with the hard times and the roller coaster ride of having a child with cancer. I have on all my emails the quote, "If God leads you to it, He'll get you through it." I firmly believe in that. We may not see that to begin with but if we truly search our hearts, we can feel that. We may not agree with what we are going through, hardly ever do we agree with any hard times. All I can say is lately, the playground in Heaven is being blessed with some awesome children and someday when I get to Heaven, I want to personally meet each of them and tell them what wonders they have done in my life and many others I am sure. I look at Katia and see how much of a burden she carries on her shoulders and then I look at the innocence in her eyes and the strength in her heart. She is truly amazing to me. She never complains even when she knows something is going to happen to her that will hurt her. She just somehow seems to know it can't be helped. I pray for Katia everyday that God will heal her and make her a miracle. Thank you for visiting us and keeping up with little Katia. I pray she will somehow reach your heart and change you in a great way. So many people we have met throughout this journey are so super and it is so obvious this world is full of good people. I wish the news would focus more on the good in this world than the bad because as bad as things seem, there is more good people in the world than bad. Love, Tracy


Friday, June 6, 2003 10:00 AM CDT

Well today I feel better. The last few days I was really feeling super down. So many things have been going on and it was just ver overwhelming to me. I have gone night after night with no sleep. I got sleep last night. Katia's appointment went well yesterday and all of her preliminary results look well. I will hear or not hear about the others in the next few days. I figure when I have to call them for the results, all is well so...
Katia had a hard time at the clinic. She is just getting so much bigger and stronger and harder to hold down for these spinals and aspirations. I miss the days when she did have a broviac and could have something to tire her before we tried to do anything. We still had to hold her down but either I was younger and stronger or she is really getting tough!!
We are so happy to have Myron home! I missed him so much. Last week was such a long week in so many ways and he is my soulmate so I really need him around to talk to.
We really need some relaxing time, Myron and I, just to go out and talk over a meal or something but time (and finances) don't always allow that. Katia is tickled pink to have her daddy back.
His film is being developed and we will get it back Monday so I should have some pics to show everyone by Wednesday at least.
I want to thank everyone who has come by here to always check on us. I can't say thank you enough!!! I want as many people as possible to our little Katia and what she endures and that she is winning this battle! There needs to be HOPE in all of this and Katia gives me hope!
Well, I better run. I need to check on my Caringbridge Families now that my head is clearer. I feel I am so behind.
Last night was Jalen's viewing and today is his funeral. My heart is with Jeanette and Dale as they have to say goodbye to that sweet little boy. To me, there is no way to console people. I know that as Christians we will all meet again in heaven and that is comforting but I really want time here on earth as I am sure any parent that has lost their child would agree. You just want to hold them, squeeze them and fill them with kisses and love!
Love, Tracy and Katia

PS Let me add on about Myron and Tatiana's health right now. Tatiana is pain free but is still scheduled to have her tests at ACH on the 16th of June. Myron is scheduled for his doctor's appt. on June 12. His symptoms remain the same so I am really looking forward to his doctor visit and hopefully this doctor will get a colonscopy or something similar scheduled right away. I hope to get all our answers on Myron, Tatiana, and Katia done by the end of June so we can have an enjoyable summer. This stuff keeps me very anxious and stressed out. This is my little family and I hate when one of them is sick. Thank goodness Sharayah always remains in good health!! She had asthma when she was younger but really isn't bothered by that much now. I remember when I just thought that was so horrible but NOW she is so healthy and such a big help to me through all of this other stuff. Tatiana is always the frail one and when she gets sick, she gets REALLY sick. Myron is the one that will procrastinate and put off going to the doctor but now he is eager to find out what the problem/solution is so he can feel better. SO please pray for our whole family that June will bring a lot of answers and no bad news:)


Wednesday, June 4, 2003 2:25 PM CDT

UPDATE: KATIA HAD HER TESTS DONE THIS MORNING AND ALL OF THE PRELIMARIES LOOK GOOD. I SHOULD KNOW THE REST IN A COUPLE TO FEW DAYS. SHE HAD A HARD TIME TODAY WITH THE TESTS. SHE IS GETTING TOO STRONG TO HOLD DOWN AND SHE WAS MOVING A LOT WHICH WAS MAKING IT HARDER TO DO THE ASPIRATION. HER FACE IS ALL BRUISED AND FILLED WITH PETICAE CAUSE OF HER SCREAMING BUT SHE IS DONE NOW FOR THE SUMMER!!! LOVE, TRACY

PLEASE REMEMBER KATIA IN YOUR PRAYERS (AND US) AS SHE GOES FOR HER BONE MARROW ASPIRATE AND SPINAL. PRAY THAT ALL IS CLEAR. OF COURSE WE ARE NERVOUS MAINLY BECAUSE OF EVERYTHING GOING ON IN THE LAST 2 DAYS LOSING ANTHONY AND JALEN, BOTH OF WHICH HAD LEUKEMIA AML, LIKE KATIA. KATIA HAS BEEN DOING WELL (EATING AROUND THE CLOCK) AND HER DADDY COMES IN TONIGHT SO THAT BRINGS US A LOT OF HAPPINESS. I WILL POST PICTURES OF HIS TRIP ON ANOTHER SITE AND PUT A LINK ON HERE TO VIEW THEM. THANK YOU FOR ALL YOUR PRAYERS FOR HIS SAFETY WHILE HE HAS BEEN GONE. DIANE, THANK YOU SO MUCH FOR THE PREPAID CALLING CARDS!!! THEY REALLY CAME IN HANDY AND ARE MUCH APPRECIATED. PLEASE PRAY THAT OUR CARINGBRIDGE FAMILY WILL BE SAFE AND THAT A CURE CAN BE FOUND FOR THESE DEADLY DISEASES. LOVE, TRACY

I have just learned that Little Jalen has earned his Angel Wings at 3:08PM today, June 3, 2003. I can't believe this happened. My heart goes out to his parents and all of his family.
Jalen was such a sweet little baby who fought very hard till the end.
I spoke to Jeanette on the phone and although this happened close to 5 hours ago, they are still really not believing it. I am going to leave the rest up to Jeanette to update her page as she will get to it maybe this evening. As you should know they have many things to do and their hearts are absolutely BROKEN! Little Jalen passed peacefully. God please be with his family and PLEASE help the researchers to find a cure for this horrible disease!!! The picture at the top under Katia is Jalen. He was a very special baby to us.

We will miss you sweet baby boy.
Love, Tracy and Katia

GOD'S GARDEN

God looked around His garden
and found an empty place.
He then looked down upon the earth
And saw your tired face.
He put His arms around you
and lifted you to rest.
Gods' garden must be beautiful,
He always takes the best.
He knew you were suffering,
He knew you were in pain,
He knew that you would never
Get well on earth again.
He saw the road was getting rough
and the hills were hard to climb
So He closed your weary eyelids,
and whispered "Peace Be Thine."
It broke our heart to lose you,
But you didn't go alone.
For part of us went with you,
The day God called you home.
We love you and we miss you.


Tuesday, June 3, 2003 7:01 PM CDT

I have just learned that Little Jalen has earned his Angel Wings at 3:08PM today, June 3, 2003. I can't believe this happened. My heart goes out to his parents and all of his family.
Jalen was such a sweet little baby who fought very hard till the end.
I spoke to Jeanette on the phone and although this happened close to 5 hours ago, they are still really not believing it. I am going to leave the rest up to Jeanette to update her page as she will get to it maybe this evening. As you should know they have many things to do and their hearts are absolutely BROKEN! Little Jalen passed peacefully. God please be with his family and PLEASE help the researchers to find a cure for this horrible disease!!! The picture at the top under Katia is Jalen. He was a very special baby to us.

We will miss you sweet baby boy.
Love, Tracy and Katia

GOD'S GARDEN

God looked around His garden
and found an empty place.
He then looked down upon the earth
And saw your tired face.
He put His arms around you
and lifted you to rest.
Gods' garden must be beautiful,
He always takes the best.
He knew you were suffering,
He knew you were in pain,
He knew that you would never
Get well on earth again.
He saw the road was getting rough
and the hills were hard to climb
So He closed your weary eyelids,
and whispered "Peace Be Thine."
It broke our heart to lose you,
But you didn't go alone.
For part of us went with you,
The day God called you home.
We love you and we miss you.


Monday, June 2, 2003 10:20 AM CDT

Everything has been going pretty smoothly here! We of course miss Myron very much and the days are draggin by for us but not him! He is staying very busy in Roatan! Most of the rest of our family is down there so there are a lot of people to see and a lot of pictures to take. Last night I watched Shrek with Katia for around the 501st time!! BUT amazingly I still find Donkey very funny. We watched Mulan last night too! You can see who is controling our TV viewing right now:) We are trying to keep her happy. Everyone here feels bad when she has to have her BMA done and we are all just praying everything is clear and she won't have to have another for 3 months but the last one was done beginning of April. She knows she is due to have it done next visit. I do try to be honest with her and it seems to work in her case. She just wants a pink bandage when they are done. I always have character bandaids around here but when she goes there, she likes their flouresent bandaids:) Anyway, whatever works! I have taken her to Walmart 3 times since Myron has been gone and put her on the little rides. She loves that. I think, "Wow how easy she is to make happy." Wouldn't it be nice if it were that easy for all of us! Two quarters and be happy for the day. I praise God though because I am able to have a pretty positive attitude MOST of the time. I have to say MOST because my kids read this and they know it is definitely not ALL the time! I hope some of you will be hearing from them on your Caringbridge Guestbooks. They do enjoy reading updates and leaving little messages. I of course start my morning checking on Caringbridge Sites and end my night doing the same. I find that very important to me now to check on people. When we come home from being gone for a while, I tell the kids, "Well I gotta check on my Caringbridge Kids now." They have gotten used to it:) Well, that is about it for now. OH YEAH, yesterday I finally put all my digital photos into albums, well not all but I tried to pick out about 400 out of a good 1000 to sum up the last 18 months and get them printed and into albums. I never thought I would finish but I did. Now I just have to keep it up and print them little by little each week and get them in the album. I love my albums to glance back on and the kids love seeing albums. I have all my albums from when I was a baby and growing up and since Sharayah was born 14 years ago, I have well over 20 BIG albums, probably more than that! I hope when they grow up and get on their own, they will appreciate taking pictures and capturing memories:) Of course, I will give them cameras to use and probably send them film in the mail as a HINT! Anyway, I have babbled enough! I found a new site that you may be interested in.
Cancerkids.org
Have a great day:)
Love, Tracy


Remember please go by to check on little JALEN!
Jalen's Site

***********************************************************************************************************************************

JUNE 2, 2003 1:15PM
I am so saddened to have just learned that Anthony Makoid has just lost his battle with Leukemia AML! This was such a shock and I am sure he will be so very missed. Anthony was an AWESOME little fighter. Please go by his page and leave his family a message. I am sure their hearts are just feeling so empty right now.
Anthony Makoid's Site


Saturday, May 31, 2003 7:54 PM CDT

Well today was a good day:) Katia is doing well. I added a couple of new pics. We are watching the ALL CHILDREN'S HOPSITAL TELETHON RIGHT NOW and enjoying being on this side! Last year we were in isolation during this time and saw people moving around and filming but couldn't get out to participate. Our friend, Rob Hasse had just had a transplant. He had Leukemia AML like Katia. His parents were interviewed and Rob was interviewed (just days after him BMT- which was made possible by his sister). In January Rob passed away after a long fight with Leukemia and we miss his smiling face dearly! Rob was 19 years old and such a sweetheart! His Mom, Jane, was always so helpful when I had questions about Katia. I just wanted to update about this. We had a good day and I spoke with Myron. He went to the beach today and is taking lots of pictures with our family there in Roatan, Honduras so OF COURSE I will post the pictures when he returns (this Wednesday). Katia has a bone marrow aspirate the day after Myron gets back and I am very tense about that but trying to remain positive. She has been doing A LOT better these last 2 days:)
God Bless everyone. Love, Tracy

Remember to please go by and visit Jalen. He is home on hospice and hopefully things are smoothing out and they can enjoy their time home. Jalen loves to see the duckies and be able to play. He is sleeping a lot right now but when he is awake he is happy and dancing:) We love you little Jalen!
Jalen's Site


Friday, May 30, 2003 2:40 PM CDT

Well today is going much much better than yesterday! First Katia slept in for a good while and she woke up looking and feeling so much better. Her bug bites are healing up and they aren't itching her, swollen or causing her any pain. I was going to take her in today but since it just looks 100etter, I decided to go get the kids water guns and let them have a fun-filled day outside and man are they having fun. Little Katia is running around shooting water everywhere and getting soaked! She has 2 guns so she should be good to go and be able to soak Sharayah and Tatiana. I am watching them as I type and they are soaked already out there. I plan to take a lot of pictures of the three of them over the summer. They are ALL such good girls:) I love them and am so very proud of them. Hopefully some of you will be seeing messages in your guestbooks from Sharayah and Tatiana:)
Thank you for checking up on us and make sure you stop and look at the new photos!
Love, Tracy
Remember to please go by and visit Jalen. He is home on hospice and hopefully things are smoothing out and they can enjoy their time home. Jalen loves to see the duckies and be able to play. He is sleeping a lot right now but when he is awake he is happy and dancing:) We love you little Jalen!
Jalen's Site


Thursday, May 29, 2003 5:43 PM CDT

Okay well today has its ups and downs. Katia saw a friend Christina today and that was really great but Katia didn't feel good and she hasn't felt good most of today so please keep her in your prayers. Her little bug bites are getting worse even with medicine, her knee is hurting and she is just worn out. Her next Bone Marrow Aspiration is June 5th so please pray all is clear. God is good and I know he will take care of little Katia:)

Please continue to pray for Jalen. His Mom is really having a difficult time keeping up with his medicines and machines giving problems, etc. Jeanette is such a good Mommy to Jalen and I told her whatever she can do for him is the BEST! She is such a good Mom and so devoted to his treatment and and praying for a miracle! Jalen has made a difference in my life by getting me to pray more often:) With everything he goes through and how bad he feels, she says he still dances and plays when he is awake. Please go by to visit them and sign their guestbook.
Jalen's Site


Wednesday, May 28, 2003 4:26 PM CDT

"...No more Leukemia, my hair is here. Dr. Bosa take away the Luekemia. God is smiling and I go fasty on my swing!"

That is what Katia said when she woke up this morning! In her 3 year old little mind, she said all of that. She is always making little comments about her broviac being gone and no more Leukemia but this morning she just woke up bright-eyed and bushy-tailed and said that! Isn't that just precious!?

Katia really teaches me a lot! Everyday, I learn from her. She hasn't been feeling too great this afternoon. Her knee is bothering her and she is just pretty whiney so she went and laid down. I went in the room to make sure she was on a pillow and covered up and she told me she loved me and just fell asleep. It was like she wanted me to come in there so she could give me that reassurance.

I really try to remain positive through all of this and not worry so much but I can't help but to notice any little thing with Katia that doesn't seem right. I even notice other kids when I am at the store. The other day, I saw a little girl in Dennys with a swollen eye. I just jumped to the thought about Katia's tumor behind her eye and how long it took us to get her diagnosed with that and then the Leukemia. I just want to run up and tell parents to make sure they have blood tests run on their children regularly. Katia had NEVER had a blood test and she was 2 1/2 then. I didn't even know her blood type till after she was diagnosed.

The picture at the top of the page is me and my three beautiful daughters. I am so proud of all of them. They are very smart and kind girls and I pray life brings each of them abundant happiness! I also pray they will stay close as they get older and have their own individual lives. Katia loves her sisters and they adore her! That is why she is so spoiled:) (I think that is a lot more my fault - or that is what they all say).

Please continue to pray for Jalen. His Mom is really having a difficult time keeping up with his medicines and machines giving problems, etc. Jeanette is such a good Mommy to Jalen and I told her whatever she can do for him is the BEST! She is such a good Mom and so devoted to his treatment and and praying for a miracle! Jalen has made a difference in my life by getting me to pray more often:) With everything he goes through and how bad he feels, she says he still dances and plays when he is awake. Please go by to visit them and sign their guestbook.
Jalen's Site

I printed up Katia's guestbook last night! Guess how many pages? 177 pages of guestbook entries!!!! I read each and every one of them and they are so encouraging on days that I really need some encouragement! I mean, those entries are better than any medicine I could take to comfort me or relax me. Words are powerful tools. I appreciate each of you so much for coming by and checking on Katia and our little family. I appreciate you listening to me vent and ask questions!

Myron says I talk a lot and I guess I also type a lot but I really do admire people that continuously come back so regularly to check and sign in letting us know you were here. THANK YOU!!!!!

I printed all of that up and put it in a big big manilla envelope for Katia to read. That is a lot of reading material for her someday:) Of course I will continue printing it up and adding it too that envelope so keep on coming back and giving me your words of encouragement and letting Katia know she is in your heart and prayers:)

Love, Tracy (Katia's Mommy)


Tuesday, May 27, 2003 10:48 PM CDT

HIYA! Katia is doing very well right now (actually she is sleeping soundly - snoring) but she had a very nice day. She does miss her daddy though:(
She of course played outside today but she had a little friend, Natalie over. She lives down the street from us.
I have been thinking a lot today about all she has been through this year and how much we have all learned.
I think often of the saying, "Everything happens for a reason" and although I believe that to be true, what is the reason? I mean we have learned a lot and we have a very strong determination to help find a cure now but WILL we find a cure?
I so much want to make a difference. Katia is too young right now to know about everything she is going through but I pray someday she will be able to look back on all of this and definitely grow from this experience.
I wish there would be no more diagnosed patients but I know today there were new patients diagnosed. They are just now beginning their struggle of understanding and treatments. That is very sad to me because I remember just how horrible we felt when we were told Katia had cancer.
Those words are hard to say, "Katia has cancer" but that is our life now.
I wonder what "normal" is now. I mean, what would I be doing if this hadn't happened?
I know I have a lot of questions that I won't have answers for until I get to Heaven but I do trust God has a plan. God knows all.
Lord, please be with all of us.

Love, Tracy


Monday, May 26, 2003 3:18 PM CDT

I just wanted to update to let everyone checking know that Myron got off to Roatan okay and as I type, he is flying. I am praying the trip goes well. He doesn't feel well but as soon as he gets back, to the doctor he goes. Katia was quite upset, more than we thought she would be, when we were on the way to the airport. She is not in too good of a mood right now and has been very irritable and sleepy. She is sleeping right now. I am going to try to keep her happy while he is gone and maybe go to a park or something. If anybody has ties to a Chuckie Cheese person let me know! She loves that place. Actually she loves anyplace with food! She is the only 3 year old I know that ask for Chili's Restaurant! That is good for us because with the first 2 kids, we grew tired of McDonalds (no offense Ronald!). Anyway, I am just looking forward to Myron getting back and all of these doctor visits getting behind us. My dad flies out of here tomorrow on his way back to Honduras. He has been here for about a month and will be back around Thanksgiving through end of January. Please keep our family in your prayers. Of course we have the ongoing things with Katia, Myron and Tatiana but one of my Uncles (Dale) is in the hospital and they aren't sure what is going on with him. I have an Aunt (Shirley) who has Lou Gerrig's disease. She was diagnosed about 1 1/2 years ago and now she is in the hospital with pneumonia. I think she in the final stages of this. I visited with her last week and she just really looks like this disease has taken over her little body. Out of all of my Aunts, she was always the most active and talkative and I have nothing but fond and happy memories of her! She has always been a beautiful woman, full of life. A few years back, her youngest son died in a car accident and I know how bad that was for her. Soon after her 50th anniversary, she was diagnosed with this Lou Gerrig's disease. She came to see Katia while she was in the hospital and that meant so much to me because I know it wasn't easy for her.

Also please continue to visit Jalen's site and keep up with his progress at home. He is home on Hospice and we are all praying that a miracle will come his way. There is nothing more the doctors can do to treat his Leukemia. He has Leukemia AML like Katia. He is so precious!! Katia loves to pray for Jalen. Jalen likes ducks like she does and to a 3 year old, that is enough!

I pray everyday that a cure can be found for all of these horrible diseases! I also pray that until that cure is found that God presents and blesses us with courage, strength and endurance that we need as we fight these battles. I pray for grace that I need to keep a positive attitude. I pray for the people that will be diagnosed today and tomorrow and so forth that they will find hope in a cure. I also pray that people will turn to God and find strength and love in Him. No matter how out of control things seem to get, God is always in control. I know we may not like the way things or going or understand why but I know that it is all in God's plan. To a parent that has just had to bury a child this sounds impossible to believe but I also know that none of us are promised tomorrow. I have a strong faith in God that when I die and go to Heaven, I will be with my family. Family that I don't even know and friends whom I have never met but as Christians, we have that hope and promise for that day. Don't get me wrong! I plan to be on this earth well over 100 years and I plan to have my children around so I can tell them how to raise their children and how to clean their house:) but I do know that our end on this earth is our beginning in Heaven.

God bless all of us and our soldiers both fighting now and protecting our country and those who have passed. May God protect our country as we continue to fight for FREEDOM!

Love, Tracy


Thursday, May 22, 2003 1:31 PM CDT

SEE MY PHOTO PAGE (TOP PHOTO ADDED MAY 23RD)
I just wanted to update the front picture mainly but then I thought, well I might as well update the journal too. I have had a bit of a chance to sit down and check up on some other Carringbridge sites and sign a few guestbooks. That is always nice when I get the time to just sit down and catch up. My dad will be here for another 5 days and the kids will be home for the summer in about 7 days I think. I plan to really enjoy our summer! Katia is playing outside right now and she really loves to talk to herself. She is also so observant! She notices butterflies and dragonflies and yes, even ladybugs! I really think it is so neat when a ladybug lands on her because it is like they know she just loves ladybugs so very much!!!! Katia is growing into a beautiful little girl. Now that she can talk a little more I am always asking her questions. You know how kids are always asking, "Why...?" Well I do that to her. My biggest question is, "Why do you like to suck your thumb so much?" Her reply is, "My thumb is happy!" Okay? Maybe she doesn't carry on the greatest sense but she is talking! Tatiana's appointment is set for June 16th! Finally a date! She will have the procedure done and then return to the doctor to go over the results on June 18th. I appreciate everyone's prayers for my concerns. I can't explain in words how comforting it is to check this guestbook and see so much good advice, words of comfort, etc. That really means the world. Please continue to pray for our friends and all the Carringbridge families. Always pray for yourself and your own family even if things seem fine. Give thanks that things are well. Well, Katia is wanting some water so I better move on to the kitchen. She is very dramatic right now. Love, Tracy
PS Please pray for Baby Brandon's family. I just read he passed away yesterday. I am sure his family could use our support. This is so sad.


Tuesday, May 20, 2003 8:55 AM CDT

IF YOU ARE A LITTLE LOST ABOUT WHAT HAS BEEN GOING ON LATELY IN OUR FAMILY, CHECK THE JOURNAL HISTORY AND THEN THIS WILL MAKE MORE SENSE:)
Thank you so much for all your love and concern! I was overwhelmed by all the responses and SO appreicative. Last night we went to an award ceremony for Sharayah's school. She received the President's Academic Award which means she has a GPA above 3.5 and scored high on all her achievement tests. We are very proud of her and while I sat there I put a lot of things into perspective. I have no choice right now but to trust God and continue what I have been doing. I have always kept a positive attitude and decided to reach out to others. Myron has recently finished 2 more songs. They still have to be produced and recorded but the words in one just rings so true. "Love comes back when given to someone else..." I really try to live by that because I know how true that is. When I feel gloomy, so many people come by and sign my guestbook and email me with encouragement that I just feel like a huge weight has been taken off my shoulders! I have learned so many things from so many websites I visit and people I speak to since Katia has been sick. Katia has touched so many lives and she is only 3 years old! It amazes me when I see what she goes through and the smile she wears on her little face! She just really brightens a room. When Sharayah received her award last night, Myron yelled from the back of the auditorium, "SHARAYAH, SHARAYAH!" I just know he is so proud of all 3 of his girls and that warms my heart. I have such a wonderful husband that loves and appreciates me and all that I feel and do and he adores his little girls. I am so blessed. Sometimes I feel I am TOO blessed and that causes me to worry but I know that is just the devil trying to bring me down! Someone mailed me a beautiful Certificate of Excellence for this site and that just made me smile and feel so good. I hope each person knows how important it is to let others know you care EVERY DAY. Don't do it out of fear that the person may not be there tomorrow but do it out of pure admiration. God made each of us for a reason, very different reasons. I know God made me to take care of my little family and to reach out to others. I find such joy in those things. I am not left feeling empty and lost at then end of the day. I feel appreciated and that is so important. Some people ask if I get bored being a stay-at-home Mom. I ask myself, "Are they crazy!" I can't imagine being anywhere else. I admire woman who are career minded. I admire their strength and knowledge (and their ability to be up and going and THINKING so early in the morning). But I know where my place is. I know when my life is done, I would have made some difference and I pray I can reach out to many more people in my days and that all my children will be able to live long, happy and healthy lives and leave a piece of their heart everywhere they go by touching lives. I know it gets very difficult to check on our little families on here because things do go bad, more than we like. BUT I feel the NEED to keep on checking in and giving my support. Little Jalen and his Mommy have really found a place inside my heart and it gets very difficult when I see them facing so many difficult days. I just want little Jalen to be running around making his Mommy chase him telling him to keep his fingers off the glass in their house. Katia leaves her prints everywhere and we all just clean up after her but we do it with a smile on our face because we appreciate those little fingers being able to leave prints everywhere!!!! I just pray they can get higher and higher on the glass doors! Please continue to check on our families even though we have our bad days and our VERY bad days. It matters. It matters so much to see you care. Please go by Jalen's site. He goes home on Hospice today and they really need a miracle! Please pray Chassidyfor as she prepares for her BONE MARROW TRANSPLANT she has waited so long for! Please pray Connorfor as he faces surgery that will be very difficult. The doctors will be making a lot of decisions during that surgery and I pray that God will lead those doctors' hands and minds. Always keep dear Colby in mind as his family continues their journey which has really put them through major roller coaster rides! And always, please pray for Katia:)


