History

Monday, April 5, 2021 3:17 PM CDT

I wanted to come by here and leave a post as it has been quite some time.

Most people just follow Katia and I on my Facebook page (TracySolomon) but since Caringbridge has done such a wonderful thing here by hosting Katia’s journey since 2002, I wanted to stop by and leave a new post.

We are still so blessed with each day of Katia’s life.

Her day to day doesn’t change much as her health has remained much the same with the side effects from leukemia, treatments and rejection of her transplant.

However, Katia turned 21 this past January!!!!!!!!

I am going to try to change the photo at the top of this page to a newer one.

Thank you so much for stopping by and your continued prayers along the way all these years.

Love, Tracy and Katia

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

UPDATE SUMMER 2016

Long overdue update for sure but in so many ways, health wise, Katia remains pretty much stable. Here and there medicines get adjusted. We try to wean down on some, adjust others due to her body’s reaction but the fact is, she still has chronic GVH which means her body has never accepted the transplant she received back in February 2004.

Katia is now 16 years old!! Hard to imagine I know

As I read back over this Caringbridge page and guestbook entries, I am not only amazed at how much she has come through but also all of you who have been right there along the way.

This journey with Katia started when she was just 2 years old and has gone on now for 14 years and so many have stood by and watched her go through good and bad times, fun and sad times and even those times of just waiting which we know are moments which seem to drag out forever.

Katia and I were talking the other day about what parts she remembers from early on in the hospital and the people who helped take care of her. We were laughing about some of the funny events that probably weren’t so funny at the time but now looking back are something we can laugh about.

The fact is, Katia is now 16 and we are so blessed to be able to continue this journey with her by our sides. The miracle of her life is never forgotten. The struggles along the way and even her continued daily battles reminds each of us how precious life is and the value of living each day to its fullest.

You may ask, what is Katia up to now?

The best way to find out is from Katia herself, right? Which brings me to my next subject.

It has been nearly 3 years since the last update on here and Katia is getting older and older. What is she like? What does she like to do? It would be really cool to hear from her!

I imagine that is what you are thinking, right?

So, Katia is going to be taking more control of “the reins” from this point.

Katia is going to start her own Caringbridge Site which we are working on right now.

Here, she will be able to share some updates, thoughts, random things, etc.

Also, some of you may already know how much Katia loves to draw and design, create and sew and bring “creatures” to life to share their stories.

Between the two of us, we are bringing some of these stories “to life” in the form of short stories so we’ll post some shorts on her new Caringbridge as a preview to our project. They’re a lot of fun!

So, check out Katia’s very own Caringbridge, Katia's World to follow her along.

Lots of love,
Tracy (Mom)

PS I get to be there too. I help with edits, grammar and all the boring stuff…

October 13, 2014

I thought this update would be long overdue but when I read my last update from a few months back in May, I have to say to go back and read that post because so much of that rings totally true for now as well and this update is only going to build upon the update from May's post.

Let me answer some concerns on my "absence" from posting, updating, replying and missing out on some pretty important events in the lives of others. Like I said earlier, skipping down and reading some previous posts will give you some background information on this but as I have mentioned earlier, there has been and continues to be ongoing cognitive function loss which has had quite an effect on my memory, day to day routines, concentration and just a number of things we typically take for granted being able to do without any thought.

I am not going to go into a lot of detail but I have had to make a lot of changes over the last few years because this didn't just happen overnight and an answer hasn't been yet which we can see isn't going to be simple.

I have always been organized but that word has a whole new definition with me. I have notes and back up notes for everything and then those are backed up. The thought of handing me something you don't want lost is like handing me chocolate and expecting it back... Yeh, right.

There are many ways I have learned to work around or with my issues but it is very tiring and time consuming. I basically start each day reading over previous days and then moving forward. As time goes on, this window of time gets smaller or my ability to concentrate without getting totally frustrated gets much shorter. Some days, very short.

Of course, I am reminded everyday how much worse things could be. I have seen it first hand. I am grateful I was already used to being organized also.

There are times my organizations totally fail. My books have names. My book I have with me all the time is small so it is called my "Little Brain Book". Whatever is written in there is then moved to the bigger book which I don't usually take anywhere and it is called my "Big Brain Book". (I didn't say they were creative names).

Anyway, there are those times I totally lose my marbles and I mean I lose my book or books and I am looking everywhere (it is not unusual for me to be looking for some lost item...).

Somebody will have pity and ask what I have lost and my reply is, "I can't find my Brain Book!" Next question, "Which one?" Me, "The little one."

These are those conversations you don't plan in life. I have volumes of Brain Books and they each have indexes and color codes. I am lost without them.

Okay, got a little sidetracked. Katia says I talk like I am Google (that means I ramble off facts) or I get so easily sidetracked like a dog with squirrels ( no explination necessary).

So, Facebook? There have been a lot of changes on my Facebook. The biggest I guess is I don't hardly go on there. More and more it was becoming a source of stress. My "Wall" was becoming more unrecognizable to me so over the last year or maybe a bit longer, I have been letting go of those I didn't recognize their name or picture.

I know this may sound mean or strange but I guess it is just one of those things maybe some people won't understand unless they experience it.

I have had people come up to me that I didn't recognize their face but then when they said their name, I realized who they were. I am never shy to admit I don't know who someone is. There are times it isn't taken well but I would rather be up front than to be insincere in what I say.

It can also be quite scary at times to lose track of people, a place or realize you forget what you are doing more often. As a very independent person, a writer, an avid reader, researcher and one who once remembered anything I read or wrote, this is all a lot for me and I have not settled on accepting this as a new way of life or allowing it to just continue down this path.

I still read, research, write and do everything but it isn't the same. I can see where I lack in simple writing and have completely taken a break from any writing with research or a book I had been working on.

Okay, how is Ms. Katia??

Well most everything in the update from May is continuing. There have been other changes though.

It is well known Katia has been in treatment since 2002. That is a long time. Her life has revolved around treatments, recovery, side effects, feeling bad and more treatments.

Nobody could go through everything Katia has been through and not have all of the physical side effects including ongoing pain, weakness, fatigue, headaches and then the medical side effects of her stunted growth (3' 3"), severe osteoporosis, chronic graft vs. host disease which affects multiple parts of her body in different ways at any given time.

There is also vision problems, learning delays, social delays, cognitive function delay and loss and the list goes on.

Most recently, all of these things and more have had a very large impact on Katia emotionally and mentally. Over the years, she has had times of emotional struggles and with help has always come through.

Katia is 14 and with different delays her ability to really process information, understand stress or struggles and communicate her feelings and/or concerns is much closer to a 2nd or 3rd grade level.

She has excellent doctors, specialists and everyone has always been very understanding of Katia's needs and know Katia extremely well.

When I listen to Katia explain things to me, anything, I have always been able to understand her. I understand her writing and I just feel blessed to have her in my life.

I can also see through her drawing, writings, conversations and when she gets frustrated because her words may not match what the picture is about or the meaning.

I have talked to her about this and we are working with a therapist. Katia really likes her a lot.

Katia and I are working on ways of communication. Simple things many people take for granted but for those who get them mixed up, it makes a lot of difference. I have let her know my words are all mixed up because often times the words I think aren't the ones I later read on the paper. So we will work together.

Communication is such an important part of everyday life. We have to describe how we feel, if we are sick, answer questions, talk to friends or family, etc.

And lastly, there have been changes in Katia's Meds due to the fact her body has just been on so many meds for so long and it is simply wearing down. We are hoping her GVHD a will not flare up with these recent changes. Her heart rate had dropped too low and her blood pressure has had issues. Katia has had ongoing issues with remaining puffy due to steroid use constantly since early 2004. Her face, neck and head getting puffy becomes very concerning though.

Sorry if this sounds choppy. I am having to pull from notes and Katia had a rough night last so.... hopefully spellcheck isn't doing anything crazy.

Anyone I have cut from Facebook can still view things. It is public. With Facebooks many many changes, many of us don't see updates friends may post as Facebook now selects what they think we would like to see. Personally, I can't blame Facebook for my missing posts because I am not always on there but please don't hesitate to message me on FB and I will do my best to respond in a timely manner.

I am so very grateful to those who have messaged me when regarding things they know I would urgently want to be aware of.

Hopefully between the last few updates and this one, things are a bit more clear?

Thank you for continuing to follow Katia and please keep all of those who are still fighting horrible illnesses as well as many who are newly diagnosed in your prayers.

Always praying for cures for cancers and so many other diseases that tragically change lives and take loved ones away from so many.

Love, Tracy and Katia

May 2, 2014
Posted on Facebook - a few add ins here.

I don't really get on Facebook much these days and scroll through so I don't see a lot of what is posted.

Please feel free to message me on here though, I see those and try to reply ASAP.

I tend to post more from outside of FB or just jump on and off.

I really need to update Katia's CB site but it gets to the point so much is going on the update is like writing a book and I know it is a lot for those of you who have followed and care for her so much to take in.

Most recently, Katia's GVHD (rejection) has seemed to be worsening and finally ended up appearing all over her skin. She has been much more puffy and sore from the inside out. Her appetite has dwindled down and she feels wiped out from the time she wakes up.

She was admitted to have an upper/lower endoscopy and colonoscopy with biopsies taken throughout. Skin biopsies were also taken. An ECHO showed no real changes on heart (you can read back in history to find the last cardio findings) which is good because we don't want that to worsen - her BPs have more regulated. Of course it would always be nice to here her heart is all good. Katia has been on medicines for so long to keep her GVHD from flaring up (steroids being one) that side effects of course are expected. T may be that her body is not responding to them anymore and allowing the GVH to advance.

We just go forward one day at a time like we always have and always have faith.

As we have always known, there are so many facing struggles, similar, bigger or things we can't see but we know people are struggling through.

Our prayers are always with those in need of strength, physical and emotional needs, help in making very difficult decisions or in whatever way that is needed.

I do see posts in need of prayers and even though I may hit "like" which I still think FB can come up with a better button, know my heart and prayers are with you.

I love seeing kids who have gone through treatments and are now grown and living their lives.

I also am grateful for those who have their little angels and loved ones in Heaven but still take the time and effort to follow Katia and others. That amazes me really.

I love reading great news!!!!! Yes, Kimberley Ann Pool your recent news took the cake on good news! I love the "K Family" and need to meet up someday!! Especially now that it is growing more:)

So, even though I am more quiet here than usual and not writing much right now, I am around.

I am on Twitter but not as much as usual and I keep up my breaking news (and more) site as well.

We are hopeful things will return to a more "as they were" way with me having the ability to remember, research and write as well as other cognitive issues which greatly declined hopefully improving. For now, I have grown quite used to keeping numerous different books for note taking and being very detailed as I write notes. More and more, my days start reading over a good amount of previous notes to get back on track for the day ahead. OCD comes in quite handy now! It has always been handy tracking Katia's meds and labs along the way. I don't see OCD as a disability, it is an advantage:)

Dealing with ongoing kidney stones (they just keeping coming back no matter what we or the doctors try - I have accepted I am a stone maker), cysts and other fun little things that don't belong in me doesn't allow my body to go the same speed or amount of time as my brain would like to push it. They continuously argue... I just focus on all Katia has gone through and it makes what I go through seem, small.

So, we are always praying for Katia's health to allow her more days of feeling better and able to do more. GVHD has really been a mess for her lately and she has had a lot of pain issues on going. Her ability to really go places and walk around much or even be out is just not that good. She wears out very quickly.

She hasn't been able to do much in the way of her art, drawing or sewing and has been a stranger to the kitchen. No donuts lately. But, she still makes little surprise lunches or snacks with the sweetest messages:)

We hoping to get a little break with her for a few days so she can just relax and have some fun without having to worry about anything. Katia (and me) for that matter go along in spirits so we take breaks and then try to get energy burst to go again. It is rare she can really just be a kid. Although she is 14, she is still more around a 7 or 8 year old in most of the things she likes to do,

It is always (can't think of a word here) to be somewhere with Katia, who remember ALWAYS wears cat ears and stands just 3' 3", when people come up and bend down saying how cute she is or talk to her like she is 3 or 4. We are pretty used to that or people talking to me, about her like she can't speak. She just stays quiet usually or smiles. I have to remind her, "You are the one who is 3 feet tall wearing cat ears...".

I have always urged her to write and illustrate her story behind the cat ears because it is much more than people would imagine and definitely part of who Katia is. I adore her:)

So, that is a reasonable update on some of what has been going on. I think I will just copy and paste this to the CB site and maybe fill in some blanks over there shortly. **I have done that here.

Thank you for always keeping up. When I posted the pic of Katia in the ladybug dress, it really drove home how long Katia's CB site has been going and the length of time some of you have followed. Plus, it aged me...

Lots of love, Tracy and Katia of course:)

February 5, 2014

Wow! An update... I know, it takes a while sometimes.

Today is a big day! Ten years ago, Katia received her transplant! We never take light of the fact everyday is a miracle we have Katia here with us.

A mother, we have never known, donated her baby's umbilical cord blood to give someone else a second chance at life. That someone was our daughter, Katia.

I remember when Katia relapsed in August 2003, my heart sank and it felt like the world rushed by like water going down the drain of a tub. I knew our only chance was getting Katia quickly into remission and also finding her a marrow match before she relapsed again. Both of those things were huge milestones as her body was full of leukemia cells and we were found to not be matches.

It would be many drives, lots of pleas, volunteers, donors and complications later, a donor was found around Christmas 2003, not a perfect match but Katia was at a point, we had to move forward.

She was close to turning 4 at the time, had gone through so many treatments, had spent months in the hospital straight and we found out there was a serious complication yet again. A fungus appeared in her lungs. We couldn't go into transplant with that because her counts would be so bottomed out for a length of time, it would kill her.

After weighing the options, she was treated and a part of her lungs were removed to get the fungus out. She would need to remain on anti-fungal meds for a long time post transplant to protect her and lower the risk of its return.

On February 5, 2004, we moved forward and Katia received her transplant, a 5/6 cord blood match.

Then we started the big counting of days and waiting for the graft to take place (her body to except the new marrow).

Shortly after transplant, Katia started showing signs of GVHD (rejection of the transplant). She was put on steroids and immune suppressing medication to help her body not fight the transplant and give it a better chance to accept the transplant.

It has been 10 years of that ongoing battle with Katia continuing to deal with GVHD and going up and down on meds to help her body along the way.

I think the baby who the cord blood came from must be a very strong child because the cord blood certainly has put up quite the fight. Katia is quite strong-willed as well:)

Over the last 10 years, Katia has been such a blessing to our family and those who have been involved in her life. She has touched so many lives of those who have not only followed her journey but have become part of her journey through prayers, encouragement and love.

Katia is quite the artist and enjoys her sewing, designs and drawing. She challenges herself and never ceases to amaze me.

Her size, pains or health issues have not stopped her from doing what she loves but instead have added to her creativity. She will find a way to do something instead of backing down from it. She is my hero.

People say Katia is lucky to have me to take care of her all the time. I have been so blessed to have Katia to help me grow, find courage when I felt weak, find hope when things seemed dark, turn to faith when faced with discouragement and find humor when laughter was the best medicine.

Thank you to everyone who has shared in our journey through the ups and downs, the laughter and tears and held onto the hope this day would get here.

Lots of love, Tracy and Katia

UPDATE:
November 23, 2013

Can you believe it is already the end of November?? Crazy!!

Where has this year gone?? This means Katia will soon be 14 years old (in January). She is always my baby though:)

So, I wanted to get on here and do a bit of an update since it has been a while. I always think, "I should go do an update..." but not a lot changes with her and I am still dealing with a lot of the same memory issues so... well, that equals out to no updates.

Katia just had an IVIG infusion due to her numbers going quite low. Anytime we do that, I am always reminded of how thankful we are for those who regularly donate blood/blood products. IVIG would not be possible without those. This is derived from the antibodies of tens of thousands of donors, so thank you so very much.

Katia is now nearly 10 years out of transplant! Yep! Although her GVHD (graft vs. host disease) has continued throughout all of this time, the fact is she remains in remission and is here with us. The good far outweighs the bad. We are grateful for her all throughout each and everyday.

Katia is a blessing in so many ways.

Those that follow me on Facebook know Katia is very much into sewing and drawing and this is far more than a hobby to her. It is a therapy as well and something that allows her to express herself. It is also something she would like to do in her future. The girl has serious goals and ambitions and it is exciting to see her grow in these talents. She has a real gift in creating some fun and unique pieces of art and some very good drawings as well.

I am so lucky, as her mother, to have been blessed to spend so much time with her throughout these years and watch her blossom and become the "Katia" she is. She is definitely unique, caring, talented, smart and so much more.

I have learned so much through the years and one of the most important things is so often, children (and adults) with disabilities do not want to be seen for those disabilities but for the people they have become through the struggles and obstacles they have gone through. Katia is the definition of perseverance.

She has had quite a bit of ups and downs lately with her health and feeling bad, sore, dizzy and just overall feeling quite puny but it hasn't stopped her from doing the things she loves and doing her best at her school work. She does have days she just wants to "lay low" but that typically doesn't keep her in bed. She hates staying in bed and usually finds her way to doing something at the computer or a table and just quietly working on a task.

My health has stayed pretty much the same as well. I had surgery to remove four more stones from my left kidney that were unable to pass for months, some longer. The doctor said more would form almost immediately. He was right. I did start on a supplement to hopefully slow down the process, so we will see how that works.

The writing is still on hold and it takes quite a bit for me to do these updates so even with proofing, if things seem out of order or there are typos and such, please excuse them.

My main thing I would like to hopefully figure out is the issues with my cognitive functions, word losses, short term memory, research, writing, etc. I have had numerous other issues that concern us with pain, sensations, numbness, shortness of breath, my ongoing, never ending cough and constant nausea but the cognitive issues have stopped what helps me deal with getting through most everything else. I love to write.

We did find out I am allergic to basically everything indoors and outdoors so it has helped to be treating that although it hasn't dealt with the shortness of breath and cough. It has helped in other ways. If I wasn't a complete clean freak before...yeh, more so now. Now, if we can just get rid of the grass in Florida.

Onto other news, Katia has a new best friend by the name of.... BATMAN!!! Yeh! There are some pics on my Facebook. She doesn't know this yet but she will be seeing him again very very soon so I will post more pictures:)

She adores him!

He makes her very happy which makes us very happy:)

Thank you for checking in on Ms. Katia. Hopefully the next update will be sooner than later.

Lots of love, Tracy

UPDATE: July 8, 2013 12:35 AM

Thought I would post a short update on where things stand and how things are going since we have been home from the hospital.

If you follow me on FB, you have seen recent pics of Katia. We always appreciate being home.

We are always hopeful and praying for the day Katia can feel better. In her words, more "spunky" and "stronger".

She is worn out and that upsets her.

She had plans to try to have a fun summer which her ideas of a fun summer are far different than many others' plans.

It would just be nice to see her be able to be a kid.

As I see that or when I think about it, I am quickly reminded what a miracle it is to have her with us, 13 years old.

Challenges and hard times have given Katia a strong character and sense of compassion.

I am blessed each day I spend with her, my mini-me.

At the moment she is just very worn down, having continued issues she was hospitalized for and it is building up anticipation for her upcoming cardiology follow up and repeat ECHO.

She gets very nervous with a lot of this. She has blackouts of sorts, dizzy feelings and gets quite weak and has just become overly tired.

Thank you for your continued prayers and kind messages.

I don't post a lot because, emotionally, it is draining. Physically, this has taken quite a toll on me and overall we are facing many other challenges at once.

I tend to get quiet, do research, take notes and just feel best when I am more prepared what we are faced wit or may be faced with.

Thank you for being understanding.

I try to post pics to show she is still smiling, up (when she isn't sleeping) and just being Katia:)

Lots of love, Tracy

June 26, 2013

Happy to have Katia home! Wanted to put together some type of an update to let you know what is going on.

It is kind of difficult to let do that these days because as time progresses with Katia and she continues to be on many of these meds to fight rejection from her marrow transplant, the effects from these meds are very hard on her body and its organs.

Bone Marrow Transplant has not been around all that long and as it improves and the side effects of cancer treatments improve, the necessity for long term meds or even many treatments and medication during cancer treatment has changed.

The goal often time during fighting cancer is to simply rid the body of cancer and to survive. That is optimal and to get through cancer treatment is amazing and many are not able get through.

However, getting through the fight for cancer as well as having a quality life is a fight for many years after treatment.

This is why it is so important to continue research both for cures and the treatments we are using to treat cancer and the effects for cancer.