Saturday, May 17, 2003 4:17 PM CDT

UPDATE: MAY 19, 2003 I WASN'T GOING TO UPDATE THIS BECAUSE I WANT EMPHASIS ON JALEN RIGHT NOW BUT I AM JUST SO WORRIED, I MUST! I HAVE SO MANY THINGS GOING ON RIGHT NOW AS FAR AS HEALTH IN OUR FAMILY. I AM VERY WORRIED FOR TATIANA RIGHT NOW AS ALL OF YOU KNOW! I AM ALSO SO VERY WORRIED ABOUT MY DEAR KATIA BECAUSE I USE HER THUMB (WHICH SHE SUCKS) AS HER "HEALTH GAUGE". IT HASN'T BEEN A PROBLEM SINCE HER COUNTS HAVE RECOVERED AFTER CHEMO. SHE SUCKED IT AND IT ALWAYS LOOKED GOOD. BEFORE SHE WAS DIAGNOSED, IT LOOKED SO BAD AND DURING CHEMO SAME THING. IT SEEMED HER WBC WEREN'T GOOD ENOUGH TO RECOVER IT BUT IT HAS SINCE BEEN FINE. NOW, IT IS ALL TORN UP AGAIN SO I AM JUST A MESS. THAT IS NOT ALL. I HAVEN'T REALLY MENTIONED MUCH ABOUT MYRON. HE IS GOING THROUGH SO MUCH RIGHT NOW AND WE ARE SO WORRIED. HE IS BLEEDING HORRIBLY WITH BOWEL MOVEMENTS. THE WHOLE IDEA IS SCARING ME. HIS BOWELS COME OUT ONLY WITH LAXATIVES AND EVEN THEN THEY ARE VERY SKINNY AND NOT NORMAL. HE HAS EXTREME ABDOMINAL PAIN! HE IS SCHEDULED TO SEE A GASTRO DOCTOR JUNE 12TH AND THEN TO HAVE A COLONOSCOPY. HE HAD ONE ABOUT 4 YEARS AGO AND ALL LOOKED GOOD BUT RIGHT NOW HE HAS EVERY SYMPTOM OF COLON CANCER. HE IS SICK ALL THE TIME, APPETITE LOW, NAUSEATED, BLOODY STOOLS, ETC. I AM SO WORRIED THAT SOMETHING COULD HAPPEN TO MYRON, KATIA OR TATIANA! THIS IS JUST REALLY GETTING TO ME RIGHT NOW AND I NEED YOUR PRAYERS THAT MY LITTLE FAMILY STAY HEALTHY. NOBODY REALLY SEEMS TO UNDERSTAND MUCH AS FAR AS MY WORRIES BUT I SEE ALL OF THESE SYMPTOMS WITH EACH OF THESE THREE AND I WORRY SO MUCH. I KNOW I NEED TO TRUST GOD. I KNOW THIS. BUT I NEED YOUR PRAYERS AND SUPPORT RIGHT NOW. MYRON IS GOING TO ROATAN FROM MAY 26TH TO JUNE 4TH. HE WILL THEN BE BACK AND I HOPE A LOT OF HIS WORRIES WILL EASE AND THIS DOCTOR APPT CAN ANSWER A LOT OF QUESTIONS AND GET DONE WHAT NEEDS TO BE DONE. THIS FAMILY REALLY NEEDS SOME BREAK HERE! WE ARE SO CLOSE AND REALLY COULDN'T DEAL WITH A LOSS. PLEASE PLEASE PRAY FOR EVERYONE. MY HEART IS SO TORN RIGHT NOW AND THERE IS SO MUCH TO DEAL WITH. I HAVE BACKED OFF CHECKING A LOT OF CARRINGBRIDGE SITES BECAUSE EMOTIONALLY I JUST CAN'T RIGHT NOW. I NEED TO FOCUS ON MY FAMILY. WE HAVE SO MANY THINGS WE NEED TO TAKE CARE OF. EVERYDAY THINGS LIKE BILLS, DINNER, SCHOOL, FAMILY, ETC. RIGHT NOW THESE FEW THINGS ARE OVERWHELMING FOR ME. MYRON TRAVELING IS A CONCERN BUT A MUST RIGHT NOW. I JUST WANT TO KNOW MY LITTLE FAMILY IS GOING TO BE OKAY. I AM SO SORRY TO BABBLE ON BUT I AM JUST SO SO STRESSED RIGHT NOW! LOVE, TRACY
First, I am so saddened today to read Jalen's update. He is going home on Hospice this Tuesday. There is no further treatment the doctors can do for him. Jalen is the little 17 month old baby I speak of very often and I ask you to please go by Jalen's site and offer some words of encouragement and strength for his Mom, Jeanette. She is an awesome Mom and her heart is just wrapped around Jalen and has been through so much taking care of him and having very very long hospital stays. Like, most of us know, cancer is not fair!!! I know sometimes we don't know the right thing to say to somebody so we avoid saying anything but there really isn't a right thing! Cancer isn't right, there are no right words, thoughts or feelings. Nothing can really be said to ease a parent's hurt when a child they brought into this world, have watched this child fight this horrible and painful disease and then to know there is nothing else that can be done. We can all pray for a miracle and just offer Jeanette the words that we are here and checking on her and Jalen. I have just been heart broken by this and been going around like a mummy today. When I read Jalen's update, my jaw dropped and LOCKED! I have severe TMJ of my jaw and usually I just don't let myself be caught in doing something that could lock my jaw but the update just totally caught me off guard. I am so upset by this!! I really just want to close out this update with this. Please pray for yourselves, your children, (healthy or not healthy), all the parents and children of this world that somehow, some way a cure can be found to end this horrible cancer. I hate this disease. Katia is so healthy right now and I can't REALLY enjoy it because I just know any day all that may change and if it does we will have less hope than we did before because it would be a relapse. None of us match her bone marrow so it would be in the mercy of the registries. Please take the time to sign up for this registry for everyone's sake TODAY. Please take the time to send any small amount of money or large, to the societies that have so much been trying to find a cure and help families during these times. We have found much help in the

National Children's Cancer Society

and the

Leukemia and Lymphoma Society

Please take the time to visit these sites, learn more about them and make a donation. You can make it in HONOR OF KATIA SOLOMON and show your support in her fight or make it ANONYMOUS. It all goes towards good causes!
THANK YOU SO MUCH FOR CONTINUING TO CHECK ON LITTLE KATIA. IF YOU RECEIVE THE NEWSLETTER "VOICE OF HOPE" FROM THE NATIONAL CHILDREN'S CANCER SOCIETY, KATIA HAS AN ARTICLE IN THERE. IF YOU WOULD LIKE TO RECEIVE THIS NEWSLETTER VIA EMAIL, HERE IS THE LINK. VOICE OF HOPE NEWSLETTER REQUEST

Love, Tracy Solomon


Thursday, May 15, 2003 1:43 PM CDT

Well we went to the doctor today. Her counts look all good. Katia seems to be coming down with a bad cold and cough. I hope not. I hope it is something that just passes. Instead of July, they want to do the Bone Marrow Biopsy in June. So next visit she will be in for the BIG ONE! She does good at that though. She has the Bone Marrow Biopsy and the Lumbar Puncture on the same day. So please pray for Miss Katia on her next visit that all is well with those tests. She is enjoying her swingset. She got to play a little yesterday when we finished around 8PM and then for a short bit after dinner. Of course before we went to her doctor today, I took her out there for a short bit. She wants to go now that we are home but I want her to wait till it isn't so hot out there. Sharayah (our 14 year old daughter) has her first school dance this Friday night so we are trying to find her "the dress and shoes". I bought a dress but if she doesn't like it then I am leaving it up to Myron to go back out. My head is killing me today due to this cold I have. I NEVER get colds but this just hit me quickly without warning. I worked outside on the swingset all day yesterday feeling pretty bad but today it is worse. Myron is planning to make a trip home pretty soon to Roatan, Honduras. He hasn't been there for about 4 years but with everything going on with his Tia and his Mom, he feels he needs to make a trip home. Financially, this isn't good but it needs to be done and in this case no time is better than the present. The name of the test Tatiana is supposed to be getting done is V.C.U.G. (Voiding Cystourethrogram). I finally got the name straight. I got a call today that sounded like they said June 18th but then the message was cut off so I just called and am waiting to here back. Well, my head is not happy right now and my nose is a mess! so I am going to go lay down for at least 15 - 20 minutes. Hope all is well with you and yours! Love, Tracy


Wednesday, May 14, 2003 7:43 PM CDT

YEAH! WE GOT THE SWINGSET UP!!! LITERALLY IT TOOK FOUR ADULTS OVER 10 HOURS TO GET IT DONE BUT WE GOT IT AND MAN WAS SHE HAPPY! I AM SO HAPPY FOR HER. WE HAVE TO GO TO CLINIC IN THE MORNING AND SHE PLAYED FOR ABOUT 20 MINUTES WHEN IT WAS DONE BUT WE HAD TO COME EAT DINNER, NOW SHE IS BACK OUT THERE WITH TATIANA AND IT IS DARK BUT THE LIGHTS ARE ON SO SHE IS OKAY! I AM SO HAPPY SHE IS HAPPY! WE HAD MY DAD HELPING, ME AND MYRON, AND MYRON'S BROTHER JORGE WHO IS VISITING. I THINK IT WAS A BIGGER JOB THAN ALL OF US THOUGHT IT WOULD BE BUT VERY WELL WORTH IT. I AM SURE THERE WILL BE MANY HOURS OF FUN OUT THERE.
PLEASE PRAY THAT OUR APPOINTMENT GOES WELL TOMORROW. TODAY WAS SUCH A GOOD DAY AND I JUST WANT ALL THESE GOOD TIMES TO CONTINUE FOREVER. I WILL UPDATE TOMORROW EVENING AND PROBABLY HAVE ALL NEW PICTURES. YOU WILL GET SICK OF ME UPDATING THE PICTURES BUT I LOVE BEING OUTSIDE EVEN MORE NOW! WELL AMERICAN IDOL IS ON AND I HAVE TO GO CHEER ON RUBEN!!! LOVE, TRACY


Tuesday, May 13, 2003 8:18 AM CDT

WELL I WANT TO UPDATE WHILE I HAVE SPARE TIME! I MISS CHECKING THIS WEBSITE BUT SOON MY SCHEDULE WILL SLOW DOWN WHEN MY DAD LEAVES. KATIA IS DOING VERY WELL. SHE IS PRETTY BRUISED UP BUT SHE HAS AN APPOINTMENT ON THURSDAY (15 DAYS LATER THAN SHE IS SUPPOSED TO) SO WE WILL CHECK OUT HER COUNTS. SHE HAS HAD A BIT OF A COLD OR ALLERGIES TOO. AROUND HERE, THINGS HAVE JUST BEEN SO SO BUSY! I NEED TO POST SOME NEW PICTURES HERE AND I PROMISE I WILL IN THE NEXT FEW DAYS. TATIANA IS ABOUT THE SAME. MYRON IS WANTING TO MAKE A TRIP HOME TO ROATAN (OFF THE COAST OF HONDURAS) BECAUSE HIS TIA (AUNT) IS VERY SICK AND THEY WERE VERY CLOSE. SHE IS NOT EXPECTED TO LIVE TOO MUCH LONGER AND MYRON WANTS TO SIT DOWN WITH HER AND JUST TALK. SHE IS THE ONE WHO TAUGHT HIM TO READ AND WRITE ENGLISH. SHE ALSO REALLY LOVED ME RIGHT OFF WHEN I FIRST MET HER. SHE IS A VERY DEAR WOMAN, VERY WISE AND ENERGETIC. HER NAME IS TIA DENA. I THINK SHE WOULD TURN 90 IN JUNE IF I AM CORRECT. MY DAD IS DUE TO LEAVE HERE ON THE 25TH OF MAY AND WILL COME BACK NOVEMBER 23RD. I AM LOOKING FORWARD TO THE KIDS BEING OUT OF SCHOOL FOR THE SUMMER. SUMMER BREAK STARTS MAY 30TH. THAT WILL BE NICE! KATIA WILL CERTAINLY BE HAPPY AND WITH THE NEW HOUSE, THEY WON'T BE SO BLOCKED UP INSIDE LIKE AT THE APARTMENT SO THIS WILL BE A NICE SUMMER. WELL SPARE TIME IS DONE, I HAVE AN APPOINTMENT TO GO TO WITH MY DAD. HELLO TO ALL MY FRIENDS OUT THERE! IF I HAVEN'T BEEN SIGNING GUESTBOOKS AS MUCH, I WILL BE BACK AND SIGNING REGULARLY AGAIN BUT I WISH EVERYONE WELL! LOVE, TRACY AND KATIA:)

Short note: Deidre, I need your email address so I can respond to you about something. Yes, the kids got their package and thank you so much!!! That will keep them busy and happy!

TOMORROW KATIA'S SWINGSET GETS HOOKED UP!!! IT IS IN OUR GARAGE AND SHE HAS NO CLUE! SHE EVEN SAT ON THE BOX BUT DIDN'T KNOW WHAT IT WAS. SHE HAS BEEN SO HYPER LATELY THAT I CAN'T WAIT FOR HER TO SEE THIS. I WILL DEFINITELY POST PICTURES IN THE NEXT FEW DAYS!!! JUST PLEASE PRAY FOR NO RAIN HERE TOMORROW SO WE CAN GET IT HOOKED UP! I AM SO HAPPY FOR HER AND TATIANA, THEY WILL LOVE IT. SHARAYAH TOO. SHE IS 14 BUT SHE STILL REALLY LIKES THAT STUFF AND SHE LIKES TO PUSH KATIA AND HERE HER SCREAM AND LAUGH! I CAN'T WAIT! I CAN'T WAIT!!


Thursday, May 8, 2003 2:10 PM CDT

Just a quick update while I have the chance.
First, I love hearing about peoples' answered prayers. It has been very nice! Also, for all of you Mothers out there
HAPPY MOTHERS DAY!!!
This year, I am happy to be spending Mother's Day at home and I am very grateful. Last Mother's Day, my Mother-In-Law and I ate in the hospital cafeteria while Katia was having her 2nd chemo round. The food was really bad and cost well over $15.00.
This year I told my girls, I want breakfast in bed (Sharayah is 14 and can cook now!) and a peaceful day. Myron will be working in the morning.
The trip with my dad is going well. He leaves on May 26th and then the kids will be home for summer on the 29th.
Katia has her monthly checkup next week. We are running late because I was trying to schedule her and Tatiana on the same day to go over to St. Pete.
Tatiana has been feeling well. The medicine keeps the pain away. I want to take her off and see if the pain comes back but I am not going to. She will have a test done that is looking inside the bladder as it is full and as it empties. I think it is a LCVU test. I forget the name of it.
I am looking forward to summertime with the kids around here. I am hoping to have Katia's swing up end of this week. We had 2 donations help towards the cost of this swing and we are putting in the rest. Thank you. Katia will hopefully not get hint of this until it is complete and I want to video tape her reaction. She REALLY wants this!!!!!
Well, that is all for now. Please keep checking on my little friends that have the links above. I check on them daily and for each of them, prayers are helping. Tyler's parents updated his page and although Tyler will be so missed (I can understand why) I really think prayer is helping them through this time. Our friend Chassidy is in remission finally and Jalen is improving each day little by little. Taylor is out of pain at the moment! Baby Brandon they are trying a new procedure on and Colby is remaining in remission:) Brittany is just the little girl that keeps me in awe at the strength, grace and courage she continues to show. Love, Tracy and Katia


Sunday, May 4, 2003 3:09 AM CDT

NEW PHOTOS ADDED!
We were working in the backyard and Myron decided to tag Katia with the hose! She was having a ball helping daddy dig up dirt and then getting soaked just made her day! I just wanted to update a short bit and then maybe I can update more later.
Things here have been very busy but it was so nice seeing my family (Aunts, Uncles, and Cousins) that I just don't see much.
My dad and I stay quite busy but I did check up on some of my Caringbridge family this morning (4 AM) and am glad to see so many doing better:)
Please keep praying for my dear friends and visiting their websites (listed above this journal). Througout all of this I have learned how important and powerful prayer is.
So, I have a question!!
What are some prayers you have had answered lately that you don't mind sharing with others.
Of course one of mine is dear Katia doing so well!!! An old one of mine that I prayed A LOT! I always prayed God would send me the right husband and he really listened and sent me the perfect husband for me (I am not easy to deal with all the time). I used to really pray for that and after 15 years of marriage I am still grateful for Myron:)
My most recent answered prayer would have to be little Jalen. He is doing so much better now! Katia prays for Jalen now without being reminded. She says she likes praying for Jalen:) I think that is so sweet. Please check on little Jalen. We have also been praying that our friend Chassidy would go back into remission and she has!!! Hopefully she will go into transplant in a couple of weeks.
Please remember if you are interested in the Leukemia and Lymphoma Society's Mother Day "Tea Party" email me your address so I can send you your teabag and invitation! It is a teaparty you can do alone or with others at 3:00PM on Mother's Day. Send me the address of any friends or family interested also and I will get it right in the mail to you:) Love, Tracy


Thursday, May 1, 2003 3:36 PM CDT

Very quick update but I want to update. My grandmother's viewing was last night and it went very well. We saw a lot of family we haven't seen and everyone agrees she is in a better place and with my grandfather. Because of that, we aren't too sad. We have been talking a lot about old stories when my dad and his sister and brothers were kids and that is nice to sit around and talk about. Nobody has seen Katia because she was not doing too well yesterday and I didn't take her to the funeral today. She has just been feeling a little under the weather and felt warm (no real fever though!) We have a get together tonight so I plan to take Sharayah, Tatiana and Katia. Katia is napping right now so...
Tatiana had her appointment yesterday and although she drinks water like a fish, they said her urine had "low weight" so that means she is staying dehydrated, drink more water? The doctor also wants to do some type of a scan on her bladder. I forget the name. It is four initials that I think starts with L? That will be at All Children's Hospital probably late next week.
Thank you so much for all the kind entries in the guestbook and for checking up on us.
It has been so nice to see my family. We stay in better touch via email now but it is not the same as seeing everyone in person:) That would make my grandma happy that we are all together.
Love, Tracy


Tuesday, April 29, 2003 2:28 PM CDT

HIYA and good day! Well Tatiana's pediatrician called and Tatiana's blood tests, kidney functions, etc. look good but her cholestrol has gone from 234 in January to 247!! She has really been watching what she eats and she has been taking the metamucel twice a day instead of the once, taking the garlic and nothing is going down? I don't understand this but the pediatrician actually didn't seem to stressed out over it so I am going to put that in the back of my mind for now. Anyway, my dad is due in today. I haven't heard from him yet but we have been preparing around here most of the day and Katia has been all over me all day wanting attention so I am looking forward to this evening when I can really sit down and relax some. While my dad is here we do a lot of errands and appointments (Tatiana has one at 8AM tomorrow also) but I am going to really try to take the time to spend some quality time with my dad and taking Katia out in the day to play places and Sharayah and Tatiana out a couple of times with my dad. I want this stay to be a little less stressful and have some fun. Well our little buddy Jalen is doing a little better and that makes me VERY happy so go by his site and say hello. His site is in the links above this journal. Also, the Leukemia and Lymphoma Society is having a fund raiser dealing with Mother's Day so if you know anybody I could mail a little fundraiser letter (the fundraiser is in the form of a "TeaParty" you do at your house alone or with friends on Mother's Day at 3PM) please email me their mailing address so I can send them an invitation. Also if you are wanting to make a donation towards this awesome society, please email me and I will send you the information. Remember, every little bit helps and we all know it really goes a long way! I will put more info on here when I know more but Mother's Day is around the corner. Love, Tracy


Sunday, April 27, 2003 2:59 PM CDT

UPDATE APRIL 28, 2003 4:18PM TATIANA HAD HER APPOINTMENT TODAY WHICH WENT FINE UNTIL TIME TO DRAW BLOOD AT THE LAB!!!!! SHE JUST FREAKED OUT AND WAS VERY HARD TO HOLD STILL. SHE WOKE UP YESTERDAY MORNING WITH A PRETTY BAD NOSEBLEED BUT IT ONLY LASTED ABOUT 15 MINUTES. THEN DURING THE DRAWING OF THE LABS SHE HAD ANOTHER ONE WHICH GOT ALL OVER ME SINCE SHE WAS SITTING ON MY LAP. I WILL SAY TATIANA IS VERY VERY STRONG!! THEY DID A COMPLETE CBC PANEL AND HER CHOLESTROL AND ALSO I GUESS SOMETHING TO CHECK HER LIVER AND KIDNEY FUNCTIONS. WE SHOULD MAYBE HEAR SOMETHING TOMORROW. I DON'T KNOW WHAT IS CAUSING THESE NOSEBLEEDS. THAT IS NEW BUT REALLY I AM GOING TO TRY NOT TO WORRY. SHE HAS AN APPOINTMENT WITH HER UROLOGIST AND IF IT HAPPENS AGAIN, I WILL BRING IT UP TO HIM OR CALL HER PEDIATRICIAN. ANY IDEAS? THIS IS LIKE AN ONGOING DAY THAT NEVER ENDS. LOVE, TRACY
The picture at the top is Katia with my grandmother at her 90th birthday. That was a very nice day because all 4 of her children were there together. She was very happy and that really meant the world to her:)

Tatiana has an appointment with her pediatrician in the morning for blood test (pray for her because remember she really hates this!) and then on Wednesday with the urologist. Today she is feeling good though and quite happy about it. I don't know if the antibiotics are making her feel better (remember the last time she was on them she felt better until about 4 days after she was off of them) or if she is actually getting better. I am going to keep these next appointments and see what the blood tests show. I guess they are doing some liver and kidney panels or something with the blood tests. I want to know for sure that I have done what I need to do. She will be on the antibiotics for about 3 more weeks and I don't want to have her get off of them, get back in pain and then realize there was a problem the whole time. You know?

While my dad is here for the next month, I will definitely update this webpage but may not visit as many sites as I normally do. Please know that my prayers are with each and everyone of you and I will come by as I can. When my dad is here he depends on me for errands and appointments and I enjoy going out with him. I told him he needs to help me lose some more weight while he is here. Last time he was here for 2 months, I lost 10 pounds. Since he has been gone for 2 months, I have lost 4? He was here during Thanksgiving and Christmas so 10 pounds was great!

Well please each of us try to take 30 minutes a day to do something fun and relaxing. Share with me what you do and I will do the same. I hope to start walking everyday around the block a few times. I need to get some sun and exercise.

I will be praying for each of you and will try to update every other day with pictures and news. Love, Tracy


Saturday, April 26, 2003 8:29 AM CDT

Just a quick new journal update. I was going to update last night but yesterday was very stressful so I decided against it until this morning. In the morning I checked up on a few sites and I found out dear Tyler had passed away. Although I know he was in a lot of pain and feeling so bad, it still hurts to know that cancer took someone else. I read through Tyler's history not too long ago, the whole journal history and could only compare it to Katia. He was doing so very good for quite some time and then that nasty disease came back. Well now Tyler found a way to beat it and he is in heaven running around cancer free. I just pray that little Katia will stay in remission. I fear her leukemia coming back so much and I hate that but I can't shake that. Now with Tatiana sick, it just really keeps me nervous because of what we have already been through. I know Tatiana's problem will probably be something very small but just not found yet but I still really worry for my daughter.
On another note, my grandmother turned 90 years old in February. We had a nice birthday party for her in January though because all her kids were in town at the same time which is rare. My dad lives in Honduras and one of my uncles lives in North Carolina. My other aunt and uncle live here. She has 4 kids. She was so happy to have them all there for her party.
Then she got sick just about 2 weeks after that party and never really got better. Yesterday around 11AM she passed away. Now she is in heaven with my grandfather so I am sure she is much happier. She was very tired of people medicating her and bugging her. My dad is flying in from Honduras tomorrow or Monday for the funeral. He will be here for about a month (so I won't be on the computer too much during that time cause he keeps me busy going places).
Then we were going over our finances yesterday and things are just so very tight right now. When most people say tight, they can pull out a credit card and manage but when I say tight, I mean tight! We will get through it but it is just the stresses all piled up.
Please continue to pray for the children listed below and for Tyler's parents and family. Go by these pages and offer words of encouragment because they are so uplifting to me to read in my guestbook and I know everyone needs encouragement. As you go through your daily routines always try to encourage those around you. It is the little things that people really remember. I one time read that a way to boost your child's self esteem is to say something good about them to someone else so they can hear you. I often see them nosing around while I am on the phone and since I am sure they are trying to hear what I say I will make a comment like, "Sharayah has been very helpful around the house and is doing so good in school!" Well that goes a long way. She thinks I don't know she heard me say that but she will do everything in her power to keep that statement true. It makes them feel good. Same thing with your spouse, parents, or friends. Little words offer a lot of encouragement and happiness:)
Thank you for coming by to check on little Katia! She is awake now so I must go. Have a great day!
Love, Tracy

These are a few that really need your prayers right now and your visits :)

Brittany


Chassidy


Jalen


Tyler


Colby


Baby Brandon


Taylor Johnson


Wednesday, April 23, 2003 10:31 AM CDT

UPDATE APRIL 25, 2003
I JUST FOUND OUT THAT TYLER ROBBINS HAS GONE TO BE WITH OUR LORD IN HEAVEN. HERE IS A SMALL PART OF WHAT WAS WRITTEN ON HIS PAGE, "Our beautiful, courageous little boy left us tonight. At least God answered one of my prayers and I think it was peaceful for Tyler. He died in our arms at 8:34pm". PLEASE STOP BY THEIR PAGE TO LEAVE A WORD OF ENCOURAGMENT FOR THEIR PARENTS. I CAN'T IMAGINE HOW THEY ARE FEELING RIGHT NOW.

****LITTLE JALEN IS VERY SICK RIGHT NOW. HIS LINK IS AT THE BOTTOM OF THIS ENTRY. THE DOCTORS SAY HE HAS MULTIPLE AREAS OF BLEEDING IN HIS BRAIN. THERE IS NOTHING THEY CAN DO. HIS MOM HASN'T HEARD HIS VOICE FOR QUITE SOME TIME. JALEN IS 17 MONTHS OLD. SHE REALLY WANTS TO HEAR HIM SAY, "MAMA." THEY REALLY NEED OUR PRAYERS. PLEASE STOP BY THEIR PAGE:)

ALSO, AT THE BOTTOM OF THIS LIST IS A NEW LITTLE GIRL, TAYLOR JOHNSON. TAYLOR HAS NEUROBLASTOMA AND IS CURRENTLY IN ISOLATION MOST OF THE TIME FROM HER FAMILY DUE TO RADIATION. SHE IS IN A LOT OF PAIN AND REALLY NEEDS OUR PRAYERS. SHE IS 7 1/2 YEARS OLD AND HAS BEEN BATTLING THIS DISEASE SINCE SHE WAS 4 YEARS OLD. PLEASE STOP BY THEIR PAGE:)

Katia is doing well right now. Her uncle is visiting and today is his birthday so that means CAKE!!! That just made her day! Tatiana is about the same. Last night she seemed quite a bit better but this morning the pain is back to a 5 on the scale. I am trying to think what we did different last night but I can't think of anything. Her pediatrician is setting up another appointment for a 2nd opinion. It will be some time next week. Tatiana hates doctor visits but now she is ready to go cause she also hates pain.

Well please check on these kids above and the other ones in the list below. Tyler on the list has AML and he just recently relapsed. The leukemia is back really bad so they are just trying to enjoy time together and are at home. This breaks my heart. I can't imagine going through that and I try to keep that as far out of my mind as possible.

Chassidy was getting ready for a BMT, they had just found a 6/6 match but then she relapsed and they are having a hard time getting her into remission now.

Well, I gotta run. Katia isn't feeling all that great today so she is really in need of extra!!! attention so I must go:) Love, Tracy

Please still continue to pray for our families.

These are a few that really need your prayers right now and your visits :)

Brittany


Chassidy


Jalen


Tyler


Colby


Baby Brandon


Taylor Johnson


Sunday, April 20, 2003 10:28 AM CDT

Tuesday, April 22, 2003
UPDATE: I so appreciate everyone's input on Tatiana. I am writing things down. I wanted to give Tatiana a few days to see what happened. Today her pain was around a 5 in her abdomen and about a 4 with her pain. I am still going to call her pediatrician now tomorrow and set up for a second opinion. It would just make me feel better and also Tatiana doesn't know why they can't find the problem.
If you haven't seen this added on feature on the page, drop by and see

KATIA'S DETAILED JOURNAL

This journal goes through all the appointments and problems before she was diagnosed and then also goes all the way through Easter Sunday this year. This little baby has been such a trooper for going through so much. I admire my 3 year old!!!! She is one tough cookie and she is going to beat this disease!!!

UPDATE: I AM GOING TO BE ADDING KATIAS JOURNALS ON HERE. THERE WILL BE A LINK ON THE BOTTOM TO FOLLOW "KATIA'S MEDICAL HISTORY". IT STARTS FROM JANUARY 2002 THROUGH YESTERDAY. I ALWAYS UPDATE IT AND FIND IT VERY HELPFUL TO LOOK BACK TO BUT ALSO WHEN WE WERE IN THE HOSPITAL AND NEW PATIENTS WOULD COME IN, THEY WOULD ENJOY - OR SOMETHING LIKE ENJOY - LOOKING OVER THE JOURNAL TO LEARN MORE ABOUT WHAT MAY LIE AHEAD. I SHOULD HAVE THAT LINK THERE BY TONIGHT. I NEED TO GO MAKE THE PAGE TO LINK TO.

ABOUT TATIANA TODAY - A LOT OF HER PAIN RIGHT NOW IS CONSISTENTLY AROUND HER ABDOMEN RIGHT BELOW HER BELLY BUTTON. I CALLED HER DOCTOR TODAY BUT THE ONE SHE SEES NORMALLY WASN'T THERE TODAY SO I WILL CALL TOMORROW. MAYBE IT IS HER APENDIX? I DON'T KNOW BUT I STILL FEEL A SECOND OPINION IS IN ORDER.
Small note: Someone signed the guestbook saying maybe Tatiana is faking it? Although I can see their point since Katia has been so sick, Tatiana is definitely not that way and her labs are off. Something is definitely wrong with her. Tatiana gets very puny when she feels bad and you can just tell. All three of my girls are that way. As far as one on one time, we do try to do that as much as possible. I or their daddy will take them out here and there or just sit on the porch and talk or go for a walk with them. I like taking them out to eat by themsleves.

** Something we did yesterday which turned out better than I thought it would. I had Sharayah and Tatiana write letters to their other sisters and to each of their parents. What they loved about them and what they hoped for that person in their future. I thought it would be nice to read for Easter. They did them the night before actually. Sharayah wrote a note to Tatiana, Katia, Me and Myron. Tatiana wrote one to Sharayah, Katia and me, and Myron. I wrote one to each of the girls. WELL, we read each of our notes out loud, the ones written TO us and we were all in tears and laughing and it was just so so nice. I am sure each of us will treasure them for life. I want to do that each Thanksgiving. Myron took his to work today and he was so touched and I was too by all the love and appreciation the girls have for us! and for eachother. It was so nice. Maybe you can try it with your kids that can write and share thoughts.

I am going to add on but leave the bottom part because I really believe in the message.
Last night we got really no sleep. Katia didn't feel too good. She kept complaining that her belly hurt and she just seemed restless. I couldn't sleep because I was just worried and really not tired. Plus I had royally messed this webpage up and had to fix it. I decided to put Katia in with Tatiana (where she is supposed to sleep) but she sat and bugged Tatiana so Tati brought her back to me. I was still working on the computer. This was around 12:30AM this morning. Then Tati comes back out and says she is in a lot of pain like someone sticking a knife in her stomach and stabbing her!! She rated the pain a 7 on a scale of 1 - 10. Recently her lower abdomen does hurt even when she is not peeing. Usually around bedtime though, sometimes in the day. I really do not feel this doctor is diagnosing her right so on Monday I am going to call her pediatrician and request another doctor for a 2nd opinion. I just really have a bad feeling and I don't feel like making Tatiana wait a month of drinking more water and peeing more, I mean come on!!! About 2 months before Katia was diagnosed, I had a horrible dream of us at her funeral. I saw Katia just lying there in a pink dress with flowers. I was just sobbing and sobbing. Myron woke me up from the dream because I was actually crying in my sleep. First, I forbid anybody to buy her a pink dress but then I told Myron that Katia does not have allergies or an eye infection like the pediatrician was telling us. Something was really wrong. That next day is when I took her to the ER and ordered them to do a CT Scan which showed "nothing". Later we found out the person who read that must have been blind! There was a huge mass in her eye found on an MRI just 6 days later and when we picked up the CT from the hospital, it was obvious. I am saying all of this to say, that dream just told me WAKE UP and make the doctors figure this out! Well in late January before we moved to this house, I had the same kind of dream about Tatiana, not a funeral but we were at the hospital and she had just died. We took her in for something minor and found out horrible news and days later we lost her. This was in my dream. At this time, Tatiana had not complained at all to me but now come to find out she was having pain at this time and througout February but just didn't say anything until March. I don't WISH for something to be wrong with Tatiana, that would just be devastating but I want to KNOW nothing is going on that we are missing. First of all this doctor didn't even really look over the results from Tatiana's blood or urine test and there are some questionable things on there to me. Plus I couldn't see PECK on the ultrasound machine. He was going so fast and it was just unclear. I watched Katia get an ultrasound the other day of her abdomen, spleen, kidneys, heart, etc and I could see things good and understand what I was looking at. This doctor acted like he was trying to prove me wrong. Anyway, I am sorry to be ranting and raving (if that is how you spell those words) but I was up all night mad and confused and I just feel like I need to be very persistant here for Tatiana's sake and this family's sake! Here are some of the results that concern me:
Blood Test in January (hasn't had one since then)
Hemoglobin 14.9 normal 11.5 - 14.5
Polys 63 normal 38 -58
Cholestrol 234 normal up to 169

Not that these are way off but why are they off?

Urine test in January

WBC - trace normal is negative
Ketones - Trace normal is negative
Mucus Threads - moderate normal is negative

Urine test in March

Appearance - Hazy normal is clear
WBC Esterase - 2 normal is negative
Protein - 2 normal is negative
Occult Blood - 2 normal is negative
WBC/HPF - 5-10 normal is 0 - 5
RBC/HPF - 5-10 normal is 0 - 3

If you have any input, please tell me or ideas of what I should do or ask for.
She has had UTIs ruled out twice. That is what her pediatrician thought she had. She ran the labs 2 times in March and no UTI.
Her pediatrician also says Tatiana does not show to be diabetic.
Tatiana took Augmentin for 10 days in March and during that time did not have pain but 4 days later, the pain all came back.
Now she is on Macrodantin 50 mg. for 30 days to prevent infections? She has been told to drink more often and pee more often plus she takes metamucel once a day but he wants her to take it twice to try to have a bowel movement every day instead of every other day. He wants her to make sure she pees twice while at school.

I am going to leave this post on here until I can find out what is going on. I am hoping someone will come by here with some input. I will do updates above it but I am going to leave this here for a while. Thank you for any input or if you can print this and pass it on to any doctor you may know or go to in the next few days :) Love, Tracy

April 19, 2003 3PMish
We just got done making Easter Eggs. We don't normally do the Easter egg and baskets because I always want my kids to celebrate the TRUE meaning of Easter, Christ's ressurection from the cross. BUT this year, the kids have been through so much and lately I am really trying to things with them all together to "Make Memories". After this year and all we have gone through as a family I want to do things with them that we can all look back on for the rest of our lives and smile. I want them to be very close, no matter how far apart they may live from eachother, all their lives. I look at everything different now. It is like a homemovie is being made of your life. I don't know. That may sound dumb to some people but life is very important and to enjoy each day. When something is bothering me, I try to think, "Will it bother me next month or six months from now?" If not, I try to get it out of my head. If you would like to answer a question in the guestbook, here goes! What is the best memory you have with your family or your kids, spouse or whatever? What brings a true smile to your face? Do you still date your spouse? Sit down and read to your kids? Watch silly movies? Talk about your days at the end of a day? I read the other day, nobody can add time to their day but we can always change how we spend time. I liked that. Love, Tracy

Please still continue to pray for our families.

These are a few that really need your prayers right now and your visits :)

Brittany


Chassidy


Jalen


Tyler


Colby


Baby Brandon


Taylor Johnson


Sunday, April 20, 2003 10:28 AM CDT

I am going to add on but leave the bottom part because I really believe in the message.
Last night we got really no sleep. Katia didn't feel too good. She kept complaining that her belly hurt and she just seemed restless. I couldn't sleep because I was just worried and really not tired. Plus I had royally messed this webpage up and had to fix it. I decided to put Katia in with Tatiana (where she is supposed to sleep) but she sat and bugged Tatiana so Tati brought her back to me. I was still working on the computer. This was around 12:30AM this morning. Then Tati comes back out and says she is in a lot of pain like someone sticking a knife in her stomach and stabbing her!! She rated the pain a 7 on a scale of 1 - 10. Recently her lower abdomen does hurt even when she is not peeing. Usually around bedtime though, sometimes in the day. I really do not feel this doctor is diagnosing her right so on Monday I am going to call her pediatrician and request another doctor for a 2nd opinion. I just really have a bad feeling and I don't feel like making Tatiana wait a month of drinking more water and peeing more, I mean come on!!! About 2 months before Katia was diagnosed, I had a horrible dream of us at her funeral. I saw Katia just lying there in a pink dress with flowers. I was just sobbing and sobbing. Myron woke me up from the dream because I was actually crying in my sleep. First, I forbid anybody to buy her a pink dress but then I told Myron that Katia does not have allergies or an eye infection like the pediatrician was telling us. Something was really wrong. That next day is when I took her to the ER and ordered them to do a CT Scan which showed "nothing". Later we found out the person who read that must have been blind! There was a huge mass in her eye found on an MRI just 6 days later and when we picked up the CT from the hospital, it was obvious. I am saying all of this to say, that dream just told me WAKE UP and make the doctors figure this out! Well in late January before we moved to this house, I had the same kind of dream about Tatiana, not a funeral but we were at the hospital and she had just died. We took her in for something minor and found out horrible news and days later we lost her. This was in my dream. At this time, Tatiana had not complained at all to me but now come to find out she was having pain at this time and througout February but just didn't say anything until March. I don't WISH for something to be wrong with Tatiana, that would just be devastating but I want to KNOW nothing is going on that we are missing. First of all this doctor didn't even really look over the results from Tatiana's blood or urine test and there are some questionable things on there to me. Plus I couldn't see PECK on the ultrasound machine. He was going so fast and it was just unclear. I watched Katia get an ultrasound the other day of her abdomen, spleen, kidneys, heart, etc and I could see things good and understand what I was looking at. This doctor acted like he was trying to prove me wrong. Anyway, I am sorry to be ranting and raving (if that is how you spell those words) but I was up all night mad and confused and I just feel like I need to be very persistant here for Tatiana's sake and this family's sake! Here are some of the results that concern me:
Blood Test in January (hasn't had one since then)
Hemoglobin 14.9 normal 11.5 - 14.5
Polys 63 normal 38 -58
Cholestrol 234 normal up to 169

Not that these are way off but why are they off?

Urine test in January

WBC - trace normal is negative
Ketones - Trace normal is negative
Mucus Threads - moderate normal is negative

Urine test in March

Appearance - Hazy normal is clear
WBC Esterase - 2+ normal is negative
Protein - 2+ normal is negative
Occult Blood - 2+ normal is negative
WBC/HPF - 5-10 normal is 0 - 5
RBC/HPF - 5-10 normal is 0 - 3

If you have any input, please tell me or ideas of what I should do or ask for.
She has had UTIs ruled out twice. That is what her pediatrician thought she had. She ran the labs 2 times in March and no UTI.
Her pediatrician also says Tatiana does not show to be diabetic.
Tatiana took Augmentin for 10 days in March and during that time did not have pain but 4 days later, the pain all came back.
Now she is on Macrodantin 50 mg. for 30 days to prevent infections? She has been told to drink more often and pee more often plus she takes metamucel once a day but he wants her to take it twice to try to have a bowel movement every day instead of every other day. He wants her to make sure she pees twice while at school.

I am going to leave this post on here until I can find out what is going on. I am hoping someone will come by here with some input. I will do updates above it but I am going to leave this here for a while. Thank you for any input or if you can print this and pass it on to any doctor you may know or go to in the next few days :) Love, Tracy

April 19, 2003 3PMish
We just got done making Easter Eggs. We don't normally do the Easter egg and baskets because I always want my kids to celebrate the TRUE meaning of Easter, Christ's ressurection from the cross. BUT this year, the kids have been through so much and lately I am really trying to things with them all together to "Make Memories". After this year and all we have gone through as a family I want to do things with them that we can all look back on for the rest of our lives and smile. I want them to be very close, no matter how far apart they may live from eachother, all their lives. I look at everything different now. It is like a homemovie is being made of your life. I don't know. That may sound dumb to some people but life is very important and to enjoy each day. When something is bothering me, I try to think, "Will it bother me next month or six months from now?" If not, I try to get it out of my head. If you would like to answer a question in the guestbook, here goes! What is the best memory you have with your family or your kids, spouse or whatever? What brings a true smile to your face? Do you still date your spouse? Sit down and read to your kids? Watch silly movies? Talk about your days at the end of a day? I read the other day, nobody can add time to their day but we can always change how we spend time. I liked that. Love, Tracy

Please still continue to pray for our families.

These are a few that really need your prayers right now and your visits :)

Brittany


Chassidy


Jalen


Tyler


Colby


Baby Brandon


Saturday, April 19, 2003 2:06 PM CDT

Okay, I just did this update but it didn't show so...
We just got done making Easter Eggs. We don't normally do the Easter egg and baskets because I always want my kids to celebrate the TRUE meaning of Easter, Christ's ressurection from the cross. BUT this year, the kids have been through so much and lately I am really trying to things with them all together to "Make Memories". After this year and all we have gone through as a family I want to do things with them that we can all look back on for the rest of our lives and smile. I want them to be very close, no matter how far apart they may live from eachother, all their lives. I look at everything different now. It is like a homemovie is being made of your life. I don't know. That may sound dumb to some people but life is very important and to enjoy each day. When something is bothering me, I try to think, "Will it bother me next month or six months from now?" If not, I try to get it out of my head. If you would like to answer a question in the guestbook, here goes! What is the best memory you have with your family or your kids, spouse or whatever? What brings a true smile to your face? Do you still date your spouse? Sit down and read to your kids? Watch silly movies? Talk about your days at the end of a day? I read the other day, nobody can add time to their day but we can always change how we spend time. I liked that. Love, Tracy

Please still continue to pray for our families.

These are a few that really need your prayers right now and your visits :)

Brittany


Chassidy


Jalen


Tyler


Colby


Baby Brandon


Friday, April 18, 2003 3:32 PM CDT

Okay we went to Tatiana's Dr. Appt. I am happy with what he said but I just hope he is right. He did an ultrasound and saw nothing unusual in her bladder or kidneys. His suggestion is to take an antibiotic pill for a month (it starts with an 'M') and to drink more water and go to the bathroom more often. He also wants her to take her Metamucel (she takes that right now to lower cholestrol) twice a day instead of once a day. She has bowel movements usually every other day and he would rather every day. Plus he wants her to go pee every two hours even if she doesn't need to. Then come back to his office in a month. I mean I am glad he did the ultrasound but something tells me there is more to this than drinking and peeing more. I am going to give it the month and then see and I pray he is right. Thank you so much for your prayers and advice. I do read every idea people have. Love, Tracy

Please still continue to pray for our families.

These are a few that really need your prayers right now and your visits :)

Brittany


Chassidy


Jalen


Tyler


Colby


Baby Brandon


Friday, April 18, 2003 3:32 PM CDT

Okay we went to Tatiana's Dr. Appt. I am happy with what he said but I just hope he is right. He did an ultrasound and saw nothing unusual in her bladder or kidneys. His suggestion is to take an antibiotic pill for a month (it starts with an 'M') and to drink more water and go to the bathroom more often. He also wants her to take her Metamucel (she takes that right now to lower cholestrol) twice a day instead of once a day. She has bowel movements usually every other day and he would rather every day. Plus he wants her to go pee every two hours even if she doesn't need to. Then come back to his office in a month. I mean I am glad he did the ultrasound but something tells me there is more to this than drinking and peeing more. I am going to give it the month and then see and I pray he is right. Thank you so much for your prayers and advice. I do read every idea people have. Love, Tracy

Please still continue to pray for our families.

These are a few that really need your prayers right now and your visits :)

Brittany


Chassidy


Jalen


Tyler


Colby


Baby Brandon


Thursday, April 17, 2003 10:01 AM CDT

Quick note for an update. Tomorrow please pray for Tatiana. Her appointment is at 2:45. Last night and this morning she has been in quite a bit of pain while urinating. It seems to have gotten worse. She always rates it 1 - 10. For the beginning of the week, it remained around 3 but Wednesday, she said 5, last night she said 6 and this morning 7. She was teary eyed last night after using the bathroom. I hate to see Tatiana in pain because it really brings her down. I have never met anyone who hates pain more than her and gets so scared. Her legs have also been hurting her a lot lately. She just brought that to my attention a couple days back. Hopefully this new doctor gets things moving quickly. I hate the fact it will be Friday because then nothing else will get done till Monday. Well, please pray for her.
Katia however is doing very well. Pretty hyper but she is doing well. She doesn't want to eat anything this morning but she has her mind more on watching a show she likes on TV so I am sure that will turn around.
I am so proud of my girls making good grades. That really makes me happy and feeling okay about putting them back in public school:)
Please still continue to pray for our families.

These are a few that really need your prayers right now and your visits :)

Brittany


Chassidy


Jalen


Tyler


Colby


Baby Brandon


Tuesday, April 15, 2003 3:44 PM CDT

UPDATE, APRIL 16, 2003
I JUST GOT OFF THE PHONE WITH MY DOCTOR'S OFFICE. I EXPLAINED THE SITUATION TO THEM AND THEY SUGGEST THAT AS SOON AS IT STARTS SHOWING AGAIN JUST TO COME IN. I REALLY CAN'T FEEL MUCH OF ANYTHING THERE RIGHT NOW AND SINCE IT POPPED, THERE ISN'T MUCH TO SEE. I WISH I COULD REMEMBER HOW THE WHOLE THING PROGRESSED BACK IN 1992 BUT I CAN'T BUT I AM GOING TO KEEP A VERY VERY CLOSE EYE ON IT. I JUST HAD BLOOD TESTS DONE A LITTLE OVER A MONTH AGO FOR MY YEARLY CHECKUP AND ALL LOOKED WELL EXCEPT MY CHOLESTROL WAS 229 BUT LAST YEAR IT WAS 279 SO I HAVE IMPROVED OVER THE LAST 15 MONTHS:) THANK YOU FOR ALL OF YOUR CONCERNS SO I DID CALL THE DOC:)
Okay, I was going to add a mini-update on yesterday's update but then I realized that was already an add-on so I should start again. Today is one year since Katia was diagnosed and she is doing wonderful!!!!! We took her to Denny's today for breakfast - she and I love that place! Then we did some errands. Around noon, I started feeling a bump on the inside of my lip. Then at 1PM it was this clear looking blister thing. At 2PM it was 4x's bigger than it was at noon. Then I started thinking. Back in 1993 I had something like that for a few months. I finally went in after messing with it and popping the clear bubble for months and had the doctor look at it. They said it was a tumor. We lived in Oklahoma (Myron was in the military) so they sent me to Houston to have it removed and biopsied. It came back benign but that is all I know about it. Then a few months later, it started coming back in the same place again but it just disappeared. Now, it is on the opposite side of my mouth on the inside of my lip! Nasty, huh? Anyways, it is really in my way. It is about twice the size of a ladybug (since I always have ladybugs on my site, I will use that for the example). Around 4PM it popped. That is the same thing that used to happen the last time and then it would reappear. There is a little hard piece inside my lip right there. Also, I never have acne but today I have a huge "something" on my nose. It is just a big sore bump and also on my chin! Am I grossing anybody out yet? I just sound really outright weird right now. No, I am not including pictures for this. I tried to call my doctor but since it popped, I don't know what to do. Should I go in and have it cut out again and tested? Last time it was benign. Does anybody have any information on this.

MY WHOLE FAMILIY SEEMS TO BE FALLING APART RIGHT NOW. WELL KATIA IS FINE. IT IS JUST REALLY ME AND TATIANA! MYRON IS HAVING A ROUTE CANAL DONE THESE LAST FEW WEEKS (WHICH IS REALLY NORMAL) AND SHARAYAH IS DOING FINE!

Maybe someone has some input :)
Love, Tracy

PS I am only leaving this post up for 24 hours and then I will put something better here.

Please still continue to pray for our families.

These are a few that really need your prayers right now and your visits :)

Brittany


Chassidy


Jalen


Tyler


Colby


Baby Brandon


Sunday, April 13, 2003 2:27 PM CDT

UPDATE 4-14-03 TOMORROW APRIL 15, WILL BE ONE YEAR SINCE KATIA WAS DIAGNOSED. THAT IS ALL I WILL WRITE BECAUSE I HAVE VERY MIXED FEELINGS ABOUT TOMORROW. ONE THOUGH IS I AM SO HAPPY KATIA IS FEELING SO WELL NOW:)

UPDATE #2 TATIANA AND SHARAYAH BOTH RECEIVED THEIR REPORT CARDS:) TATIANA RECEIVED 5 A's AND 3 B's. SHARAYAH RECEIVED STRAIGHT A's. I AM SO PROUD OF BOTH OF THEIR HARD WORK. THEY HAD BEEN HOMESCHOOLED UNTIL JANUARY 2003. TATIANA IS IN 4TH GRADE AND SHARAYAH IS IN 8TH GRADE. BOTH ARE IN ALL ADVANCED CLASSES. YES I AM BRAGGING!!!

Well yesterday was the 5th Annual Joe Perillo Golf Tournament! Let me tell you first about Joe and how the tournament was started. Joe Perillo was diagnosed about 5 years ago with Leukemia CML. Joe was able to have a successful Bone Marrow Transplant with his sister being his donor! His friend Randy wanted to do something to help raise funds and awareness for Joe and the fight against Leukemia so he put together the Joe Perillo Golf Tournament. Since that one was such a success, Joe and Randy together decided to hold this tournament each year having a different recipient each year. We were honored to meet the recipient from 2 year years ago, Pete. Pete was diagnosed with Leukemia CML one month after turning 21. He had just gone for a routine physical never imagining how that would change his life. Pete is currently doing very well being treated with GLEEVEC. Pete is also closely working with The Leukemia and Lymphoma Society to help raise funds and awareness in the fight against Leukemia. I would like to thank everybody that was involved in this year's tournament either by helping to arrange the day, work at the tournament, sponsor gifts and donations, etc. Our family had a fun day and met a lot of very nice people!!!! There are a BUNCH of new pictures posted in the album from this event. We really had a wonderful time.
I am also leaving my post from yesterday afternoon about some pages I would like each of you to go by visit and offer prayer and support. These families are really going through some very hard times and have been so supportive of me and my family.

Tyler Robbins


Baby Brandon


Chassidy


Little Jalen


Colby



Love, Tracy


Saturday, April 12, 2003 3:07 PM CDT

Today is the 5th annual Joe Perillo Golf Tournament and Katia is the guest of honor this year so we were out there this morning and we are going back in an hour or so for dinner! She is having a blast! Over 300 golfers showed up. The pictures will be posted on the site in the next couple of days (or maybe by tomorrow) and we will be on the news to talk about it some time this week and update everyone how Katia is doing. That will be on CBS's Life Around the Bay with Marty Matthews @4PM sometime but the show will be live (I am nervous)!
Tatiana on a scale of 1 - 10 today is reporting a 3 so that is better. I agree about the kidney stones because the more water we can force down her, the better.
We really needed this day out. It really takes our minds off of things and just to see how many people turned out really makes us feel Katia is going to pull through this with flying colors and make a HUGE difference with her LIFE!
Love, Tracy


I signed our journal and then I checked on a few of the kids I regularly check and I feel so bad right now!!!! Why do so many things go the way the go? I HATE LEUKEMIA!!!! I REALLY HATE THIS CRAPPY, FREAKING DISEASE!!! I am adding some links to some websites of kids that really need prayers for miracles! I try to check on people that I know everyday. If you know someone that really needs prayers or a site that you think I should check on regularly, please let me know. I try to sign guestbooks weekly so people know I have come by and I am praying for them. This whole golf tournament is to raise some funds and awareness. I try to tell EVERYBODY I meet how urgent it is to fund research, become a blood and marrow donor and have kids checked regularly through yearly blood tests! My God, I hate this disease and I want to beat it up with a vingence!!!!! Please visit these websites EVERY CHANCE you get. Love, Tracy

Chassidy (Leukemia AML)


Tyler Robbins
(Leukemia AML)


Colby (Leukemia JMML)


Baby Brandon


Thursday, April 10, 2003 12:29 AM CDT

Question: Katia has had bright orange poop last few days? No real change in her diet except the mineral oil. Any ideas? I have a BUNCH of questions right now and am going bug-eyed on this computer!
Thought I would sit down and maybe ask a few questions this time. First of all, Katia is having a very good day. On Tuesday, April 15, will be one year since she was diagnosed. It will be a happy/sad day for us. Happy because she is still with us and doing well and sad because of all the last year has put her little body through.
Now to Tatiana (our 10 year old daughter for those who don't know). She had her apppointment today and was referred to a urologist. The soonest appointment is on April 18th. She as much as the rest of us is looking forward to SOMEONE finding out why she is having these pains and how to fix it BUT at the same time, we all think back to ALL the appointments we were having this time last year trying to find out why KATIA was having so many problems and the devastating news we ended up finding out. Actually this time last year Katia was going through angiograms and an embolism of her eye and she was feeling really bad by now even though we didn't know what lied ahead. It was after the embolism on April 10th that she ended it back in the hospital on the 12th with menengitus and then diagnosed with Leukemia on the 15th. Poor Tatiana is a nervous child as it is BUT because of last year, she is more nervous. I have asked her doctors to test for anything big and then work down to the small ideas so we can worry less as time goes by. Tatiana agrees!
So that is what we are going through. My question is if anyone has any ideas what could be wrong with Tatiana. Has anyone had a child with these types of symptoms but not being a UTI? Her symptoms are: Painful urination, blood in urine, pressure to pee but she has to really push to get the pee out, pain in lower abdomen, and very thirsty a lot. The doctors have ruled out UTI and diabetes. I would appreciate any input so I can maybe bring up ideas or concerns at this next appointment. I think their plan is to do a sonogram of her bladder or kidneys. I really appreciate those who drop by this page more than words can ever say! Love, Tracy

Links from the other days journals:

"America Stands Strong"
song


Make a Child Smile Organization


Hugs and Hope Organization


National Children's Cancer Society


Presidential Prayer Team


Little Jalen's Site


 



Wednesday, April 9, 2003 4:11 PM CDT

UPDATE TODAY: Well Tatiana's pain is back and back bad! I called her doctor and the three are going to get together and discuss this. She will go in tomorrow at 9AM. Please pray the doctors will know what tests to run to get her better quickly. Poor Tatiana is so nervous to go to the doctor. I am going to leave the update from yesterday on her so that people can follow the links still and see how Katia is doing :) Love, Tracy
WE HAD A GREAT DAY TODAY!! WE WENT TO MCDONALDS AND KATIA PLAYED IN THE PLAYGROUND. SHE HASN'T DONE THAT FOR OVER A YEAR!!! IT WAS SO NICE. HER COUNTS ARE GOOD AND WE ARE ENJOYING THE FREEDOM FOR HER TO BE A TYPICAL 3 YEAR OLD. SHE DIDN'T WANT TO LEAVE AND COME HOME BUT WE DRAGGED HER OUT AND WENT TO THE MALL TO WALK AROUND!! THAT WAS FUN TOO. CHECK OUT THE NEW PICTURES. SHE WAS RECENTLY ON THE MAKE A CHILD SMILE ORGANIZATION SITE SO SHE RECEIVED A LOT OF CARDS AND GIFTS. SHE WAS ALSO ON THE HUGS AND HOPE WEBSITE. SHE WAS A MARCH 2003 CHILD ON BOTH OF THOSE SITES. THESE PLACES ARE GREAT. THEY POST THE CHILD'S ADDRESS (PO BOX) AND A LOT OF PEOPLE SEND CARDS AND GIFTS FOR THE MONTH AND ONGOING EVEN. IF YOU HAVEN'T VISITED THESE SITES, DROP BY THEM. ANOTHER GREAT PLACE TO STOP BY IS THE NATIONAL CHILDREN'S CANCER SOCIETY. THERE IS A BOARD ON THAT PAGE (CARE TO SHARE) TO GO ON AND TALK ABOUT MEDICAL AND FAMILY CONCERNS. THAT WAS ONE OF THE FIRST PLACES I TURNED TO WHEN KATIA WAS FIRST DIAGNOSED. ALSO, CBS IS GOING TO BE DOING AN UPDATE ON KATIA'S STORY. THIS TIME WE WILL BE FILMED LIVE IN THE STUDIO (I AM NERVOUS). I AM NOT SURE WHEN THIS WILL TAKE PLACE. SATURDAY, A FOUNDATION "THE ANNUAL JOE PERILLO GOLF TOURNAMENT" WILL BE HOSTING A GOLF TOURNAMENT AND KATIA IS THE GUEST OF HONOR THIS YEAR. IT WILL BE A BUSY DAY BUT WE ARE SO LOOKING FORWARD TO MEETING ALL OF THE GOLFERS AND THEIR FAMILIES. THERE WILL BE AROUND 300 GOLFERS OUT THERE TO GOLF, HAVE A DINNER AND AN AUCTION. KATIA LOVES TO MEET PEOPLE SO SHE SHOULD DEFINITELY HAVE A BLAST THAT DAY. OF COURSE I LOVE TO TAKE PICTURES SO IT WILL BE LIKE YOU WERE THERE WHEN I POST THE PICTURES. I THINK THAT IS ABOUT IT FOR NOW. ABOUT KATIA'S HEALTH. SHE IS STILL POSITIVELY IN REMISSION. ALL TESTS ARE BACK. SHE IS DOING A LOT BETTER WITH PAIN RIGHT NOW. SOMETHING (EITHER HER BOWEL MOVEMENTS OR URINE) IS COMING OUT KINDA ORANGISH BUT WE ARE KEEPING AN EYE ON THAT. I AM JUST HAPPY SHE ISN'T SCREAMING IN SEVERE PAIN!!! THAT MAKES MY VERY SOUL HAPPY. TATIANA FINISHED THE ANTIBIOTICS SHE WAS ON FRIDAY EVENING AND HASN'T FELT ANY PAIN WITH URINE SINCE THEN SO MAYBE THE ANTIBIOTICS CLEARED THE PROBLEM AWAY. FOR THOSE OF YOU WHO HAVEN'T HEARD THE AMERICA STANDS STRONG SONG YET, PLEASE TAKE A CHANCE TO STOP BY. IF I CAN GATHER ENOUGH GUESTBOOK SIGNATURES (MESSAGES TO THE SOLDIERS) THEN I WILL PRINT IT AND SEND IT TO A SOLDIER WE HAVE AGREED TO PRAY FOR EACH DAY. IF YOU VISIT PRESIDENTIAL PRAYER TEAM THEN YOU CAN SIGN UP TO PRAY FOR A SPECIFIC SOLDIER EACH DAY. OURS IS BRADLEY RAKOV, MARINES. IF YOU WISH YOU CAN JUST SAY A PRAYER FOR HIM. WE ALL KNOW HOW IMPORTANT PRAYER IS. "BLESSED IS THE NATION WHOSE GOD IS THE LORD". PSALM 33:12A.
I ALSO WANT TO PASS ON LITTLE JALEN'S SITE. PRAY THAT THE DOCTORS CAN GET HIM INTO REMISSION SO HE CAN HAVE A BONE MARROW TRANSPLANT. HE IS 17 MONTHS OLD AND HAS BEEN IN QUITE A BIT OF PAIN IN HIS SHOULDER LATELY. WELL KATIA HAS A POOPY DIAPER (WITH NO SCREAMING) SO I MUST END THIS! I AM GOING TO LEAVE THE POEMS ON THAT I WROTE FOR HER THROUGH THIS JOURNAL ENTRY AND THEN THEY WILL BE IN THE HISTORY AREA. THANK YOU FOR VISITING AND CHECKING ON OUR DEAR LITTLE KATIA. I WILL PRAY FOR YOU AND YOUR FAMILIES. LOVE, TRACY

If Only
for a Moment

If only for a moment,

I want to hold you tight,

I want to see your pretty face,

Treasure your very sight!