As I mention this, I want to also include many diseases here because this is the case when fighting many horrible, life altering diseases. Short term and long term goals in treatment.

Okay, so back to where we are.

Every case is different.

We have always understood the effects of treatment. We have always understood when Katia didn't find a perfect match and she rejected her transplant, the effects of that as well. We never knew how long that would go on. Nobody can predict that. We are thankful for every day we have with Katia. She also understands that circumstances behind her transplant, her treatments and why she has the battles she does.

As Katia has gotten older, she knows what it means to not find a match, to not make it through treatment and therefore she is always more thankful than to complain about not feeling well. She feels bad for people going through even minor difficulties or facing tragedies such a natural disasters, loss of loved ones, pets, hunger, so many difficulties. Katia's own fight has made her very compassionate.

That compassion also has made her very in tune when things seem "not right" with her own health. She understands the fragility of things.

Over the past few months especially, Katia has felt "puny" and "not well". It has been noticable and she has just seemed diminished.

We have made some changes to her meds. We can't bother Katia's steroids because her body just won't allow it. Her GVHD (rejection) flares up at any change.

Her energy has gone down continuously. She was feeling short of breath more and more.

She has continued to be more nauseated, more puffy and generally, not well.

She began having more chest pains and her blood pressures and heart rate were increasing to climb up.

She has always been followed by a cardiologist as well as numerous other specialist along the way and although things don't always appear perfect, they were pretty good for someone who has been through and continue to go through what Katia has.

As school was coming to a close for Katia, she was hoping to have a good summer. For Katia, that doesn't mean camping, going a bunch of places or one activity after the other but it does mean hoping to feel good and being able to do fun things.

However, after school ended, her health totally slumped.

On the 17th, her face suddenly became puffed up and added to her pressures that was quite a reason for concerns.

She went in and with her labs, scans and appearance, she was admitted.

There was fluid on her lungs, her breathing was diminished. Her lungs sounds were diminished.

One concern was why was there fluid on her lungs.

We needed to deal with the high blood pressures as well. Change in med was ordered and with an increase in that med, the pressure started to come down.

With that change, the fluid was nearly gone.

It wasn't 100�hat was why but it would appear so.

We repeated scans a few times, different ways and although there are still other issues there, the fluid was almost all gone.

Just getting that fluid off Katia's lungs made her start feeling different, better.

Lowering he oxygen was some first steps to take but it was slow.

Part of the problem is Katia's heart function has weakened. Due to this, her heart is having to work harder to get the job done.

This does explain nearly every symptom.

We have a plan and we will continuously checking on progress. We are keeping a closer eye on pressures and heart rate at home and Katia's energy level (which is still very low but better than in was at time of admit) as well as puffiness.

One of our biggest concerns has to be Katia's state of mind as well.

As a very compassionate person, Katia also absorbs a lot and can get very worried. She has been around medical information and all of this since the age of 2 and she is 13 now. She knows her own health better than anyone. We have never been ones to hide anything from her and we aren't doing that now either.

This is in no way a dooms day for Katia but it is a time of concern for her. We hope to see improvements in her overall energy, nausea, appetite as well as improvements in her functions.

She still wants to have a good summer and just feel better.

It was awesome getting her home to Ling Ling, Fozzy and Monty. They were just as happy to see us as we were to see them!!!

They are circling us this morning and will probably not let us leave the house again....

It was nice getting up to the coffee pot today and Katia is happy to have the kitchen back and plans to make donuts today:)

She missed her sewing box so I am sure that is in her plans today as well.

We are forever grateful for your prayers, concerns and love.

Sometimes it is just really hard to update because I don't know what to say when we are just waiting or things aren't going as planned.

We have learned along the way to just wait and see how things go and if it doesn't work, try something else. I know people get anxious for updates but anxiety is often one of our worse enemies. Anxiety can lead to fear and I was really just trying to be at the hospital, in the moment and carry on some of our normal day to day activities when possible and other than that, focus on giving our input and going over notes to see what ideas we had.

Katia learned how to spelled B-O-R-E-D in the hospital... so there was a bit of education as well:)

They didn't have much in the way of crafts to make monsters, creatures, play games that "Katia" likes and such. We know she is a little different but now the Child Life people know as well. They are AWESOME people!!!

If given the opportunity, I will take things up for teens to do though. It gave us some ideas being there.

Lots of love, Tracy

Isn't this an awesome pic?? Love to see her smile!

April 12, 2013

Been a while...

Quite a bit going on so here is a bit of an update.

Katia has kind of been up and down with how she has been feeling. We realized the new type of steroid she was on really wasn't doing what it needed to do which was throwing in her off in many ways. She was constantly nauseated, in a lot of pain and her skin wasn't doing well. There was more going on but the point is, she needed to get back on track. Her cortisol level was really low as well so she was put back on prednisone which obviously her body seems to be addicted to. She is able to eat again and it has helped in a number of ways.

Pain is just an ongoing issue with Katia but she has better days than others. Like me, she tends to do things that over stress her body. She is one that likes to rearrange her things in her room or dig around for something if she can't find it. All of this ends up in a sore back. She also "popped" something in her back which was quite painful. Katia definitely doesn't let things stand her way.

Her sewing hobby is great and she makes some incredible creations! Staying in one place for hours isn't too "body friendly" and she realizes that but usually when she is done.... She is incredibly creative though. I am going to post some pictures of more things she has recently made. They will be on my FB page. I am not sure if I will make an album or just post them as Instagram pics yet. Depends on how many she pulls out (which she is doing as I type).

She just got another dose of IVIG as her counts dropped and will have another infusion in before the end of April as well.

The cardiologist just checked her out and her heart appears to be unchanged which is a good thing seeing all she has been through. She came home on a holter monitor to observe a bit more which we will get results from later. She also did another DEXA Scan which is a regular thing in her case due to her Osteoporosis so we should get those numbers back in a bit as well.

As I mentioned prior and some of you may know, I have quite a few issues going on myself with both female problems and memory issues.

First, the memory problems. So, I said I had upcoming tests to see what was going on with my memory and cognitive abilities. Well, that went (I am trying to look for another word besides "horrible"). It didn't go well. I knew it was going bad while the testing was going on. All I could do was continue through and do what I could and do my best. When I left that day, I was really upset.

However, I didn't expect the results to be what they were. Let's just say, it is being followed up. There is obviously more of an issue than we even thought. It is and has been having an effect on our daily lives, we know that. Myron has had to become the around-the-clock primary caretaker here which has leaves a lot to be figured out until we find some sort of answers to what may be the cause and if this can be corrected or not allowed to progress anymore.

It is having an effect on my being able to write, research and just do things that I typically do. These are more than things I just do but also a way of expressing myself, stress relief and allowing me to clear things that otherwise stay on my mind. I have always written.

It is easy to sometimes think these memory and decline in cognitive abilities may be age related or just do to stress or things going on. The tests showed us otherwise. In my mind, I knew it wasn't good and I have known it was worsening. I had brought it up at one time to a previous doctor who wrote it off like many people do themselves or even doctors do. I wish testing had been done back then. Not sure what is next.

I am however trying to finish a writing project I have been working on for some time as it is very near and dear to my hear. It has to do with Katia's journey and my own journey. Putting aside the time to focus on writing on this project is far different than when I work on articles or other projects that I do. It is an emotional journey back down memory lane. However, it is something I had set out to do and I really must complete it. One issue is every time I sit down to write, I have to read everything I have written....time consuming and I always find myself editing then. Ugh!

The other concern has been with female issues which has now led me to having surgery this Monday, the 15th. I am going in for what should be an outpatient procedure. We hope for it to go through as that. I have been having ongoing endometrial issues, ovarian issues and bleeding. This is a chance for a closer look, further biopsies and also now having endometrial ablation done. We are really praying this can bring some resolve to some things that have been increasingly worsening and haven't been able to get worked out by other means. Please keep this in prayer.

Depending on how things are going, I will either update here or FB.

Lots of love, Tracy (and Katia)

PS I will try to get Katia's creations pics taken by this afternoon, and posted.

March 2, 2013

A bit of time has passed but quite a bit has been going on and yet again...some things are just wait and see.

Katia went and had a boost of IVIG which she really needed to help her fight off what she had been dealing with for a while. She didn't have the flu but had been sick for a while. I ended up with the flu with a few times so it really dragged things out around here and of course it is always concerning for Katia's sake and hard for me to fight off due to asthma and the fact my own counts stay low due to some of my medications. However, that seems behind us.

Katia is a delightful 13 year old!! She is really trying very hard in school and although she struggles with feeling sore much of the time and is very low on energy, she isn't one that likes to lay around and is always eager to please Ms. Michele (her teacher since 2005).

In some areas, she has shown improvement and is now in the 4th grade level and in others, especially math is still in the 1st and 2nd grade grade level which is very frustrating to Katia. She isn't so much upset about the level (she doesn't quite catch on to that) but more that she really works hard to understand and then forgets very quickly any progress she makes.

I understand this completely because my memory issues are more short term loss so I see and feel the frustration. Trying to follow a 3 step recipe is like trigonometry these days for me these days so Katia and I are a team and use our brains together.

It is difficult to know something should be simple and for me, things that I once took for granted and hope to regain, are just not there.

I still have appointments to follow through with. One of which is a memory function test with my neurologist. Thing is, we have forgotten about it twice which apparently is looking good...

There has been a lot of appointments with scans and biopsies for one set of issues and then other appointments for the neurologist and 2nd opinions so it is pretty much non-stop.

I have given up certain foods and artificial sweeteners as well as made changes along the way to do my part so I am hopeful something will click.

I once had a photographic memory for the most part and now I have to have a book or voice recorder with me all the time or nothing is retained beyond 5 minutes or so.

I do enjoy reading which is good because a majority of my day is reading and that includes reading things I have read multiple times but need to get the information again before I can write about it or move forward on a project or make a phone call.

I am pretty honest if I run into someone or have an appointment and have to answer a question that if I don't have the answer in my phone (which I tell you, smartphones are a God send!), then it is pretty much useless to ask.

The great thing though is my long term memory functions pretty well as long as I haven't a stressful day of trying to search for things I have lost (happens sooooo much - like tonight) or if I have been to an appointment and had a discussion about what is coming up next. Those seem to really drain my brain and physically wear me down. It is just mentally and physically a lot even if it is basic information.

Day to day basic things go smoother now which is an improvement.

I am extremely grateful for Myron and the fact he has always stepped in with Katia whenever necessary. He is also so helpful at both of our appointments and asking the right questions and understanding the answers. Two heads are better than one and we can discuss things later. I always have and still do take plenty of notes. Hopefully I don't lose them:)

Katia has taken a great deal of pride in keeping her room tidy which she has always been good at but she is big about doing her part and being independent when possible. She makes breakfast for herself and can make some pretty great egg, ham and cheese sandwiches using the microwave. She is always anxious to help me out in any way.

She struggles a lot due to pain and although the kitchen is set up with a step stool for her to get up and down and she has a step stool to get up and down on her bed or to the sink in the bathroom, it is a lot for her to go about her regular days.

Treatments and medications have really taken a toll on her body.

I am so seriously blessed to be her Mommy because she is such a miracle and it is obvious when I watch how much she has gone through and how far she has come. She doesn't complain about her disabilities but instead she comes up with clever ways to work around them.

Our AC broke this way so we used the time to go "camp out" on the back porch where it was cool.

It has a temporary fix at the moment but the entire unit is bad. It is a very old unit and has basically been a big part of our electric bill.

It has a temporary fix until we can figure out a way to replace the entire system.

Two days later, the electricity suddenly went out and we hoped it was just for a few minutes (which happens) but after 15 minutes I called and they said the hoped to have it on by 10:30 PM. That was hours away. Again, we went on the back porch with some candles and music (and pets who were scared) and just chatted. After about 2 hours we decided we needed food so we went and got McDonalds and sat in the car to eat and charge my phone. Suddenly Katia said, "Lights!" and she was right!

It is amazing how happy that makes a person:)

Then....today, we get up and all TV, Internet and phone system was gone. It seemed the electric being out blew out the Verizon box so after the backup battery ran out, there went the service.

I found that out at 5AM this morning and I called, at 5AM. They actually sent somebody out by 11:00 AM today and service was working again. They replaced a box that I had been saying was having issues.

After all that, Katia told me before she went to bed, "I hope nothing goes wrong tomorrow because I need a quiet weekend."

I agree! We are both REALLY sore because we have been cleaning and cleaning. I clean when I have medical tests or something pending and Katia cleans when I seem nervous or anything.

I get into these modes where nobody can stop me from what I am doing which includes pain. I just pay for it later...

The only thing not cleaned out is the garage.

If I could paint (none of us here paint), the house would have been painted by now...

This needs to get behind us.

I have scans to recheck the cysts and growths on my ovaries this week. There has been a lot of pain going on. However, I do also have active kidney stones and it is hard to tell the difference sometimes.

My endometrial biopsy came back benign.

The second mammogram which was magnified appeared okay but they want me to have an MRI which was supposed to be this coming week. I am going to have to wait till next month. Too much going on and it has to be within a certain part of my cycle. I have to have the scan of my ovaries at the time and I am doing that this time. That is the biggest concern at this time.

I have a follow up with my neurologist coming up to go over the brain scans but I am supposed to do the memory function tests prior to that appointment.

I have to remember that though....

My phone reminds me sometimes but I tend to hit dismiss (that is bad).

So, I think that is a catch up over what has been going on.

Katia's upcoming appointments are regular clinic visits, IVIG, cardio and some things I would have to look at a calendar for...

I will try to update sooner than later.

Thank you so much for your prayers and the birthday cards for Katia.

She is certainly growing up. She is turning into her own person and, as always, is a joy to be around. I think she is one of the coolest kids ever!

Her drawings are excellent and she is brilliant with her sewing.

I hope she can continue with both. She is very creative and it makes her happy and keeps her occupied and busy. She gets so excited when she finishes a project and can't wait to show it off:)

Her dream is to meet Tim Burton and share her ideas with him for his movies. She would adore working with him!!!

Personally, I think she would be nervous to meet him but I also think she would get over those nerves in two minutes and then get down to creative talking:)

She hopes to make things and sell them to people who will love them and care for them.

That's my Katia!

Lots of love, Tracy

PS I started a "Summary Page" of headlines, breaking news and what I tweet in a day for those of you not on Twitter. You can find it by going to My Rebelmouse Page. It is a good alternate way of keeping up with what I do on Twitter.

January 25, 2013

Tomorrow is a big day!! Katia turns 13 which isn't so much hard to believe but is just amazing to think about and is such a lot to be grateful for.

We were reading over the beginning part of her journey and it reminded me of people commenting on my strength throughout these years.

None of us can plan on what will happen tomorrow, next month or anytime. However, I have always known I am never alone and even in the worst of times, when I allow myself to let go of trying to keep full control of everything, it has proven time and time again, God has always been there.

Things may not always have gone in the way I would have done them or wanted them to go but then again, my way is not always (hardly ever) the right way and although I think of myself as being a resourceful person, who am I to think I know it all?

It isn't strength that I have or knowledge and years of experience but it is peace and knowing that I am never alone.

Katia understands this as well. She is a blessing and I am honored to be her mother. She is smart and funny. Katia is so creative and she doesn't let all she has gone through hold her back from becoming all she can be. She is caring and doesn't like to see anyone else hurting or upset.

I think back to when Katia entered my world on January 26, 2000 and we were just "hanging out" that first night in the hospital when she wouldn't sleep and I couldn't sleep so I handed her that famous brown shirt she hasn't let go of since....

I knew she was going to grow up to be one cool kid!!

I am glad I could share her with so many others and I think her life will continue touching peoples' hearts for many more years to come with her words, her creativity and the delight and joy I know her to be!!

I love you Katia!!! Love, Mommy:)

January 15, 2013

Short update:

For those that follow my Facebook page, you know I have been fighting the flu for a while and Katia had started feeling bad as well. Here is just a short update.

I seem to be improving...the cough is still there but getting better. Katia however is still going through her cold, stuffy nose and a quite bad cough. She isn't able to sleep due to the cough. Her added weight makes it all worse and is getting her really frustrated. She is able to able to keep fluids down and she can eat things like soup or white rice but the coughing makes her sick which brings (gonna say something gross here) mucus. Not such a bad thing to get out of her system. She hasn't had any fevers but she is worn out. She typically doesn't like to stay in bed even if she is sick ( had enough of that by now) but she is laying low due to lack of energy. Please keep her in your prayers.

Love, Tracy

PS I promise more of an update in a bit. I hope each of you and your families enjoyed the holidays. We want to thank you so much for the cards and the wonderful holiday wishes. You know how much Katia enjoys these times and decorating:)

She will become a teenager this month. Being 2013, Katia will become 13. Hard to believe! We are grateful for each year, month and day and always blessed to see what Katia's years have in store:)

On a sad note, my uncle just passed away from fighting the flu. He will be missed by so many and this was very unexpected. Please keep his wife, children, grandchildren and his many friends in prayer.

November 23, 2012

I would say "time flies" but actually, I keep realizing I need to come by and do an update and it just doesn't happen. The day comes to an end and.... no update. I am so sorry:(

So, let's see. What has been going on? Quite a bit really. I will try to back up from the last update and fill you in.

Okay, shoulder healing? Well... I would say first of all, there is definitely much less pain so on a scale of 1 to 10, it usually around a 3 or 4 which is a huge improvement. I didn't so much stick to my PT visits (primarily due to the copay cost) but I have been pretty good about doing much of what I was supposed to do at home. I still have limited use of the arm but there is continued improvement. I am not a physically strong person on a normal basis anyway. According to "Wii Fit", I am "unbalanced". Yeh! I think that Mr. Wii needs to remember who can unplug him... (not that I am bitter toward his/her opinion or anything...) He says the same thing about Katia which she doesn't much appreciate either.
But hey, we try. It is fun, enough:)

FYI: There is a 9 day break between that part of the update and this (see what I mean...)

Okay, so with Katia, she has been having a difficult time lately. A lot of pain issues. She is quite puffy which is hard on her frame. Mind you she has severe osteoporosis, stands just around 3' 4" and weighs around 60 lbs. That puts a lot of strain on her overall body. Her height is average for a child around 3 1/2 yrs old but she has recently started growing more puffy and it is not only causing health issues but it hurts her emotionally as well and makes her unable to get up and down from the sofa, her bed and causes her to have difficulties walking around and just doing things she typically does.

She is also showing more signs of her GVHD (marrow rejection) flaring up again. This has happened on and off and we have been handling this more with creams for the skin instead of going back up on her steroids. The steroids have been the main way Katia's body responds in a positive way (positive only in terms of holding off the GVHD). However, the steroids are hard on her overall body. It is hard on her organs, bones and obviously hasn't helped in her growth. We have all come to terms with Katia not growing. She is fine with her height as are we. Our hope is that her bones and muscles will strengthen. This obviously takes movement, exercise and overall health improvement.

She was doing regular Occupational Therapy visits but due to other strains, we had to lay off of those visits and will hopefully pick those back up.

Katia isn't one to lay around, quite the opposite actually.

She has been especially good this year with trying to improve with her school work and sticking to a daily routine around the house. She has always been quite independent in the house as far as making things in the kitchen or keeping her room cleaned and doing as best she can with bathing and getting dressed. Katia is a great example of not giving into a disability but working around things by working with your abilities. She comes up with the darndest ideas to work things out.

She has really moved along with her love for sewing and creating her own "creatures". As I have said before, she is extremely inspired by Tim Burton, his movies and his art. She has been for a long time and has always been one to draw and sketch but now she will change nearly any stuffed animal into something entirely different or make something from scratch using socks, stuffing, buttons, material and whatever she finds. She is very creative!

Katia has her first pair of glasses! Yep. She is in progressive lenses and she loves them!! She was very happy how well they help her.

She can't really see out of her left eye but the glasses do help her right eye so it is beneficial for school, watching tv, sewing, everything.

Katia is progressing with her reading. She comprehends well when reading around a 2nd grade level but can sound out and manage reading above there.

She is working on both addition and subtraction math fact sheets using time lines and other tools which help her work through problems.

She is happy to do well with her school work and she adores her teacher!

Our hope is to see Katia start feeling better and go into the holidays with more energy and less pain. As we celebrated Thanksgiving yesterday, we remembered Thanksgiving 2003 when Katia had recently relapsed with leukemia and need a bone marrow transplant to survive. We had been unable to find a match and Katia had stopped eating anything by mouth. On that Thanksgiving we were so happy she had taken a few bites of turkey! I clearly remember that feeling of happiness.