If only for a moment,

I wish to see you play,

Smile, laugh and run,

On a beautiful Spring day.


If only for a moment,

I will watch you as you sleep,

Eat a sugar cookie,

Or just play hide and seek.


If only for a moment,

I want to hear you sing,

See you learn to ride a bike,

Or soar high in a swing.


If only for a moment,

Let's do all we can do,

Cause here now and forever,

My sweet baby, I LOVE YOU!


Written for Katia by Tracy
Solomon (Mommy) * April 6, 2003



Mommy Makes it Better


The times you have a boo boo

On your arm or leg or toe,

Mommy makes it better,

And off to play you go.


If someone takes your toy

Or gives you a mean look.

Mommy makes it better,

Reading a story from a book.


When you go off to the doctor

And something has to hurt,

Mommy makes it better,

by calling you her "SQUIRT".


As you roll off of the sofa

And fall onto the floor

Mommy makes it better,

By kissing what is sore.


If Mommy has to go bye bye,

And she tells you that you can't,

Mommy makes it better,

By putting "Kissies" on your hand.


Now Mommy has a question,

If there's cancer in your blood,

Can Mommy make it better

With her kisses and her love?


Written for Katia by Tracy Solomon (Mommy) * April 6, 2003




Tuesday, April 8, 2003 4:40 PM CDT

WE HAD A GREAT DAY TODAY!! WE WENT TO MCDONALDS AND KATIA PLAYED IN THE PLAYGROUND. SHE HASN'T DONE THAT FOR OVER A YEAR!!! IT WAS SO NICE. HER COUNTS ARE GOOD AND WE ARE ENJOYING THE FREEDOM FOR HER TO BE A TYPICAL 3 YEAR OLD. SHE DIDN'T WANT TO LEAVE AND COME HOME BUT WE DRAGGED HER OUT AND WENT TO THE MALL TO WALK AROUND!! THAT WAS FUN TOO. CHECK OUT THE NEW PICTURES. SHE WAS RECENTLY ON THE MAKE A CHILD SMILE ORGANIZATION SITE SO SHE RECEIVED A LOT OF CARDS AND GIFTS. SHE WAS ALSO ON THE HUGS AND HOPE WEBSITE. SHE WAS A MARCH 2003 CHILD ON BOTH OF THOSE SITES. THESE PLACES ARE GREAT. THEY POST THE CHILD'S ADDRESS (PO BOX) AND A LOT OF PEOPLE SEND CARDS AND GIFTS FOR THE MONTH AND ONGOING EVEN. IF YOU HAVEN'T VISITED THESE SITES, DROP BY THEM. ANOTHER GREAT PLACE TO STOP BY IS THE NATIONAL CHILDREN'S CANCER SOCIETY. THERE IS A BOARD ON THAT PAGE (CARE TO SHARE) TO GO ON AND TALK ABOUT MEDICAL AND FAMILY CONCERNS. THAT WAS ONE OF THE FIRST PLACES I TURNED TO WHEN KATIA WAS FIRST DIAGNOSED. ALSO, CBS IS GOING TO BE DOING AN UPDATE ON KATIA'S STORY. THIS TIME WE WILL BE FILMED LIVE IN THE STUDIO (I AM NERVOUS). I AM NOT SURE WHEN THIS WILL TAKE PLACE. SATURDAY, A FOUNDATION "THE ANNUAL JOE PERILLO GOLF TOURNAMENT" WILL BE HOSTING A GOLF TOURNAMENT AND KATIA IS THE GUEST OF HONOR THIS YEAR. IT WILL BE A BUSY DAY BUT WE ARE SO LOOKING FORWARD TO MEETING ALL OF THE GOLFERS AND THEIR FAMILIES. THERE WILL BE AROUND 300 GOLFERS OUT THERE TO GOLF, HAVE A DINNER AND AN AUCTION. KATIA LOVES TO MEET PEOPLE SO SHE SHOULD DEFINITELY HAVE A BLAST THAT DAY. OF COURSE I LOVE TO TAKE PICTURES SO IT WILL BE LIKE YOU WERE THERE WHEN I POST THE PICTURES. I THINK THAT IS ABOUT IT FOR NOW. ABOUT KATIA'S HEALTH. SHE IS STILL POSITIVELY IN REMISSION. ALL TESTS ARE BACK. SHE IS DOING A LOT BETTER WITH PAIN RIGHT NOW. SOMETHING (EITHER HER BOWEL MOVEMENTS OR URINE) IS COMING OUT KINDA ORANGISH BUT WE ARE KEEPING AN EYE ON THAT. I AM JUST HAPPY SHE ISN'T SCREAMING IN SEVERE PAIN!!! THAT MAKES MY VERY SOUL HAPPY. TATIANA FINISHED THE ANTIBIOTICS SHE WAS ON FRIDAY EVENING AND HASN'T FELT ANY PAIN WITH URINE SINCE THEN SO MAYBE THE ANTIBIOTICS CLEARED THE PROBLEM AWAY. FOR THOSE OF YOU WHO HAVEN'T HEARD THE AMERICA STANDS STRONG SONG YET, PLEASE TAKE A CHANCE TO STOP BY. IF I CAN GATHER ENOUGH GUESTBOOK SIGNATURES (MESSAGES TO THE SOLDIERS) THEN I WILL PRINT IT AND SEND IT TO A SOLDIER WE HAVE AGREED TO PRAY FOR EACH DAY. IF YOU VISIT PRESIDENTIAL PRAYER TEAM THEN YOU CAN SIGN UP TO PRAY FOR A SPECIFIC SOLDIER EACH DAY. OURS IS BRADLEY RAKOV, MARINES. IF YOU WISH YOU CAN JUST SAY A PRAYER FOR HIM. WE ALL KNOW HOW IMPORTANT PRAYER IS. "BLESSED IS THE NATION WHOSE GOD IS THE LORD". PSALM 33:12A.
I ALSO WANT TO PASS ON LITTLE JALEN'S SITE. PRAY THAT THE DOCTORS CAN GET HIM INTO REMISSION SO HE CAN HAVE A BONE MARROW TRANSPLANT. HE IS 17 MONTHS OLD AND HAS BEEN IN QUITE A BIT OF PAIN IN HIS SHOULDER LATELY. WELL KATIA HAS A POOPY DIAPER (WITH NO SCREAMING) SO I MUST END THIS! I AM GOING TO LEAVE THE POEMS ON THAT I WROTE FOR HER THROUGH THIS JOURNAL ENTRY AND THEN THEY WILL BE IN THE HISTORY AREA. THANK YOU FOR VISITING AND CHECKING ON OUR DEAR LITTLE KATIA. I WILL PRAY FOR YOU AND YOUR FAMILIES. LOVE, TRACY

If Only
for a Moment

If only for a moment,

I want to hold you tight,

I want to see your pretty face,

Treasure your very sight!


If only for a moment,

I wish to see you play,

Smile, laugh and run,

On a beautiful Spring day.


If only for a moment,

I will watch you as you sleep,

Eat a sugar cookie,

Or just play hide and seek.


If only for a moment,

I want to hear you sing,

See you learn to ride a bike,

Or soar high in a swing.


If only for a moment,

Let's do all we can do,

Cause here now and forever,

My sweet baby, I LOVE YOU!


Written for Katia by Tracy
Solomon (Mommy) * April 6, 2003


 


Mommy Makes it Better


The times you have a boo boo

On your arm or leg or toe,

Mommy makes it better,

And off to play you go.


If someone takes your toy

Or gives you a mean look.

Mommy makes it better,

Reading a story from a book.


When you go off to the doctor

And something has to hurt,

Mommy makes it better,

by calling you her "SQUIRT".


As you roll off of the sofa

And fall onto the floor

Mommy makes it better,

By kissing what is sore.


If Mommy has to go bye bye,

And she tells you that you can't,

Mommy makes it better,

By putting "Kissies" on your hand.


Now Mommy has a question,

If there's cancer in your blood,

Can Mommy make it better

With her kisses and her love?


Written for Katia by Tracy Solomon (Mommy) * April 6, 2003




Sunday, April 6, 2003 1:48 PM CDT

MINI ADD-ON, MONDAY APRIL 7, 4AM
Katia is doing pretty well right now. The mineral oil each day is really helping (thank you Dr. McMelan!) and she is sleeping well. Of course she is always eating well. I really try to have fun with Katia each and every day and spend good quality time with her. She has really opened my eyes to the important of this. Katia is a precious gift to me. She makes me so happy and she is funny and loving. Last night as we went to sleep, she jumped up all of the sudden (kinda scared me) and gave me a big hug and kiss and told me she loved me. Then she did the sign (sign language) for "I love you". I really believe Katia to be so genuine :) She is such a little sweety and I want her to ALWAYS be happy. Also, make a trip by Jalen's
page. He is a little buddy of ours with AML also and Barney came to see him this week. He has been in a lot of pain and I know his mom would love to have you drop by the page :)

ENJOY THE POEMS (I WROTE THEM FOR MY SWEET KATIA YESTERDAY - I HAVEN'T WRITTEN A POEM SINCE THE DAY SHE WAS DIAGNOSED WHICH IS WRITTEN ABOVE ON THIS PAGE)

If Only
for a Moment

If only for a moment,

I want to hold you tight,

I want to see your pretty face,

Treasure your very sight!


If only for a moment,

I wish to see you play,

Smile, laugh and run,

On a beautiful Spring day.


If only for a moment,

I will watch you as you sleep,

Eat a sugar cookie,

Or just play hide and seek.


If only for a moment,

I want to hear you sing,

See you learn to ride a bike,

Or soar high in a swing.


If only for a moment,

Let's do all we can do,

Cause here now and forever,

My sweet baby, I LOVE YOU!


Written for Katia by Tracy Solomon (Mommy) * April 6, 2003


 


Mommy Makes
it Better


The times you have a boo boo

On your arm or leg or toe,

Mommy makes it better,

And off to play you go.


If someone takes your toy

Or gives you a mean look.

Mommy makes it better,

Reading a story from a book.


When you go off to the doctor

And something has to hurt,

Mommy makes it better,

by calling you her "SQUIRT".


As you roll off of the sofa

And fall onto the floor

Mommy makes it better,

By kissing what is sore.


If Mommy has to go bye bye,

And she tells you that you can't,

Mommy makes it better,

By putting "Kissies" on your hand.


Now Mommy has a question,

If there's cancer in your blood,

Can Mommy make it better

With her kisses and her love?


Written for Katia by Tracy Solomon (Mommy) * April 6, 2003






Saturday, April 5, 2003 11:06 AM CST

HIYA!! Well as you can see, Katia and I had some fun yesterday baking yummy cookies for dinner (we didn't wait for dinner to eat some!)
She has been feeling pretty good since yesterday afternoon. She has had 3 bowel movements and the pain has lessened. I really think the mineral oil is helping. I am putting her potty away for a few months and then we will retry it once we get all the pain behind us for a few months.
We have heard nothing about her results so right now I am assuming the biopsy results are good. They were done on April 1st so I figure the results must be in.
I will call Monday to make sure.
Tatiana finished her antibiotic last night so we will see if the pain comes back or stays away. I pray it just stays away and the antibiotic cleared up the problem even if it wasn't a UTI.
Please pray for Colby. He has recently relapsed and the family needs your prayers as they go through this yet again. Prayers definitely do help in many ways!
Also, remember our soldiers everyday in your prayers. They are away from their families and in the middle of a huge war. There are many things that do go on that we never hear about (the media doesn't get hold of EVERYTHING) and their lives will be forever changed by this. They have family members left behind that need our prayers too. When Myron was in the gulf I tried best to just stay busy and try not to worry too much. Sharayah was only 2 years old and I wanted her to be happy and for us to stay very positive. We lived in Germany and we had just arrived there about a month before Myron left. I became very involved with the military there and helping with communications between the military base and the German population in my area. I was a "mayor" of sorts. I lived in the German community, not in the military housing area so it was a huge learning experience. I absolutely loved Germany and met many nice people who got me through a terrible time. Myron returned home safely and now, for the first time, we are able to watch this carried out on TV. I didn't have CNN or any American channels where I lived. I only had radio broadcast which were given a few times a day. I knew more than the average military wife there because of my involvement with the military leaders but still, nothing like this! This is overwhelming at times for even me.
If you haven't had a chance to stop by and listen to America Stands Strong Song please take the time to do so. If you have a chance to leave a message in the guestbook of what you thought of the song, that would be great. Myron wrote this song the day after the terrorist attacks in Sept. 2001. We really have not pursued doing anything with this song but we really want to share it with people. Like "Lady in Red", we have given away a lot of copies of this song. I am going to put a picture of the album cover on the "America Stands Strong" site so you can see what it looks like.
I try to share pictures and songs with people on Carringbridge for a few reasons. The main one being to give people a break from just routine day to day life. I like to have something that will make people feel better or bring a smile to their face. This America song, I hope will bring each of us a since of pride and strength for our troops and our country. If you would like to download the song, send me an email and I will send it to you in the form of an email attachment.
Well Katia is in the middle of trying to have a bowel movement so I will go.
Thank you so much for stopping by and checking on her and our family and enjoy your weekend. May God Bless everyone. Love, Tracy


Thursday, April 3, 2003 12:28 AM CST

WE ARE HOME! THE ONLY THING DONE TODAY WAS THE ULTRASOUND OF HER ABDOMEN WHICH LOOKS FINE. THAT WAS DONE BECAUSE OF ALL THE PAIN SHE HAVING URINATING AND HAVING BOWEL MOVEMENTS. SHE THEN WENT TO GO SEE A GASTRO DOCTOR AND HE SAYS SHE DOES HAVE A FEW LEFT OVER SORES THAT ARE PROBABLY GETTING IRRITATED SO SHE CAN GO BACK ON HER LAXATIVES (OR MINERAL OIL - WHAT I HAD STARTED DOING) UNTIL SHE IS GOING ONCE OR TWICE A DAY (BOWEL MOVEMENT) AND THEN KEEP HER ON THAT FOR QUITE A WHILE. MAYBE ONCE SHE GOES WITHOUT PAIN FOR QUITE SOME TIME, SHE WON'T TRY TO HOLD IT. I LIKE THAT DOCTOR. WE HAVE SEEN HIM INPATIENT BEFORE WHEN SHE HAD C-DIF. ASIDE FROM THAT, THE BIOPSY RESULTS AREN'T BACK YET BUT I AM ALREADY FEELING BETTER ABOUT THOSE THAT THEY SHOULD BE FINE. WHAT ELSE? LEG PAIN? NO IDEA BUT TO KEEP AN EYE ON THAT.
OKAY, ABOUT TATIANA, HER TESTS CAME BACK NEGATIVE (AGAIN) FOR A UTI SO WE ARE TO CONTINUE THE AUGMENTIN THROUGH SATURDAY AND IF THE PAIN COMES BACK LOOK FOR ANOTHER CAUSE. SHE IS JUST REALLY SHOWING ALL THE SIGNS FOR A UTI BUT TWICE THE TEST HAS SHOWN NO UTI.
ME, I AM FEELING BETTER RIGHT NOW. I DO NEED TO EAT SOMETHING!!!!!! I SO MUCH APPRECIATE PRAYERS. ON THE RIDE OVER TO ST. PETE, KATIA AND I WERE LISTENING TO DOLLY PARTON REALLY LOUD ON THE RADIO JUST HAVING A GOOD FUN TIME AND I WAS AMAZED HOW CALM THAT GOT ME AND BY THE TIME WE GOT TO THE DOCTOR I WAS READY TO DEAL WITH BEING THERE.
I GUESS WE SHOULD FIND OUT BIOPSY RESULTS TOMORROW? MAYBE? THANK YOU SO MUCH, FRIENDS! :)
Please take a chance to listen to this uplifing song about our country :)
America Stands Strong Song
LOVE, TRACY


Tuesday, April 1, 2003 2:36 PM CST

UPDATE APRIL 3 @ 6AM
FOR SOME REASON I AM JUST BEYOND NERVOUS TODAY. PLEASE PRAY THAT I MAKE IT THERE SAFELY AND ALL GOES GOOD AND WELL. I AM NOT SURE IF I WILL FIND OUT ANY RESULTS TODAY BUT I WILL POST AS SOON AS I GET HOME :) LOVE, TRACY

Okay, well here goes. Katia had her appointment today. They seemed concern about all she has gone through so there was a bone marrow biopsy (results Thursday or Friday), leg X-ray (that looked good) and she will have an ultrasound of her pelvis and abdomen on Thursday morning. So far no answers but at least we are looking. The preliminary of the bone marrow biopsy under the microscope looked good but they sent it to lab. Please pray that all of this comes back good. Thank you so much for signing the guestbook with your support. THAT SO MUCH HELPS ME!!!! Love,Tracy

Be sure to check out the America Stands Strong Song Katia's Daddy wrote :)


Monday, March 31, 2003 7:51 PM CST

Okay for those of you who thought we had an appointment today, I feel like an idiot. I knew it was the 1st but I thought today was the 1st. I figured that out around midnight last night. Aside from that, I am so stressed out right now!! Katia now has a red red rash all over her lower back, butt, stomach, and back of her neck. It just popped up out of nowhere. She says it doesn't itch. I haven't fed her anything new, washed her or her clothes in anything new. I just can't imagine what it is. Now, that means that her CBC tomorrow will probably not be a true read because this will cause the numbers to be wrong. I just want to know how my baby is doing. I am so nervous right now of relapse because so many problems going on with her and she is so irritable BUT on a good side, she did poop early this afternoon and is not in so much pain tonight. She had a good afternoon and she hasn't slept so much or ran for refuge on our bed in our room. She is being herself right now. She has a little of the rash under her eyes on the picture on her webpage front. It isn't too distinct but the same type of rash. Flat and red like spray paint almost, not petichae. Why didn't I become a doctor? I had the brains and patience but now ... Oh, what is the answer? Thank you for checking on Katia and me! I really do check this page often and read guestbook entries and it really does make me feel better no matter how rough things are just knowing people out there feel for us. I love y'all! Love, Tracy


Friday, March 28, 2003 4:31 PM CST

UPDATE MARCH 31, 2003
TOMORROW (APRIL 1ST) IS KATIA'S APPOINTMENT. NOT TODAY. I KEPT THINKING IT WAS ON MONDAY APRIL 1ST BUT IT IS TOMORROW. I FEEL LIKE TAKING HER TODAY BUT I WILL WAIT TILL TOMORROW. POOR LITTLE BABY :( I HATE TO SEE HER HURTING. SHE PASSED A LOT OF URINE LAST NIGHT!!!! I MEAN A LOT!!! I CHANGED HER DIAPER AROUND 12:30 AM AND AT 6:AM, THE DIAPER, HER AND THE BED WAS SOAKED EVEN THROUGH THE EXTRA PAD ON THE BED. I DON'T KNOW IF THAT HAS ANYTHING TO DO WITH ANY OF THIS. BUT I WILL UPDATE TOMORROW. PLEASE CONTINUE TO PRAY FOR LITTLE KATIA. I AM STILL WAITING TO HEAR FROM TATIANA'S LAB TEST TODAY. :)
Please pray for little Katia. She is having a lot of pain with having and trying to have bowel movements. She has peticae all under her eyes from screaming so much. I feel so bad to see her go through pain. Plus, over the last few days her legs have been hurting. She does go to the doctor on Monday so I will mention all of this to them and pray her CBC is normal. The last one showed her WBC at 12.3 so I have been kind of worried about her. Tatiana returned to the doctor yesterday because she is still having pain when she urinates and her right leg keeps falling asleep so they put her back on the antibiotics they had orginally said she didn't need to finish. They are doing another lab on her urine. The last one showed no UTI but they are thinking it was wrong. She has been extremely thirsty and for no reason that she can explain, she is having trouble sleeping. All the girls are really enjoying all the mail they have been receiving so thank you for sending the mail! Katia adores her mail. She gets so HAPPY. Well, I need to post the pictures from the ducks the other day. Love, Tracy
PS New pictures but the duck pictures came out bad (too bad). I really wanted to have some nice pictures since she LOVES to go out there. Next time:)
"If you want something enough make a goal. If you go for it enough, you can get it. Never give up."


Wednesday, March 26, 2003 7:09 PM CST

Well all is well here on the homefront! I am happy to report that. Tatiana is however having a little bit of pain now again but we are keeping up with her. I feel better after a few days of just being worn out! Sharayah is enjoying spare time during spring break. Katia of course keeps us all busy! We went to visit the ducks at the apartment today so I will put pictures up soon of that. I wasn't planning to update today but I had to. I went by and visited a few sites that were new to me. This one, I have to put a link here for everyone to visit. This is Hannah and Madiline's page. They are amazing twins who have been diagnosed with myelodysplasia. I mean it is hard dealing with one child in the hospital and sick all the time but she has 5 year old twins. This mom's way of looking at and dealing with this whole situation just is so (I don't have a word). She finds humor in the worst of situations and really seems to stay so upbeat. As I read her journal history I would feel so bad for some things but then she would say something that made me laugh. My kids probably thing I was losing my mind while I was reading through that. The journal history isn't too long so it is easy to read and I urge you to go by and meet these girls and their mom. Sign her guestbook and just send her some more energy. Thanks. I pray each and every one of you are doing well! Love, Tracy

PS Please also, if you have any materials (paper, stamps, stickers, postage stamps, envelopes, etc.) around your house that you aren't using and can send, the kids have really enjoyed putting cards together lately and want them to continue doing that. It is nice to see they are reaching out to others - on their own! I guess most 14 and 10 year olds haven't seen some of the things they have and they have a special place in their hearts for other children fighting for their lives and just to be happy and healthy. I am proud of my girls!

PO BOX 22375
Tampa, FL 33622


Monday, March 24, 2003 10:37 AM CST

Well the kids are enjoying spring break just playing around the house. Katia loves it when they are home for the day. Tatiana seems to be feeling good, no pain or blood. They have been working on sending out cards to other patients. We have tried to do that since Katia was in the hospital because we saw how much she loved to receive cards but now we are trying to send out about 20 a week. We could definitely use some creative materials to make cards if you have some around your house, different sized envelopes (kids make strange sized and shaped cards) and some stamps. I really want to get up to sending out about 40 a week in the next few weeks. I like my kids to be involved in this as much as possible but in a positive way. I like to see kids reaching out to other kids. I think it will make them more understanding as adults. Well, that is about it for now. Also, if you have an addess of a child (or adult) who is sick and you think would like to receive a card, let me know. I am trying to get to all the Caringbridge children I check on by the beginning or end of next week so if your address is on your page, look for a card soon, hopefully handmade but if it comes from me, I am not the creative type with my hands so it will be store-bought but the same love will go into it. Love, Tracy

Katia's Story on the National Children's Cancer Society Page! Many thanks to the NCCS for their support!



A note of how to stop POP-UP messages from appearing on your screen! These things annoy me and I found this solution on AOL but it works for anyone!

I found this on AOL but I figure anyone who hates seeing those popup messenger messages ALL THE TIME could use this information. I have even tried store-bought programs to stop them and nothing worked but this does and it is soooo simple. Let me know if this helps you. Tracy
Window Messenger Pop-Ups

What are they? Messenger pop-ups are a new form of spam that exploit a feature of the Microsoft Windows operating system intended for use by network administrators. These pop-ups can appear even if you aren't surfing the Web.

Who is at risk? Anyone who has a connection to the Internet and who is using Windows XP/2000/98/95 with this networking feature installed.

How do I stop them?

To disable the "Messenger" (those stupid pop-ups that come onto your screen) service manually...

Follow these simple steps:
1. Click on the Start Button in the Taskbar
2. Open Control Panels
3. Go to Administrative Tools (XP users may need to go to "Performance and Maintenance" first, then Administrative Tools.)
4. Double click on Services
5. Scroll down to Messenger
6. Double click on Messenger
7. Change the Startup type to "disabled"
8. Click Stop to stop the service


DONE



Saturday, March 22, 2003 11:14 AM CST

Well, all is well here on the homefront. Katia is in the kitchen right now begging for food so she is being normal. Quite a bit of bruising lately and her poopy problems but for us we are used to that. Everytime I look at her, I think she just gets prettier!!!! She is such a sweet little baby! Myron has now sprained his wrist at work but he will be back to normal soon. I think his age is catching up with him. He is not the youth he thinks he is. I am doing well, had a few seizures lately but I feel better now. I think I have just been very worn down. I think I shared with y'all that Tatiana has been having some blood in her urine. Well the pediatrician thought it was a UTI but the labs came back that it wasn't so now we have to go repeat the labs at the end of March and go from there. Right now she is off the medicine they had put her on so hopefully the pain she was in doesn't come back. She was in quite a bit of pain when she would use the bathroom and her stomach has been bothering her on and off. I told her pediatrician (who we used to take Katia to) that I don't want to overlook anything. If it doesn't clear right up I want an ultrasound of her belly, bladder and kidney to make sure nothing is going on in there. No dragging feet! Never again. Anyway, if she does start bleeding again (right now everything is orange because of one of the meds she was taking for UTIs) or she gets into pain, I will probably just go to the ER and get everything done at once. ALTHOUGH, I did take Katia to the ER when her eye was so huge and pushed out it looked like she was going to lose it if she sneezed. I told the ER doctor to do a CATSCAN of her head because I felt something was in there (mom instincts). They did the CT and came back and told me it was clear. A few days later, her optomitrist ordered a CT and it showed a large mass right behind her eye. When I picked up the films from the ER taken just a few days before, lo and behold there was a huge mass, OVERLOOKED! A dog walking by could have seen that. It looked like a golf ball was in the eye socket and the other eye looked perfect. How could someone overlook that? I don't even think they looked. But enough grumbling! It just gets me mad again. A little girl McKenzie I have been keeping up with passed away yesterday afternoon. She had 3 cord blood transplants and really fought a GREAT fight. Please visit her page as her parents are really going to miss their little baby, McKenzie. McKenzie's Page
Thank you for keeping Katia and our family in your prayers. Prayers really do bring comfort to us! Love, Tracy


Monday, March 17, 2003 6:30 PM CST

Katia has been doing really well these last few days. Her bowel pain comes and goes but I really feel she is doing better with that. She has a lot of energy and a huge appetite! She is sleeping right now which is not usual but she has done that the last few nights. We have been really busy the last few days and I guess it is wearing her out. Her grandparents are in town for 10 days and she is really loving that! It is always nice to have them busy but now we have more room for them instead of being in our tiny apartment! Thank you for the cards people are sending!!! Katia runs for her mail when daddy comes in from work. By the way, please pray for daddy (Myron) because he hurt his back when we moved and is still having quite a bit of pain but he continues his day to day activity. I am not much help lifting things or moving things. I have very weak arms (since I was a small child) and epilepsy has done tricks to my back so poor Myron has to take the brunt of everything. Hey that is what happens when you have three daughters and no sons! Well please pray for him though. God blessed me with such a wonderful husband. I have to give thanks for him and let people know how wonderful he is because I never want to just take him for granted. He is such a help to me and he always makes me feel good about myself. He keeps me laughing and ... I could just go on and on. He is a GREAT daddy and husband!!!! Thank you God for Myron. He wrote Katia another song so that will be produced and put on this site soon. By soon, I mean "music world" soon so that could be a while. I hope you are enjoying the "Lady in Red." Katia listened to that hour after hour in the hospital. Myron has written a LOT of songs (spanish and English ballads mainly) but has only produced onto a CD about 12 songs and then he has a few SINGLE CDs. He also did a song the day after the Terrorist Attacks in Sept. 2001. It is a beautiful patriotic song called "America Stands Strong". I am very proud of Myron as you can tell and I guess today just stands out because I see all he does for me and now for his parents during their trip. He is also really trying to take the time to work with Florida Blood Services to raise awareness for blood donations and signing up to be a Bone Marrow Donor, not just for Katia but all the people in need. We have been really touched by so many families and their stories.
Please continue to pray for Brittany and check on her updates. She is the little girl I had mentioned with Bone Cancer that had returned. Well she had surgery and I am sure she and her family would love to hear from all of us showing our support.
God bless you and your families. Love, Tracy


Friday, March 14, 2003 4:59 PM CST

Things here are good right now. The kids are out playing on the back porch and Katia is really having a lot of fun!! It is nice to hear her being a typical 3 year old.
I have been praying for my Caringbridge Family a lot lately in hopes that we can all have a good summer ahead of us!
Also, let me know what you think of the song playing on Katia's page. That is the "Lady In Red" song on the CD. We are in the process of producing another song that Myron wrote just for Katia. She loves it! It is a very pretty song.
Well, that is all for now. Let me go out on the backporch with my babies!!! Love, Tracy

PS A BIG THANK YOU TO ALL OF YOU THAT HAVE BEEN SENDING KATIA CARDS AND PRESENTS. SHE IS HAVING A BLAST WITH THEM AND SO IS THE POSTOFFICE!! :)


Tuesday, March 11, 2003 2:37 PM CST

UPDATE MARCH 12TH: HER TESTS ALL CAME BACK CLEAR. HER MARROW AND SPINAL ARE LOOKING GOOD AND KATIA REMAINS IN REMISSION!!!!!! THE CLINIC JUST CALLED. AS FAR AS THE WBC HIGH, THEY SAY MAYBE SHE HAS A VIRUS OR SOMETHING... WE WILL LOOK NEXT MONTH!
Today we had a nice day. We took Katia to St. Pete to the Home Shopping Network and spoke on behalf of Florida Blood Services and the National Marrow Donor Registry. The place was all decorated like Mardi Gras so Katia loved it. The people there were so nice and took the time to listen to all the speakers and watch videos. I pray this makes a difference.
On the other hand Katia has been in a lot of pain with her bowels? I think it is her bowels. I am getting a little worried because she really doesn't like to sit on her bottom or stand up much. Sometimes during the day she seems okay and then all the sudden she gets in a lot of pain. She did have a bowel movement yesterday, not much, but something. I really pray we are not overlooking something but I have taken her in for this pain and they examined her. I figured having the Bone Marrow Aspiration, spinal and CBC if there is some type of infection they would notice that. I am still concerned about why her WBC was 12.3 but if they aren't concerned...
Well, please pray for Brittany Zipter. Her website is
http://www.caringbridge.org/fl/brittanyzipter/index.htm
She is in the hospital and they are having difficult times right now with pain and some tests results. Her cancer MAY be back so please pray for her and her family.
Also please pray for a new friend we made today. His name is John and he was just diagnosed with Leukemia CML. He is on meds but seems to be resistant to the drug so may be needing a Bone Marrow Transplant. I don't have a web address or email for him but please pray for him.
That is all for now. I still want to leave this part at the bottom of my page till I update my journal next. This really touched my heart as I pray the day will never come that I lose any of my children but I do believe that they don't go through fear but find happiness, old relatives (that they may have never known), family pets (I had a great dog for 19 years and I believe SOME-long story- dogs go to Heaven), and that heaven is an awesome and magnificant place. Love, Tracy

Here is something my sister sent me. It is very touching about a mom who has just lost a child and finds a dear letter...

Get out the Kleenex!

Subject: a letter from god

Sally jumped up as soon as she saw the Surgeon come out of the operating room.
She said: "How is my little boy? Is he going to be O.K.? When can I see him?"
The Surgeon said, "I'm sorry, we did all we could."
Sally said, "Why do little children get cancer, doesn't GOD care anymore? GOD,where were you when my son needed you?"

The Surgeon said, "One of the nurses will be out in a few minutes to let you spend time with your son's remains before it's transported to the university."

Sally asked that the nurse stay with her while she said Goodbye to her son.
Sally ran her fingers through his thick red curly hair.
The nurse said, "Would you like a lock of his hair?" Sally nodded yes. The nurse cut a lock of his hair and put it in a plastic bag and handed it to her and
Sally said, "It was Jimmy's idea to give his body to the university for study. He said it might help somebody else," and that is what he wanted. I said, No at first, but Jimmy
said, "Mom I won't be using it after I die, maybe it will help some other little boy to be able to spend one more day with his mother".
Sally said, "my Jimmy had a heart of Gold, always thinking of someone else and always wanting to help others if he could."

Sally walked out of the Children's Hospital for the last time now after spending most of the last 6 months there. She sat the bag with Jimmy's things in it on the seat beside
her in the car. The drive home was hard and it was even harder to go into an empty house. She took the bag to Jimmy's room and started placing the model cars and things
back in his room exactly where he always kept them. She laid down across his bed and cried herself to sleep holding his pillow.

Sally woke up about midnight and laying beside of her on the bed, was letter folded up. She opened the letter, it said:

Dear Mom:
I know your going to miss me, but don't think that I will ever forget you or stop loving you
because I'm not around to say I LOVE YOU. I'll think of you every day Mom and I'll love
you even more each day.

Someday we will see each other again. If you want to adopt a little boy so you won't be so lonely, he can have my room and my old stuff to play with. If you decide to get a girl instead, she probably wouldn't like the same things as us boys do, so you will have to buy her dolls and stuff girls like.
Don't be sad when you think about me, this is really a great place. Grandma and Grandpa met me as soon as I got here and showed me around some, but it will
take a long time to see everything here.

The angels are so friendly, I love to watch them fly. Jesus doesn't look like any of the pictures
I saw of Him, but I knew it was Him as soon as I saw Him. Jesus took me to see GOD! And guess what Mom? I got to sit on GOD'S knee and talk to Him like I was somebody important.
I told GOD that I wanted to write you a letter and tell you Goodbye and everything, but I knew that wasn't allowed. God handed me some paper and His own personal pen to write you this letter with. I think Gabriel is the name of the angel that is going to drop this letter off to you.
God said for me to give you the answer to one of the questions you asked Him about. Where was He when I needed him? God said, "The same place He was when Jesus
was on the cross. He was right there, as He always is with all His children.

Oh, by the way Mom, nobody else can see what is written on this paper but you. To everyone else, it looks like a blank piece of paper. I have to give God His pen back now, he has some more names to write in the Book Of Life.

Tonight I get to sit at the table with Jesus for Supper. I'm sure the food will be great. I almost forgot
to let you know - Now I don't hurt anymore, the cancer is all gone. I'm glad because I couldn't stand that pain anymore and God couldn't stand to see me suffer the pain either, so He sent The Angel of Mercy to get me. The Angel said I was Special Delivery!

Signed with love from: God & Jesus & Me.


Monday, March 10, 2003 4:42 PM CST

Well I went to the doctor today and had some blood tests done so I am waiting for my numbers now too. They want me to see a cardiologist so I need to schedule that appointment. Katia's doctors still haven't called so I am thinking no news is good news but I will probably call tomorrow afternoon. Tomorrow we have an interview in the morning with the Florida Blood Services. I am not sure if it will be aired on TV and I am not really sure what all will be involved but I do know this one will be in English so I will talk and answer questions. Thank you to everyone who has been praying for us. I have a sense of calm that has come over me the last 2 days and it is wonderful. I literally just feel "okay". What a relief from worrying. Please pray for all the children in the hospital or out with low counts or other problems. A lot of kids are in need of prayer right now as well as the doctors. They need our prayers, too.

Here is something my sister sent me. It is very touching about a mom who has just lost a child and finds a dear letter...

Get out the Kleenex!

Subject: a letter from god

Sally jumped up as soon as she saw the Surgeon come out of the operating room.
She said: "How is my little boy? Is he going to be O.K.? When can I see him?"
The Surgeon said, "I'm sorry, we did all we could."
Sally said, "Why do little children get cancer, doesn't GOD care anymore? GOD,where were you when my son needed you?"

The Surgeon said, "One of the nurses will be out in a few minutes to let you spend time with your son's remains before it's transported to the university."

Sally asked that the nurse stay with her while she said Goodbye to her son.
Sally ran her fingers through his thick red curly hair.
The nurse said, "Would you like a lock of his hair?" Sally nodded yes. The nurse cut a lock of his hair and put it in a plastic bag and handed it to her and
Sally said, "It was Jimmy's idea to give his body to the university for study. He said it might help somebody else," and that is what he wanted. I said, No at first, but Jimmy
said, "Mom I won't be using it after I die, maybe it will help some other little boy to be able to spend one more day with his mother".
Sally said, "my Jimmy had a heart of Gold, always thinking of someone else and always wanting to help others if he could."

Sally walked out of the Children's Hospital for the last time now after spending most of the last 6 months there. She sat the bag with Jimmy's things in it on the seat beside
her in the car. The drive home was hard and it was even harder to go into an empty house. She took the bag to Jimmy's room and started placing the model cars and things
back in his room exactly where he always kept them. She laid down across his bed and cried herself to sleep holding his pillow.

Sally woke up about midnight and laying beside of her on the bed, was letter folded up. She opened the letter, it said:

Dear Mom:
I know your going to miss me, but don't think that I will ever forget you or stop loving you
because I'm not around to say I LOVE YOU. I'll think of you every day Mom and I'll love
you even more each day.

Someday we will see each other again. If you want to adopt a little boy so you won't be so lonely, he can have my room and my old stuff to play with. If you decide to get a girl instead, she probably wouldn't like the same things as us boys do, so you will have to buy her dolls and stuff girls like.
Don't be sad when you think about me, this is really a great place. Grandma and Grandpa met me as soon as I got here and showed me around some, but it will
take a long time to see everything here.

The angels are so friendly, I love to watch them fly. Jesus doesn't look like any of the pictures
I saw of Him, but I knew it was Him as soon as I saw Him. Jesus took me to see GOD! And guess what Mom? I got to sit on GOD'S knee and talk to Him like I was somebody important.
I told GOD that I wanted to write you a letter and tell you Goodbye and everything, but I knew that wasn't allowed. God handed me some paper and His own personal pen to write you this letter with. I think Gabriel is the name of the angel that is going to drop this letter off to you.
God said for me to give you the answer to one of the questions you asked Him about. Where was He when I needed him? God said, "The same place He was when Jesus
was on the cross. He was right there, as He always is with all His children.

Oh, by the way Mom, nobody else can see what is written on this paper but you. To everyone else, it looks like a blank piece of paper. I have to give God His pen back now, he has some more names to write in the Book Of Life.

Tonight I get to sit at the table with Jesus for Supper. I'm sure the food will be great. I almost forgot
to let you know - Now I don't hurt anymore, the cancer is all gone. I'm glad because I couldn't stand that pain anymore and God couldn't stand to see me suffer the pain either, so He sent The Angel of Mercy to get me. The Angel said I was Special Delivery!

Signed with love from: God & Jesus & Me.

That was touching :( but :)


Saturday, March 8, 2003 11:42 AM CST

Well, still no word about counts. I will just hold off until Monday and then call to find out or talk to the Doctor. I am going to really try to enjoy the weekend and relax though. Thanks for your words of encouragement and prayers and if you have any ideas, please share them with me.
FOR THOSE WHO DON'T KNOW WHAT I AM TALKING ABOUT, GO TO THE JOURNAL HISTORY.
Love, Tracy


Wednesday, March 5, 2003 2:52 PM CST

MARCH 6TH UPDATE ON CLINIC VISIT...
WE WENT TO THE CLINIC TODAY AND KATIA DID OKAY WITH THE BONE MARROW ASPIRATION (POOR THING SCREAMED AND SCREAMED AND HAS PETICAE ALL OVER HER FACE AND EYES). I DON'T REALLY KNOW THE RESULTS TO THAT YET, BUT THE PRELIMINARY THEY SAID LOOKS "BEAUTIFUL". OKAY, ASIDE FROM THAT. I AM HAPPY ABOUT THAT BUT I AM ALSO CONCERNED BY HER CBC PANEL. THE LAST ONE WAS A MONTH AGO AND THEN TODAYS. COMPARE THE NUMBERS:
FEBRUARY 6, WBC=6.2, HGB=12.9, PLT= 247, ANC = 2000
MARCH 6, WBC=12.3, HGB=13.3, PLT= 285, ANC= 6900. I JUST DON'T KNOW IF IT IS GOOD THAT THE WBC JUMPED UP SO QUICKLY. THIS IS THE HIGHEST IT HAS BEEN SINCE SHE WENT INTO REMISSION IN MAY 2002. SHE IS NOT SICK AT ALL RIGHT NOW. WHEN SHE WENT INTO THE HOSPITAL IN NOVEMBER SHE STOPPED BREATHING, HAD A TEMP OF 107.8 AND AGAIN HAD SOME HORRIBLE BACTERIAS AND AN INFECTED BROVIAC WHICH WAS REMOVED AND THE HIGHEST IT GOT WAS 8.35. MY QUESTION IS DOES IT MAKE ANY SINCE THAT IT IS UP SO HIGH OR DO YOU THINK WE ARE IN FOR BAD NEWS? I AM SO WORRIED RIGHT NOW, I HOPE I SHOULDN'T BE...

Short and sweet. I am just nervous about tomorrow. Not so much the tests results but her having to get the bone marrow aspiration and lumbar puncture.She doesn't have her broviac and she is too difficult to get an IV in so she can't have any pain medicine and I hate to put her through that!!!!! It breaks my heart BUT on top of that I always get nervous for these things. Like I said,
things are going good right now and I want it to stay that way.
PLEASE PRAY FOR ALL OF US!!!!
Love, Tracy


Here are two cute things I wanted to share. The first is a link to the cutest little "dirty-diapered" baby ever!
DIRTY DIAPER BABY SONG AND DANCE


To all those moms (and dads who understand this...)


HERE'S WHAT I DID TODAY


My husband came home today and saw me sitting on the couch, toddler on one knee, and baby nursing on the opposite breast.


I was trying to turn the pages of a book with the hand not attached to the infant, while listening for the sound of the stove buzzer, which would indicate that tonight's pork chops were at the stage between "well-done" and "the dog gets tonight's entree."


My husband looked at me innocently, and asked "So, did you do anything today?" It's a good thing that most of my appendages were otherwise engaged, as I was unable to jump up and throttle him to death. This was probably for the best, as I assume that asking a stupid question is not grounds for murder in this country.


Let me back up a bit, and explain what led me to this point in my life. I was not always bordering on the brink of insanity. On the contrary, a mere four years ago, I had a good job, steady income, and a vehicle that could NOT seat a professional sports team, and me, comfortably. I watched television shows that were not hosted by singing puppets. I went to bed later than nine o'clock at night.


I laughed at those people who drove halfway across the country hauling a tent trailer, three screaming kids, a drooling dog, and called it a holiday. Now I have become one of them! What happened? The stick turned blue.


I have traded in my Victoria's Secrets lingerie for cotton briefs and a firm support nursing bra. Good-bye, Garth Brooks. Hello, Sharon, Lois and Bram. My idea of privacy is getting to use the bathroom without a two-year old banging on the door, and the baby spinning the toilet paper roll from my lap. And I finally understand that the term "Stay-At-Home Mom" does not refer to a parent who no longer works outside the house, but rather to one who never seems to get out the front door.


So here I sit, children in hand, wondering how to answer my beloved husband. DID I DO ANYTHING TODAY? Well, I think I did, although not much seems to have gotten accomplished. I shared breakfast in bed with a handsome young man. Of course, the breakfast consisted of a bowl of oatmeal and leftover cookie crumbs found between the sheets. The handsome young man is about thirty-four inches tall and only gets excited at the sight of purple dinosaurs, toy trucks and French Fries. I got to take a relaxing stroll in the woods.


Of course I had to look for frogs and lizards, and had to stop and smell the dandelions along the way. I successfully washed one load of laundry, moved the load that was in the washer into the dryer, and the dryer load into the basket. The load that was in the basket is now spread out on the bed, awaiting my bedtime decision to actually put the clothes away or merely move them to the top of the dresser. I read two or three classics. Of course, Dickens and Shakespeare cannot take credit for these works, as we have moved on to the works of Seuss and Munsch. I don't think I will be making any trips to the Adult Section of my local library anytime soon.


In between, I dusted, wiped, organized and rearranged. I kissed away the owies and washed away the tears. I scolded, praised, hugged, and tested my patience, all before noon.


DID I DO ANYTHING TODAY? You betcha! I will now understand what people mean when they say that parenthood is the hardest job they will ever have. In my LBD (life before diapers) I was able to teach young minds how to divide fractions and write complex sentences, but I am unable to teach a strong willed two-year-old how to use the toilet.


I was once able to navigate urban streets while talking on the car phone and looking for a decent radio station, but now I can't get the wheels on my stroller to all go in the same direction. I've graduated from a university, written newspaper articles, and won awards, but can't figure out how to get carrot stains out of the carpet.


I used to debate with my friends about politics, but now we discuss the merits of cloth versus disposables. And when did I stop talking in sentences that had more than five words?


So, in response to my husband's inquiry, yes, I did do something today. In fact, I am one step closer to one of life's greatest accomplishments. No, I did not cure AIDS or forge World Peace, but I did hold a miracle in my arms. Two, in fact. My children are my great accomplishment, and the opportunity to raise them is my greatest challenge. I don't know if my children will grow up to be great leaders or world-class brain surgeons. Frankly, I don't care, as long as they grow up to be good people. They are my greatest joys, even though I sometimes cry myself to sleep at night in frustration.

The point is, that today I got to watch my children take another step on the great journey of Life, and I even got to point out some of the sites along the way. As challenging as parenthood is, it is also equally rewarding, because we are using all our wisdom, our talent and skills to help forge a new person. It is this person, these people, who, in turn, will use their gifts to create.


So every nursery rhyme I recite, every swing I push, every little hand I hold is SOMETHING! And I did it today.


I know I haven't had the jokes for a week or so but I have been really preoccupied BUT that is the reason I WANT the jokes and stuff because all of us are preoccupied a lot of the time and need a break in the day so I will get back to it. Love, Tracy


PS Please pray for all of our families and especially for the families who don't have something as AWESOME as Caringbridge to post their thoughts and updates. Caringbridge has been great for me. You see, I am not one to go to meetings or programs really but this is better than that to me. It is something I can do at my own time and in a way I feel very comfortable!
Thank you for helping me through this time. Love, Tracy



 



Wednesday, March 5, 2003 10:19 AM CST

Short and sweet. I am just nervous about tomorrow. Not so much the tests results but her having to get the bone marrow aspiration and lumbar puncture. She doesn't have her broviac and she is too difficult to get an IV in so she can't have any pain medicine and I hate to put her through that!!!!! It breaks my heart BUT on top of that I always get nervous for these things. Like I said, things are going good right now and I want it to stay that way. PLEASE PRAY FOR ALL OF US!!!! Love, Tracy


Friday, February 28, 2003 8:55 AM CST

Katia's appointment went well yesterday (I really thought I updated this page last night) but they really didn't do much. They felt around her stomach and listened to her and couldn't come up with why she would be having the pain she is having BUT last night, no pain all evening! So...
Anyway, next Thursday she goes in for her Bone Marrow Biopsy and Spinal plus the CBC so although I get very nervous leading up to those, I am always in a very happy mood after they are done and we get the all clear!!! The further we get away from her last chemo treatment (September 2002) the more nervous I seem to get. Right now it seems things are going so well with us and I am just afraid of a big blow! I know that sounds bad but that is just the way things seem to happen.
...when you least expect it...
So I just decide to expect it all the time and maybe nothing bad will happen.
Katia is such a sweet little baby and so loving and outgoing and a light in our house! I mean she is soooooo loved by her parents, siblings, grandparents, aunts and uncles, cousins, etc. Last year was such a hard year for us and full of so many ups and downs and I just want this year to be a good year. I want her to continue learning to talk, finish potty training (which is going nowhere right now - she hates the potty because of the pain she was having), learn to draw and color, ride a tricycle, etc.
I just want things to go out as close to "normal" as possible.
She has been through so much but she has the best attitude out of all of us. I try to stay positive and not react to big to bad news but I really think I would lose it if bad news comes up right now.
Well I have babbled enough.
One thing we really want to do is get Katia a swingset for the backyard. We wanted to get it for her birthday last month but we weren't able to. I really want to see her playing and laughing outside. This house has a very nice sized backyard. Sharayah and Tatiana really want Katia to have one too (remember they are 14 and 10) if you know what I mean. Whatever Katia gets, they LOVE too! We are looking around but they definitely cost more than I thought for just the basic ones. I don't want something that will fall apart and I want Sharayah and Tatiana to be able to use it without passing weight limits, etc.
They are all such GOOD girls and great sisters together!
Well, Katia wants her oatmeal. It is what follows her cereal. She eats all day but she isn't gaining too much weight so I guess that is okay. She LOVES to eat. Love, Tracy


Tuesday, February 25, 2003 7:37 PM CST

WOW over 10,000 visitors to Katia's website!!!!!! Oh my gosh! Thanks to some links to her website and word of mouth a lot of people have come in to check on little Katia and her progress. I just want to say thank you and how special it is to sign on and see that people are hearing about my little baby and leaving messages of support, information and updates on their own children.
THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
I just can't say it enough! Please if you haven't already go visit your local blood bank and become a registered marrow donor. Love, Tracy

FEBRUARY 26, 2002
JUST AN UPDATE QUICKLY. KATIA IS HAVING A LOT OF PAIN RIGHT NOW AND I AM NOT TOO SURE WHY. IT SEEMS TO BE SOMETHING DEALING WITH GOING POTTY BUT SHE HAS AN APPOINTMENT NOW TO GO IN TOMORROW. HER LITTLE FACE HAS PETICHAE ALL UP UNDER HER EYES. PLEASE PRAY THAT ALL IS WELL WITH HER AND SHE WILL FEEL BETTER SOON. I HATE TO HEAR HER SCREAMING IN PAIN. THAT REALLY BREAKS MY HEART. LOVE, TRACY


Sunday, February 23, 2003 9:33 AM CST

Well the news around here is about the same. Last night however we had a LOT of rain and what we didn't know was our gutters on the house were basically set up to FLOOD our back porch which we just carpeted and furnished!! The porch is 375 square feet and I would say over half of it was 2 inches deep in water and just kept pouring in. We have a shop vac but that turned into a joke so we got down and did it the old fashion way (bailing water). What a mess!!! Today is supposed to be a dry sunny day so hopefully the carpet will finish drying out. We set up the gutters differently so hopefully NEXT TIME will be better. Aside from all of that, potty training is going along slowly but surely. Thank God for pullups or I would be cleaning up pee all day. I am more interested in just getting the poopies in the toilet but it would be nice to get it all out of the way and get away from diapers completely. (WOW I CANNOT TYPE GOOD TODAY)
Anyway, I found some more jokes. I like to read jokes on the web but clean jokes and they are hard to find so that is why I am posting them here. EVERYONE needs a laugh and I really needed one this morning after our flood experience last night. I also forgot to add that we were without electricity for about an hour right after we finished bailing water. I guess someone hit a pole right here so.... The evening will not be forgotten for a long long time. Well enjoy the jokes.
Please take a moment before you read ahead and say a prayer for our fellow cancer patients, play for the researches that they will move ahead and for those children in the hospital right now or at home going through difficult times. I REALLY appreciate the fact that we are home and able to do NORMAL things like porch floods! Praise God for that. Love, Tracy

The Boss

One day a man goes to a pet shop to buy
a parrot. The assistant takes the man to the parrot section and asks the man
to choose one. The man asks, ''How much is the yellow one?''

The assistant says, ''$2000.'' The man is shocked and asks the assistant why
it's so expensive. The assistant explains, ''This parrot is a very special one.
He knows typewriting and can type really fast.''


''What about the green one?'' the man asks.


The assistant says, ''He costs $5000 because
he knows typewriting and can answer incoming telephone calls and takes notes.''


''What about the red one?'' the man asks.


The assistant says, ''That one's $10,000.''


The man says, ''What does HE do?''


The assistant says, ''I don't know, but
the other two call him boss.''



The Call of Nature


One fine day in the middle of class at school,
a girl raised her asking to be excused: “Teacher, can I answer the call
of nature?” Knowing what the kid wanted, the teacher said okay. Immediately,
the girl ran to the toilet. But, within a minute, she was back. Another girl
was shocked by how she could actually take care of business so quickly, and
asked how she managed to do it so fact.The girl responded, “It was a prank
call.”


The Hospital Visit


Once upon a time, two little boys, Sammy
and Tim, were sharing a room in the hospital. As they were getting to know each
other a little bit, Sammy eventually asked Tim, “Hey Tim, what're you in
for?”

“I'm getting my tonsils out -- I'm a little worried,” said Tim.


“Oh don't worry about it. I had my
tonsils out and it was a blast! I got to eat all the ice cream and jello I wanted
for two weeks!”


“Oh yeah?'' replied Tim. “That's
not half-bad. Hey, Sammy, how about you? What're you here for?”


“I'm getting a circumcision, whatever
that is,” Sammy answered.


“Oh my god, circumcision? I got one
of those when I was a baby and I couldn't walk for two years!”



The Leprechaun Of The Bathroom

A little boy went to the bathroom at school,
but when he went to wipe his bum, there was no toilet paper so he used his hands.
When he got back to class, his teacher asked him what he had in his hands.

"A little leprechaun and if I open my hand he'll get scared away,"
the boy said. He was then sent to the principal's office and the principal asked
him what he had in his hands.

"A little leprechaun and if I open my hands he'll get scared away."
He was sent home and his mom asked him what he had in his hands.

"A little leprechaun and if I open my hands he'll get scared away."
He was sent to his room and his dad came in and asked him what he had in his
hands.

"A little leprechaun and if I open my hands he'll get scared away."
Then his Dad got really mad and yelled, "Open your hands!"

"Look, Dad. You scared the crap out of him."


The Mystery of Childbirth


A boy was assigned a paper on childbirth
and asked his parents, "How was I born?"

"Well honey..." said the slightly prudish parent, "the stork
brought you to us."


"Oh," said the boy. "Well,
how did you and daddy get born?" he asked.


"Oh, the stork brought us too."


"Well how were grandpa and grandma
born?" he persisted.


"Well darling, the stork brought them
too!" said the parent, by now starting to squirm a little in the Lazy Boy
recliner.


Several days later, the boy handed in his
paper to the teacher who read with confusion the opening sentence:

"This report has been very difficult to write due to the fact that there
hasn't been a natural childbirth in my family for three generations."




The Teacher's Gift


It was the last day of school, and all the
students were bringing presents for their teacher. A florist's daughter came
up and gave her teacher a box. The teacher said, '“'ll bet these are flowers!”
The girl replied, “How did you know? “Just a lucky guess,” she
said.

Next, a boy whose family owned a candy store came up and gave the teacher a
box. She said that she knew it was candy. When the boy asked how she knew, she
again said, “Just a lucky guess.'”

Finally, a boy whose father owned a liquor store came up and gave the teacher
a box, but one of the box's corners was damp from a leak. The teacher asked
the boy if it was wine. The boy said, “No.” She touched the leak and
put it to her tongue and asked if it was champagne. The boy again said no. Finally,
she gave up and asked him what was in the box. He said happily, “A puppy!”