When your child is fighting a deadly disease and you see so many families around you losing their precious children to the same illness, it doesn't take much to make you count your blessings. Life takes on a new meaning. Life is not things or even what may be the focus of everyone else in the world at that moment. Life is what is going on right in front of you and the fact you never knew this was coming. Suddently you are in that marathon you once watched on TV or that commercial that once played and you paused because as a parent, you felt bad for "those parents". Life is about that goal of doing whatever you can do to hold your child's hand as you walk out of that hospital with your child as a survivor no matter what you were told about the prognosis or the statistics.

Those feelings never go away. Here we are 9 years after that Thanksgiving in the hospital and Katia is just as fragile, fighting rejection issues, low immunities and ongoing pain. BUT, we are almost 10 years beyond her prognosis date. She lived and we are so blessed to be able to say that.

So many children are diagnosed each day and many still don't find matches (please register as a marrow donor at bethematch.org) and families find themselves in a place, on an oncology ward which they never dreamed they would become part of. I can't remember what I eat for breakfast a lot of times or if I eat breakfast but details from the hospital and those I have met along the way are very clear in my mind. I met many of the bravest children on earth, the most loving and courageous parents and doctors and nurses that extend their love in countless ways.

I will never forget many things because they are part of who I am and who I will always be. I live each day with my hero, Katia.

I never knew when I was watching those marathons or commercials my life would be affected by cancer in the way that it was or how it would touch me, change me or mold me but I am blessed to have my daughter alongside me each morning, afternoon and night.

For those that have followed Katia's journey throughout, many have registered as marrow donors, donated umbilical cords (which is how Katia found her match), become regular blood donors, shared the need for marrow, cord, blood donors and because of this, lives have been saved.

I never knew when I started sharing Katia's story how long I would share it, even if her story would be a positive outcome or if I would be sharing bad news at some point. I thought about that for quite some time before I started her site. I wondered if I wanted to get more people involved in her life if there were a chance for a negative outcome. Then I figured, none of us know where our lives may lead but all of us touch the lives of others and I knew Katia's life was meant to touch others, one way or the other so I started her Caringbridge site in November 2002 after a serious situation which rushed her into the ER and we nearly lost her.

I appreciate all of those who have followed her journey and kept her in your prayers and continue to do so.

From my heart, I thank you:)

Lots of love, Tracy

September 2, 2012

Finally, here is an update that has been long overdue. For those who follow me on Facebook, there have been small updates here and there, so there hasn’t been such a long span in between time.

A lot has been going on that has kept things quite hectic over the summer. This has definitely been a summer of appointments, that’s for sure. Between Katia and I, we are keeping Myron very busy.

Katia is doing well with her Occupational Therapy. By well, I mean she seems to progressing. Some things are difficult for her so she may not always be happy about it but she is at least understanding about what they are trying to accomplish. We are grateful she is able to have these appointments. She does enjoy the therapist she works with:)

Her IGG count was low at the last clinic visit but due to Tropical Storm/Hurricane Isaac we had to delay making the trip over to St. Pete to get the IVIG dose so that needs to be worked back into the schedule. At this time, I am not driving at all so every appointment goes through Myron.

I had surgery on my left should on August 1st. It had been sore for a while, some time. In July, I started having issues with not being able to move it much so I went in to have an MRI and there was a tear in the labrum as well as a spur that was interfering with each movement. I was sent to an orthopedic surgeon. It progressively became worse each day but when I went to the surgeon, my idea was to try to delay any surgery until the end of September due to so much already going on. However, he did an exam in the office with my moving my arm and feeling my shoulder, took a look at the scans and wanted to do the surgery right away. It was scheduled for a week later.

It was a good thing. By the time I went in for surgery, the tear had become a hole. Delaying for a month could have been the difference between repairable and irreparable. However, the surgery was a success and I am currently on the

I had been in an immobilizer for a few weeks to keep the shoulder from any movement but that was removed during the third week in August and I am doing physical therapy now. That is going okay… I am getting movement back slowly but I practice things at home and use a lot of icepacks for pain. I am extremely grateful to have help around the house!

Sharayah has been here since the middle of July so between Myron and the girls, someone is usually around to do whatever needs to be done. I am pretty stubborn though but once I get hurt once or twice, I give in, quickly.

Another topic, for a while now, I have not been able to drive. There has been quite a few concerns with some neurological issues going on so I have undergone quite a bit of different tests, had multiple scans done, switched around meds, ran labs and although we have ruled some things out, we haven’t found the answer.

Throughout the summer, things have appeared to worsen in some sense. As most of you know, if you follow my writing, I have stopped. I notified different publications that I either wrote for or submitted into that I didn’t feel comfortable submitting due to my inability to really concentrate, find my words or clearly say what I had initially set out to cover.

The fact this was affecting my writing was very upsetting to me because I have been working on writing Katia’s story, writing is a way I have always expressed myself and I have always loved writing. It has been very stressful (to say the least) to not be able to sit down and do something I have always enjoyed. However, when I feel I can focus for a short time or I just want to see what I can write on a given topic, I still will sit down and write. I know I owe quite a few response emails but most likely, it will be some time on those.

So, where do we go from here? At this time, I am set to go through more tests. Yeh. I was trying another medicine to see if it would help stimulate my brain, help with memory, focus and concentration. My goal is to be able to see a difference in day to day things like sitting down and having the ability to work through simple things that I could easily do just a year ago or even six months ago, I think.

Myron has had to pretty much take over Katia’s appointments for clinic and therapies and oversee a lot of her things at home as well as be at each of my appointments so he can speak up, listen to instructions, be part of discussions when I may not be following and really be a very crucial part in so much of what goes on. I have always been good about keeping notes, ledgers or copies of labs but it goes beyond that and he understands what it takes.

Typing this update or an email is like putting together a college thesis. Simple computer issues have turned out to be as difficult to me as someone more new to computers. Being in the kitchen? That is close to running a five star restaurant (trust me, my kitchen is not a five star restaurant). So, I am hoping to see those things turn around when we find an answer.

For now, I just have to stick to what is put before me and pray for each day to bring improvements. Please do the same.

Coming up, I have a renal ultrasound and some blood work to have done due to what seems to be issues with already existing kidney stones. There are always some around when I have scans or ultrasounds but now the symptoms have changed so the ultrasound is to make sure there isn’t blockage again. That is Tuesday.

Also, coming up (but not sure of the date)I have a Neuropsychological testing, lumbar puncture and a PET Scan.

I am not sure when I will post the next update here. A lot has to do with how I am feeling and what is going on. You can keep up with me on Facebook either by sending me a friend request or by following my public profile. I don’t post EVERYTHING on the public profile but it does keep people somewhat updated. It is a way of my Twitter people knowing what is going on as well as those that follow my writing.

The guestbook here is closed usually due to the fact anyone can post in it and this page is published on multiple publications. Katia’s story is the center of my world and as I have always said, she is my hero. She has touched so many lives and I have often heard back from people who registered as marrow donors through her drives who were called on to donate for others. Also, many people have become regular blood/blood product donors and that is a huge part of saving lives on a daily basis. Without that, many people couldn’t survive.

I love to hear how Katia has touched the lives of others. It warms my heart and it was the reason I was writing her story. It was more than just her story and I hope to continue working on the book.
I am very hopeful something will turn up and I can be back to writing and my old self (yep, I am 43 now) but for now, just keep these things in prayer.

Until later. Lots of love, Tracy:)

June 20, 2012

So, it has been a while since I have jumped on here and posted an update.

There have been a few changes. Katia has picked up a new hobby, sewing! She loves it! She is doing quite well and learning more and more each day. She just uses what she finds around the house and can make some pretty neat things so far.

She likes drawing little creatures and now she is making them. She uses different socks, buttons, yarn, cut outs of materials and I have to say, she is crafty!! She definitely will have to work beyond my sewing capability of putting on a button and she has already gone beyond that.

She just started Occupational Therapy at the hospital (OT) which I think is going to be very good for her. We are looking at starting Physical Therapy (PT). She really likes the girl, Alana she is working with in OT. They will do a wide variety of things but overall it is to help her in everyday functions and we have already learned some neat ideas to use around the house.

PT will hopefully help with some pain issues that Katia lives with on a daily basis. They will look at what she is currently one, her last scans and such and work around all of that.

I just wrote an article called,
"Coffee and Miracles". I know, the title! Katia thought it was funny. Well, she is kind of the main focus of the article, and coffee. If you know me well, that makes sense.

Not much else has changed from my last update.

I will be back later.

Hope you are enjoying the beginning of summer break.

Lots of love, Tracy

May 27, 2012

You know how it is when you keep saying you are going to do something and it doesn’t happen? Well, that is what keeps happening with a Caringbridge update… Sorry.

In some ways, it seems so many things stay the same and not having answers just feels like I am writing a “downer” so I prefer to not update at times. But, then I don’t like it to seem that I am just not keeping things updated.

So, here is a bit of information on some upcoming plans. We are trying to work with Katia and her pain issues which are just growing worse. She had a PT appointment which we had to miss due to my having tests scheduled with my Neurologist that couldn’t be delayed.

Seeing that I am unable to drive and Myron really needs to be at my appointments as well, we had to reschedule Katia’s appointment.

She has an upcoming OT appointment and hopefully PT can be scheduled at the same time or soon after. They are evaluations to more see where she is at and hopefully figure out her needs and capabilities. A lot of this has been being discussed and a lot of the lab work has already been done.

Katia has had more puffiness than usual as well so we are keeping an eye on that to see if she needs to return to the cardiologist. Her labs aren’t really showing any other reasons why this would be going on.

Her issues with choking has come back, not as bad as it has been in the past but it is possibly time to go back in and open her esophagus again. If we wait too late, the recovery takes longer and is more painful. Katia is good about notifying us when things are getting bad and she is letting us know so we are going to see that doctor and usually that can get set up rather quickly.

School for her is coming to a close which is good because she has been feeling very poorly which effects her with her classes. Hopefully we can get her feeling better before school starts again. Get her some energy and a plan set via OT and PT. Once they give us some guidelines and let us know her abilities and what to watch out for, she can feel more confident of what she can and cannot do and we can have that same assurance.

Katia tries to carry on with her day to day things and keep up to something but she does wear out easily and gets hurt easily. Being in pain all the time is one of the things that really gets to her a lot. She understands why this us but it is not something she is willing to just accept. She wants to make it better.

She has had quite a struggle with school but has shown improvements in some key areas which gives her hope and hope takes her a long way. She can read more than she once could. She struggles with spelling quite a bit and memorizing. Her memory is as bad as mine. But the fact she can read more is something she is proud of.

We have a project we are going to be working on via YouTube. I shared the information on Facebook but we will continue to be sharing some of Katia’s projects on my YouTube Channel (tracysolomon). It will give Katia the chance to show some of the creations she makes, short stories she puts together, artwork she draws and also allow her to talk on YouTube and get some feedback. I think it will help her with her creativity, reading (we will be using some cue cards) and just help with her overall confidence.

She is excited about it and we can move along as her health and mine allow.
So, what is up with me? Well, I will summarize this. I am still going through a lot of pain issues and muscle weakness. The concern is from some previous scans that I had run and the worsening of headaches and numbness, some vision problems and ongoing ringing in both ears. They want to do an MRA of both my head and neck to re-check some areas that had shown up the last time I had one.

I did have an ambulatory EEG which came out good so we are going to try some medicines to try to help with my memory issues depending on how the MRAs look.
My biggest concern recently has been my memory and how it is affecting my day to day life now. I am hoping something can be done to correct or help that. It is a complete opposite of my normal self.

Doing the many mundane tasks have become difficult and many things have fallen over to Myron. Anyone who knows me knows I am a control freak. Now Myron is has to be multiple places at multiple times and on top of that he is the sole income. I need him to listen to what Katia’s doctors are saying and mine though because I rely on him to remember things even though I can carry on discussions fine and with Katia’s care, I am able to retain most things because my long term memory is not a problem.

There should just have to be a rule that there can only be one issue at a time or something. I know many families face these issues. This isn’t the first time we have gone through this. This just is different this time because typically I can keep things much more organized in my mind and it is frustrating to not be able to do this.

That is one of the reasons I don’t update often. It takes a very long time to type these out. I have to stop and go back. I know there will be errors (I hate that) and sometimes things don’t tie together well. That is why there has been such a gap in all of my writing.

I am working on a book of Katia’s story which is a priority for me to see through, no matter what. It has had many pauses along the way but it is something I have prioritized to see through and get it done the way I want to see it completed.

Please keep these things in your prayers. I very much appreciate this.

Sorry for any stumbles or typos along the way. I am sure once they can get my brain back to functioning in a more accurate way I will look back on this and want to use a red sharpie marker all over it:)

Lots of love, Tracy

May 23, 2012

This is a story Katia wrote and illustrated today. Wanted to share it with you:)

Have a good day:)

Love, Tracy and Katia

April 28, 2012

I want to start off by saying thank you for stopping by. Some of you have been coming by here for the entire time this site has been up.

On April 15th 2002, Katia was diagnosed with leukemia so just recently, it was 10 years ago. That seems so long ago but with everything going on, in some ways, it doesn't seem that far away. Hard to explain sometimes.

One thing for absolute certainty, we are blessed, so blessed. Katia's life is a HUGE blessing and a miracle in so many ways.

I am so glad I decided to start this site when I did.

If you have been here from the beginning of this site, it was started after an absolutely horrible scare where Katia had a tremendously high fever where we had to stop at one ER on our way to ACH because she stopped breathing in the car. The fever registered at 107.8 in that ER and it is so hard as a parent to remain focused and not panic but we had to.

Katia was rushed from that ER over to ACH and was completely delerious with fever and in really bad condition. We were extremely worried.

Obviously, we know how it turned out because she is here today. It turned out to be an infection in her broviac, the line she had in her chest to receive her medicines, chemo and to draw blood from. That infection just took over because her immune system was so bad. Within 48 hours though, Katia looked and acted like nothing had happened. It took us a bit longer.

I remember making a decision to start the page and share Katia's story but I did consider the fact that things could either go in a positive direction or a negative direction. I had seen it both ways with many children already. I also knew that all of these fighters deserved to be known, have their stories heard and make their mark on the world. They are so amazing! So, I was willing to take the risk.

I never, in a million years, realized how many people would grow to love Katia and follow her so closely.

I just want to say thank you and let you know how grateful I am.

Last night, she was talking (a mile a minute like she typically does) and joking around and I couldn't help but think back on that night, how scared I was at that moment. Part of me knew Katia had a future still and I found comfort in that. I still find comfort in knowing there's more in store for Katia. She has big plans for her future and I am always glad to hear about her dreams for years to come.

She has worries but her dreams are much bigger and it's those that she focuses on.

Lots of love, Tracy

March 26, 2012

Figured it was time for some type of an update, right?

I will start by telling you why I have been a little short on updates, writing articles and seeming a bit "off the map" when it comes to writing in general.

I have been having "issues" (nice way to say it) with my memory, ability to focus and muscle weakness, flexability, balance and the list goes on. My neurologist is trying to rule out any new types of seizures, some neuromuscular diseases and until we can figure out what is going on, I have been pretty much laying low on a lot of things.

I realized I should lay off of writing when what I was sitting down to write was totally different than what was ending up on the paper. It was better to stop than to have something under my name turn up and be nothing like what I was trying to say.

So, that is what is going on in a nutshell with me, no pun intended.

I have been working on a project of writing Katia's story in my own words which has really been put on hold over the past two years and I am still working on that project as much as possible. It is very important that I see that through.

How is Katia? Well, she is my little source of strength, inspiration and humor. Katia is amazing. She has been having quite a rough spell on and off though. Her cortisol level dropped down again so we went up on her steroids to bring that up. She was getting very weak to the point she was falling and I wasn't able to pick her up at times. Myron has been staying home to help out with both of us.

By bringing up her steroid level, that did help with her weakness. She has been having a number of issues with pain and her explaination at times is she feels like her legs are turning very brittle as well as her back, like they are just dry and ready to crack. That is how she describes her discomfort.

Katia refuses to let the day go by without getting up and trying to "make the day go by faster"... She is very much into creating her little monster creatures. She is very creative with drawing and designing. She makes a lot of things out of socks, buttons, yarn, strings, anything she can find really. She makes quite a collection of little monster creatures (they are not scary) and names them all. I had her take pictures so I will post them on Facebook. My Facebook is under my name if you aren't following. You can subscribe. A good amount of my stuff is public.

I will try to update the pictures on here as well.

At the moment, I can't think of anything else to add on here but I am sure there are more things coming up.

I do have an upcoming ambulatory EEG and some tests to take and Katia is going to be doing more PT.

Please keep that in prayer.

My most important issue right now is my memory and vision issues going on and I really hope we can find out what is causing those issues. Quite a few things have been going on for an extended period of time but I do like the neurologist I am seeing now and I think I am in the right place at the right time.

I have felt very confident with Katia's care and we are so grateful for her team of doctors and the whole team at All Children's Hospital. They have been truly remarkable and beyond.

Lots of love, Tracy

December 24, 2011

It is so unbelievable this year is almost over!! It will soon be 2012. WOW!

I want to wish each of you a very Merry Christmas and a Happy New Year.

Thank you so much for your continued prayers for Katia and those that have sent cards! She loves them! Mail is always great. I was reading something the other day about the amount of mail through the United States Post Office and just how much it has decreased over the years and thought back to the days of when I had penpals (remember those??) We used to have them through school and I had one in Iran for nearly a year. Now there is Facebook, Twitter, Google , email, texting and I have to hope I don't loose my book of stamps in between the times that I need them. I have found some really great online programs that you can fill out the cards and they will mail the actual card for you so although YOU never touch the card, the person you are sending it to will receive a real card in the mail:) It is like we both win!

So, as for Katia this has been a bumpy year but we are always grateful for how far she has come. Her reading has improved and she was able to receive the Rituximab treatments. GVH can be a nasty disease to fight against and steroids are love/hate relationship but we at least have them and Katia still responds to them and her GVH backs away as long as she is on them or we increase them. Our prayer is always to get her off them though. So, hopefully 2012 will be the year for that.

This year has been a rollercoaster for me with my own health so we hope 2012 will be an improvement. I am currently undergoing some tests so hopefully going into this next year I will receive some answers. I have taken a pause from writing which includes here as well due to some of these issues but I hope to be back up and going sooner than later.

As we go into each new year, the prayer is always for new treatments and medical discoveries that will bring comfort, cures and hope to more patients and their families. That would answer so many prayers, Christmas wishes and mend more hearts than could probably be imagined.

May you and your family have the Happiest Holiday, a Wonderful Christmas and Happy New Year. God bless you.

Love, Tracy

November 14, 2011

Updated the area "Katia's Story" near the top with a brief summary over this last year.

That idea of "summarizing" Katia's story certainly has drawn out into a more lengthy process but I do try to be brief:)

Katia is moving along with her treatments for the GVH flare up. Not too sure how it is going really as we are still trying to wean down on the steroids as we had really increased them a lot.

She still has issues with nausea. Some days are better although last night wasn't good. She ended up throwing up but not much. Felt worse than what came out.

She is having shortness of breath and dizzy spells (as I mention above) so she is to have a repeat ECHO hopefully this week as well as treatments.

Things have been busy to say the least.

We hate to see Katia feeling so bad and she feels bad to feel bad. Hard to explain. Katia likes to make others feel well.

Fozzy has just been AWESOME!! He has to be on Santa's "good list" and that is his birthday as well:)

The pets are just all around great at making people feel good.

Things have been difficult lately but when I look through some of the journal history (I am working on a project), it brings back a lot of emotions as well as shows how far we have come through a journey nobody could ever plan for or imagine being faced with.

I see names of kids in the entries that have passed away and it is like they were just here yesterday and then I remember the day they passed away.

When I look at Katia, she appears so much the same because of the fact she doesn't grow. She is different in many ways but in some ways she is very similar over the years. It is like some things are frozen in time. Not sure if that makes sense.

I know I am so blessed to be her Mom and also to have been able to communicate with so many others who have children sharing similar journeys and loved ones facing these daily battles because everyone has such a story to share and words of wisdom.

I don't get on Caringbridge like I used to and as much as I miss that, part of me knows that there is a time for everything and what I do participate in at each point in my life is for a reason.

I love to hear from each of you and my email is always available.

If you are new to this site and have a child or a loved one facing cancer or blood related illness, please feel free to email me. If you have been around for a while and would like to update me on the status of your loved one, please email me. I don't want to lose touch.

If you are on FB or G , please look me up.

Of course, you can find me on Twitter.

All of those are under my name.

My website is below as well as the ladybugkatia.com with some very useful links.