Thursday, February 20, 2003 10:00 AM CST

KATIA WENT POO POO IN THE POTTY!!!! THAT IS OUR BIG NEWS IN OUR FAMILY!!! Katia has had a LOT of problems with her bowels and having a lot of pain. She still has a lot of pain and chemo has been done since September. She takes a lot of laxatives but is now weaning off of those and except for the amount of pain she goes through, I think she is getting better. Anyway, we decided to finally try potty training but she has really been scared to do her poopies in the potty. TODAY SHE DID!!!! She has only peed in the potty once but hey, it is a start!! We are happy. I feel like it is her birthday!! My little baby is growing up. Aside from that, I am leaving this little message and the jokes on the page for now but I just wanted to update my journal with this milestone in Katia's life. Love, Tracy

Maybe you will copy and send this to some friends


*****************************************************************


Where is God? Food for Thought




In light of the many perversions and
jokes we send to one another for a laugh, this is a little different: This is
not intended to be a joke, it's not funny, it's intended to get you thinking.


Billy Graham's daughter was interviewed
on the Early Show and Jane Clayson asked her "How could God let something
like this happen?" (regarding the attacks on Sept. 11).
Anne
Graham gave an extremely profound and insightful response. She said "I
believe God is deeply saddened by this, just as we are, but for years we've
been telling God to get out of our schools, to get out of our government and
to get out of our lives.
And being the gentleman
He is, I believe He has calmly backed out. How can we expect God to give us
His blessing and His protection if we demand He leave us alone?"


In light of recent events ... terrorist
attacks, school shootings, etc. I think it started when Madeleine Murray O'Hare
(she was murdered, her body found recently) complained she didn't want prayer
in our schools, and we said OK.


Then someone said you better not read
the Bible in school ... the Bible says thou shalt not kill, thou shalt not steal,
and love your neighbor as yourself. And we said OK.


Then Dr. Benjamin Spock said we shouldn't
spank our children when they misbehave because their little personalities would
be warped and we might damage their self-esteem (Dr. Spock's son committed suicide).
We said an expert should know what he's talking about. And we said OK.


Then someone said teachers and principals
better not discipline our children when they misbehave. The school administrators
said no faculty member in this school better touch a student when they misbehave
because we don't want any bad publicity, and we surely don't want to be sued
(there's a big difference between disciplining, touching, beating, smacking,
humiliating, kicking, etc.). And we said OK.


Then someone said, let's let our daughters
have abortions if they want, and they won't even have to tell their parents.
And we said OK.


Then some wise school board member said,
since boys will be boys and they're going to do it anyway, let's give our sons
all the condoms they want so they can have all the fun they desire, and we won't
have to tell their parents they got them at school. And we said OK.


Then some of our top elected officials
said it doesn't matter what we do in private as long as we do our jobs. Agreeing
with them, we said it doesn't matter to me what anyone, including the President,
does in private as long as I have a job and the economy is good.


Then someone said let's print magazines
with pictures of nude women and call it wholesome, down-to-earth appreciation
for the beauty of the female body. And we said OK.


And then someone else took that appreciation
a step further and published pictures of nude children and then further again
by making them available on the Internet. And we said OK, they're entitled
to free speech.


Then the entertainment industry said,
let's make TV shows and movies that promote profanity, violence, and illicit
sex. Let's record music that encourages rape, drugs, murder, suicide, and satanic
themes. And we said it's just entertainment, it has no adverse effect, nobody
takes it seriously anyway, so go right ahead.


Now we're asking ourselves why our children
have no conscience, why they don't know right from wrong, and why it doesn't
bother them to kill strangers, their classmates, and themselves.


Probably, if we think about it long and
hard enough, we can figure it out. I think it has a great deal to do with "WE
REAP WHAT WE SOW
."


Funny how simple it is for people to
trash God and then wonder why the world's going to hell. Funny how we believe
what the newspapers say, but question what the Bible says.


Funny how you can send 'jokes' through
e-mail and they spread like wildfire but when you start sending messages regarding
the Lord, people think twice about sharing.


Funny how lewd, crude, vulgar and obscene
articles pass freely through cyberspace, but public discussion of God is suppressed
in the school and workplace.


Are you laughing?


Funny how when you forward this message,
you will not send it to many on your address list because you're not sure what
they believe, or what they WILL think of you for sending it. Funny how we can
be more worried about what other people think of us than what God thinks of
us.


Pass it on if you think it has merit.
If not then just discard it ... no one will know you did. But, if you discard
this thought process, don't sit back and complain about what bad shape the world
is in!



Rejected Valentine Card Romantic Lines

I thought that I could love no other

Until, that is, I met your brother...




Roses are red, violets are blue,

Sugar is sweet, and so are you.

But the roses are wilting, the violets are dead,

the sugar bowl's empty and so is your head...




Of loving beauty you float with grace

If only you could hide your face...




Kind, intelligent, loving and hot.

This describes everything you are not...




I want to feel your sweet embrace

But don't take that paper bag off of your face...




I love your smile, your face, and your eyes.

Wow, I'm good at telling lies!




My darling, my lover, my beautiful wife:

Marrying you really messed up my life...




I see your face when I am dreaming.

That's why I always wake up screaming...




My love, you take my breath away.

What have you stepped in to smell this way?




What inspired this amorous rhyme?

Two parts vodka, one part lime...




Divorce


An old man in Phoenix calls his son in New York and says, "I hate to ruin
your day, But I have to tell you that your mother and I are divorcing; forty-five
years of misery is enough."




"Pop, what are you talking about!" the son screams.




"We can't stand the sight of each other any longer, " the old man
said. "We're sick and tired of each other, and I'm sick of talking about
this, so you call your sister in Chicago and tell her." And he hangs up.




Frantic, the son calls his sister, who explodes on the phone, "They're
getting a divorce? I don't think do so!" she shouts. "I'll take care
of this." She calls Phoenix immediately, and screams at the old man, "You
are NOT getting divorced! Don't do a single thing until we get there. DO YOU
HEAR ME?" And she hangs up.




The old man hangs up his phone and turns to his wife. "Okay," he says,
"It worked. They're coming for Thanksgiving and paying their own way. Now
we have to think up something for Christmas!"




Making Babies


A second grader came home from school and said to her mother, "Mom, Guess
what? We learned how to make babies today."




The mother, more than a little surprised, asked fearfully, "That's interesting.
How do you make babies?"




"It's simple," replied the girl. "You just change 'y' to 'i'
and add 'es'."




Great Tea


One day a young mother was sick in bed at home with her young daughter. The
daughter was about four, and always wanting to be of help to her mommy. So while
her mother was sick, the young girl got some magazine for her mom, fluffed all
the pillows for her, and even made her a cup of tea!




Her mother was very pleased with the tea and asked her daughter how she had
ever learned to make tea on her own. Her daughter proudly told her mom, "well
mommy, I've seen you do it LOADS of times. Only this time I couldn't find the
strainer, so I used the fly swatter instead."




"YOU WHAT!?!?!" her mother cried.




"Oh don't worry mommy, I didn't use the new fly swatter, I used the old
one."




Limping Patient


While making rounds, a doctor points out an X-ray to a group of medical students.
"As you can see," she says, "the patient limps because his left
fibula and tibia are radically arched. Michael, what would you do in a case
like this?"




"Well," ponders the student, "I suppose I'd limp too."


Dirty Toothbrush


My son Zachary, 4, came screaming out of the bathroom to tell me he'd dropped
his toothbrush in the toilet. So I fished it out and threw it in the garbage.
Zachary stood there thinking for a moment, then ran to my bathroom and came
out with my toothbrush.




He held it up and said with a charming little smile, "We better throw this
one out too then, 'cause it fell in the toilet a few days ago."


Christmas Break


Christmas Break was over and the teacher was asking the class about their vacations.
She turned to little Johnny and asked what he did over the break.




"We visited my grandmother in Punxsutawney, Pennsylvania," he replied.




"That sounds like an excellent vocabulary word," the teacher said.
"Can you tell the class how you spell that?"




Little Johnny thought about it and said, "You know, come to think of it,
we went to Ohio."


Lamaze Class


A couple just started their Lamaze class, and they were given an activity requiring
the husband to wear a bag of sand - to give him an idea of what it feels like
to be pregnant. The husband stood up and shrugged saying, "This doesn't
feel so bad."




The instructor then dropped a pen and asked the husband to pick it up.




"You want me to pick up the pen as if I were pregnant, the way my wife
would do it?" the husband asked.




"Exactly," replied the instructor.




To the delight of the other husbands, he turned to his wife and said, "Honey,
pick up that pen for me."




Tuesday, February 18, 2003 7:44 AM CST

Just a quick update. Not much is new here. Sharayah,
the oldest has been feeling under the weather lately. Please say a prayer for
her. Katia is doing really well right now. We have finished our back porch so
we all enjoy that a lot. Here is something someone emailed to me. I had planned
to update jokes today but I wanted to put this instead because I really like the
message. Love, Tracy


Maybe you will copy and send this to some friends


*****************************************************************


Where is God? Food for Thought




In light of the many perversions and
jokes we send to one another for a laugh, this is a little different: This is
not intended to be a joke, it's not funny, it's intended to get you thinking.


Billy Graham's daughter was interviewed
on the Early Show and Jane Clayson asked her "How could God let something
like this happen?" (regarding the attacks on Sept. 11).
Anne
Graham gave an extremely profound and insightful response. She said "I
believe God is deeply saddened by this, just as we are, but for years we've
been telling God to get out of our schools, to get out of our government and
to get out of our lives.
And being the gentleman
He is, I believe He has calmly backed out. How can we expect God to give us
His blessing and His protection if we demand He leave us alone?"


In light of recent events ... terrorist
attacks, school shootings, etc. I think it started when Madeleine Murray O'Hare
(she was murdered, her body found recently) complained she didn't want prayer
in our schools, and we said OK.


Then someone said you better not read
the Bible in school ... the Bible says thou shalt not kill, thou shalt not steal,
and love your neighbor as yourself. And we said OK.


Then Dr. Benjamin Spock said we shouldn't
spank our children when they misbehave because their little personalities would
be warped and we might damage their self-esteem (Dr. Spock's son committed suicide).
We said an expert should know what he's talking about. And we said OK.


Then someone said teachers and principals
better not discipline our children when they misbehave. The school administrators
said no faculty member in this school better touch a student when they misbehave
because we don't want any bad publicity, and we surely don't want to be sued
(there's a big difference between disciplining, touching, beating, smacking,
humiliating, kicking, etc.). And we said OK.


Then someone said, let's let our daughters
have abortions if they want, and they won't even have to tell their parents.
And we said OK.


Then some wise school board member said,
since boys will be boys and they're going to do it anyway, let's give our sons
all the condoms they want so they can have all the fun they desire, and we won't
have to tell their parents they got them at school. And we said OK.


Then some of our top elected officials
said it doesn't matter what we do in private as long as we do our jobs. Agreeing
with them, we said it doesn't matter to me what anyone, including the President,
does in private as long as I have a job and the economy is good.


Then someone said let's print magazines
with pictures of nude women and call it wholesome, down-to-earth appreciation
for the beauty of the female body. And we said OK.


And then someone else took that appreciation
a step further and published pictures of nude children and then further again
by making them available on the Internet. And we said OK, they're entitled
to free speech.


Then the entertainment industry said,
let's make TV shows and movies that promote profanity, violence, and illicit
sex. Let's record music that encourages rape, drugs, murder, suicide, and satanic
themes. And we said it's just entertainment, it has no adverse effect, nobody
takes it seriously anyway, so go right ahead.


Now we're asking ourselves why our children
have no conscience, why they don't know right from wrong, and why it doesn't
bother them to kill strangers, their classmates, and themselves.


Probably, if we think about it long and
hard enough, we can figure it out. I think it has a great deal to do with "WE
REAP WHAT WE SOW
."


Funny how simple it is for people to
trash God and then wonder why the world's going to hell. Funny how we believe
what the newspapers say, but question what the Bible says.


Funny how you can send 'jokes' through
e-mail and they spread like wildfire but when you start sending messages regarding
the Lord, people think twice about sharing.


Funny how lewd, crude, vulgar and obscene
articles pass freely through cyberspace, but public discussion of God is suppressed
in the school and workplace.


Are you laughing?


Funny how when you forward this message,
you will not send it to many on your address list because you're not sure what
they believe, or what they WILL think of you for sending it. Funny how we can
be more worried about what other people think of us than what God thinks of
us.


Pass it on if you think it has merit.
If not then just discard it ... no one will know you did. But, if you discard
this thought process, don't sit back and complain about what bad shape the world
is in!



Rejected Valentine Card Romantic Lines

I thought that I could love no other

Until, that is, I met your brother...




Roses are red, violets are blue,

Sugar is sweet, and so are you.

But the roses are wilting, the violets are dead,

the sugar bowl's empty and so is your head...




Of loving beauty you float with grace

If only you could hide your face...




Kind, intelligent, loving and hot.

This describes everything you are not...




I want to feel your sweet embrace

But don't take that paper bag off of your face...




I love your smile, your face, and your eyes.

Wow, I'm good at telling lies!




My darling, my lover, my beautiful wife:

Marrying you really messed up my life...




I see your face when I am dreaming.

That's why I always wake up screaming...




My love, you take my breath away.

What have you stepped in to smell this way?




What inspired this amorous rhyme?

Two parts vodka, one part lime...




Divorce


An old man in Phoenix calls his son in New York and says, "I hate to ruin
your day, But I have to tell you that your mother and I are divorcing; forty-five
years of misery is enough."




"Pop, what are you talking about!" the son screams.




"We can't stand the sight of each other any longer, " the old man
said. "We're sick and tired of each other, and I'm sick of talking about
this, so you call your sister in Chicago and tell her." And he hangs up.




Frantic, the son calls his sister, who explodes on the phone, "They're
getting a divorce? I don't think do so!" she shouts. "I'll take care
of this." She calls Phoenix immediately, and screams at the old man, "You
are NOT getting divorced! Don't do a single thing until we get there. DO YOU
HEAR ME?" And she hangs up.




The old man hangs up his phone and turns to his wife. "Okay," he says,
"It worked. They're coming for Thanksgiving and paying their own way. Now
we have to think up something for Christmas!"




Making Babies


A second grader came home from school and said to her mother, "Mom, Guess
what? We learned how to make babies today."




The mother, more than a little surprised, asked fearfully, "That's interesting.
How do you make babies?"




"It's simple," replied the girl. "You just change 'y' to 'i'
and add 'es'."




Great Tea


One day a young mother was sick in bed at home with her young daughter. The
daughter was about four, and always wanting to be of help to her mommy. So while
her mother was sick, the young girl got some magazine for her mom, fluffed all
the pillows for her, and even made her a cup of tea!




Her mother was very pleased with the tea and asked her daughter how she had
ever learned to make tea on her own. Her daughter proudly told her mom, "well
mommy, I've seen you do it LOADS of times. Only this time I couldn't find the
strainer, so I used the fly swatter instead."




"YOU WHAT!?!?!" her mother cried.




"Oh don't worry mommy, I didn't use the new fly swatter, I used the old
one."




Limping Patient


While making rounds, a doctor points out an X-ray to a group of medical students.
"As you can see," she says, "the patient limps because his left
fibula and tibia are radically arched. Michael, what would you do in a case
like this?"




"Well," ponders the student, "I suppose I'd limp too."


Dirty Toothbrush


My son Zachary, 4, came screaming out of the bathroom to tell me he'd dropped
his toothbrush in the toilet. So I fished it out and threw it in the garbage.
Zachary stood there thinking for a moment, then ran to my bathroom and came
out with my toothbrush.




He held it up and said with a charming little smile, "We better throw this
one out too then, 'cause it fell in the toilet a few days ago."


Christmas Break


Christmas Break was over and the teacher was asking the class about their vacations.
She turned to little Johnny and asked what he did over the break.




"We visited my grandmother in Punxsutawney, Pennsylvania," he replied.




"That sounds like an excellent vocabulary word," the teacher said.
"Can you tell the class how you spell that?"




Little Johnny thought about it and said, "You know, come to think of it,
we went to Ohio."


Lamaze Class


A couple just started their Lamaze class, and they were given an activity requiring
the husband to wear a bag of sand - to give him an idea of what it feels like
to be pregnant. The husband stood up and shrugged saying, "This doesn't
feel so bad."




The instructor then dropped a pen and asked the husband to pick it up.




"You want me to pick up the pen as if I were pregnant, the way my wife
would do it?" the husband asked.




"Exactly," replied the instructor.




To the delight of the other husbands, he turned to his wife and said, "Honey,
pick up that pen for me."




Friday, February 14, 2003 5:34 AM CST

Good Morning! (Yes, it is 5AM and I am awake) Katia is on the news right
now, again, for the next 24 hours with the Florida Blood Services. They are
really trying to bring people in for blood donations and The Marrow Donor Program.
Please say a prayer as you read this that people will be touched by this story
and go in. Many lives could be saved by more people just learning HOW important
it is to participate and also that it is not difficult to join the registry.


Okay...


Sometimes, I just want to go somewhere for a good laugh. Laughing is good
for the soul and not to mention the abs. The other nite, I was watching a comedy
hour on TV and I had to turn it off because I thought I was going to choke laughing!
Myron was actually nervous for me laughing so hard. You know, we get so caught
up in our day to day that when we do finally find something half funny, we burst!
So I thought... I am going to try to bring jokes to my page! Maybe it will help
someone have a good day. Katia loves to laugh! She has this guilty sounding
little laugh... So I have looked around on the Internet and gathered up some
poetry from different areas and I hope you enjoy.


Actual School Excuse
Notes


These are excuse notes from parents (with their original
spelling) collected by schools from all over the country:

1) My son is under a doctor's care and should not take P.E. today. Please execute
him.


2) Please excuse Lisa for being absent. She was sick
and I had her shot.


3) Dear School: Please exscuse John being absent on
Jan. 28, 29,30, 31, 32, and also 33.


4) Please excuse Gloria from Jim today. She is administrating.


5) Please excuse Roland from P.E. for a few days.
Yesterday he fell out of a tree and misplaced his hip.


6) John has been absent because he had two teeth taken
out of his face.


7) Carlos was absent yesterday because he was playing
football. He was hurt in the growing part.


8) Megan could not come to school today because she
has been bothered by very close veins.


9) Chris will not be in school cus he has an acre
in his side.


10) Please excuse Ray Friday from school. He has very
loose vowels.


11) Please excuse Pedro from being absent yesterday.
He had (diahre) (dyrea) (direathe) the runs. [words in ()'s were crossed out.]


12) Please excuse Burma, she has been sick and under
the doctor.


13) Irving was absent yesterday because he missed
his bust.


14) Please excuse Jimmy for being. It was his father's
fault.


15) I kept Billie home because she had to go Christmas
shopping because I don't know what size she wears.


16) Please excuse Jennifer for missing school yesterday.
We forgot to get the Sunday paper off the porch, and when we found it Monday,
we thought it was Sunday.


17) Sally won't be in school a week from Friday. We
have to attend her funeral.


18) My daughter was absent yesterday because she was
tired. She spent a weekend with the Marines.


19) Please excuse Jason for being absent yesterday.
He had a cold and could not breed well.


20) Please excuse Mary for being absent yesterday.
She was in bed with gramps.


21) Maryann was absent December 11-16, because she
had a fever, sore throat, headache and upset stomach. Her sister was also sick,
fever and sore throat, her brother had a low grade fever and ached all over.
I wasn't the best either, sore throat and fever. There must be something going
around, her father even got hot last night.


22) Please excuse little Jimmy for not being in school
yesterday. His father is gone and I could not get him ready because I was in
bed with the doctor.





A lady and her baby...


A lady and her baby get on a bus. The bus driver looks
at the lady, and then her baby, and then screams, "AHHHH! That's the ugliest
child I've ever seen in my life!"

The lady then, totally disgusted, marches up to the back of the bus to sit down.


As she was sitting there absolutely furious, a man
asks, "Are you ok, dear?"


The lady replies, "I'm so angry, that bus driver
just insulted me."


The man says, "You go back up there and give
that bus driver a piece of your mind, and I'll watch your monkey."



A wrinkle in time


A little girl got on her grandpa's lap and said, "Did
God make me?"

"Yes," the grandpa replied.


"Did God make you too?"


"Yes," the grandpa said.


"Well," the little girl said, while running
her fingers down his wrinkles and looking at his thinning hair, "He sure
is doing a better job nowadays!"


Bed Time


One night a father sent his kid to bed. Five minutes
later the boy screamed, ''Dad! Can you get me a glass of water!?!''


''No. You had your chance.''


A minute later the boy screamed ''Dad!! Can you get
me a glass of water?''


''No. You had your chance. Next time you ask I'll
come up there and spank you.''


''Dad! When you come up to spank me can you bring
me a glass or water?''


 


Childhood Of Yore


I want to be a kid again. I want to go back to the
time when:


Decisions were made by going "eeny-meeny-miney-mo."


Mistakes were corrected by simply exclaiming, "do
over!"


"Race issue" meant arguing about who ran
the fastest.


Money issues were handled by whoever was the banker
in Monopoly.


Catching the fireflies could happily occupy an entire
evening.


It wasn't odd to have two or three "best"
friends.


Being old referred to anyone over 20.


The net on a tennis court was the perfect height to
play volleyball and rules didn't matter.


The worst thing you could catch from the opposite
sex was cooties.


It was magic when dad would "remove" his
thumb.


It was unbelievable that dodgeball wasn't an Olympic
event.


Having a weapon in school meant being caught with
a slingshot.


Nobody was prettier than Mom.


Scrapes and bruises were kissed and made better.


It was a big deal to finally be tall enough to ride
the "big people" rides at the amusement park.


Getting a foot of snow was a dream come true.


Abilities were discovered because of a "double-dog-dare."


Saturday morning cartoons weren't 30-minute ads for
action figures.


No shopping trip was complete unless a new toy was
brought home.


"Oly-oly-oxen-free" made perfect sense.


Spinning around, getting dizzy and falling down was
cause for giggles.


The worst embarrassment was being picked last for
a team.


War was a card game.


Water balloons were the ultimate weapon.


Baseball cards in the spokes transformed any bike
into a motorcycle.


Taking drugs meant orange-flavored chewable aspirin.


Ice cream was considered a basic food group.


Daughter's Prayer


A family was having some people to dinner. At the
table, the mother turned to her six-year-old daughter and said, "Dear,
would you like to say the blessing?"

"I wouldn't know what to say," replied the little girl, shyly.


"Just say what you hear Mommy say, sweetie,"
the woman said.


Her daughter took a deep breath, bowed her head, and
solemnly said, "Dear Lord, why the hell did I invite all these people to
dinner!?!"


Well I hope you enjoyed some of those. Let me know
if you think this is a good idea and you like it. It helps me to come to this
page and use it for spreading good cheer and a laugh now and then. When something
is going wrong or I am worried, I use it to tell you that so right now things
are going good and I want to show my appreciation for this. Love, Tracy


 



Tueday, February 11, 2003 11:13 AM CST

Today has been an exciting day. Katia was featured on the news last night and will be again tonight. Time Warner Digital Cable Bay News 9 en espanol which is channel 139. The spot is being sponsored by Florida Blood Services and is asking people to donate blood and register for the Bone Marrow Donor program. I really hope these things we are participating in will make a difference and bring the statistics up on how many people are able to find matches for BMT. Right now the statistics are only 20%!! That was shocking to us. Myron has pretty well made it his mission to speak to as many people as possible about this and make a difference. For those of you who are able to watch, let me know. Love, Tracy
I am leaving these poems below on for a while because I just find them true and some funny so I hope you can enjoy them. :)

I just found these on another site and had to post them because some of them had me in tears laughing and others were just so true! Enjoy :)


*******************


When God Created Mothers





When the Good Lord was creating mothers, He was into his sixth day of overtime
when an angel appeared and said, "You're doing a lot of fiddling around
with this one."

And the Lord said, "Have you read the specifications on this order? She
has to be completely washable, but not plastic. Have 180 moveable parts...all
replaceable. Run on black coffee and leftovers. Have a lap that disappears when
she stands up. A kiss that can cure anything from a broken leg to a disappointed
love affair. And have six pairs of hands."

The angel shook her head slowly and said, "Six pairs of hands? No way!"

"It's not the hands that are causing me problems," said the Lord,
"it's the three pairs of eyes the mothers have to have."

"That's on the standard model?" asked the angel.

The Lord nodded. "One pair that sees through closed doors when she asks,
'What are the kids doing in there?' When she already knows. Another here in
the back of her head that sees what she shouldn't, but what she has to know,
and of course the ones here in the front that can look at a child when he goofs
up and says, 'I understand and I love you.' without so much as uttering a word."

"You should scrap it and start over." Said the angel.

"I can't," said the Lord, "I'm so close to creating something
so close to myself. Already I have one who heals herself when she is sick...can
feed a family of six on a pound of hamburger...and can get a nine year old to
stand under a shower."

The angel circled the model of the mother very slowly. "It's to soft."
she sighed.

"But tough." said the Lord excitedly, "You cannot imagine what
this mother can do or endure."

"Can it think?" asked the angel.

"Not only can it think, but it can reason and compromise." Said the
Creator.

Finally, the angel bent over and ran her finger across the cheek. "There's
a leak," she pronounced, "I told you, you were trying to put too much
into this model."

"It's not a leak," said the Lord, "It's a tear."

"What's it for?" she asked.

"It's for joy, sadness, disappointment, pain, loneliness and pride."

"You are a genius." Said the angel.

The Lord looked somber, "I didn't put it there..."


*********************************



Mommy Brain




If you've left the crayons to melt in the car,

And forgotten just where the car keys are.

There's a perfectly good way to explain:

You see, you've come down with "Mommy Brain".

When you're not sure where the past eight hours went,

Or whether the phone bill check's been sent,

If you've left the laundry drying in the rain,

It's just--you guessed it--Mommy Brain.

If you find yourself chatting for hours on end

About diaper prices with your cyber friends,

You've just caught a particularly virulent strain

Of that affliction known as Mommy Brain.

If you've left your bags at the grocery store.

Or completely forgot what you went there for.

If you called the cat by your baby's name.

You can bet that Mommy Brain's to Blame.

And if you know the words to Good Night Moon by heart

Or if you study your sleeping babe, like a work of art.

If you're always surprised by how time is flying,

And the thought of that first birthday starts you crying........

It's unavoidable girls, and I feel your pain.

For I, too, suffer from Mommy Brain.

But I'll admit one thing...Of this I'm sure:

I hope they never find a cure!


*****************************************


Childhood Doesn't Wait




I was sitting on a bench

While in a nearby mall,

When I noticed a young mother

With two children who were small.

The youngest one was whining,

"Pick me up" I heard him beg,

but the mother's face grew angry,

as the child clung to her leg.

"Don't hang on to me." She shouted,

As she pushed his hands away,

I wish I'd had the courage

To go up to her and say...

"The time will come too quickly,

When those little arms that tug,

Won't ask for you to hold them,

Or won't freely give a hug.

"The day will sneak up subtly,

just as it did with me,

When you can't recall the last time,

That your child sat on your knee.

"Like those sacred, predawn feedings,

When we cherished time alone,

Our babies grow and leave behind,

Those special times we've known.

"So when your child comes to you

With a book that you can share,

Or asks that you would tuck him in

And help him say his prayer...

"When he comes to sit and chat

Or would like to take a walk,

Before you answer that you can't

'cause there's no time to talk.

"Remember what all parents learn

So many times too late,

That years go by too quickly,

And that childhood doesn't wait.

"Take every opportunity,

If one should slip away,

Reach hard to get it back again,

Don't wait for another day!"


******************************************


I am a Mother




I am Queen of the castle.

Chief cook and bottle washer,

And Head Chef at Chez Moi.

I am defender of good against evil.

I am slayer of horrors, unseen.

With a wave of my hand, I can stop a wars.

Armed only with tape and glue, I can build a fortress.

With a needle and thread, and a handy bath towel,

I have single handedly created super heroes. (and then sent them to bed).

I am able to fix broken hearts with just one kiss.

I have stopped tears with nothing more than my touch.

I can say "I love you" With only a look.

Am I a natural wonder of the world?

No... I am a mother.


******************************************




You Know You're a Parent When... (12 surefire signs.)




You eat dinner on dinosaur-decorated place mats.

You catch yourself singing the Barney theme song ----in public.

You stop the tears by taping broken crayons back together .

You long for nothing more than a good night's sleep.

You buy jelly according to the characters on the jar.