I will update with information from the ECHO once I know more.

Lots of love, Tracy Solomon

November 2, 2011

Well, I got on here before it had been another month (at least by a few days)...

It has been a bit of a bumpy ride but Katia is on the Rituximab treatments. She had a bad reaction on the first one so it had to be stopped so she hasn't been on it long enough to see if they are yet going to be beneficial against the GVH or not. We are slowly trying to wean the steroids back down since we had to really increase the dose.

As for how Katia is feeling? Well, she has been extremely sore and although there are other things going on, that is her biggest dilemma. She gets a lot of aches throughout her body especially in her legs and back but also belly pains and nausea keep coming around so she hasn't been feeling well. For those that have followed Katia for a long time, she is not one to really let things keep her down though. She can feel really bad and still get up and walk around because she hates to be stuck in bed. That is a good thing though because the worse thing for her is to lie around too much. So, it works out.

Her appetite comes and goes but when the steroid dose went up, her appetite increased (for those that have been on steroids, you'll understand). We were surprised it didn't go up more but it did increase and her nausea seemed to improve some as well.

She hasn't been drawing too much because her hands have been sore but she did tell me a fantastic story the other day which I think would make a great book (seriously!!) so we are going to work on that together.

We are hoping over the next few treatments to see signs the GVH is being controlled by the treatments and not just the increase in steroids. She has been on steroids far too long (since 2004) and each time we try to wean, the GVH flares which can be life threatening.

We are however grateful for the fact the GVH does respond to the increase in steroids at least. It would be absolutely horrible if it didn't respond to anything.

So, this is kind of where we stand. Wait and see how the treatments go and try to go down on the steroids while we watch her counts and body's reaction.

Of course we are forever grateful for the care she receives because the quick reaction and dedicated care as well as staying ahead and attentive is really life saving in this case. Katia feels very secure with her doctor and everyone that helps take care of her. That is so important and makes so much of this journey much more tolerable in times that really matter.

People always say they don't know how we do it, how we can be so strong. Well, I first of all know I could never do any of this without God. I also know that if I ever had looked ahead of Katia's diagnosis I would have said the same thing but as a parent, we do whatever it takes to take care of our children and those around us, hold us up and help us just as we would do for others. We gain strength as we go along and there is no right or wrong way to do this. It is difficult and draining and you just face each day as it comes. Really, you can't plan too far ahead because you don't know what really lies ahead but none of us do in all reality. I think once we all see that, it becomes clear that we really are in this together and it is very important to help those around us.

The saying with the Katia Solomon Foundation is "Love comes back to you when you give it to someone else."

This is very true and in many ways. I was talking to Katia about this the other day and her way of explaining this to me was just so sensitive and in a way I hadn't even thought of. I truly love sitting down and chatting with her because she is genuine and doesn't really hold back. But one thing Katia thinks is when we do anything, is to just do everything with a good heart.

I will try not to be so long between now and the next update. Not making any promises....

I have been having a few challenges of my own with some medical issues so that is slowing me down a bit (a bit more than a bit) but I am trying to get my system worked out to make updating easier and a few other things more syncronized.

We'll see how I do:)

Lots of love, Tracy

PS If you are on Google , look me up. You can also subscribe to my Facebook w/o the need to friend if you would like and just follow my public status updates. Isn't it crazy how things change so often...? I don't do much on Google but I will once it picks up more. I will see how it works out.

October 5, 2011

I keep saying I am going to get on this CB site and update about what is going on with Katia but each day, something new is going on so I better update...

If you have been following Katia for a length of time, you know she has had chronic Graft vs. Host disease since she had transplant in February 2004. This has flared up in the past and recently, she started having more and more of her "mystery spots" which appeared to be related to GVH (graft vs. host) but not confirmed.

However, she again suddenly flared up with what appeared to look like a chicken pox breakout although we knew she hadn't been exposed to chicken pox so the first thing to look for was a confirmation of GVH and how we could again get it under control.

GVH has been one of Katia's main battles throughout her cancer treatments and is the reason why she has continuously relied on Prednisone (steroids) since transplant. It is the one thing that has kept her GVH is continuous "check" but the need for her to come off of this is also very important and they have been getting weaned down at an extremely slow pace.

Her immune system has slowly been building up and as that happens, her own system tries to fight against it, therefore we have GVH.

So, the plan now is to start on treatments using Rituximab Infusions which will hopefully fight off the GVH by killing off the cells that are causing this reaction (also affecting her overall counts again). Depending on the overall response will determine if the treatment is working. Due to how aggressive her GVH was becoming we had to increase her steroid dose quite significantly (more than 4xs the dose she was on) which hopefully we can wean back down on.

Katia had been very nauseated for quite some time, very sore throughout most of her body, lacked energy more and more and was just increasingly going downhill. Since last week, she has been vomiting and basically down to no energy and not being able to eat. She can drink fluids pretty well though and is able to keep her medicines in so that is good. She is eager to get this new treatment going and we are all very hopeful for this to work in clearing up the GVH while still being able to wean the steroids off.

Please keep this in your prayers. We have been prepping for more extended hours at clinic (each infusion is 4-6 hours) so we have our games and gadgets ready and are extremely grateful, as always, for such a great medical team and the fact they are always on top of every step in Katia's care.

For those that have been following on Facebook, my updates are a bit more up to date but lack detail. You can also subscribe to my Facebook for public postings but those don't include anything about Katia (privacy issues) only things I post and wish to share publicly. When I post an update here though, I will note it there and that will be posted publicly that there is an update waiting here.

I'll try to post more next week once we get this first treatment behind us.

Love, Tracy

Sept. 23, 2011

Didn't realize it had been so long since I had updated. I do more small updates on Facebook but I need to keep this kept updated as well. this journal has proven to be very helpful in many ways over the years for many people but also myself whe I can't remember when a certain test took place or anything in particular during Katia's rather lengthy journey. Plus it has been really nice to sit down and read through at different points. Katia's life may have had many adversities but there has been countless blessings.

As I have mentioned, Katia has been having numerous issues with ongoing pain, cramping in different areas of her body, lower energy levels, swelling around her body, headaches and just overall, not feeling well. This grew increasingly worse over the summer to the point she was spending more time in her pajamas and being inactive and less time being her happy self, which was very hard to watch progressively get worse.

Nothing was really showing up in tests and there really hasn't been anything that would help her feel better.

After Bone marrow transplant in 2004, she rejected it and has had chronic GVH ever since which has required her to be on immune-suppressing drugs all this time which both hurts her and helps her.

She always has bumps that appear (little red spots) that come and go. We have always called them "Mystery Spots" but they have appeared to be GVH related. This past week, she broke out with so many, it looked like chicken pox. We took her in and they did a skin biopsy and today we found out it is a GVH flare up.

For Katia, the thing that has always been the answer for GVH was steroids but we have worked on to be weaning them because she has been on them so long and the side effects aren't good. Her body is getting worn down from many of these medications she has been on all these years but without them, Katia wouldn't be here.

So, at this time, I'm not sure what the plan will be to get the GVH back under control.

People have always asked if she can have another transplant since her body has rejected this one since she received it. the answer is, no. That would only be done if she relapsed with cancer or if her bone marrow failed.

So that is where we stand right now.

Please keep Katia in your prayers. I know you always have.

If you come to follow my FB, please send me a message on FB saying you are coming from Caringbridge.

Katia is not happy about this because of being in pain mainly. She has been in quite a bit of pain for a long while now but she pretty much tries to lay low during the day, do her school work and the pets keep her company (Fozzy, Monty and Ling Ling).

She is doing a lot of drawing right now and will be working on a Halloween book, very excited about that!

She is doing quite well with school and improving with reading. She is enjoying watching movies and playing on Jumpstart.com on the computer. If you have children, that is a great site to check out!

I've been writing a lot and we all stay pretty busy which is good ( I hear it keeps you young?)

If you are on Google , I just finished the sign up which I started in July....took a while since I kept forgetting.

I will update when I know the plans.

Love, Tracy

PS To read prior journal updates, click on "Read Journal History" on the top of the page.

*****

July 10, 2011

Thank you for your prayers. I am healing more each day and making progress. I am so grateful for Myron and Katia picking up the slack for me and being my nurses!

For the most part, a lot of the pain prior to surgery is showing improvement. I did have a reaction to the Dermabond they used to close the incisions but now that seems to be getting taken care of also.

I just need to gain back my stamina and not overdo things or injure myself. Need to gain back some weight as well.

We are still concerned about my chronic cough so I'll go back to my pulmonologist about that once I am up to getting back out again.

Just wanted to update and not leave this without any updates.

Thank you!

Lots of love, Tracy
tmsol87@aol.com

July 5, 2011

Just a quick update since some time has passed since I actually had my surgery on the 30th.

The surgery went itself went well. A basic summary is they first did a colonoscopy which shows that all to look well.

They then allowed me to wake up and soon after, I was taken into the next procedure where I then had a few things done including my appendix taking out, a cyst removed (but the right ovary appeared okay) and some lesions taken care of to take care of endometriosis. I had my tubes cauterized and and due to long term issues going on, biopsies sent out (which are showing to be benign).

As far as my recovery? Well that is going quite slowly. I have had a chronic cough for over 2 years which hasn't been figured out although greatly tested and continuing... Let's just say it is hard on a healing abdomen.

I also seem to have an infection or reaction of some sort going on near one of the main incision sites and around my abdomen so I had blood tests today (which turned out to be very messy after bleeding out down my arm under my long-sleeve shirt after we left the place, yuck!) and I started on 2 antibiotics now.

I have noticed however the left side of my abdomen is not as sore as prior to surgery. All the pain I am having right now is mainly in the middle, mid-right and lower right so that is more where things were done. Just taking time to heal. Hopefully when the healing is done, the prior pain that has been around so long will go away as well.

I really don't like being stuck in bed but I get up here and there...

I have good helpers:)

Thank you for your prayers and messages.

Lots of love, Tracy

June 29, 2011

Katia has been taking her days off from school quite seriously although she does have to do some school type of things here and there. Her reading has improved over this past year or two. I remember when Dr. Seuss books were impossible and now she reads them very well.

Although many things are a struggle and we are trying to work with different avenues to not only figure out why but also to see what can be done, Katia does do her best and she is growing in many other ways. She makes it clear that physical height definitely is a necessity to her. She is quite okay with being just over 3 feet high (3 ' 3 1/2") and Katia has quite a personality that has grown quite a bit over the last few years.

However, she is just as loving as always and still has that laugh and chuckle that can make me laugh till I can barely breath!! Seriously!

That has been great lately as I haven't felt good and she hasn't felt good as some of you know... Katia has had a lot of pain issues and I have as well.

I'd like to ask a prayer request as I am having surgery tomorrow. Not to get into a lot of detail but due to some issues that have been going on and scans and sonograms, I'll be having a colonoscopy by a Gastro doctor 1st and then under the same anesthesia my OBGYN will be removing a cyst as well as an ovary, falopian tube, possibly my apendix, he'll be looking at my uterus and then basically do an overall exploratory look around.

We are hoping that this will bring about a great deal of relief and be the only necessary surgery and I will have a quick and 100�ecovery. Katia is nervous and of course, that is totally understandable but at the same time, she wants me to be back to feeling better like I used to.

So, I would appreciate your prayers and I will try to update sooner than later with good news:)

Lots of love, Tracy Solomon

PS Please go read Laura Kondo's message in the guestbook, it is AMAZING!!!

Posting it here:)

From Laura Kondo...

I am a long time follower of Katia, but I rarely leave messages, but today I wanted to share a story with all of Katia's followers. I'm not sure how long ago it was, but when Katia was searching for bone marrow match I joined the registry. Not sure I would have if it wasn't for Katia. Well last spring I got a phone call that changed my life. I was a match for a 58 year old man with Non-Hodgkin's Lymphoma.

Would I donate...absolutely. So on June 22, 2010 I donated peripheral stem cells. Well the phone call I got yesterday, was nothing short of a miracle...my recipient was doing very well and has returned to NORMAL pre-transplant activities and is currently in remission!! My next step is to release my info and hope that he will to. Someday I hope to meet my new blood brother.

For everyone out that hasn't joined the Be the Match registry, I urge you to do so...it changed my life and you just might save a life too!!

To Katia and her family (and all others out there fighting any disease), I keep you all in my prayers and hope for health and healing.

To Tracy and Myron, thank you for sharing you daughters life with us all and for spreading the word about blood donations and joining the Be the Match registry.

Laura Kondo

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

May 18, 2011

Quite a bit of time seems to go between updates which is usually a good thing I think.

Not much changes for Katia. We did have clinic today and will go back some time next week to have some scans done and recheck some counts that were "off" today.

The scans are for her back, neck and head. She has been having a tremendous amount of pain lately and this has been ongoing and causing her to just be irritable and not be able to carry on with even her day to day things (which is pretty low-key).

It used to be her codeine would help with her pain but right now, nothing is helping and we are needing to see if some scans can show us what is causing her this ongoing pain.

Her weight has pretty much come to a stand still. She hasn't lost any of the gained weight but she has stayed the same. We haven't changed any of her meds for a while. Her blood pressure has been running high but I am thinking her pain has a lot to do with this. That is just my opinion. It is hard to see Katia feeling this way.

Some of her counts came in lower than normal but this can be due to Katia recently being sick or just a lab mistake so we are going to repeat it next week. Hopefully the scans can be early in the week. Her pain is something that we are all very concerned about at this moment.

Katia's overall skin shows improvements in some areas that have remained improved but other areas are in poor shape so we are going to work on areas instead of changing her medication levels at this point. Typically, her skin has responded best to going up on the steroids but right now, we are trying to avoid that so hopefully this topical method will work. These areas of her skin look quite bad.

Katia is very much looking forward to her school year coming to a close. She has been quite worn out and sore for the most part and just wants to stop for a bit. I think if we can get her comfortable and able to carry through her day better, she will do much better in school because this school year has shown much more progression than any other.

Please keep Katia in your prayers as I know you do and thank you for dropping by. I'll update more after the scans or any further info comes in.

Lots of love, Tracy:)

PS I nearly forgot.... I was going to pop on here the other day and add this link. Myron just released his Spanish album which has been a 2 year project. It is on iTunes. We are all quite excited about it. If you are on FB, you can drop by his fan site which is linked from my page. The album is available through iTunes as well as most other digital download sites. The other links can be found on his FB fansite as well as his website.

Enamorado by: Mairon Solomon

FB Fansite

April 15, 2011

On this day, nine years ago, Katia was diagnosed and rushed to All Children's Hospital to begin treatment for Acute Myelogenous Leukemia.

Today, she is alive and we are so blessed to be able to have spent these last nine years with her. We know how blessed we are each and every day.

So many of you have followed Katia's journey along the way, many from nearly the beginning of this website in November 2003 but if you are newer to her journey, please take the time to read the section above, "Katia's Story".

I have learned so much over the passed nine years about life, love and hope as well as my own faith in God.

Lots of love, Tracy (and Katia!)

March 27, 2011

Sorry for the lack of updates... been sick around here for QUITE A WHILE.

Seems Katia came down with the bug on Valentines Day and then me the next day and we got it BAD! Both of us were pretty miserable with coughing and just feeling generally sick and sore, especially sore. When I get a cough, it gets especially out of hand because I have already had a persistent cough for nearly 2 years now? It has just hung around and won't go away. Well this time, I just couldn't stop coughing (literally).

I have gone to a new Pulmonologist and he started me on new asthma meds and allergy meds and it has improved things. Thank goodness! Myron and Katia were getting very concerned at just how much I was coughing and seeming to not be able to catch my breath. Nobody was really getting any sleep but, things are on the mend here and looking up. I have to go back to the Pulmonologist for a followup and some more tests. I really wasn't able to do much when I saw him this past time. Talking was a chore. I am grateful to be able to go out in public again and talk on the phone (though I am not a fan of the phone anyway).

So, aside from that... not much else has been going on. Katia has to catch up on clinic visits and her visits with the cardiologist and such. She has an appointment tomorrow with the endocrinologist. She couldn't really go to the doctor when we were both sick. Don't think anyone would really appreciate getting sick from us. She missed 3 weeks of school but she is getting back on track with that as well. She is doing pretty well in school.

I just realized I don't have a picture of Monty and Ling Ling in the photo album on here so I am going to add some newer pictures of them on here. They were neutered this past week:( But, they recovered nicely and were super great patients!!

I have been in that mode of being busy but not accomplishing much. Pretty sore recently so I may go get my back and neck looked at again. I thought it was due to all the coughing or possibly kidney stones but we will see. I haven't written anything for a while. There is really so much going on that it is hard to focus (that may be due to aging...)

Anyway, hopefully Spring will be moving up to all of you that are still dealing with snow which is just hard to imagine for me since Florida has just been so sunny. I wish I could just bottle it up and send it to you. It let's you know how big the world is when you think of how different the weather is in so many places at the same time. Amazing! It can be a rainy, cold night in one place as it is a sunny, day without a cloud in the sky here at the very same time. As much as it is a small world, it is a very big world.

Have a good day.

Love, Tracy

February 24, 2011

Short update (I think)

Just a catch up really. Katia is still using a portable heart monitor over the period of a month and then we will check back with the cardiologist but she has been sick over this time as well which has just added to the issues she is already having. She has been quite a bit more run down. I am putting the blame of this on the fact she hasn't been able to sleep much due to having a cold and cough that has just lagged along.

We have gone back and forth to different appointments and Monday we will see the endocionolgist again to go over some labs. I am curious to what these will show and any ideas he may have.

I have been sick as well so my updating has been lagging, sorry. I have had a cough issue that has gone on over a year that I went back and forth to the doctor about for a while back when it seemed to not go away back then but now it has gotten even worse so I am again pursuing the issue and on top of that I am getting over a bad virus as well so this is just taking a good while to get out of my system. I could get beat down with a wet noodle at the moment:)

I will really try to be better about getting on here and updating after the endocionology appointment and keep kind of a running log as to more of what is in the plans.

We have yet to find out the cause of the weight gain and Katia's overall pain and fatigue.

Thank you for your prayers.

Lots of love, Tracy

January 28, 2011

First, thank you so much for all of the birthday wishes here, on Facebook and those that sent mail!! Katia loves her birthday and much of that is thanks to the wonderful birthday wishes she receives from all over the world that makes her feel so very special. Thank you!!

When I update, it is always easy to just focus on the positive and put off anything else because that is how we are, full speed ahead and positive.

Katia has always been the same way. It doesn’t matter how bad she has felt, she has always just been happy to try to find a way to somehow play with something or watch TV even her worst days during transplant, easily adaptable.

Another reason we can always focus and stay positive is we have strong faith and great doctors! Katia adores her doctor because she takes such great care of her and that is one of the most important parts of any treatment or any type of long term care. Trust.

Over the past few months, Katia really hasn’t been feeling well and she has been getting more and more tired and putting on extra weight and appearing more “puffy”. She is easily worn out doing simple task. She has never gotten to the point of being able to be like a typical child her age but she began back tracking in areas that was moving ahead in physically. At times, she would be perfectly fine and then other times, worn out.

She goes through a good amount of regular tests w/ each of her clinic visits due to her past treatments as well as her current treatments but when things seem to be changing, we repeat things that are maybe just done yearly and in the beginning of December, an EKG and ECHO was done which found an abnormal reading in the Left Ventricle of the heart. Not an astounding difference but enough to take note and this could have been caused from the growth hormones or steroids. The change came over a period of a few months so the idea was to stop the growth hormones and retest a few months later to see what changes or improvements took place.

Since then, Katia has continued to worsen. We have done more tests checking her thyroid functions, lung functions, more extensive blood tests, kidney functions and now the next step is to check with the renal specialist and back with the cardiologist. The easier answers have been ruled out and we need to move up the repeat of the EKG and ECHO and see what is going on with the heart and have more extensive tests on the kidneys and their functions. Katia is on medications that are quite hard on her kidneys.

It is very difficult to see her feeling bad and to see her not improve but worsen especially when we don’t know what to do to make her better.

She just turned 11 on the 26th and she says she feels very old. She is sore and gets tired very easily. She is still the same Katia and is very much finding ways to work around things. She uses her scooter to get around easier and she is enjoying drawing and sketching (the pictures are on my Facebook). Katia has grown up learning to adapt and be patient. She is always compassionate to anyone not feeling well or upset.

She likes when Ling Ling, Fozzy or Monty lay with her to watch a movie or TV. Monty seriously loves watching TV and movies!

Please pray that some answers can be found and she can be back on the road to feeling well. Ms. Michele and Katia have found a more comfy way of doing school in the living room so school has been going well. Katia is very lucky to have such a great teacher!!! She loves her teacher very much.

Thank you for your prayers. Thank you for checking in and your messages.

Lots of love, Tracy

January 24, 2011

Two more days and our little Katia will be ELEVEN YEARS OLD!!

It is hard to believe sometimes but we are very blessed in so many ways to her here with us. We are very grateful.

So many have shared this journey with us and we are grateful for each of you as well.

Thank you for being part of Katia's amazing journey beating cancer and touching lives along the way:)

Love, Tracy

PS She is my hero:)

January 5, 2011

First of all, HAPPY NEW YEAR!!!

Another year has arrived and we are very grateful that you are here and checking in on Ms. Katia! Can you believe she will soon be 11? Whatever the year is, that will always be her age. That makes it so easy to remember! We planned that! Not really:)

For those of you who follow us on Facebook, you received some very sad news from me and possibly from other Caringbridge families as well about the passing of Kody Bear's father. Many of you who follow Katia have also followed Kody's battle with cancer through the years. His Dad was tragically killed in a head on collision on Christmas Eve headed home.

Kim has posted about this on her blog and the family has just been devastated by this loss. Over the years, having following the "K" family, this news came as a horrible shock to me and my heart just broke into a million pieces for them. I have thought about it through the days, at night I can't imagine the pain Kim is facing, each of the kids are facing each day now and into the future. Please keep this family in your prayers. Kim's Blog

How is Katia? Well, Katia had a lot of fun for Christmas. She is a 10 year old (she is holding onto her age until she actually turns 11 she says) so her year revolves around holidays and her birthday. She made little gifts for us and had them wrapped even before Thanksgiving. She had gifts for Ling Ling, Fozzy and Monty as well (theirs were hidden up in the tree. I was worried whether the tree would last with three animals but believe it or not we only lost 3 ornaments and those were all casualties of Ling Ling.... I don't even think he felt bad when they broke.

Katia has been having quite a few days of just not feeling well at all. Mainly pain issues but also her belly has been having quite a bit of problems. She is quite puffy some days in her whole upper body including her belly. This makes her quite uncomfortable. Her bones are quite fragile so any added weight is hard on her.

One of her favorite gifts for Christmas is a scooter SANTA brought her. She can scoot around wherever we go and it is easier than walking. It also helps get her a bit more active (don't tell her that...) and activity is always a good thing. Although between the three boys (I mean the pets), they do keep her quite busy and active.

She has definitely enjoyed her break away from her classes, just the work part because she does miss seeing her teacher. She was supposed to have class on Tuesday but Katia was sick and had been up a good part of the night with stomach issues mainly but also just all over pain. The more active she seems to be, the more she hurts.

To end on a good note though, we are on the countdown to Katia turning 11 and quite a few of you have been around since she was 2!! That is nearly 9 years. Katia was diagnosed in April 2002. A long time has passed.

I very much appreciate your following along and keep her in your prayers. Thank you, thank you, thank you:)

Lots of love, Tracy

December 11, 2010

As a good bit of you know due to Facebook, Katia was admitted to the hospital on the 8th due to a fever following a procedure for her eyes.

The procedure was another exam under sedation due to the fact it is very difficult to really do a thorough exam that is needed in a typical office exam. The exam itself was done but during the exam, Katia had a bronchial spasm which caused the need for a tube to be placed in her throat and an IV to be run in her hand (her port hadn’t be accessed) so she wasn’t too happy when she woke up and she had an unplanned sore throat since this wasn’t going to be a long procedure or an esophageal dilation. Anyway, she ended up running a fever as well which earned her a 48 hour hospital stay so cultures could be run and labs could be taken for other things.

So, to back up a bit, last week prior, she had the ECHO and EKG run and they wanted to do a repeat EKG and for us to meet with a cardiologist which had been planned to do following this procedure. Since we were not leaving the recovery area for a bit, they sent to have the EKG run in the recovery area and the cardiologist came to us.

It seems Katia has what is called, LVH – Left Ventricle Hypertrophy, which is a thickening of the wall in the left ventricle of the heart. It isn’t really bad and it has come about since the last ECHO done in May. Most likely this has been caused from the growth hormone which hasn’t done anything for Katia’s height. She has grown a bit under 1” in the past year and according to recent measurements, she is right at 101 cm, the average height of a 3 ½ year old. So, the other thing we wanted to look at is whether it was helping to strengthen her bones which we were hoping for since other osteoporosis treatments haven’t worked due to the fact she has remained on constant steroids due to the graft vs. host disease.

We did a DEXA Scan while in the hospital and anything greater than -2.5 is osteoporosis. In February 2009, her whole body z-score was -3.5, lumbar spine was -2.7 and her left hip reading was -2.9.

Now the whole body z-score is -4.0, lumbar spine is -3.2 and the left hip reading is -3.5. Quite a bit worse.

So, the growth hormone is not helping and seems to be causing issues with her heart.

The idea is to do another ECHO in 3 months and see what happens without the use of growth hormones. Hopefully there is improvement.

How is Katia feeling? Well, Katia has been having issues with added weight gain and being puffier in the upper part of her body which is why we ran the ECHO and EKG in the first place as well as some other labs. She is having quite a bit of added daily pains around her body and just lower on energy although I can get her to do more like take the dogs out in the back yard with me as well as she plays with them in the house. She just tires more easily. Whether we can say any of this is the reason, not sure.

The eye exams really don’t show any changes. Katia’s vision is getting blurrier which means her right eye but we have to do a regular office vision test to get to the root of that and see about glasses. First her eye doctor wanted to check the corneas, retinas and optic nerves. Testing her vision is difficult and hard to really get an accurate reading but that is the next step as well as staying behind the parts of the eyes for any signs of gvh affecting the good eye or worsening in the left eye.

That pretty much sums things up.
Katia is very much looking forward to Christmas and then in January, she will turn 11!! Can you imagine?? Time does fly. We are hoping she will be feeling well and stay healthy and keep everyone else in prayers as well.

Through the years it has been a blessing to meet so many along the way but it is always a reminder as well of those that no longer have their loved ones with them and also that many will be spending their holidays, birthdays and important events in the hospital and away from the homes and families. Our holidays and birthdays away from home were made special because of many people that cared and the fact the hospital and its staff became home and family away from home.

Lots of love to each of you,

Tracy

November 17, 2010

This was emailed to me and I just wanted to pass this along.

"Keep the fork"

There was a young woman who had been diagnosed with a terminal illness and had been given three months to live. So as she was getting her things 'in order,' she contacted her Pastor and had him come to her house to discuss certain aspects of her final wishes.

She told him which songs she wanted sung at the service, what scriptures she would like read, and what outfit she wanted to be buried in.

Everything was in order and the Pastor was preparing to leave when the young woman suddenly remembered something very important to her.

'There's one more thing,' she said excitedly..

'What's that?' came the Pastor's reply.

'This is very important,' the young woman continued. 'I want to be buried with a fork in my right hand.'

The Pastor stood looking at the young woman, not knowing
quite what to say.

That surprises you, doesn't it?' the young woman asked.

'Well, to be honest, I'm puzzled by the request,' said the Pastor.

The young woman explained. 'My grandmother once told me this story, and from that time on I have always tried to pass along its message to those I love and those who are in need of encouragement. In all my years of attending socials and dinners, I always remember that when the dishes of the main course were being cleared, someone would inevitably lean over and say, 'Keep your fork.' It was my favorite part because I knew that something better was coming...like velvety chocolate cake or deep-dish apple pie. Something wonderful, and with substance!'

So, I just want people to see me there in that casket with a fork in my hand and I want them to wonder 'What's with the fork?' Then I want you to tell them: 'Keep your fork ..the best is yet to come.'

The Pastor's eyes welled up with tears of joy as he hugged the young woman good-bye. He knew this would be one of the last times he would see her before her death. But he also knew that the young woman had a better grasp of heaven than he did. She had a better grasp of what heaven would be like than many people twice her age, with twice as much experience and knowledge. She KNEW that something better was coming.

At the funeral people were walking by the young woman's casket and they saw the cloak she was wearing and the fork placed in her right hand.. Over and over, the Pastor heard the question, 'What's with the fork?' And over and over he smiled.

During his message, the Pastor told the people of the conversation he had with the young woman shortly before she died. He also told them about the fork and about what it symbolized to her. He told the people how he could not stop thinking about the fork and told them that they probably would not be able to stop thinking about it either.
He was right. So the next time you reach down for your fork let it remind you, ever so gently, that the best is yet to come. Friends are a very rare jewel , indeed. They make you smile and encourage you to succeed Cherish the time you have, and the memories you share .... being friends with someone is not an opportunity, but a sweet responsibility.

November 3, 2010

Katia had a wonderful Halloween!! She got all dressed up in her self-designed cat outfit, dressed up her kitty, Ling Ling for the day and played with her Skelanimal (her new favorite line of stuffed animals) and then went out for a bit in the evening for some trick-o-treating with her daddy and over to someone's house. She got a good amount of candy (success!) and enjoyed herself. I decided to lay low this year and spend a quiet evening with Fozzy and Ling Ling - no chocolate for them but I had my own.

Here is a picture of Katia all dressed up to go out. This year she was pretty comfy and didn't spend much time outside so it was all good!

She has been enjoying the Halloween cards in the mail by the way!

Love, Tracy

October 23, 2010

Katia is so excited for October (yes, the whole Month!) because Halloween is one of her favorite holidays, if not her favorite!

She made a whole list of things to do in October and she is slowly checking them off. Of course, she is going to be a kitty cat:) That was a given since she has been a kitty over the past 6 months now, every single day.... but she is expanding on her costume.

BIG NEWS!! Katia also has a new kitty cat of her very own. His name is "Ling Ling" and he literally fell off our roof (don't worry, he is okay). He is from some stray cats and Katia says he fell from heaven which timing wise couldn't be more true. He really has been a blessing to her as she has been going through some pretty tough times.

Ling Ling and Fozzy get along superbly! I think the kitty may grow up thinking he is a dog and we do think it actually barked the other day when Katia accidentally stepped on his tail but the good thing is they really get along great! The easiest thing was litter training! That was great!

Katia will be needing another exam under sedation for her right eye coming up here soon as she is still seeing floaters so please keep her in prayers for that. I will update with the date when I know more details. Her vision in her left eye is still the same so no improvements there.

Overall, Katia's skin has looked better so we are working a bit with the steroids and hopefully this will help something and not hinder anything else. Katia's body seems to be addicted to the steroids. She has been on them since 2004.

For those of you who have joined me over on FB, you have seen a picture of Ling Ling and Fozzy, otherwise, I will try to change out the pictures here as Halloween is approaching:)

Katia has also been doing a great deal of drawing (inspired by Ling Ling) so she is keeping pretty busy these days. It is hard to believe she will be 11 in January. Her taste in things are changing. She is really into spooky things (even when it isn't Halloween) and she is learning to enjoy reading a bit more as she is picking up better with her reading. This is why it is so important to keep the right eye healthy. She loves most things to do with cats, skelanimals (which are cute if you have seen them), Hot Wheels (she has my old childhood collection too) and she loves drawing! She is very good with drawing! I have been trying to scan and post the things she draws onto Facebook.

So, that is pretty well catching things up.

I appreciate those following the Examiner articles. I have slowed down a bit this month due to some things going on but hopefully I will pick back up. If you haven't subscribed, please do. It helps me out.

Florida is beginning to cool off and leaves are dropping off trees around here which means it will soon be Thanksgiving, Christmas and then goodbye to 2010 and hello 2011.

Thanks for checking in on Ms. Katia:)

Lots of love, Tracy

September 27, 2010

Just a quick update to say thank you for the cards Katia has been receiving! She loves mail (as always). They are certainly a great pick-Katia-up thing in her day!

She has pretty well gotten into a good schedule with taking her medicines on time to help with any pain her eyes are having. Right now, we are holding off on doing another eye exam under sedation until she needs her next esophageal dilation done.

Her vision has remained the same, no better, no worse. I try to not bother her with testing her vision so we do something to test it every 10 days or so just to make sure the right eye isn't changing. I see her blinking or closing the right eye if there is an issue with her seeing something in there and it does bother her. The left eye is still a total blur so she depends on her right eye for her site. She is however able to use that eye to do her school work, color and draw. She uses the computer and watches TV but not as much as most kids. She isn't really one to sit and watch TV, she more listens to it and plays with something on the sofa. She has been that way for a good long while. Something really has to grab her attention to get her to focus on watching a movie or show. Now we are figuring that has had something to do with her vision.

If she is on the computer, she gets on and off it (not one to sit there for very long).

Things are really beginning to make sense. She has said for a very long time that she needs to "rest her eyes" and she has always been more one to just play with something in her hands than to really watch TV or be on the computer long. However, she does like her Nintendo DS and she will play with the Wii but neither of those does she do for a length of time. I know most kids can play with those for hours at a time as well.

Katia is so happy October is nearly here!! She loves Halloween time, really the whole month of October! She likes the decorations, the candy, looking for costumes, etc. When Halloween night gets here, the build up usually winds down pretty quickly. She is more about the preparations for the evening. She has a list made out of everything she needs to do in the month of October. She is all into being a cat (of course!)

The ears she has on in the picture have now been on her for over 5 months and they aren't going anywhere anytime soon. we have always shortened her name and called her Kat or Kitty so maybe we brought this on??

Anyway, just wanted to catch up with an update.

Hope everyone's kids are doing well being back in school.

Thank you for the support of those following my articles, I appreciate it very much. It is a great opportunity for me to be able to do something at home that falls into my schedule and I do love writing!

The link is at the bottom as well as my FB.

I can't believe how fast this year is going by. Soon 2010 will be done and Katia will be turning 11. WOW! Where does time go?

Lots of love, Tracy (and the ladybug kitty cat)

September 19, 2010

Just a small update that actually is not about Katia. For those who have kept up with Katia for the many years have also followed her sisters. So, a big milestone happened for Tatiana yesterday.... she turned 18!!! Yes, I am old!! But, she has always been a great big sister to Katia through the years and remains a faithful playmate to Katia even though she is 18 now. Luckily, Katia plays with more than just dolls and stuffed animals:)

I just wanted to update on that as well.

Have a great upcoming week!

Love, Tracy

August 31, 2010

Katia had her eye appointment today, her 2nd post-op follow up. She was actually pretty eager to go to the appointment. She has been having numerous issues with both of her eyes.

The hope had been that after the surgery, her left eye would improve and her site would be better. The far hope was also that she would possibly have less pain with her eyes and less light sensitivity. That would have just solved all of the ongoing issues.

Most all of this has seemed to be tied to Katia's ongoing Graft vs. Host disease which is from her body's rejection of the stem cell transplant back in 2004.

So, since the surgery, we had gone back to the doctor a few days after the surgery and her eye appeared to be healing okay although she was sore and things were still blurry but we knew she needed more time for healing anyway.

It is now 2 weeks later and the left eye still has the same vision. Not only are things still blurry but she is having quite a bit of pain in that eye. She was checked today and the eye appears to be okay. It is really hard to get a good look at Katia's eyes due to the fact she barely is able to open the left eye and especially if there are lights on. The part of the eye that is open is now more cloudy looking. That is the part of the cornea that has damage which is why there is such blurry vision. While we were waiting in the waiting room for her appointment, Katia took off her sunglasses (which is very rare) and since there was some sunlight in the room, I noticed just how cloudy the eye actually is since I could compare it to the right eye. It looks like there is a cataract on the eye. But, it is actual cornea damage on the left eye.

Then we started talking about Katia's right eye and the issues she is having with seeing things like bugs or spiders as she explains it. Since there wasn't anything done to the right eye that could cause this disturbance, the only idea I can have is that it is a "floater" type of thing but it is definitely something we want to look at. Since we don't want to put Katia right under anesthesia again, we are going to wait until a procedure comes up and then combine them to go together so she can get her eyes looked at along with the next procedure which will probably be her next esophageal dilation. Since her vision is obviously so important and it seems to be having something to do with her ongoing GVHD (graft vs. host disease), the medications or effects of treatments or something else, we definitely don't want to let something go and then regret it.

Katia is obviously very nervous that what has happened with her left eye can happen with her right eye and she is having quite a bit of pain on and off but her pain does go away when she takes her pain meds.

Katia is due to start back with Ms. Michele this week with her school classes here at home on Tuesday and we try to always keep things "moving along" with Katia as much as possible.

I will continue to keep things updated here. Thank you so much for your concern and prayers.

Lots of love, Tracy

August 14, 2010

Katia had her eye surgery yesterday. The procedure went well. She had the cataract removed and and an interocular lens put in on the left eye. She had the tear ducts on both eyes cauterized to help with her continuous dry eyes. She had gone through punctal plugs in the past but those are temporary and due to the placement not always working and them needing to be replaced, the cauterizing seemed a better choice since Katia's GVHD is a chronic ongoing issue and the dryness is a huge part of her problem.

She was very upset when she woke up because she couldn't see anything. The left eye has a patch on it for now and the right eye had ointment in it so it was kind of stuck shut.

Right away she was having some blood pressure issues so that straightened itself out once we talked to her and eased her into trying to open her right eye and she did and was able to see out of it even though it was sticky.

She had issues for a good while with oxygen sats going down into the upper 80's and then low 90's so we were there until around 7:00ish until that straightened out.

But, we came home and she got cozy on the sofa and had some Chick-Fil-A and did good through the rest of the evening. Fozzy was happy to see her. He can always tell when she isn't feeling well so he didn't pounce all over her. He begged for her nuggets!

The brown shirt is doing its job:)

Last night she slept well. She is taking her pain meds and she has ointment to put on her eyes. Where they were cauterized, it does feel like they were burned but she says her eyes always feel like they are burning especially outside in the sun (poor thing) but she wants to be able to get back to normal? Hopefully after all of this, she will be better than her "normal".

We will go back probably on Monday to see what the change is with her vision and check on the left eye after its surgery. Overall, I am seeing the right eye and it appears good. I haven't seen the left eye at all. It is covered with a patch and I will probably leave that on through today at least. We have some drops to pick up today which will get put in every 4 hours each so really every 2 hours she will be getting drops (she is not happy about that) but it is not for long.

Thank you for your prayers. Hopefully her vision has improved with this. There was signs of more corneal damage on the lower part of the left corneal as well as the cataract but since the cataract is now gone, there is hope for improvement:)

The question is, how long has her brain been used to just using the right eye and has her left eye just become "lazy" (amblyopia). We will learn a lot when she gets her vision retested. Please keep this in prayer.

Love, Tracy

August 10, 2010

Katia's surgery date is set for this coming Friday, August 13th to go in and remove the cataract in her left eye. She is quite anxious because she doesn't like anything being done to her eyes. If you haven't been by or kept up with what has been going on lately, please see the last few updates.

Our prayer is this will go well, she will have a speedy recovery and this can have a positive outcome.

I'll update after the procedure.

Thank you so much for your prayers and concern.

Love, Tracy

August 3, 2010

No news on a surgery date yet.... I know... Katia and all of us are waiting and waiting and I sorta wish she didn't know about it until the day before really. She is pretty anxious to say the least.

She has been trying to stay busy though. Right now we try to give her something to look forward to so she can count down days to a small goal. That way she isn't so focused on the eye surgery. The older she gets, the harder it is to get her mind off of something though. But, she catches on to what we are doing and she really appreciates the effort:)

I mainly wanted to update about that because I know you are wondering if I haven't updated and something is going on or if nothing is going on and that is why I haven't updated. So, yeh...waiting.

I have been quite busy with writing. I can write actually very fast but this new task with the Examiner hasn't been to easy because it is a change from my normal style of writing so it is taking some getting used to.

Right above the journal entries, I just added a link to my area on the Examiner site. To do this for pay wouldn't be smart but you do get paid by how many people click on and read your articles, subscribe to your articles, leave comments as well as by how many articles I write and the content of my articles. Of course, anything I do, I try to always do my best. I am very lucky to have run across this because I can do it at home and at any available time I have (yes, even 2AM) so it works out well for me.

I appreciate the views I am getting. I also appreciate the ability to be able to write. I have always loved to write!

I will update with any further information regarding Katia's surgery date.

Thank you for your prayers.

Love, Tracy:)

July 24, 2010

Over the past 8 years there have been many ups and many downs. I personally think there have been more ups than downs. Katia is here with us and knowing all of the families along the way that no longer have their loved ones with them, that alone let's me know how much of a blessing it is to have each moment we do have. A day may not go well or we may receive news that aren't good but the fact is we can go through those things together. That is a blessing and Katia has always had a fighting chance. "As long as there is life, there is hope."