You know the best way to scrape dried Cheerios off the floor.

You find out you never have to buy another Christmas ornament.

You share the storage closet with a miniature broom and Vacuum cleaner.

You take phone messages in crayon.

You always buy the big pack of batteries---but you can never find one when you
need one.

You find action figures in your washing machine.

You find yourself cutting your spouse's meat into bite-sized pieces.


***************************************




The Evolution of a Mom




Yes, parenthood changes everything. But parenthood also changes with each baby.
Here are some of the ways having a second and third child differs from having
your first:




Your Clothes:

1st baby: You begin wearing maternity clothes as soon as your OB/GYN confirms
your pregnancy.

2nd baby: You wear your regular clothes for as long as possible.

3rd baby: Your maternity clothes are your regular clothes.




The Baby's Name:

1st baby: You pour over baby-name books and practice pronouncing and writing
combinations of all your favorites

2nd baby: Someone has to name their kid after your Great-aunt Mavis. Right?

3rd baby: You open the name book, close your eyes, and see where your finger
falls. Bimaldo. Perfect.




Preparing for the Birth:

1st baby: You practice your breathing religiously.

2nd baby: You don't bother practicing because you remember that it didn't work
last time.

3rd baby: You ask for an Epideral in your 8th month.




The Layette:

1st baby: You pre-wash your baby's clothes, color coordinate them, and fold
them neatly in the baby's little bureau.

2nd baby: You check to make sure that the clothes are clean and discard only
the one's with the darkest stains.

3rd baby: Boy's can wear pink. Can't they?




Worries:

1st baby: At the first sign of distress--a whimper, a frown-- you pick up the
baby.

2nd baby: You pick up the baby only when the wails threaten to wake your first
child.

3rd baby: You teach your three-year-old who to rewind the mechanical swing.




Activities:

1st baby: You take your baby to Baby Gymnastics, Baby Swing, and Baby Story
Hour.

2nd baby: You take your baby to Baby Gymnastics.

3rd baby: You take your baby to the supermarket and the dry cleaner.




Going Out:

1st baby: The first time that you leave the baby with a sitter, you call home
5 times.

2nd baby: Just before you walk out the door, you remember to leave the number
where you can be reached.

3rd baby: You leave instructions for the sitter to call only if she sees blood.




At Home:

1st baby: You spend a good bit of every day, just gazing at your baby.

2nd baby: You spend a good bit of every day watching to be sure that your older
child isn't squeezing, poking or hitting the baby.

3rd baby: You spend a good bit of every day hiding from the children.


***********************************************


"Why, Doesn't He read lips?"




My husband and I know a couple and the wife is deaf. However, in addition to
speaking sign language, she reads lips very well.

I noticed one day my son was talking to her and she was having a hard time reading
his lips because he kept looking away.

Thinking that he didn't understand, I said, "She can't hear you. She's
deaf."

He replied "Oh, we learned some sign language in school."

I told him that he could try it some time, but that some people who were deaf
could read your lips when you were talking if they could see them.

Well, several months later, after a much too long hiatus from the church, I
decided to return.

Upon entering the church, I made the sign of the cross, then again as we found
our seats, I knelt and I did it again.

"What are you doing that for?" he asked quietly.

I thought that he couldn't fathom The Trinity, so I said, "I'm telling
God how much I love Him."

"Why, doesn't He read lips?"




Sunday, February 9, 2003 10:18 AM CST

KATIA IS ON TIME WARNER CABLE CHANNEL #139 TONIGHT, MONDAY FEBRUARY 10TH. THAT IS BAY NEWS 9 ESPANOL. THE STORY WILL RUN EVERY 20 MINUTES AND IS BEING SPONSORED BY FLORIDA BLOOD SERVICES AND NATIONAL MARROW DONOR PROGRAM. FOR THOSE IN TAMPA, I HOPE YOU CAN SEE IT. LOVE, TRACY

I just found these on another site and had to post them because some of them had me in tears laughing and others were just so true! Enjoy :)


*******************


When God Created Mothers





When the Good Lord was creating mothers, He was into his sixth day of overtime
when an angel appeared and said, "You're doing a lot of fiddling around
with this one."

And the Lord said, "Have you read the specifications on this order? She
has to be completely washable, but not plastic. Have 180 moveable parts...all
replaceable. Run on black coffee and leftovers. Have a lap that disappears when
she stands up. A kiss that can cure anything from a broken leg to a disappointed
love affair. And have six pairs of hands."

The angel shook her head slowly and said, "Six pairs of hands? No way!"

"It's not the hands that are causing me problems," said the Lord,
"it's the three pairs of eyes the mothers have to have."

"That's on the standard model?" asked the angel.

The Lord nodded. "One pair that sees through closed doors when she asks,
'What are the kids doing in there?' When she already knows. Another here in
the back of her head that sees what she shouldn't, but what she has to know,
and of course the ones here in the front that can look at a child when he goofs
up and says, 'I understand and I love you.' without so much as uttering a word."

"You should scrap it and start over." Said the angel.

"I can't," said the Lord, "I'm so close to creating something
so close to myself. Already I have one who heals herself when she is sick...can
feed a family of six on a pound of hamburger...and can get a nine year old to
stand under a shower."

The angel circled the model of the mother very slowly. "It's to soft."
she sighed.

"But tough." said the Lord excitedly, "You cannot imagine what
this mother can do or endure."

"Can it think?" asked the angel.

"Not only can it think, but it can reason and compromise." Said the
Creator.

Finally, the angel bent over and ran her finger across the cheek. "There's
a leak," she pronounced, "I told you, you were trying to put too much
into this model."

"It's not a leak," said the Lord, "It's a tear."

"What's it for?" she asked.

"It's for joy, sadness, disappointment, pain, loneliness and pride."

"You are a genius." Said the angel.

The Lord looked somber, "I didn't put it there..."


*********************************



Mommy Brain




If you've left the crayons to melt in the car,

And forgotten just where the car keys are.

There's a perfectly good way to explain:

You see, you've come down with "Mommy Brain".

When you're not sure where the past eight hours went,

Or whether the phone bill check's been sent,

If you've left the laundry drying in the rain,

It's just--you guessed it--Mommy Brain.

If you find yourself chatting for hours on end

About diaper prices with your cyber friends,

You've just caught a particularly virulent strain

Of that affliction known as Mommy Brain.

If you've left your bags at the grocery store.

Or completely forgot what you went there for.

If you called the cat by your baby's name.

You can bet that Mommy Brain's to Blame.

And if you know the words to Good Night Moon by heart

Or if you study your sleeping babe, like a work of art.

If you're always surprised by how time is flying,

And the thought of that first birthday starts you crying........

It's unavoidable girls, and I feel your pain.

For I, too, suffer from Mommy Brain.

But I'll admit one thing...Of this I'm sure:

I hope they never find a cure!


*****************************************


Childhood Doesn't Wait




I was sitting on a bench

While in a nearby mall,

When I noticed a young mother

With two children who were small.

The youngest one was whining,

"Pick me up" I heard him beg,

but the mother's face grew angry,

as the child clung to her leg.

"Don't hang on to me." She shouted,

As she pushed his hands away,

I wish I'd had the courage

To go up to her and say...

"The time will come too quickly,

When those little arms that tug,

Won't ask for you to hold them,

Or won't freely give a hug.

"The day will sneak up subtly,

just as it did with me,

When you can't recall the last time,

That your child sat on your knee.

"Like those sacred, predawn feedings,

When we cherished time alone,

Our babies grow and leave behind,

Those special times we've known.

"So when your child comes to you

With a book that you can share,

Or asks that you would tuck him in

And help him say his prayer...

"When he comes to sit and chat

Or would like to take a walk,

Before you answer that you can't

'cause there's no time to talk.

"Remember what all parents learn

So many times too late,

That years go by too quickly,

And that childhood doesn't wait.

"Take every opportunity,

If one should slip away,

Reach hard to get it back again,

Don't wait for another day!"


******************************************


I am a Mother




I am Queen of the castle.

Chief cook and bottle washer,

And Head Chef at Chez Moi.

I am defender of good against evil.

I am slayer of horrors, unseen.

With a wave of my hand, I can stop a wars.

Armed only with tape and glue, I can build a fortress.

With a needle and thread, and a handy bath towel,

I have single handedly created super heroes. (and then sent them to bed).

I am able to fix broken hearts with just one kiss.

I have stopped tears with nothing more than my touch.

I can say "I love you" With only a look.

Am I a natural wonder of the world?

No... I am a mother.


******************************************




You Know You're a Parent When... (12 surefire signs.)




You eat dinner on dinosaur-decorated place mats.

You catch yourself singing the Barney theme song ----in public.

You stop the tears by taping broken crayons back together .

You long for nothing more than a good night's sleep.

You buy jelly according to the characters on the jar.

You know the best way to scrape dried Cheerios off the floor.

You find out you never have to buy another Christmas ornament.

You share the storage closet with a miniature broom and Vacuum cleaner.

You take phone messages in crayon.

You always buy the big pack of batteries---but you can never find one when you
need one.

You find action figures in your washing machine.

You find yourself cutting your spouse's meat into bite-sized pieces.


***************************************




The Evolution of a Mom




Yes, parenthood changes everything. But parenthood also changes with each baby.
Here are some of the ways having a second and third child differs from having
your first:




Your Clothes:

1st baby: You begin wearing maternity clothes as soon as your OB/GYN confirms
your pregnancy.

2nd baby: You wear your regular clothes for as long as possible.

3rd baby: Your maternity clothes are your regular clothes.




The Baby's Name:

1st baby: You pour over baby-name books and practice pronouncing and writing
combinations of all your favorites

2nd baby: Someone has to name their kid after your Great-aunt Mavis. Right?

3rd baby: You open the name book, close your eyes, and see where your finger
falls. Bimaldo. Perfect.




Preparing for the Birth:

1st baby: You practice your breathing religiously.

2nd baby: You don't bother practicing because you remember that it didn't work
last time.

3rd baby: You ask for an Epideral in your 8th month.




The Layette:

1st baby: You pre-wash your baby's clothes, color coordinate them, and fold
them neatly in the baby's little bureau.

2nd baby: You check to make sure that the clothes are clean and discard only
the one's with the darkest stains.

3rd baby: Boy's can wear pink. Can't they?




Worries:

1st baby: At the first sign of distress--a whimper, a frown-- you pick up the
baby.

2nd baby: You pick up the baby only when the wails threaten to wake your first
child.

3rd baby: You teach your three-year-old who to rewind the mechanical swing.




Activities:

1st baby: You take your baby to Baby Gymnastics, Baby Swing, and Baby Story
Hour.

2nd baby: You take your baby to Baby Gymnastics.

3rd baby: You take your baby to the supermarket and the dry cleaner.




Going Out:

1st baby: The first time that you leave the baby with a sitter, you call home
5 times.

2nd baby: Just before you walk out the door, you remember to leave the number
where you can be reached.

3rd baby: You leave instructions for the sitter to call only if she sees blood.




At Home:

1st baby: You spend a good bit of every day, just gazing at your baby.

2nd baby: You spend a good bit of every day watching to be sure that your older
child isn't squeezing, poking or hitting the baby.

3rd baby: You spend a good bit of every day hiding from the children.


***********************************************


"Why, Doesn't He read lips?"




My husband and I know a couple and the wife is deaf. However, in addition to
speaking sign language, she reads lips very well.

I noticed one day my son was talking to her and she was having a hard time reading
his lips because he kept looking away.

Thinking that he didn't understand, I said, "She can't hear you. She's
deaf."

He replied "Oh, we learned some sign language in school."

I told him that he could try it some time, but that some people who were deaf
could read your lips when you were talking if they could see them.

Well, several months later, after a much too long hiatus from the church, I
decided to return.

Upon entering the church, I made the sign of the cross, then again as we found
our seats, I knelt and I did it again.

"What are you doing that for?" he asked quietly.

I thought that he couldn't fathom The Trinity, so I said, "I'm telling
God how much I love Him."

"Why, doesn't He read lips?"




Thursday, February 6, 2003 5:07 PM CST

Hello! Well we had a doctor's appointment today for Katia and what we have is Fifth Disease, kinda like measles or something. Anyway, hers isn't as bad as mine and they say hers should be gone in a few more days. Mine is getting better. Thank you for your prayers. Her CBC looked great. For those of you who care for the numbers,
WBC = 6.2
HGB = 12.9
PLT = 247
Nothing was flagged! I was worried but God is really keeping us under his wing and letting us enjoy this time.

If you wish to send Katia a card, it really makes her day to see them in her mailbox. Her PO Box is listed at the bottom of the page. We have gotten a lot of postcards from around the world and we ALL love to see those. Thanks! Tracy


Tueday, February 4, 2003 11:43 AM CST

Well over the last few days we have been pretty busy but things are beginning to slow down. The newest is that I have developed some type of rash on my face and neck and some on my lower arms. It is weird. First I felt like I had a bit of a cold but then that went away. Then, this was faint until I was out in the sun for maybe 5 - 10 minutes and it flared up and now it burns and itches. I am waiting for my doctor to call me back. The sad part is, now Katia is showing the same symptoms so I hope it is nothing that can affect her health. Any ideas of what this may be? Let me know. Katia has been pretty sleepy lately but when she is awake she is quite hyper! Her appetite is good though but it is always good. Anyway, let me know how you are doing and if you have any ideas about this rash. I will update when I know more. Katia has a clinic appointment on Thursday for a CBC and for them to look at her face and neck. I don't know if I can go to the clinic because I am not sure if I am contagious. That is why I am trying to see my doctor. Love, Tracy


Friday, January 31, 2003 at 06:05 AM (CST)

Well all is still going good. Katia has been sleepy a lot but we have been doing quite a bit of running around. Her talking is really improving! She talks A LOT! I still think she sounds like the little girl in Monster's Inc., Boo! She sounds so cute but she hates if you act like your listening and your not.
The other kids are doing good in school. We will complete the first week today.
All of us are really enjoying the new house. We have had to make a few minor repairs here and there but we are doing better at them than I thought we would. Today I am replacing one of the remote fan switches (wowwwwwwww)! I have never been very handy but I am doing okay.
Sharayah left something in her pocket yesterday in the laundry and ruined all their uniforms! Yes, I was washing them all at one time. Needless to say last night was very stressful but today is another day. I went out last night and replaced the school pants but the school shirts, I have to find again. They were hard to find the first time and that was just over a week ago.
They are both doing good in school and homeschooling seemed to really help the two of them which I am glad of.
Katia's next appointment will be sometime in the beginning of the 2nd week in February. She has a big bruise on her leg and it is lumpy feeling plus the tumor in eye is swelling again but not too fast. The tumor is something none of us know what to really do about. It can't be removed and it is not cancerous but it can get very big and cause problems with her eye and her looks.
Please pray that it doesn't swell all the way back up.
Thank you for coming by Katia's page! It means the world to us.
I love to check her website and read the guestbook entries. It is like having a bunch of friends over and meeting new people.
Please pass Katia's website on to others. I want as many people to get to know little Katia as possible. She is a real tough cookie and a big fighter and she is our little champion.
Love, Tracy


Monday, January 27, 2003 at 12:34 PM (CST)

Katia's birthday was just so great!!!! She was so excited. We started our day by giving her half of her birthday present (the ball) and then we went to church. Had we given her the whole thing, she would have cried and cried to leave the house...
Anyway, everyone was glad to see Katia looking so well and it was nice seeing everybody.
Then we came home and had lunch (which had to be quick because Katia just wanted cake!) Then she got to hear one of her favorite songs, "Happy Birthday to KATIA!" It was so great seeing her so happy and healthy after everything she has been through this year. God has really blessed us by giving her good health and keeping her in remission!
After she ate her cake, we gave her the other half of her birthday present (the basketball hoop) and she played for a while then brought up the fact we hadn't had the cake. So of course, we all had cake!
The day was going so well and then came the superbowl...

WOW! We won!!! The Bucs won the superbowl! I can't believe it, I mean I believed they could win but it actually happened. Katia got a Buccaneer shirt for her birthday which she wore through the superbowl. What a great game!!! There was a lot of celebrating in the neighborhood and all over Tampa. The streets were packed with people driving around the stadium and just out being happy. From what I understand all went well and there were no real problems last night in Tampa.

To sum it all up, yesterday was one of the greatest days of my life and my baby is doing so well :0)

Thank you for the birthday cards, guestbook entries and the e-cards! This world is full of great people and I think most of them have visited Katia's site.

She should be on the news again in the next week or so. They were scheduled to film today here at the house but since the BUCS WON they will delay it a day or two.

The news episodes with Katia are really making a difference though. According to the National Bone Marrow program and the Florida Blood Services people are calling in honor of Katia to register their bone marrow and donate blood. Thank you!

Love, Tracy


Friday, January 24, 2003 at 05:12 PM (CST)

WE HAVE FINISHED MOVING!!!!!!!!!!!!!!!! Nothing left to do but hang a couple of pictures and mend our sore muscles but the move went very well and here I am back online. Really, everything moved smoother than I thought because I got very overwhelmed by everything and never saw the end in sight! But 24 hours after my nervous breakdown, we were done. Myron is such a hard worker and we just both put our minds to it and BAM! Here we are in our new house. I will post pictures over the next few days. Thank you everyone for you well wishes and for keeping Katia and our family in your thoughts and prayers. She is doing great and VERY HAPPY. 3 more days till the big Birthday #3!
She is great! Love, Tracy


Tuesday, January 21, 2003 at 08:17 AM (CST)

WELL I JUST WANT TO UPDATE TODAY BECAUSE THE NEXT FEW DAYS WILL BE COMPLETELY HECTIC WITH THE MOVE. ON WEDNESDAY WE SIGN AND THEN WE WILL GO DO A FULL CLEANING AT THE HOUSE (CARPETS, TILE, GARAGE, BACK PORCH, BATHROOMS AND KITCHEN). THAT SHOULD TAKE US ABOUT 4 HOURS. OUR KIDS ARE GOING TO BE WITH MY DAD. THEN WEDNESDAY NIGHT WE PLAN TO MOVE OVER EVERYTHING FROM THE CLOSETS, BATHROOMS AND KITCHEN. ON THURSDAY MORNING BRIGHT AND EARLY WE WILL MOVE ALL THE FURNITURE (PRAY FOR US MOVING OUR LIVINGROOM SET) AND ALL THE REST OF THE HOUSEHOLD ITEMS. LAST TIME WE MOVED WE BROKE ONE OF OUR TVs. THAT BETTER NOT REPEAT ITSELF. MOST OF THURSDAY, I WILL BE AT THE NEW HOUSE AND AS MYRON AND HIS BROTHER, GLEN BRING EVERYTHING OVER I AM GOING TO TRY TO PUT IT AWAY. IT WILL JUST BE ONE TRIP WITH A BIG TRUCK. HOPEFULLY BY LATE AFTERNOON THURSDAY WE WILL BE ALMOST DONE. THE KIDS WILL COME HOME AND HELP ORGANIZE THEIR ROOMS ( I LOVE THE FACT THEY ARE OLDER NOW ). THEN FRIDAY WILL JUST BE HANGING PICTURES AND FINISH UNPACKING ANYTHING AND THEN ORGANIZE THE GARAGE AND HOPEFULLY TADA!
WE WILL BE DONE. SUNDAY IS KATIA'S 3RD BIRTHDAY AND THE BUCS IN THE SUPERBOWL! WHAT A DAY! THIS HAS TO BE A BETTER YEAR THAN LAST YEAR. I AM PRAYING THAT FOR EVERYONE. I WILL BE OFF-LINE UNTIL THE 24TH BASICALLY BUT I CAN'T WAIT TO SIGN BACK ON AND READ THE GUESTBOOK! I PRAY EVERYONE WILL HAVE A SAFE FEW DAYS AND HAVE GOOD BLOOD TESTS, SPINALS, BONE MARROW ASPIRATIONS, HOSPITAL STAYS AND NOBODY RUNS A FEVER :0) THANKS TO EACH OF YOU FOR BEING A NEW FRIEND AND THANK YOU TO MY FAMILY AND MY FRIENDS FOR STICKING BY US THIS YEAR AND KEEPING IN CONTACT. I LOVE YOU. LOVE, TRACY

BE THINKING OF KATIA ON SUNDAY WHEN SHE TURNS 3. THIS IS SUCH A BIG MILESTONE FOR US IN SO MANY WAYS!!!


Saturday, January 18, 2003 at 03:44 PM (CST)

I am trying to add some new pictures before I start to move because I will probably not be able to spend much time on this over the next week or so. I will keep up with reading the
guestbook and updating the journal.
I AM SO READY FOR THE MOVE! I CAN'T BELIEVE IT. This will be our first house so we are extremely excited.
We plan to move during the end of next week. Katia's birthday is January 26th
which is next Sunday plus that is the SuperBowl. She will be three years
old! I can't believe it. This has been such a long and hard year but right now everything is going good and we are happy for that. We have definitely learned to be thankful each day and never take things for granted. I was thinking over the last year while I was typing something out so I am going to put it here too. This year has been very full of activity and sorrow and many ups and downs. I pray that 2003 will bring good things to the Solomon Family with Katia having good health. I pray for all the other families going through this. I pray a cure is found and can start just saving lives left and right! I appreciate each of you and thank you for your kind messages you leave. I look very forward to coming and checking the guestbook a few times each day. Katia loves to get cards and open them. She started liking her "mailtime" at the hospital and she continues. She still receives quite a few cards and I am greatful for that. I love that little smile and even the Blues Clue, "We just got a letter" song that goes with it! Below is "This Year At-A-Glance" for those of you who are new to Katia's story. Plus you can
always go to the St. Pete Times Article Link at the bottom of this page. Thank you for visiting.

Our daughter, Katia Solomon was born in January 2000. We thought she would be a millenium baby but she was born on the 26th! We were so happy and she was just a joy for our family. We have 2 older daughters, Sharayah-14 and Tatiana-10 so we were all excited to have a little baby in the house. When Katia was 3 months old, she stopped breathing for a couple minutes. We called 911 and when the paramedics arrived a few minutes later, Katia was fine. There was no sign of any problems at her next doctor visit. That scare brought all of us closer to her and we basically spoiled her (but that was okay by all of us - she was our baby). All was fine until right before Katia's 2nd birthday. We were getting ready for church and Katia was walking into our bedroom and fell and hit her head on our bed frame. It was a VERY hard hit but it didn't seem to really swell too bad as we put ice on it. We went to church and over the next few days we were pleased that her head healed up so quickly. Her birthday was 11 days after the hit and she appeared normal. About a week after her birthday (18 days after the fall) we noticed some swelling around her right eye. Since the fall had not caused problems we didn't associate it with the fall. We took her to the doctor and she was treated for allergies. A few days later the eye was twice as bad. We took her back and also showed the doctor some bruising on Katia's legs. The doctor said the bruising went with her age but decided the eye needed antibiotic ointment. Again, a couple of days passed and the eye was not only swelling worse but seemed to be putruding outward so we took her back. This visit she also had more bruising and some unexplainable sores on her back. The pediatrician wanted us to see an optometrist and had no explinations for the bruising or sores. She said maybe it was bugs. I was concerned, very concerned by now. I knew Katia wasn't around bugs and her activity level didn't explain the bruising. I called the optometrist and after being told the next appointment was a few weeks away, I took Katia to the ER. I asked them to do a CT Scan of her head because I felt something was wrong. Five hours later the ER doctor came out and said the scans were clear. I called back the optometrist and explained all this in detail to her and she agreed to see her the next day. Katia went to her office and was immediately sent to get an MRI STAT. This doctor showed urgency finally. She sent someone to bring the scans back to her office. That afternoon she called saying Katia had a large mass behind her right eye and she was sending us to another specialist. We had 4 or 5 appointments for week for a few weeks. Everyone was trying to come to an agreement of what this mass was and how to treat it. Finally it was decided to do plastic surgery and remove the tumor but before that could be done, she needed an embolism to cut off the blood circulation to lessen bleeding during surgery. After the embolism, Katia came down very sick and was diagnosed with menengitus. She was hospitalized in isolation. Three days later, we were told she had Leukemia and sent to ALL CHILDRENS via ambulance. Then we were told a day later she had the worse of the Leukemias. Katia went through 5 months of extensive chemo, had about 7 or 8 serious infections, a LOT of pain over this time and finally finished chemo in September of 2002. In October and November she was hospitalized for 2 more serious infections. The last one she had caused her to stop breathing and have a temperature of 107.8! I think back on that now and can't believe she is running around and currently remains in remission. It is a miracle! She was home for Thanksgiving and Christmas and celebrated the New Years at home. We pray she has a great year and can live a long, happpy, and healthy life!


Saturday, January 18, 2003 at 03:00 AM (CST)

<"center">We went to Rob's viewing last night and that was very difficult to see. There
were 100's of people there and his parents were greeting each one. I am not sure
I could have been that strong. Rob's sister was there too (she was his Bone Marrow
Donor twice) and she too was greeting everyone. This disease is so horrible and
even though Katia is in remission I feel like the disease is just lurking around
our house. Rob was in remission last June. I can't help but to think about that.
I gave his family a card and I wish now I had written down the message on it but
it said something about..., "People tell you how strong you are being and
how your loved one is now in a better place... how you should feel peace knowing
that... but you don't have a right or wrong way to mourn. You can throw a temper
tantrum, scream, hate this. ...all I want from you is for you to know that I love
you and I am here for you whenever you need me. You will come out the other side."
There was quite a bit more to it but to me, if there is a "perfect"
card, that was it. His parents were concerned about Katia and I was actually happy
to report she is doing very good. We are all in this fight together and pray for
the best for each child. We went with one of Katia's nurses and let me tell you,
I really respect their jobs. This is so hard on them. They get very close to these
children knowing things could turn out good or bad. They never hesitate to offer
their full selves and bear the burden of outcomes. There were a few nurses there
and I understand a few will be at the funeral today and burial. I would offer
to go but I don't think I can go to the burial grounds. I haven't been to a burial
since 1974 (my grandfather's) and since I have usually chosen to attend viewings.
If someone requested I go to a burial then I would but...

I pray for each of you reading this rather you have a family member with cancer,
have cancer, or don't have either, to be able to find peace with your family now.
So many of us get busy and pass up the opportunities that become so important
later. I pray there will be a cure found for horrible diseases such as cancer.
I pray for this war in the gulf and other wars abroad. There is just so much hurt
in the world but there is also God and He gives me peace to know that no matter
what, He is always there. Someone sent me this saying and I use it for my e-mail
signature now.
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"If God leads you to it, He'll get you through it."


So true. Love, Tracy


Thursday, January 16, 2003 at 05:26 AM (CST)

UPDATE: 1/17/03 Sharayah and Tatiana's blood tests results are in. Their doctor called me last night and said their cholestrol levels are very high so they are on restricted diets and will be rechecked in one month to see if the levels are down. If not, they will start treatment. Sharayah's is 233 and Tatiana's is 234. Also, Tatiana's blood sugar levels are off but not enough for concern but it will be rechecked, too. Thank you for your prayers. Poor Tatiana yesterday, I thought she was going to faint or throwup or something. She looked SO BAD when they were doing her blood test. It was horrible. I had never seen her get that weak and fearful looking. She curls up, sweats, turns ghost white (and I mean WHITE) and moans. It was horrible. Even the nurses were concerned for her. She is already dreading it for next month. They have to eat low fat diet, drink fiber, take garlic tabs twice a day and vitamin E once a day. They are both supposed to limit their sugar intake. They have good activity levels. They usually go skate or ride their scooters 4 or 5 times a week and we stay busy around the house. We will just pray things turn around but the high cholestrol does run in my family. Mine was 279, 10 months ago and I eat like a saint! I have to go get mine rechecked but it has always been high. I am on a diet right now and am drinking fiber 3 times a day, Garlic tabs, haven't done the vitamin E thing but I go back to my doctor in February. I really hope it is down below 230. Hoping everyone has a good weekend. Next week we move so I may not be able to be on here much. I will try. Love, Tracy

First, for those of you who didn't see the journal entry before this, you may want to read it so you understand what this one is about...

Today we go to the lab again for repeat blood tests on Sharayah and Tatiana. Poor Tatiana has been so nervous all day yesterday even though she understands it really doesn't HURT all that bad she still has such a fear! Poor little thing. I hope to find out results late today but possibly it will be until tomorrow.

Also, Rob's viewing will be Friday and his funeral will be on Saturday. I plan to go to one of them or both if I can. It will be my first funeral of someone who died from this dreadful disease. I am just very heart broken for his family and what they must be going through.