I will say over these last days, last week or so that Katia has been nervous and as she gets older things do bother her more. She isn't as easy to console and different things bother her in different ways. She ask questions but yet she doesn't always want the actual answer. She doesn't want something being done without being well aware of what is getting done although too much information is still a problem at her age. Mentally and emotionally Katia struggles with being at different age levels due to her ability to understand certain things because of being setback and someways although she is very able to digest a lot of information because she has been surrounded by doctors and medical information basically all her life. It is a hard balance to maintain.

It is hard to take her mind off of things for a few reasons but her mind is very much set to this right now because it is unresolved and still somewhat of a mystery to her but also because she isn't able to just do whatever she wants because of medical restrictions and our own limitations as well. However, Katia is a very very determined person and finds peace in small things still and being able to get out for a stretch or just do something small. Her laugh is very delightful and it makes anyone smile. Her smile is contagious! She makes great company:) I have learned a great deal of patience from her although both of us need brush-up lessons often if I say so myself...

I have very much appreciated the ability to share Katia's journey over the years and of course will continue to do so. It has been a relief for me at many times to be able to put into words what was happening at many times and knowing that so many people were praying for Katia, pulling for Katia as well as keeping our family and our other girls in prayer. I don't know if each of you know how much that has meant over the years but it has meant a lot!!

The other day when I was watching Katia take the eye exam and the letters kept getting bigger and bigger and she still couldn't see them, my heart really just dropped because I thought, "She is losing something else due to all of this." But, right away I did also think of the fact she is being able to see out of her right eye still and I thought of a few kids that had suddenly lost vision in both eyes while fighting their cancer. When I heard of them at those times, I just thought of how scared they must of been, how their parents must have felt.

Right now, we are waiting to hear what day her surgery will be done on which I feel will be next week. We are trying to keep Katia as positive and upbeat as possible. Of course she is very nervous about the surgery because the last eye surgery she had was the biopsy on her right eye which left her in a lot of pain with a big, puffy eye and a lot of stitches with "no no splints" on her arms. She was 3 at the time but she clearly remembers and so do we. She definitely knows this is something that has to be done in hopes to stop anymore damage from occurring and also to hope for getting better vision in her left eye.

So, please keep this in your prayers as I know you do. Thank you.

On another note. I have received a good opportunity. As most of you know since you have read my LONG post here over the years or if you are newer and haven't had to go through all of that... I do love to write.

I have been given an opportunity by The Examiner to write a regular article for Examiner.com so the link will be at the bottom with the other links. Please stop by often to check out my latest articles. This is actually something I will be getting paid for which is helpful of course and something I enjoy. There is a "Subscribe" button so you can get notified of further articles. I hope to post at least 3 a week. Don't worry, I have a limit of words so they won't be long (dang!)

I am really looking forward to the opportunity though and hopefully I can broaden my reading audience and grow.

I have another project I am working on as well but I will save that for a later date to share once I am further along with it. Hint: Katia has something to do with this project:)

I will let you know when I have more information on the surgery date. We did get her out today and I think Fozzy had the most fun chasing squirrels! He was confused about them being able to get up the trees? He just would jump up and stare at them and then sniff around the base of the tree and wait. No luck, they don't come back down.

Lots of love, Tracy

Tracy's Examiner.com Page

July 21, 2010

Katia's procedure today for her eye exam under sedation went well. Katia usually does very well with going under sedation and coming out of sedation which we are very thankful for as she requires different procedures on and off especially due to her esophageal dilations on a regular basis.

Today's procedure was different with her eyes due to the fact we really didn't know what we were going in to find other than the fact we were searching for the reason behind Katia's loss of vision in her left eye.

Before I get to what the doctor did find, I will let you know what the unanswered questions are. We still aren't sure as to how long the vision loss has been this bad. At this moment, the left eye appears to be around 20/400.

There is a reason behind me stating that at this point.

So, what he did find is this. There is a cataract, not a large cataract but a there is one on the back of the lens in the left eye. There is inflammation and the eye is very dry, both eyes show signs of GVH and dryness. The retina and optic nerve look good. So this all sounds positive right? It should. Well, that would mean if the cataract is removed then her sight would be restored? Well, that is where it comes in about how long this has been going on. Aside from the fact there is quite a bit of haze on her cornea which affects her vision as well, the other problem is this, if her vision has been distorted for a long while and Katia has been making up for it with just relying on her right eye, then during her brain's development and the time for her brain/vision coordination would be learning to communicate together, this could have caused her left eye to just become lazy and whether or not it could learn to get back to functioning is now questionable. Also, the question of whether the removing the cataract is the vision problem or the ongoing GVH and its the issues it has caused on the cornea is the reason for the vision issue (but that would be more in both eyes). So, it is really something that is more unresolved.

We are going to go ahead and deal with removing the cataract as that is something that is there and needs to be removed because it can worsen. We really won't know the outcome until after it is out and Katia has fully recovered. This will be done as soon as they can schedule the removal. We'll also go ahead and get 2 more punctal plugs put in to help with the dryness and continue with eye drops. She has been through her share of different eye drops with Restasis and numerous other ones over the last 8 years but right now Blink is working quite well for her but the punctal plugs she had put in 3 years ago helped some so hopefully 2 more will help more along with keeping up the drops.

So, what about her vision? Well, this isn't something that is looking at restoring the vision that is lost. It may help restore some. Once the cataract is removed, Katia will also have to work on getting her brain and eye to work together to see if she can regain some communication between them. The ability to this depends on how long that vision has been lost and how bad that vision loss has been for what amount of time.

There is really not a definite answer. There wasn't a clear cause found to the vision loss so there isn't a clear solution to restore the vision.

We are very glad she had both eyes full examined and her retinas check out to be in good shape, the maculas and the optic nerves.

The GVHD has definitely been an ongoing issue for Katia as well as the ongoing medication for the GVHD. This is just something that we pray will clear up for Katia and her body will some day fully accept her transplant and the GVHD will eventually go completely away.

Thank you so much for your prayers.

I will post when we have a surgery date.

Love, Tracy

July 16, 2010

So, not too many details but this doesn't appear to be good news either.

As anyone knows that has kept up with Katia through the years, her eyes have been an issue all along. Before she was even diagnosed with leukemia, she had a tumor in the orbit of her right eye. This was being dealt with by cutting off the blood flow to that tumor in April of 2002 and just after being sent home from the hospital following that surgery, she started running a fever, became extremely sore and crying and just everything really started falling apart. We returned to the ER at Tampa General Hospital where the surgery had taken place and when they did a spinal tap after blood tests had revealed a very high WBC count, they had reached the conclusion she had spinal meningitis. we were admitted right away and began treatment.

If you haven't ever read how Katia's journey began, it is on a separate page than her Caringbridge page actually. There is a link to it from the area of "Katia's Story" up near the top of the page where it says "Katia's Full Medical History" and even now when I read through that, it takes my breath away because it really has been such a journey and Katia has been so strong and such a trooper.

Well, everything started with a lot of exams and you can see that if you read the medical history so she really is very sensitive to eye exams for a few reasons. That and the fact that her eye lids are very sensitive, her eyes themselves are sensitive to both touch and the lights. That is why she is always in sunglasses.

So recently it seems they are even more sensitive than ever and she is wanting to rub them more and avoid things more and more. She has also been having issues with discharge and eye pain in her left eye especially and her eyes are mostly closed and squinted. Of course, we assume it is due to the light because we only see her eyes when the glasses are off.

Katia avoids complaining about her eyes because that will lead to an eye doctor visit.

Her last eye exam, the right eye checked out with 20/70 vision and the left eye checked out with 20/200 vision. This was at Bascom Palmer in Miami.

She had an eye visit yesterday at All Children's and she was pretty ready for the visit because her eyes, especially the left is really bothering her a lot. The older she gets, the more she is relying on them. She is picking up words and trying to read. She likes her Nintendo DS, the Wii, TV and just being able to pick up a movie and put it on. More and more, she has been avoiding these things and saying her eyes hurt and she needs to "rest them".

So, we go in and I talk to the doctor and tell him her complaints and he already knows her history, she has charts and her transplant doctor has filled him in as well. He has met Katia previously also and done eye visits in the past.

He talks to her and explains what he needs to do and she is nervous holding onto a stuffed animal but she goes through with everything as much as she can. He starts to do the vision test and with her left eye covered she isn't doing too badly, he thinks it is better than 20/70 and I am surprised she is doing as well as she does also. Then he covers up her right eye to read with her left eye and he puts the letters up on the screen and nothing. He puts a bigger letter, nothing. He blows it up, nothing. Bigger, nothing. Then the biggest letter, a great big "O", nothing. She leans forward and squints and tries but nothing. That makes it quite a bit worse than 20/200.

Since the lights and Katia not being able to really hold her eyes open for a full exam is such a problem and a really good and thorough exam needs to be done, she will go in for an exam under anesthesia this coming Wednesday to find out what could be causing this and whether or not it is reversible. Our hope is this is something that can be corrected. Katia is worried that it will not be able to be fixed. She has just been trying to work around it and not use that eye. We wish she had said something. There are always so many things going on with her and we aren't sure if this is caused from the GVHD that goes on in her eyes or a side effect of medications or just something that doesn't have anything to do with either?

I am glad they are able to get her in quickly because it is worrisome to us to say the least and it has been a big worry to Katia for a long long time now that I am able to talk to her about it. She has been very worried for a long while. She doesn't like us to worry.

So, please keep this in your prayers that the cause can be found and the problem can be found and fixed and hopefully bring her a lot of relief as well maybe for her sensitivity to light even and fix her vision. That would be amazing and wonderful!!

Lots of love, Tracy

Add on: July 18th I have gotten a lot of messages asking if there is anything I am not saying or if I am leaving anything out (like the "R" word), relapse, and no, I am telling all I know. Katia has been through a lot over the last 8 years and many of the treatments she has had have side effects as well as meds and of course, some things happen with time and cancer just sucks! Her body has been through a lot. So, as I find out more, I will post it. Thank you.

July 2, 2010

Has it been almost a month since the last update? Things have been busy around here. Katia has had her ups and downs but has remained steady with those. A concern has been with her getting dizzy and her heart rate going up which I have previously mentioned. Her blood pressure has also been up but not too high, just higher than it should be. Her cortisol level had checked out again to be below 1. So, we had raised her steroids again and it didn't seem to hold her steady throughout the entire day. What we ended up doing was raising her steroid every other day and giving her a small dose before bedtime because her heartrate was going up even during her sleep. This all has seemed to work to a point. The problem remains though that we are trying to find a way to get Katia off of the steroids and with everything we try, she ends up staying on them and at a dose that she can't seem to wean down from. She has been on steroids since early 2004. This is concerning. Katia's body and organs have gone through a lot of treatments and a lot of wear and tear but have overall remained strong. Her bones have been very affected by the steroids and obviously her growth has been affected by everything. Long term, these kids are affected by their treatments as much as they are affected by the disease itself.

I get asked quite often about Katia going through another transplant and although I have answered that on here before I feel it is always worth answering again. Katia couldn't go through another transplant unless she were to relapse with cancer and even so, to go through transplant is a very hard treatment on the body itself. Although since Katia's transplant, many changes have come about and new treatments and therapies continue to be discovered each passing year. The idea is always to come up with a cure and/or better treatments. Someone does not go through another transplant though to treat the side effects from a previous transplant or effects from the rejection of a previous transplant.

I didn't come here to give a "downer" update. Quite the opposite actually! Katia is happy that summer here. She is enjoying having a "break from school". I say it that way because anyone that knows me knows that school really never stops. I have a summer book that has activities in it that will review what she has learned so that way her brain will retain the information:)

She is enjoying playing with Fozzy though and a few outings we have done. We went to go see "Eclipse"! Yep, we are big Twilight fans!! Team Edward! I can't believe Katia is 10 1/2. She is moving right along. It is hard to believe isn't it?? When the 3 girls are together I just look at them and listen to them and I am amazed that they are the same 3 girls that used to sit around in the hospital playing with little Disney Characters with Katia. They are all still very very close and Katia will always the baby in the family. If you are on FB, you have seen the recent pictures and you can see the girls and how they have grown up. Everyone moves on and life does continue. As much as we as parents wish we could keep everything in a certain way and hold onto a certain moment in time, we learned on April 15, 2002 that doesn't happen.

If you look up on this site, read the poem "Mommy Makes It Better" and "If Only For A Moment". I think those are for any child from a parent. Things move along but we always want the best for our kids and that never changes no matter how old they get or where they are.

Katia has been so lucky that so many have followed her story, followed her journey and prayed for her. So many have kept her moments of happiness and her moments of sadness or hurt in their hearts. I am grateful for that.

I have heard from many about your going and registering as a Marrow Donor or donating blood to help others and luckily a great number have heard back that you are a match. Currently, one has just donated her marrow to her recipient!! I love hearing from you. Many have passed along Katia's story to share with others and let them know the importance of what these selfless actions can do. I know not everyone can donate blood products and you have helped by telling others. I hope I have shared my appreciation through the years.

I have always appreciated your guestbook entries and hearing your emails and personal stories. Sadly, I have heard of others being diagnosed through the years after they have been following Katia. I have heard of peoples' passing and yet their families continue to follow Katia or continue to stay in contact with me.

The LadybugKatia.com and the links available over there. I have continued to add to the Informational Links. If you haven't dropped by there for a bit, check it out. Down near the bottom, there are some excellent links for kids that are both fun and educational (yep, educational-you know me)

So, hopefully that catches up a few things going into summer.

I pray everyone will have a safe and happy 4th of July.

Love, Tracy

PS Sheila, email me so we can work out this FB issue. We will get connected:)
tmsol87@aol.com

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

June 8, 2010

Katia is feeling better each day. She is eating more normal and swallowing okay now. The biopsies came back and nothing has showed up wrong with any of the biopsies they sent off so that is good.

Today was actually her last day of school with Ms. Michele. For some reason Katia thought last Thursday was but that was just a mixup.

Overall Katia is quite tired these days and napping on and off but we did find out her cortisol level is still low but nothing is changing with her medication levels at this time.

The appointment with the endocronologist went well and her growth to date..... (drum roll here)

She has grown 2cm since December 2009!!!

That doesn't sound like much but Katia has only grown 15 cm since April 2002 so in Katia's world, 2cm is something I guess. We are going to stick to the same dose of growth hormones. At the moment, that puts her at 100.5 cm. So, she is 3' 3.5" to put it the way most people measure. Currently she weighs 17.7 kg which is 39 lbs.

In April 2002 she was 85.5cm which is 2' 9" and weighed 12.4kg which is 27 1/2 lbs.

So, in 8 years she has grown about 6" and gained about 12 lbs. At least she is on her way up and she is happy. That is what matters the most:)

It isn't the size of the package but the quality of the package:)

Thank you so much for all of your prayers.

Lots of love, Tracy

PS Shiela, drop me an email. I don't have your email address but I am not sure why you aren't seeing my status updates on Facebook. I don't see you in my Friend list though either?? Maybe we have a Facebook issue. Check yours and maybe send me a Friend Request or I can send you one if I know your email address that you used to sign up on Facebook.

June 4, 2010

Katia had her esophageal dilation done today as well as a good look into her intestines and biopsies done. The idea that this continues to occur has not yet been figured out why.

She came home very sore and has had to take codeine 3 times so far and has not been able to eat. She did manage to drink a bit of slim fast which is good because it always gets a good deal of nutrients in her that she really needs. She is always good about getting water in as well. Even if it hurts, she knows the importance as that has been drilled into her for years.

Basically she spent the day laying down and trying to sleep it off and hoping that a nap would allow her to wake up and feel better.

This procedure is basically going in and stretching the esophagus open. Hers gets so tightly closed that she starts choking on nearly everything but she has started avoiding eating things because she knows it will make her choke so she limits her diet and starts to lose weight. We have found a really good way to avoid the weight loss is to supplement her meals with slim fast and getting her to eat small things throughout the day as it does add up.

What causes the soreness is basically the stretching out of the esophagus and maybe a little from the biopsies taken. Katia is used to a certain amount of consistant pain so when she complains, I know she is in more pain than usual and when she is upset by it, I know it is substantial.

As of lately, she has been complaining about pain all over more and more. She does have a problem with her fingers getting stuck in bent positions or in a way that they are almost bent backwards. Her knees are starting to get stuck as well. Mind you, she has started on growth hormones since February 12th so this is something I plan to ask them this coming Monday at our appointment. The fingers though were happening before she started the growth hormones and through different blood tests, nothing has been able to find an answer.

I myself have similar issues with no answers and Tatiana also has similar issues. Katia just has so many things that come about and land on her already growing amount of painful effects.

Her Graft vs. Host seems to improve at times and other times flare up.

With her recent cortisol level dropping below 1.0, we had to go back up on her steroids and the cortisol level was again checked today because her blood pressures and heart rates are still higher than they should be even when she is resting. I was a bit concerned even with her having this procedure today but thankfully it went well.

Hopefully her cortisol level is getting closer to normal and her steroids can stay at the same dose but the question would remain why is her blood pressure and heart rate higher than they were. Her EKG and Echo were all good.

So many questions and this is 6 years post transplant. so many times, years following transplant, patients deal with many after effects of chemo, radiation, treatments and transplants and really most people don't know this because people don't share this information. I try to share Katia's story for this reason. There are many patients just being diagnosed or just heading into transplant or 100 days out, a year out or further out and it is nice to know when you aren't alone.

In many aspects of life when you think you are alone, you are definitely not alone. Just knowing that brings a great deal of comfort.

I can say one thing I wish we were alone in would be the world of cancer. I wish nobody else ever had to go through cancer. Nobody should have to go through cancer. I wish the disease would come to an end. I wish nobody else would have to hear the words their loved one has cancer, they have cancer or someone they love is dying from cancer. Cancer sucks.

But, if it is in your life, knowing you are not alone is something that can make the journey better and I have always hoped sharing Katia's journey would do that.

I will update later.

Lots of love, Tracy:)

May 31, 2010

Short update... just a few things to bring you up on.

So Fozzy? Well he is all back up to par! He still has his little giblets but as soon as we get the go ahead and the voucher (I should call and check up on that), they are coming off. He is already used to be dressed in girl clothes and dragged around here so it is possible his "manhood" has already gone down the drain? Anyways, now that he is feeling good, chop chop.... It will be good for him in the long run.

Secondly, Katia is feeling a bit better. Still having issues with the BP and heart rate but it is improving so I am not sure if we are going to adjust the steroids again or just leave them where they are. We will see. But we are going to wean them differently next time we start weaning. At some point, some day, we hope to be able to get her off of the steroids completely.

Katia's throat (the esophageal dilation) is scheduled to be done June 4th. At the moment, it is feeling pretty tight to her and making it hard for her to eat so hopefully this procedure goes better than the last time. Last time everything turned out okay in the long run, the problem came about because they used a different medication to sedate her. Anyway, that won't happen again...

So, that is all that is going on here. Katia is very ready for a "break" from school although I have a Summer School Book of FUN ACTIVITIES to do with her as well as some reading for her to continue over the summer "break". Don't want that mind to go to waste:)

I have been getting back to writing again which is nice because I have been under a total "brain fog" for quite a while due to my seizures and some of my medications but with some medication changes, I am feeling a little more "clear!" So, I restarted my blog but this time it isn't a personal blog. The address is below.

With the closing of the Message Board some time back, I have gotten some messages via the guestbook or email about whether I would start a new one or not or any other projects in the future. For now, I am sticking to what I have going. The ladybugkatia.com site stays quite active and I do add links to the "Informational Links" site that is linked from there. I do need to update the "Kid's Link" page. The KSF site is regularly updated and we remain active with our Foundation (katiasolomonfoundation.org). We are also very active with Be The Match (bethematch.org) and a Patient Advocacy Group they started which we are on.

Between Katia's health and ssues with my own, having down time is good.

I have been getting back into reading lately and I LOVE it! I haven't read for so long (makes me sound illiterate almost) that I nearly forgot how much a book can draw you in. Well, I did read the Twilight Series (all of them) in about 10 days but that was different.

I would recommend the book, "The Walk" by Richard Paul Evans. It was the first book I had read in a while and snapped me right back into my love for reading.

If you are a friend of mine on Facebook, you can see some of the books I have read, am reading and want to read in my WeRead list.

You like my "Short Update"?

Lots of love, Tracy

May 20, 2010

Yep! Another update:)

So soon, you ask??

Well, I left you with a bit of unanswered questions so I came back to answer them as best I can.

Katia has been having ups and downs lately. Not feeling well. Having high blood pressures and heartrates, going to bed early and tired throughout the day, body aches, etc....

Well, her cortisol level was again below 1.0. Normal levels depend on the time of day a blood test is taken but average between 3-15 or so. Below 1 is not good. The reason
Katia's gets messed up is due to her being on steroids for so long (since 2004) and when we try to wean her adrenal function isn't what it should be so we have to go back up on her steroids (which is what we are doing) and try a different or slower a approach.

So, we should see a significant improvement hopefully.

As far as her esophageal dilation, that should take place near the end of next week once this has had a chance to hopefully straighten out some and her blood pressure/heart rate to regulate some.

On another note, Fozzy has been sick. Poor little puppy. He has just not been himself.

It started with him seeming to be in quite a bit of belly pain and not wanting to be picked up or do much of anything. Finally he went to the bathroom (pooped-he doesn't care what I write about!) and that seemed to help. We then came to the conclusion that it was a recent change to his diet. He will get all spunky and run around like normal but then the least thing like someone picking him up or like today he pulled the phone down by its wire, he is back to acting weird again. Yesterday it seemed it was his "goodies" so we decided it is time to neuter him and have sent off for a voucher from the County Neuter/Spay Program and the vet we have used before takes the Voucher (which is great because they are wonderful and it will cost less). We just hope he doesn't have an issue we don't see going on. Fozzy is a very special part of our family!!! He and Katia and connected at the hip as well as the rest of us (I won't lie-we LOVE the doggie and talk about him like he is one of our kids!) I just hope he is 100 percent back to himself soon because he deserves to feel great:) It is hard not knowing what is going on with him.

I will update when anything changes. I promise:)

Love, Tracy

PS IF YOU ARE ON FB, JOIN ME OVER THERE. INCLUDE A NOTE WITH YOUR FRIEND REQUEST THAT YOU ARE COMING FROM CARINGBRIDGE. I ADD NEW PICTURES OVER THERE AND SOMETIMES UPLOAD FROM MOBILE:)

May 13, 2010

Hiya!

So, a little catch up since I haven't updated for a bit.

You know Katia has been on growth hormones since February 12th so that makes 3 months now. She has an appointment coming up (not sure exactly what the date is but in a few weeks) to check her height and see if the dose stays the same. That appointment is with her endocronologist.

I can say she has been having some ups and downs that make me think (hope) she is growing. She has been pretty tired lately and having body aches. We are saying they are growing pains since they have been seeming to worsen the longer she is on these daily shots. She is doing a good job taking the injections though, no real complaining besides an occasional, "OUCH!"

She is very ready for bed around 8:00 each night and just pretty dragged out hthrough the evening time each day. Katia is not your "active" child on a normal basis on any given day compared to other kids her age but she is quite inactive compared to her typical self. So, we will see.

She is also having issues with her esophagus again closing up so that is going to have be dilated again before it causes her to start choking too much. Right now she is just not wanting to eat certain things and is more sticking to soft foods but she knows it needs to be done. She can feel how tight it is and just knows the procedure needs to get done. It is better that she can know the difference between when it feels "right" and when it feels "wrong". So, we have that to schedule as well. The last time didn't go too smoothly so hopefully this time will go better. It takes a few days to a week to heal once she gets it done but it seemed to last a while after the last time so that was good.

Katia has been enjoying free time lately and her new movie to watch has been "Cats", the one from broadway... Yep! She has a tail and a set of ears and it is going to become permantly attached if she wears it much longer. I will really try to get a picture of this. She isn't too picture happy right now due to her eyes but sunglasses will just add to the outfit in this case! I am not sure how long this has been going on but having heard this movie going and going and going, it seems like forever to me.

It is kind of between that and waiting for "Alice in Wonderland" to be released! What is taking so long??? She did see that at the theatre. It was good!

We are all, most of us... "Twilight Saga" people here. So, the day is nearing for the next release in the Saga. That is what happens with a house of all girls.

So, that is what is up here. If you are on FB, I will try add some pics on there.... try. It is hard to get anything with Katia without those sunglasses so they will most likely always be with sunglasses. Her eyes just seem to be staying the same for the most part.

If you aren't on FB?? I am not sure when the last time is I added pictures on here, I should though. Really. I will try to make a point of it.

I am working on a blog... planning to be a lot better at it and just did a really long one. It isn't a personal blog this time (which will make it easier for me to work with) so drop by and check it out and pass the link along if you will).

www.tracysolomon.blogspot.com

Have a great evening:)

Love, Tracy

April 15, 2010

TAX DAY 2002

Has there ever been a moment when it seemed everything around you was going in fast motion and your world suddenly slowed down to slow motion, sound started to echo and you felt like possibly your head could rupture at any moment? Well, that was this day for me 8 years ago. Most people refer to April 15th as Tax Day. But, to me, it is the day my, then 2 year old was diagnosed with cancer. My world stopped. Well, my world as I knew it then. Everything changed and has never gone back to the way it was before that day.

Today though, she is 10 years old. She is one of the lucky ones. That word lucky is used so many different ways. Some people are lucky because they win a lot of money or they didn’t get caught doing something they shouldn’t have done. I guess either way, “lucky” would be a word that could fit in both cases. Other people use the word “lucky” when they get home and find out their house was destroyed by fire and they weren’t home at the time or their car was nearly hit by a train by mere seconds… (that is much more than luck!)

In today’s world, many people consider themselves lucky to still have their job or to find a new job and yes, they are lucky and grateful and blessed. There is always the opposite of lucky which I guess would be unlucky but I don’t like to just say someone is unlucky because things don’t just play out due to luck. There are a lot of things that are unfortunate and we see that more and more.

But, today I am going to focus on what started 8 years ago.

The world, our world at least, came crashing down! We weren’t thinking about taxes, what I was going to make for dinner, what was going to happen at school the next day…. Heck, I don’t think I even gave thought to if I picked up my purse before we headed from one hospital to the next. Really, everything just stopped for a while. I didn’t feel like someone hit me with a bunch of bad news or anything because for our youngest daughter, things had been going downhill for a few months. She had been going from one doctor to the next for a while. You want answers to why things are going wrong but you never want the answer to be CANCER! Not that answer! You can have that back and give me another answer, thank you.

I remember though my first instinct was to not act upset in front of my daughter, Katia (she was the one that was just diagnosed). She was just a 2 year old little girl that had already seen too many doctors, been through too many procedures and had just spent too much time feeling bad lately. I knew enough about what I was hearing to know a few things right off the bat.

1.Cancer is not always a death sentence.

2.This was going to mean a lot of explaining to her sisters (then ages 7 and 11)

3.Katia was going to get much more sick before she had a chance to get better.

4.We were going to have to face this with a very positive attitude.

All of that was just buzzing in my head and we were put into an ambulance to head across the Bay Area to another hospital that a Pediatric Oncology Unit. This would end up being home away from home for us over the coming years.

Pediatric Oncology Specialist, Nurses, Staff are amazing people!

On the way over, Katia was just sleepy and not feeling well but the ambulance had a lot of things kind of bouncing around and it would scare her at times and other time amuse her. I was watching the traffic outside and thinking how I had crossed over the same bridge so many times and never thought about how many people’s lives had possibly changed just as ours were at the moment. People just don’t think about that. I was thinking about the fact I had never imagined one of my kids would be one of those little children fighting cancer. People don’t think about that either. I was trying to imagine what would happen next and I couldn’t. I am a planner. I don’t like not knowing what is coming up next and my whole world now was all about not knowing what was next. I didn’t know anything about tomorrow. I didn’t know anything it seemed! How could my baby have cancer in her and I have never known? I knew everything about her.

When we were wheeled up to the Oncology Unit, different patients and parents were watching us and we were looking around while also being talked to and shown to a room. A lot happened on that day. But, I will never forget that day. We were the “New Family” on the Pediatric Oncology Unit. Over the years, we have seen that many times when new families come up and you never ever want to see that happen. I wish we had been the last ones to enter as new patients.

We went over a lot of paperwork that day. Katia had a lot of blood work done and more set up for the next day. We had a lot of visitors between family and friends. Everyone was just shocked when they heard she had been diagnosed with cancer. She had been diagnosed with Acute Myelogenous leukemia. She was very sick and had a long fight with very intense treatments ahead of her. She has not had an easy road, nor a predictable road since that time but the fact is her road is a continuing road.

Katia’s journey has been full of blessings and we have been so fortunate to have met many wonderful people along the way and that we are able to work with still. She has amazing doctors and receives at All Children’s in St. Pete where they have always gone above and beyond to give the best of care and stayed ahead of Katia’s care. Is Katia lucky?? By all means! Katia loves ladybugs and ladybugs are said to bring a person luck so I suppose she is surrounded by luck. Katia has also had a life full of miracles.

So, on Tax Day 2010 I can’t help but to always think how much our life CHANGED on Tax Day 2002 and continues to change each day.

“The great use of life is to spend it on something that will outlast it.” James Truslow Adams

Love, Tracy

March 25, 2010

Just a quick update here. Things are moving along here. Katia has been doing well with her shots and it may just be Tatiana but she thinks Katia looks a wee bit taller???

I am proud of Katia for handling the shots. When each of them are done, she reminds me, "You know, these hurt?"

She is doing well with her homework and school work. She is moving on to vocabulary! I am excited, call me a nerd but I used to LOVE vocabulary!

Love, Tracy

March 6, 2010

Well, nearly 1 month on growth hormones (it will be one month on the 12th).

Katia isn't liking the nightly shots (who would). She has done well with them though. Of course, I knew she would be a trooper. No bad reactions or anything.

We have also taken her off of Pentamindine infusions and put her back on Septra, something she was on quite a long time ago. No other changes to speak of. We are leaving steroids alone for now.

Katia is doing a bit better with reading. We are really really working on reading and asking questions to see how well she is understanding and grasping the meaning of what she is reading. I really hope she will get to the point that reading will delight her!

Math.... well, that is another story. Just not moving along in that department. We are trying to see how to get her tested to see where she is as far as a learning curve. She is around a 1st grade level in Math and reading is maybe a 2nd grade level but writing is back to a 1st grade level maybe. Getting tested, as many people know is not something easy to do for anyone.

It is funny when I check the guestbook and see your entries (especially Janice!). Thank you guys for continuing to check in on my very bad updating skills. They are horrible, aren't they??

I do "think" updates but my fingers just don't get on here and type them (dang fingers!).

I have thought many times about writing different books but thankfully that has never happened as we know that probably would not get done. Although I have written some very lengthy emails that the readers would probably say is like a book:)

Ms. Katia these days is feeling up and down. She still has very bothersome eye issues on some days and other days, they aren't so bad. She has nausea issues many days and her throat is beginning its issue so I know it is again thinning and she will need another dilation procedure here soon. Emotionally, she is having issues as well which we never had problems with when she was younger but as she grows older, this is more of a concern so we are dealing with ways of Katia coping with her day to day medical issues as well as her emotions.

So many of you have followed her for so long that you can understand the toll much of this has taken on her. However, Katia is one tough little ladybug and has a heart of gold but she is also cancer free and we are all so grateful for that each day. That brings a joy that makes cloudy days brighter:)

Lots of love,

Tracy

PS This coming Tuesday is Fashion Funds the Cure at Saks again. Looking forward to seeing you out there!

February 5, 2010

HAPPY 6 YEAR TRANSPLANT ANNIVERSARY KATIA!

Yep, today is 6 years since Katia had her cord blood transplant. This is a big milestone. Every day is a miracle day for Katia in our eyes but these yearly anniversaries are big events and a reminder of all the steps it took to get Katia the care she needed and everyone involved. I was reading over the journal history back in 2002, 2003, 2004, etc. So much has gone on in Katia's life and so many people were involved in Katia's care.

So many people came forward when Katia relapsed to try to help find her a marrow match. It was overwhelming really.

The thought of those mothers that donate their baby's umbilical cord for someone they don't even know is just so heartwarming and again, I want to say THANKYOU!

I always want to say thank you to everyone that donates blood products because by doing so, you are an active part of saving lives. For those that are unable to donate blood due to health problems, please let others know about the need.

Also the need for marrow/umbilical cord donation. For more info, you can visit www.marrow.org

I want to thank each of you for visiting this site and following Katia's journey. Her journey is continuing.

So, we have the brain MRI out of the way. No results yet but when those are in, the next step should be starting the growth hormones. We have changed over from the Pentamindine Infusions to Septra 3 days a week also so a few things are changing.

PLUS, we had our first visits into the new All Children's Hospital in St. Pete! It is really fabulous! What a beautiful hospital! Hope you never have to be a patient there but it really is fantastic. They have thought of everything it seems. Katia was giving everything 2 thumbs up!

I want to thank each of you for your birthday cards for Katia. So sweet! She really enjoyed the mail!

Hope everyone has a great weekend:)

Love, Tracy

January 26, 2010

HAPPY 10TH BIRTHDAY KATIA!!!! TWO WHOLE HANDS!!

WOW, I CAN'T BELIEVE THIS DAY IS FINALLY HERE. I WOULD SAY TIME HAS FLOWN BY BUT SO MUCH HAS LEAD TO THIS DAY.

SO MANY PEOPLE HAVE BEEN SUCH A BIG PART OF YOUR LIFE, OUR LIVES.

ALTHOUGH YOU HAVE BEEN THROUGH SO MUCH, YOU LIVE YOUR LIFE EACH DAY AND KEEP GOING ON. YOU JUST DO WHAT YOU HAVE TO DO. I AM SO ENCOURAGED BY YOU AND HAVE LEARNED SO MUCH FROM YOU.

YOU ARE IN SO MANY WAYS DIFFERENT FROM THE AVERAGE 10 YEAR OLD BUT THEN, IS THERE REALLY AN AVERAGE 10 YEAR OLD?

YOUR LIFE IS A MIRACLE!! GOD HAS BIG PLANS FOR YOU STILL BUT I THINK SO MUCH HAS BEEN SHOWN THROUGH YOUR LIFE ALREADY AND SO MANY LIVES HAVE BEEN TOUCHED THROUGH YOU. AS I LOOK THROUGH THE GUESTBOOK, I CAN SEE THAT.

I THINK BACK ON HOW MANY PEOPLE HAVE BEEN SUCH AN ENCOURAGEMENT TO US AND HAVE REACHED OUT TO US, HOW MANY WONDERFUL PEOPLE HAVE CONTINUOUSLY GIVEN OF THEIR TIME TO SHOW HOW MUCH THEY LOVED YOU AND CARED FOR YOU.

PEOPLE ARE AMAZING. PEOPLE FROM ALL OVER THE WORLD. OUR LITTLE LADYBUG HAS TOUCHED A LOT OF LIVES AND I KNOW GOD HAS SO MANY PLANS FOR YOU STILL.

SO AS YOU ENJOY YOUR BIRTHDAY TODAY, I LOOK FORWARD TO YOU HAVING MANY MORE. MAY GOD CONTINUE TO BLESS YOU MY SWEETIE:)

TAKE GOOD CARE OF THE BROWN SHIRT, IT HAS TO LAST YOU A LONG LONG LONG TIME!!

LOVE, MOMMY

January 15, 2010

Well, we are coming up to a very big day for Ms. Ladybug! She is going to be turning 10!!!

Can you believe it??

Wow!

She is still just as cuddly as ever though and loves to snuggle but yep, she is going to be 2 full hands of 5 fingers! I remember when she was turning 5 and was so excited about being a "full hand old".

Katia is such a miracle and we are so very blessed and grateful.

We are so thankful to everyone who has come into our lives and prayed for Katia and continues to do so.

She is steadily moving along. currently she has a cold that just won't leave her be but her IGG level is low so she is going to get some IVIG this coming week and maybe that will boost her enough to kick the cold.

The growth hormones are still on hold but they will hopefully get here soon enough. The hold up has been scheduling the brain MRI but it will all get worked out.

I will definitely update with those news. Please feel free to follow me over on FB (include a note with your friend request you are coming from Caringbridge). I am a bit better with status updates... I promise.

Following all of this news on Haiti truly shows how each blessing and day in our life is something to give thanks for. Katia and I were talking about it and I told her that in the length of time it takes for a commercial to play (we sat through a commercial), their lives changed forever. Katia has a lot of compassion for others and the thought of someone not being able to go get medical help is something that really bothers her. Her doctor is near as important as I am to her.

It amazes me how, in so many ways, Katia is so mature for her age and in others she is also so much Mommy's little baby and so loving and kind and snuggly.

Speaking of snuggly, it is late and someone needs to go to bed because it is way past her bedtime..... so I should get Katia to bed too:)

Lots of love, Tracy

PS Look me up on FB tmsol87@aol.com (include the note)

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

February 5, 2010

HAPPY 6 YEAR TRANSPLANT ANNIVERSARY KATIA!

Yep, today is 6 years since Katia had her cord blood transplant. This is a big milestone. Every day is a miracle day for Katia in our eyes but these yearly anniversaries are big events and a reminder of all the steps it took to get Katia the care she needed and everyone involved. I was reading over the journal history back in 2002, 2003, 2004, etc. So much has gone on in Katia's life and so many people were involved in Katia's care.

So many people came forward when Katia relapsed to try to help find her a marrow match. It was overwhelming really.

The thought of those mothers that donate their baby's umbilical cord for someone they don't even know is just so heartwarming and again, I want to say THANKYOU!

I always want to say thank you to everyone that donates blood products because by doing so, you are an active part of saving lives. For those that are unable to donate blood due to health problems, please let others know about the need.

Also the need for marrow/umbilical cord donation. For more info, you can visit www.marrow.org

I want to thank each of you for visiting this site and following Katia's journey. Her journey is continuing.

So, we have the brain MRI out of the way. No results yet but when those are in, the next step should be starting the growth hormones. We have changed over from the Pentamindine Infusions to Septra 3 days a week also so a few things are changing.

PLUS, we had our first visits into the new All Children's Hospital in St. Pete! It is really fabulous! What a beautiful hospital! Hope you never have to be a patient there but it really is fantastic. They have thought of everything it seems. Katia was giving everything 2 thumbs up!

I want to thank each of you for your birthday cards for Katia. So sweet! She really enjoyed the mail!

Hope everyone has a great weekend:)

Love, Tracy

January 26, 2010

HAPPY 10TH BIRTHDAY KATIA!!!! TWO WHOLE HANDS!!

WOW, I CAN'T BELIEVE THIS DAY IS FINALLY HERE. I WOULD SAY TIME HAS FLOWN BY BUT SO MUCH HAS LEAD TO THIS DAY.

SO MANY PEOPLE HAVE BEEN SUCH A BIG PART OF YOUR LIFE, OUR LIVES.

ALTHOUGH YOU HAVE BEEN THROUGH SO MUCH, YOU LIVE YOUR LIFE EACH DAY AND KEEP GOING ON. YOU JUST DO WHAT YOU HAVE TO DO. I AM SO ENCOURAGED BY YOU AND HAVE LEARNED SO MUCH FROM YOU.

YOU ARE IN SO MANY WAYS DIFFERENT FROM THE AVERAGE 10 YEAR OLD BUT THEN, IS THERE REALLY AN AVERAGE 10 YEAR OLD?

YOUR LIFE IS A MIRACLE!! GOD HAS BIG PLANS FOR YOU STILL BUT I THINK SO MUCH HAS BEEN SHOWN THROUGH YOUR LIFE ALREADY AND SO MANY LIVES HAVE BEEN TOUCHED THROUGH YOU. AS I LOOK THROUGH THE GUESTBOOK, I CAN SEE THAT.

I THINK BACK ON HOW MANY PEOPLE HAVE BEEN SUCH AN ENCOURAGEMENT TO US AND HAVE REACHED OUT TO US, HOW MANY WONDERFUL PEOPLE HAVE CONTINUOUSLY GIVEN OF THEIR TIME TO SHOW HOW MUCH THEY LOVED YOU AND CARED FOR YOU.

PEOPLE ARE AMAZING. PEOPLE FROM ALL OVER THE WORLD. OUR LITTLE LADYBUG HAS TOUCHED A LOT OF LIVES AND I KNOW GOD HAS SO MANY PLANS FOR YOU STILL.

SO AS YOU ENJOY YOUR BIRTHDAY TODAY, I LOOK FORWARD TO YOU HAVING MANY MORE. MAY GOD CONTINUE TO BLESS YOU MY SWEETIE:)

TAKE GOOD CARE OF THE BROWN SHIRT, IT HAS TO LAST YOU A LONG LONG LONG TIME!!

LOVE, MOMMY

January 15, 2009

Well, we are coming up to a very big day for Ms. Ladybug! She is going to be turning 10!!!