If you would like to send them a card, you can send it via Katia's mailing address and I will forward them on. I don't want to give out their home address but I am sure it would really touch their hearts to know others are there for them at this time, people they have never known.

Their names are Bob, Jane and Megann(Rob's sister) Haase. Love, Tracy


Wednesday, January 15, 2003 at 09:35 AM (CST)


Well I had another good scare last night but this was over our 10 year old
daughter, Tatiana. Since they are going back into public school, from homeschooling,
they needed school physicals. The doctor thought best to do blood tests. That
was Monday around 4PM. Well, last night I realize there is a message in my voice
mail that I had missed all day (seeing as we were at the clinic with Katia). It
was the doctor calling saying she needed to talk to me about Tatiana's blood tests.
Well by the time I got it, it was too late to call so after no sleep and worrying
all night, I called this morning at 8:30 the moment they opened. Come to find
out both Sharayah, the 14 year old and Tatiana shows high cholestrol levels and
Tatiana's is showing blood sugar problems. Tatiana does get pretty sick when she
doesn't eat and she turns totally white including her lips and mouth! We have
been worried about this but usually once she eats she is okay. Anyway, I was worried
about far more than I needed to be worried about. So I was going to just take
them back to the lab (the doctor wants follow-up lab work today) but I go out
to tell them not to eat breakfast and....

yep, they were already eating so I will wait until in the morning. Tatiana has
had her share of problems. She is pretty puny looking for the most part. She was
born 28 days LATE! She had a small hole in her stomach which was corrected without
surgery. She also has a type of lazy eye which seems to be correcting itself.
She has a curve in her spine which we questioned but just found out for sure on
Monday during her physical so as soon as we are done with our move, we need to
take her to a specialist. That will be done in the beginning of February I hope.
Tatiana wears out easily. Other than that, she is a "normal" 10 year
old. Please pray that she isn't "diabetic" which does run in my family.
TATIANA HATES NEEDLES!!!!!

Other than that, here are Katia's CBC results:

WBC= 7.8 (January 6 = 4.5)

HGB=15.6 (January 6 =14.6)

PLT=197 (January 6 =148)

ANC=2000 (January 6 =1800)


The blood work she had done yesterday to look for a reason as why she is
bruising so badly (the were checking her "clotting agents") came back
fine so we are still in the dark about why she is bruising so badly. The nurses
keep saying "typical 2 year old" which upsets me because Katia is
in the house and is only around a very pillowed sofa, carpet and beds. The bruises
look like she climbs and falls on bricks all day! I don't know what else to
ask the doctors to do but I really want to know what is up.


If you have any ideas please let me know. Love, Tracy


Please pray for the families who have lost their children recently. It breaks
my heart how many have passed away. There are also some families I know of that
are right now just trying to make life comfortable for their children because
there are no further treatments for them.


Also, I am so thankful for the people that have stepped forward to help
us during this time in our lives. Many people we did not even know who are now
dear friends and even family that had been distant has been there for us with
prayers, cards, and even donations. I believe when a person needs help, ask.
God has many angels out there who will step forward and help but nobody knows
your need if you don't ask. We struggle on a daily basis with our finances.
We are moving right now and I am praying with this move our bills will go down
a little bit and our value of living will go up. Our kids really need some freedom
of a back yard and a house they can call home. They will be back in school which
will help them with the social (hopefully not TOO much) part of their lives.
Sending them back to school will cause an initial expense but I really feel
it is better for them to be in school. My time is too stretched out right now
and I am not able to do the full amount of home-school time I need to. Sharayah
will be in HIGHSCHOOL next year (I feel old) and that is just too important
for me to risk doing a good job.


If God lays on your heart to send a donation to help the Solomon Family
it is always GREATLY appreciated. We are also in the process of producing more
CDs (Myron's "Lady in Red")to pass out. Although this has been an added expense to us,
we feel led to use the avenues presented to us by news channels and newspapers
to continue trying to raise awareness to this disease for Katia and all the
people fighting this horrible illness. Our dedication to this seems to be making
a difference and people are registering. If you are a local person, in the Tampa
Bay area and would like to register to be a Marrow Donor, please contact Ivan
727-568-2115
. He will help you do this. Tell him, "Katia sent
you."


For any donations toward the cost of CD production or directly
to the Solomon Family, mail to:

Katia Solomon

PO Box 22375

Tampa, FL 33622


The most important thing is your prayers! Thank you. Love, Tracy

I just found out while typing this that another dear friend of ours passed away last night. His name was Rob. Please pray for his family during this type. He was diagnosed with Leukemia AML in January 2002. We called him Katia's AML buddy because for a while they were the only two on the floor with AML. This news really breaks our heart. I don't know how to pass this news on to our kids and even Myron.
1-16-03 Today we go to the lab again for repeat blood tests on Sharayah and Tatiana. Poor Tatiana has been so nervous all day yesterday even though she understands it really doesn't HURT all that bad she still has such a fear! Poor little thing. I hope to find out results late today but possibly it will be until tomorrow.
Also, Rob's viewing will be Friday and his funeral will be on Saturday. I plan to go to one of them or both if I can. It will be my first funeral of someone who died from this dreadful disease. I am just very heart broken for his family and what they must be going through. If you would like to send them a card, you can send it via Katia's mailing address and I will forward them on. I don't want to give out their home address but I am sure it would really touch their hearts to know others are there for them at this time, people they have never known. Their names are Bob, Jane and Megann(Rob's sister) Haase. Love, Tracy


Tuesday, January 14, 2003 at 08:41 PM (CST)

WOW! So many people have visited Katia's site lately.
THANK YOU for passing her Webpage address along.


We went to the clinic today and had some blood
tests run looking for the reason of her bruising????? It has gotten pretty bad
the last few days. Now it isn't just on her shins. She has one on her ribs,
a few on her thighs and one on her foot. She acts fine though running around
so I am baffled!


Over the last two weeks I have read so many other
Caringbridge pages and I am so determined now more than ever to really push
all the buttons I can to get the word out to everyone! We are really trying
hard to get people to donate blood (on a regular basis) and definitely sign
up for the National Marrow Donor Registry!
Myron has made some really great progress lately and after this last TV interview.
A LOT of calls came in from people wanting to become donors. We are not pushing
this just for Katia. At this time she doesn't need a Bone Marrow Transplant.
We are trying to do this for everyone! We have met so many courageous kids and
families and we just feel we have to do something to make a difference.


Myron has handed out over 300 of his "Lady
in Red" CDs
and with each one goes an insert giving people the direct
numbers and web addresses of organizations which do daily research discovering
new treatments and working on a cure for cancer. The insert also talks about
donating blood and signing up to be a Marrow Donor.


In reading other Caringbridge pages I have also
come across some beautiful poems that are very inspirational. I cannot tell
you how this has really touched me. I love poetry so I enjoy reading it whenever
I have the chance. One page even lead me to the "Quilts
of Love"
page which is so NEAT! Now Katia has a link to her personal
quilt on this page. Please visit Katia's quilt to see this beautiful design
from "Quilts of Love".


Katia's
Quilt


We have had good weeks, busy weeks, bad weeks,
overwhelming weeks, etc. but this week I would have to say has been educational,
inspirational, and uplifting. Why? Because I can really see how much love has
been shown to Katia, how many loving families are willing to reach out to eachother
and how our friends and family have stood by us throughout all of the bad days
and now even the good days.


Thank you to our friends and family and the new
ones we will meet! God bless each of you.


Love, Tracy Solomon



Saturday, January 11, 2003 at 11:55 AM (CST)

Katia's appearance on the news last night was short and sweet. Although it ran for only about 3 minutes, we have received numerous phone calls wanting to find out how people can register with the National Marrow Donor program. I have been very touched by people's responses. Although Katia is not in need for Bone Marrow right now, that day may come for her but it is here for so many other children. We are trying to make everyone we can aware of this need that is really so simple for people to become involved in.
Here is a link to their website to learn more of how to become a registered donor. If the day comes that Katia does need a Bone Marrow Transplant (which would be IF she were to relapse) then we would go to this organization to find her a donor match. National Marrow Donor Registry Website
I am so pleased with the outpouring of people wanting to help.
While you are here, take a minute to visit the links at the bottom of the page including Katia's other websites.
Thank you and please take time to sign the guestbook while you are here. Everyone that knows me knows I LOVE to read the entries each day.
Thank you for stopping by!
Love, Tracy


Thursday, January 09, 2003 at 10:26 PM (CST)

Katia is going to be on the news tomorrow, Friday, January 10 at 6PM.
The channel is Telemundo. It will be the local news so I am not sure where that reaches.

The channels are (from what I know)
Direct TV, Tampa 405
The Dish Network, Tampa 620
Time Warner, Tampa 13

Let me know if you were able to see it. She was sick so she was pretty medicated. I think it will be okay. Myron had been sick too so...


Thursday, January 09, 2003 at 03:36 PM (CST)

Katia seems to be improving but her coughing is still there and she really loses her breath. Continue praying for her that she will get better very soon.
On the other hand, we filmed today for the interview on Telemundo. It will be on their local 6PM news tomorrow, Friday night.
Myron did a good interview and Katia was pretty cooperative.
Hope those of you in the TampaBay area can check it out. Love, Tracy


Wednesday, January 08, 2003 at 02:05 PM (CST)

Katia's cough is getting better. She spit up quite a bit of mucus in the night and isn't coughing as much. She will be on the antibiotics through January 26th (her 3rd birthday). Her bruises are coming back so I will take her when they seem their darkest for the doctor to run the test he wants to do. Thank you for your prayers. Love, Tracy

PS Hopefully we are moved into the new house by Katia's birthday! I can't wait for the new start in the new year. All of this basically started a year ago on January 15th when she hit her head on the bedframe. We believe if she hadn't hit her head we may not have discovered the Leukemia in April.


Tuesday, January 07, 2003 at 10:44 AM (CST)

The cough has gotten much worse. She has only been on the antibiotics for 16 hours so maybe it will start getting better. Her temperature has risen but not enough to go in and she has been coughing, gagging and spitting up mucus (which maybe is a good thing). I hate seeing her feel so bad. We will have to hold off the filming for the news until the end of the week. Just pray that Katia will start getting better and we won't need to go in. Last time she got like this is when she stopped breathing and had a temperature all the sudden of 107.8. We are nervous but on top of things. Plus this time, if we have to go in, we would call 911 and not chance the drive to ACH. Sharayah and Tatiana are nervous about all of this too. Katia is coughing a lot and it makes them quiet and nervous as to what could happen. Love, Tracy


Monday, January 06, 2003 at 12:15 PM (CST)

Katia was up all night coughing a wheezing so Myron and I decided to take her in first thing this morning (even though she had an appointment for tomorrow). I am glad we did. A CT Scan showed a really bad sinus infection so she is on antibiotics (AT HOME) for 3 weeks and that should help. Poor little thing felt bad. I also talked to the doctor about bruising and he mentioned an idea but I can't think of the word but he needs to see her back at the time the bruising is at its worst (which of course was not today). I did take them the pictures so they could put them in her file. Her counts dropped over the last three weeks but they may be due to the infection. Her old counts were:
WBC= 8.8 now they are 4.5
HGB= 14.4 now they are 14.6
PLT= 213 now they are 148
ANC= 5300 now it is 1800

Anyway, she just needs to take this medicine for the next three weeks and hopefully be back to good.

The next news is that Katia will be on another news show. Telemundo (Spanish TV) called today wanting to do a story on her also. They will film tomorrow and I am not sure when it will aire but I think very soon. They wanted to film today but Katia doesn't feel good and is pretty worn down. She was up all night and had a long day at the hospital.

We can't wait to move. We are about 1/2 packed!!! I am so excited that it keeps me up at night. I am trying to plan where to put everything and etc....

Love, Tracy


January 2, 2003

Well as most of you know I have been very concerned about Katia's bruising and a few other changes like she is more tired lately. She had a cytogenics test done from the last bone marrow they took on December 18th and we just got the results back today. Her bone marrow looks good. If anybody has any ideas about bruising let me know because it is so bad on her little legs. I was hesitant to post a picture of it but I changed my mind and decided to post it. Maybe someone looking at the page or someone you send the address to for them to view it can have some advice. This bruising gets worse when she cries (which she does quite a bit of hard crying when she can't poop). It does go away but she has had this bruising since about the 20th of December and it has stayed bad. She has an appointment on the 7th of January for her next blood work but chances 9 to 10 the bruising will not be there. Happened last appointment. It went away for about 5 days and one of those days was her day to go to the clinic. I have printed a series of pictures to show the doctors and put in her folder. Never know, they may find an answer and it help them with another patient. I just want Katia to be better right now and not look so banged up. Her activity level doesn't give reason for the bruises. Also, some good news. We are moving to a house!!!! We move on January 17th! A big back yard and back porch in a nice quiet neighborhood. Three bedrooms and 2 bathrooms. Right now we have 2 bedrooms and with 3 kids, that is small. I can't wait. Katia loves it and Sharayah and Tatiana are excited. They will also be going back to public school instead of being homeschooled which will be better for all of us. A lot of changes right now but hopefully they are all for the good and we can enjoy relocating. It is only 10 minutes from here but a better area. Love, Tracy


Wednesday, January 01, 2003 at 06:38 AM (CST)

HAPPY NEW YEAR!! WE PRAY THE YEAR 2003 BRINGS GREAT THINGS FOR YOUR FAMILY AND OURS. KATIA WENT INTO THIS NEW YEAR NOT FEELING WELL AND QUITE BRUISED UP. SHE IS STILL HAVING A LOT OF PAIN WHEN SHE USES THE BATHROOM BUT LAST NIGHT WAS AWFUL AND REALLY SEEMED TO GO ON FOR A LONG TIME. SHE FINALLY DID GO BUT THE BRUISES SHE HAD ON HER LEGS GOT WORSENED BY ALL OF THE SCREAMING. I ALMOST THOUGHT SHE WAS GOING TO HAVE TO GO IN BECAUSE SHE WAS IN SO MUCH DISTRESS. PLEASE PRAY THAT THE DOCTORS WILL FIND THE ANSWERS TO WHY THIS BRUISING IS CONTINUING AND GETTING WORSE. I MAY TAKE HER IN EARLY NEXT WEEK JUST TO GET HER BLOOD COUNTS BUT I AM SURE THEY ARE PROBABLY FINE. THEY HAVE BEEN GOOD WHICH IS WHY NOBODY UNDERSTANDS THE BRUISING...
ABOUT NEW YEARS. ALL OF US FELL ASLEEP BEFORE THE TIME CAME BUT WE WOKE UP RIGHT BEFORE AND WATCHED THE BALL DROP, GAVE HUGS AND KISSES AND WERE ASLEEP BY AROUND 12:10 JANUARY 1, 2003!!!
MAY GOD PROTECT ALL OF US AND THIS YEAR BRING PEACE, NEW CURES, AND TURN PEOPLE TOWARD GOD. LOVE, TRACY


Monday, December 30, 2002 at 08:05 PM (CST)

I am concerned by quite a bit of bruising on Katia that is only getting worse and some bumps she gets on her face. I sometimes feel like I over worry but the bruising was the only outward sign she was sick in the first place before she was diagnosed. Please pray that the doctors can find the answers as to why she bruises so badly still. Her platelet counts are fine and on December 18th, her other counts were fine too and her bone marrow and spinal were clear. Something in the back of mind just say to look into this but I really don't know how else to look into it. The other results to the cytogenics test still aren't back and aren't expected back before Friday now. Love, Tracy


Saturday, December 28, 2002 at 07:27 PM (CST)

I am just checking my guestbook and looking back over the last journals and wanted to share with everyone how thankful I am right now. God has been so good and has just made a miracle of Katia! This could not have been done without God's grace and the power of prayer. People all over the world have been praying for Katia and sending her cards and it has just been so touching to her and us. I think Sharayah and Tatiana have really grown a lot by this experience and are very greatful just like we are. I think back to the 2 years of Interactive Media school we took and think we should have taken nursing school but God has plans for everything that we may not yet understand and some things we will probably never understand. I know I have become stronger and I have more faith now than ever before. My concern for Katia right now is the amount of bruising she has on her legs and some on her arms. They have taken some bone marrow from the bone marrow biopsy and sent it out for a "cytogenics test" which I don't know much about. The results were supposed to be in on December 24 but they are still not back as of today. I will update this with those results. Love, Tracy


Friday, December 27, 2002 at 07:58 AM (CST)

We had a wonderful Christmas at home! We were so happy to be together. Katia was just running around here acting like a typical two year old which just made us feel so lucky. This has been such a hard year for our family but because of friends and family we ended the year on a good note. When someone ask what we are most thankful for, it would have to be the healthy Katia running around AND our friends and family. Some of our friends are new friends that I feel like we have known forever. I am especially thankful for the knowledge I have picked up this year and the compassion for people going through this and many other illnesses that just really can tear a family apart. I, Tracy, am personally thankful for my husband and kids. They have really held this house together throughout our extensive stays at the hospital. I never have to come home and "catch up". I walk in to a clean house, help unpacking and a family that really tries hard to be of help to me. God has blessed me beyond my dreams with a husband I wished for over my life. I always prayed I would find a husband to love me and take care of me and really make me feel special. Myron goes beyond that! My kids, although they do regular stupid stuff sometimes, have really shined throughout this trial for our family and proved themselves as they have grown through this. People always ask how they are doing with this, they have really matured and gained an understanding for what others go through as well as learned to appreciate small things and everyday happenings. God has blessed this family and is using Katia to reach many others to make them aware of this disease and how each person can help. I pray this year brings good health for Katia and happy times for our family. God Bless each of you! Thank you for checking in on us. Love, Our Little Family :0)


Thursday, December 19, 2002 at 09:11 AM (CST)

Katia had a bone marrow biopsy yesterday and it was ALL CLEAR! Now we can relax for a bit. Her blood counts are all good and her marrow and spinal fluid. Katia is running around and happy and ready for Christmas. I still can't get over how happy she was at Disney. I am so glad we were able to participate in R.O.C.K Weekend. I hope everyone has a wonderful holiday with their friends and family. We will wake up Christmas morning happy and ready to start a new year in a couple weeks. God Bless each of you. Love, Tracy


Tuesday, December 17, 2002 at 09:13 PM (CST)

I realized today that we came home a month ago on the 15th!! It has been busy but I am so glad we are staying home. Katia has an unplanned appointment tomorrow. I am not sure what they are planning to do but I will update you. Check out her new pictures if you haven't seen them. So many people have showed us kindness this season it just lets me know we are truly blessed to have such wonderful friends and family. Thank you to each of you and God Bless You!


Sunday, December 15, 2002 at 06:18 PM (CST)

WE HAD A BLAST AT DISNEY THIS WEEKEND!!!!! I will update pictures probably tomorrow. We took over 150 pictures so I need to sort through them and correct some color issues on some but I will send them via email and put some new pictures on this webpage too! What a blast. Katia was so happy to arrive at Disney and then she just really stayed happy the whole time. Sharayah and Tatiana had the time of their lives. They met a lot of new friends and really just had 2 days of total fun. The park was cold today so we didn't stay till closing but we are all tuckered out and ready to wind down the weekend. That was a super trip!!!


Friday, December 13, 2002 at 04:41 AM (CST)

Well today we will head over to Disney for the R.O.C.K. weekend sponsored by the American Cancer Society! Katia and the kids are so happy. We are too! Saturday will be our 15th wedding anniversary and I can't think of any better way to be spending it. Look for new pictures when we return. I just pray it doesn't rain the whole time. Katia is doing well right now. I look at her and can't believe all she has been through this year. She is so strong and happy-go-lucky and that makes me strong and happy. Love, Tracy


Monday, December 09, 2002 at 08:44 AM (CST)

Katia is doing good here at home. She is running around and really getting excited about Christmas. We are supposed to go to Disney for the weekend (which is also our 15th wedding anniversary) for a "Rock Weekend" with the National Cancer Society. Friday will be meeting other kids and their parents and Saturday will mainly be classes and gatherings, then Sunday we will go to the park! That will be Katia's first trip. She is so excited. Sharayah and Tatiana have definitely helped in getting her ready to see Micky and friends! I will try to update this page twice a week and add new pictures once a week. We hope each of you are getting ready for the holidays and will be able to get together with your friends and family. We are so excited for so many reasons! We feel very blessed!


Saturday, December 07, 2002 at 11:02 AM (CST)

KATIA'S SPINAL FLUID IS ALL CLEAR!!! WE ARE SO HAPPY AND SO EXCITED NOW GOING INTO THE HOLIDAYS WITH SUCH GREAT NEWS. SO MANY PEOPLE HAVE BEEN PRAYING FOR KATIA AND SHE HAS GOTTEN GIFTS AND CARDS IN THE MAIL :0). I AM VERY THANKFUL THAT KATIA IS SO YOUNG AND HOPEFULLY SHE WILL NOT REMEMBER ALL THE BAD THINGS SHE HAS BEEN THROUGH BUT WILL ONLY REMEMBER ALL THE LOVE SHOWN TO HER. THAT IS WHY WE SAVE ALL THE CARDS, I PRINT THIS GUESTBOOK, AND WE KEEP A SEMI-DAILY JOURNAL FOR HER. I JUST WANT HER TO KNOW ABOUT ALL THE LOVE SHOWN TOWARDS HER AND OUR WHOLE FAMILY! GOD HAS BLESSED US BEYOND MONEY. HE HAS GIVEN US FRIENDS AND FAMILY THAT ARE SO OPENLY CONCERNED AND LOVING! WE APPRECIATE ALL OF YOU AND WILL MAKE SURE KATIA KNOWS ALL ABOUT EACH OF YOU AS SHE GETS OLDER! I AM GOING TO ADD A PRETTY LITTLE PIECE OF ARTWORK KATIA DREW THIS MORNING ON THE PHOTO PAGE SO CHECK IN. LOVE, TRACY



Thursday, December 05, 2002 at 04:01 AM (CST)

Well today is the day! I am so nervous right now and Katia is laying here sleeping and snoring! I have picked up around the house and just tried to organize my thoughts but I always end up here (online communicating with my friends and family). You are so dear to us and you keep me sane by dealing with my updates and pictures and my new little guestbook. Katia has a similar book which goes to the hospital with us and the nurses, other patients and visitors sign it each time they come. It will give us something to hold on to so she can read through it later in life. I like keeping hold of things. I just wanted to thank each of you that stopped by here and read this little message. This simple thing really does make me feel better and when I feel better, the WHOLE family feels better. Our saying is "when mommy is happy, we all are happy!" I love you guys! Love, Tracy
PS
Since we aren't at the hospital so much, if you wish to send a card, our address is:

Katia Solomon
10802 W. Hillsborough Ave.
Tampa, FL 33615

The hospital still forwards mail though!


Friday, November 29, 2002 at 08:33 PM (CST)

HAPPY THANKSGIVING! A little late but we hope everyone had a happy day. We had a good time. We were just so happy to be together and out of the hospital. We didn't expect that but it was great! Through all of this past year we have learn to be thankful for everyday but Thanksgiving is a time to really make sure everyone knows how thankful you are to have them in your life. We are so thankful for all of you that have helped us through this by cards, phone calls, prayers, presents for Katia and just putting up with me (Tracy) when I need to run my mouth! I know that is a big thing. Katia had a fun day with her cousins and sisters. They played out on the back porch at my sisters (it was kinda cold) and played in the room and around the house. They made quite a mess but they had fun. She ate good and had a good attitude. Her morning started off very bad trying to poopie but once that was out of the way the day got better. I really thought we would have to take her in because of all the pain in the morning but once she was done, she just was so happy! That is what amazes me! She gets over things so quickly. I am thankful that God keeps her comfortable as much as he does. I am thankful she has such a strong personality and determination and I am most thankful my family! Myron and the kids keep me strong. Also the rest of my family from Myron's parents and my sister and my brothers and sisters-in-law! I have an amazing support group. If that wasn't enough, I have the world's greatest friends! I love all of you. Thank you for being you!


Sunday, November 24, 2002 at 07:56 PM (CST)

Well, hello again. We are a little concerned about Katia. She is acting okay but has quite a bit of bruising and a rash coming up on her arm. She seems to wear down quicker than she was the last few days. Her next appointment is December 5th (if I need to go earlier I will) so I want to make sure they check her spinal fluid and bone marrow for leukemia cells. I just want to be sure she is okay. We are going to lay low for thanksgiving (we are going to my sister's house) but we have a lot to be thankful so we will try to have the best time possible. It seems very hard to get into the Christmas spirit this year. Things are tight but at the same time it seems Christmas has gone away from its true meaning in most peoples' eyes. I want the kids to have a good Christmas but at the same time I want this to be a special Christmas in their hearts. I would like to hear your thoughts on this, too. We have grown to treasure each day with Katia, each look she gives, new sentence she forms, new little moves she does. I just feel like I am always capturing pictures in my memory. It tears me up to think about it. She is such a special little baby and I hope she can feel that about herself. God sent me a little angel 2 1/2 years ago and I am so thankful for her. She is a bright star in our family. The kids adore her and want the best for her. There is no jealousy with the attention she gets. They want more for her. I just wanted to share that with each of you. Spend time with your families during the holidays. Don't stress over things that will pass. Make memories, take pictures, play games and just have fun. I know we will be making this a very special holiday season in our house. Love, Tracy and the whole Solomon family!


Friday, November 22, 2002 at 04:00 PM (CST)

Katia is home and running around! It is so nice to hear her screaming (for the most part) with joy. She is using the bathroom right now without crying (she is on quite a bit of laxative) but I just am glad to see her playing with her sisters and acting like her old self. I am going to start using this webpage more for updates because I like the idea of others being able to read eachothers messages. You can still email me at TMSOL87@AOL.COM but I like using this page. I will still use the same method of emailing photos as I always have. I haven't taken too many photos recently because I have been so busy (no excuse!) but I will pick back up. My dad is coming in on Monday so that will be a big photo opportunity! :)
Anyway, I hope you enjoy this webpage. I will try to change it around to make it fun to visit. Everyone take care of yourselves and know how important you are to us! Love, Tracy


Thursday, November 21, 2002 at 03:13 PM (CST)

Well we went to the clinic today and all went well. I AM SO HAPPY. It looks like we will be home for Thanksgiving and we have so much to be thankful for!!!! NOW I am looking forward to the holidays! Please pray for Katia's little friend Christina. She is in ICU right now. Her blood pressure dropped and she has an infection from what I understand. She is such a sweet little girl with a very kind family.
KATIA SENDS A BIG HUG AND KISS TO EVERYBODY AS A BIG THANKYOU FOR THE PRAYERS, CARDS, AND WELL WISHES!

WE LOVE EACH OF YOU!


Wednesday, November 20, 2002 at 04:38 PM (CST)

I am so happy that so many people have read this page. I am thankful for my friends and family. I really love you. Katia is home and doing well. Tomorrow she will have a clinic visit and we always pray that all goes well. She is beginning to have a lot more pain than usual when she has a "poopy" diaper so I hope that old bacteria "CDIF" isn't coming back. Twice she has been hospitalized close to three weeks for this and we don't want that. Her Grandpa (my dad) is coming in this coming Monday so we are looking forward to that. He always reads to the kids and sings all his patriotic songs to them. They love that (well at least when they are little). Well, keep checking back here. Love, Tracy


Monday, November 18, 2002 at 02:53 PM (CST)

This last visit to the hospital was horrible. Not the visit but the part that took us back to the hospital. Katia had been doing good for almost a month. She was eating good, sleeping good and her blood counts were coming up on their own. On the night of November 3rd she started running a "slight" fever of 100 degrees. Within one hour we were rushing her to her hospital (about 45 minutes away from our house) with a fever of 104 degrees. In the car, Katia stopped breathing for about 2 minutes. We headed for the nearest Emergency Room. On our way there, she started breathing again but not very well. By the time we reached the ER which was only a few minutes away, her temperature had raised to 107.8 degrees! She looked horrible and was delerious. We were so scared. They called an ambulance and rushed her to All Children's Hospital where she receives her treatments. It ended up she had 3 very bad bacterias which were cleared up over 14 days of antibiotics in the hospital. We are back home now and she is doing good. She still has daily problems with her bowel movements but we are greatful to have brought her home. We were scared we wouldn't be able to bring her home again. If you have the time and would like to bring a HUGE smile to Katia's face, send her a greeting card. She loves mail!! We love to see her get mail!





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