Can you believe it??

Wow!

She is still just as cuddly as ever though and loves to snuggle but yep, she is going to be 2 full hands of 5 fingers! I remember when she was turning 5 and was so excited about being a "full hand old".

Katia is such a miracle and we are so very blessed and grateful.

We are so thankful to everyone who has come into our lives and prayed for Katia and continues to do so.

She is steadily moving along. currently she has a cold that just won't leave her be but her IGG level is low so she is going to get some IVIG this coming week and maybe that will boost her enough to kick the cold.

The growth hormones are still on hold but they will hopefully get here soon enough. The hold up has been scheduling the brain MRI but it will all get worked out.

I will definitely update with those news. Please feel free to follow me over on FB (include a note with your friend request you are coming from Caringbridge). I am a bit better with status updates... I promise.

Following all of this news on Haiti truly shows how each blessing and day in our life is something to give thanks for. Katia and I were talking about it and I told her that in the length of time it takes for a commercial to play (we sat through a commercial), their lives changed forever. Katia has a lot of compassion for others and the thought of someone not being able to go get medical help is something that really bothers her. Her doctor is near as important as I am to her.

It amazes me how, in so many ways, Katia is so mature for her age and in others she is also so much Mommy's little baby and so loving and kind and snuggly.

Speaking of snuggly, it is late and someone needs to go to bed because it is way past her bedtime..... so I should get Katia to bed too:)

Lots of love, Tracy

PS Look me up on FB tmsol87@aol.com (include the note)

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

December 16, 2009

"A Man in a Suit..."

Okay, so I had to share this. It is just one of those moments.

So, Katia is growing up. We knew this would happen... eventually. She may not be growing up in height but man is she growing up in other ways. More like catching on to things. Not totally, thank goodness because Christmas is really cute when kids still have that twinkle in their eyes over Santa:)

So, Katia had been working really hard on her Christmas list. She didn't want to start before Thanksgiving because she thought that would bring bad luck on getting what she wanted?? So, she got right to it after Thanksgiving. She has a very hard time with writing her letters correctly and spelling. It is quite a struggle for her but she wanted to do her list by herself so she would sit down and wait for commercials to come on, pause them and write down the item or go through ads that came in the mail... you get the fact, she worked hard on this list. She had about 10 items maybe. Doesn't sound like much but it was her list. She decorated it very very nicely. I was really impressed with the decorations. Katia can color!

So, my idea was to get it scanned and then drop the letter in the Macy's box. But, Katia wanted to see Santa at the mall. We try to get her there on a day it isn't busy so that is what we did. I had gone there earlier in the week and basically, on the weekday, it wasn't at all busy with the kids not out of school yet. So, we went to see Santa.

Katia was all decked out and looking cute! She had her letter in her pocket and she was ready to show Santa her list. Well, we get there and there was only a few kids in line and Katia was last so we waited and since there was nobody after Katia, she spent a good amount of time with Santa going over her list.

First impressions of Katia with most people is that she is much younger than she really is due to her size so once Santa realized he had a real talker on his hands, he gave her some time to chat. I was talking to the person who was taking pictures. We didn't chose to get a picture so when Katia was done, we were headed out and Santa was headed out to break. I guess he needed some milk and cookies:)

I was surprised when he pulled out Katia's list and told her he would keep it safe or something (I forget exactly what he said but the fact is, he had the list). I had never scanned it. But, it was Katia's decision and she seemed quite happy that Santa had her list!

So, we were off and all was well with the world.

TWO DAYS LATER.

So, we are home and Tatiana and a friend are doing something in the house and Katia is in my room (where the news is playing) and I think I was probably back and forth around the house when a little 9 year old suddenly walks up to her sister and abruptly tells her, "I GAVE MY LIST TO A MAN IN A SUIT!!"

Tatiana told her of course that Santa has helpers and they all work for him... (you know something along those lines)

Then Katia sticking to her discovery, "NO, I GAVE MY LETTER TO A MAN IN A SUIT!!"

Tatiana's friend backs up the situation of Santa's helpers...

It isn't getting anywhere with Katia. She is pretty stubborn. She was watching the news and it was a story about Santa school? I don't know the full story because we don't want to go on and on about it but it was extremely hard not to burst out laughing by the way she was so abrupt and direct.

When Katia means business, she means business and this just wasn't right to her.

She has since come back around that this was a news story that was to that area and not everywhere so her dream is not over but she is going to be 10 next month. Our little girl is growing up. She needs to stay away from the news. I am a news junky!

She wasn't able to remember her list but I was able to remember some of the things because she asked me about some of the spelling on and off.

Fozzy will be 3 on Christmas day as well so she is preparing for his birthday as well. His gift is wrapped. Katia is forever wrapping something up and giving it to us. She reminds me of the Chipmunks on Alvin and the Chipmunks when they give Dave back his things:)

No, but it is very sweet. She is always taking care of us and drawing pictures when someone doesn't feel well. Very sweet!

So, I wanted to share her experience with "The Man in the Suit".

Lots of love, Tracy

December 6, 2009

The tree is up and it has actually been a little chilly in Florida, well chilly for us. It has gotten into the 50's here. Downright cold to me!

I can't believe how fast this year has gone by. It really seems like it should be July or something.

Katia is very eager for Christmas to be here already. She was happy with Thanksgiving and the parade but now it is time for Christmas.

Katia's growth hormones have been approved through insurance so now it is up to getting the last few tests run. She had the blood draws at clinic this past week and the MRI should be scheduled soon.

She has been having quite a few "rough patches" lately both physically and emotionally so this is going to be a big step for her to add something else on. As she gets older, she thinks a lot more about everything and she also holds a lot more inside. This is a lot for anyone but for kids that have gone through this since before they could communicate, I am not really sure how that would feel.

Katia has always been one to talk a lot since she learned to talk. She has also been one to ask a lot of questions, especially to me. When she didn't understand something at clinic or a procedure coming up, she would ask me and then I would ask. Now though, she talks more. She still uses me though.

Over the last year, Katia is much more expressive in her heart to heart talks especially when she feels bad and she wants to understand everything, which is most always good but can get confusing to really explain without getting too detailed. It is hard to explain to most adults sometimes.

Recently, a lot of things been weighing on Katia and it has been very hard for her to handle. At times, it comes out in the way of tantrums or just not being able to sleep or being very high strung constantly. Of course, this is not something unexpected. As always we are very grateful for a wonderful doctor and medical team especially now as we are about to move ahead with a new treatment in growth hormones. So, please keep Katia in your prayers with all of this.

I hope each of you are having a good holiday season and as it gets colder in your areas, it remains nice and not too unbearable. We'll send you some Florida sunshine:)

Love, Tracy (and Katia)

PS
If you find me over on Facebook (tmsol87@aol.com), please attach a note to the Friend Request that you are coming from Katia's Caringbridge Site. Thanks:)

November 29, 2009

Okay, so what has been going on recently? I keep letting time go by and then I have to think back (I am not very good at that these days) and try to remember what has gone on.

Well, we did have a bit of an "incident" happen. I know a few of you follow on Facebook and know we had a trip to the ER after Katia had a slip up with "safety" scissors! I have to explain this to you a bit. I was in the bathroom putting on makeup and she walks in and says something like, "I cut..." so I glanced over (mind you she wasn't crying and her voice was totally normal tone and matter-of-factly) and I see her with this cloth on her hand slightly held there with a gushing amount of blood and blood dripping! Now I am not one to panic at all, rarely ever. But, I did move quicker than I can imagine and grabbed the cloth and tried to see where the blood was coming from and swooped her up and over to the sink to put it under water. I was guessing either her hand was gashed or a finger was missing. KATIA LOVES SCISSORS! She only has safety scissors though so in my head I am thinking, "she cut herself, she cut herself, please let this just be a cut, dang this is a lot of blood!"

Finally, I am thinking I see the source of the blood. It took a while to see her hand and then the tips of all the fingers. Katia has some seriously bright red blood (I will get to that later). The middle finger on her left hand has a deep gash in it right on the top first bend. As soon as I see it, my first thought is, "Thank goodness it is attached!" Second, "How is it still attached?" Her fingers are still so small?" Her hands always look like a 4 or 5 year old's hands to me but she uses scissors like a designer:)

Anyway, I put pressure on it and I just kept thinking that I wanted to call Myron and also I wanted to leave to the ER but it was kind of hard to do that.

I did though and Myron was able to meet us at the ER! I called her doctor also but we went to another ER that was closer. Her finger did some bleeding like it was (gushing) and they were able to steristrip it. Although that basically had to keep being redone for 2 days ever 4 to 5 hours.

Now, the finger is looking nearly normal again. That was November 21st.

Okay, about the blood. So, Tatiana was helping me in the room get Katia cleaned up and ready to head out to the ER. So, we walk out of my room and when we come out into the dining room and kitchen to leave, it looked like a crime scene. There was so much blood dripped from her walk to my room (mind you Katia doesn't run, she walks). We had to wipe that up and it smelled really strong and was really red and thick.

When we came back from the ER, we went in Katia's room (this was from a finger injury... Katia's room was another mess. Her bed and carpet. Wow! She really did lose a lot of blood.

So, after I have said all of this. I have to tell you, Katia didn't cry. She said it didn't hurt at all. She did get upset though because I said she couldn't use her scissors for a while. I couldn't believe how calmly she walked in my room with her hand full and cloth full of blood.

So, that isn't all that has happened. I have more but nothing more like that:)

As you know Katia had a visit with an Endocronologist some time back and then a followup visit that had gotten mixed up and cancelled. Well, we had our followup and it went well the other day (the 23rd). He has a few more things he wants to do but he has given the okay to move forward with growth hormones. He does want Katia to have a brain scan first and some more blood work but he put in for the growth hormone approval through insurance so hopefully the scans go well and the blood work goes well and insurance approves the growth hormones. As of yet, Katia doesn't know these are given in the way of shots... I am waiting to see that everything goes through and is approved. She gets really anxious so might as well be sure first and get to the time we are ready to start and it is Day #1. Tell you the truth, I am a bit nervous but like her, we do what we have to do and when things fall into order and work out accordingly, after a lot of prayer, we know we will be ready:)

So, Katia will be starting out just under 3'3". The thing about this, it isn't just for growth in her case but also for bone strength. She has severe osteoporosis. We have discussed this with the doctor and Katia. She is pretty content with her height. We will see how things go. She has had a lot of radiation and has been on a lot of steroids throughout treatment and is still currently working on being weaned.

Right now, she is playing with some little toys and listening to Christmas music:)

I hope each of you had a very nice Thanksgiving. Thank you for the Thanksgiving messages. It is a very nice chilly day here today (next week it is going to be warm it seems-very Florida like).

If you are on FB and haven't looked me up, drop by:)
tmsol87@aol.com

Love, Tracy

November 10, 2009

So, it has taken me a bit of time (okay, longer than a bit) to get Katia's Halloween picture on here but I am finally posting it. She came up with this idea around August and seriously kept to it. The witch outfit she has had for at least 2 years and the cat ears and tail she has worn for a few weeks (non-stop) prior to Halloween and continues pretty much to do so.

So, here is the "Cat Witch", Ms. Katia:)

Katia Halloween 2009

Love, Tracy

October 26, 2009

So, the countdown to Halloween is getting closer and closer and Katia is buzzing around here (still wearing the tail and ears. She puts on her whole outfit some days and looks quite cute. I should go ahead and get her picture ahead of time so I can post it.

Yesterday she was coming down with the sniffles and sneezing which of course had us a bit nervous seeing everything going on with Swine Flu. But today she is sounding better:) She just has a bit of a headache (I shouldn't say "just" but her sniffles seemed to have passed).

She should be getting vaccinated her soon.

Being precautious for this new flu is pretty much the same as we are precautious for everything all the time other than the fact everyone else is being precautious as well. The scary thing is with this is more the unknown as well as the fact so many other people are also being affected at the same time and ending up in the hospital and at the doctors. Hopefully, more and more and sooner than later, people will begin to be okay. The unknown can be very scary.

Well, I wanted to jump on here quickly. Katia has received some very nice cards recently and some packages and I want to say thankyou:)

Please keep our friend Amy in your prayers also. She has been going through a very rough time.

Lots of love, Tracy

October 14, 2009

Hello there:)

Wow, I am getting quite bad about these updates. I am so used to being over on Facebook (which I have been bad about getting on there too!)

So, this is October so Katia is quite happy about. She likes Halloween! This year she is going to be a "Cat Witch". I was a little confused when she said that but basically she is in her favorite Witch costume which she has had a few years and she is going to wear some cat ears and carry a cute grey stuffed cat. She also is wearing a cat tail. She has been wearing the cat ears and tail every day so far though (it is cute!)

She has not had any C-Diff symptoms for a few weeks although she hasn't been cleared of the C-Diff via a lab report yet. We will see about that next clinic visit.

She has been feeling pretty well. Her right hand has been giving her a few issues with getting stuck again, the fingers. The left one does a little but mainly the right one. She deals with it herself so I don't always know about it.

Her throat has been doing well since the June 9th procedure. She is happy about that and has been eating well. She gets nauseated but Zofran is a big help for that which she has come to rely on her Zofran at least once a day.

You know, we were talking to someone the other day and even though it seems like Katia has things that continue to go on, she is such a miracle and we are so grateful for each day. As she gets older, she has her days that she doesn't feel good and that bothers her but for the most part, Katia pretty much just goes with how she is feeling at the moment. She likes to play and she LOVES to talk! She is a real chatterbox with me and around the house and even at clinic. I often wonder what she would have been like had she not had been diagnosed and just had been a typical little girl at school?? I am pretty sure I would have been getting some notes from school about "talking in class..."

But, Katia is one of the sweetest and most kind hearted, most compassionate children I know. She doesn't like to see anyone upset, hurting or in anyway not happy.

At some point I will have to replace the picture at the top of the page but really Katia looks pretty much the same. She did get some different glasses though. We say they look like pink "Beatles" glasses.

Definitely I will take some in her costume though.

I will try to update more. Not sure who really comes by the site still. Janice and Sheila:)

We are waiting for some cooler weather in Florida.

Have a great day!

Love, Tracy (and Ms. Katia)

September 17, 2009

Just a small (yes, this will be short) update to let you know Katia's throat is improving. She is being able to eat and talk well. It did take a bit longer this time for her to recover from the procedure but she is happy with her throat now.

Thank you so much for your prayers!

Love, Tracy

September 9, 2009

Katia went in today for another procedure to have another Esophageal Dilation. She had this done back in February but the area has since closed back up and this needed to be done again. It seems she will need to have this done more often.

This time, she is in a lot more pain afterwards but hopefully tomorrow will be feeling better. She had a time afterward with trying to keep her oxygen sats up as well and then on the way home, she was feeling really nauseated so she has just not had a very good day at all. Last time went much better than this time.

The good thing though is she knows the reward in the end is she should be able to eat again without choking or having the feeling she is going to choke each time. She is happy about that. Right now, she is just looking forward to feeling better, hopefully tomorrow. When she feels this bad, it just really tugs at your heart and then she is still concerned about me. I went in the kitchen to get her something and hit my elbow on the counter (not sure where the funny bone idea came about because there is nothing funny about hitting that) and she sat up from the sofa and in a crackly voice says, "Are you hurt?"

So, that is what is going on here today. Small catch up on other things.

The C-Diff news is she just finished a 21 day dosing of medicine and we will do a recheck of her stools, not sure what the plan is though because even when it is negative it still seems to come right back so... we will see.

What else? Cortisol level, haven't rechecked that but the steroid dose has remained increased. Right after that Cortisol level dropped below 1, the C-Diff came up and the choking episode that was really bad (not sure I have mentioned that but it was really bad and she couldn't breathe or get the food back up like she usually can after a while which led us to today's appointment) came up so we have kind of gotten off track.

Oh, and we have her followup appointment coming up with the Endocronologist on the 28th I think to find out about the possibility of growth hormones.

So, kind of a lot going on right now. Although it seems like a lot going on, in a lot of ways, it seems so many things have been in a pause. It is weird and kind of hard to explain which is why I wait in between updates. Many things seem to repeat with Katia. She is happy to have Ms. Michelle back (her teacher in her Homebound Program) but not so crazy at the idea of having homework again...

She is in 3rd grade with her work ranging between some 1st grade all the way through some 3rd grade things. She struggles in reading and math. She is enjoying reading more than she used to more though.

Long update:)

Please keep Katia in prayer as well as the many others that are in need of prayers.

Love, Tracy

August 16, 2009

So, a small update just to let you know what has gone on since the last update.

Katia's cortisol level hasn't been rechecked yet but her symptoms seem to be improving so hopefully the raising of the steroids is doing the trick. She is still having her bouts with some weakness closer to the evenings and at times during the day but then we also have just been going through another round of C-Diff (yes, another!)

This past Friday, we found out she was again C-Diff positive. She had been feeling really bad, really really bad. She had been unable to eat and hold anything in and just had really bad cramping and a very very sore bottom.

Her muscles were hurting, her bones were hurting, she was just pretty much miserable and with the cortisol level problem just having happened, we had been focused on that because that can also cause most of her symptoms. But we took in a stool sample and a few days later, C-Diff positive.

So, seeing she had just finished a round of Vancomycin which usually has always been the medication which is a sure working medication to wipe out C-Diff for Katia, this time we are going with a longer dose of Flagyl for Katia. Katia's teeth had started turning brown from the Vancomycin during the last 1/2 of the treatment also. So, hopefully this will wipe out the C-Diff.

We are a couple of days in and the cramping is easing up and food is staying in.

Katia has gone down to 35 pounds so she needs to keep her food in.

Her skin has been quite itchy as well along with some areas of GVH appearing a bit more irritated looking so the fact this was C-Diff was more of a good thing than it not being GVH. Then it could have been GVH related...

Katia has been a bit on the bummed side (well a lot lately) so hopefully things will ease up and she can get to feeling somewhat better. It is really hard seeing Katia feeling down. I know every parent likes to see their kids happy and healthy. It is just built into us. I was looking through Katia's Journal History yesterday trying to find something and she really has come such a long way. What a miracle:)

She has some things she wants to share so she is going to try to work on that. Hopefully soon so we can share them.

Lots of love, Tracy

August 5, 2009

So, a small update on some results. It does seem that Katia's Cortisol level is quite low. It should at least be around 5 or higher and hers is all the way down to 1 which explains quite a bit of her problems. Her steroids had been weaned all the way down to 1.4ml which seems to have her in a bit of withdrawl and adrenal issues so her steroids are going to go back up to 2.5ml to see if this helps. Out of many of the things these symptoms could have been pointing to, the cortisol levels showing up low is a sign that maybe we can have Katia feeling some improvements hopefully soon.

As far as her fingers?? Not too sure about that yet.

Katia had a very very bad morning. She had a total meltdown and then a meltdown because of the meltdown. Those have been happening a LOT lately. Hopefully this will help with that because she is very unhappy with herself more and more.

If you didn't read yesterday's update, make sure you catch up with that as well.

Thanks for checking in. I will update more as well.

Love, Tracy

August 4, 2009

So, it has been a bit since an update again. Well, things have been a bit bumpy for Katia. She has had another bout with C-Diff which hopefully is clearing up. We went to clinic today and took a stool sample to see if it is "all clear". She really had a lot of pain and cramping going into finding out about the C-Diff and nausea. The pain during the bowel movements has gotten better but she is still having belly pains mainly in one area and is still having a lot of nausea. Her appetite is almost always non existent. She is however maintaining her weight. She drinks well, has nutrition drinks and nibbles enough at each meal but due to nausea and belly pain, just doesn't feel good.

She seems to have some type of a urine infection which hopefully can get cleared up easy enough. We just handed in a urine sample while at clinic. This just started bothering her in the last day or so.

Not trying to be a complete downer but this isn't really going to be a great update...just a pre warning.

Katia's eyes are feeling better in one sense. They aren't feeling so irritated and dry. The drops she is on right now, Restasis (which she has been on before) seem to be doing better this time helping in that area. As far as anything helping with the sunlight or indoor lighting of anykind, she is very sensitive and continuously keeps on sunglasses. That seems to just progressively gets worse. Each eye specialist agrees, the GVH issue needs to clear up before the eye issues will get improve or eye surgery can accomplish anything on her corneas long term.

Over the past 2 months maybe, Katia has been feeling more and more sore, more and more all over weak it seems and just more and more tired. Then just over this last week, her fingers have started getting stuck while they are bent and sometimes while they are straight causing her a good amount of pain until she can move them back into position. At night when she is getting ready for bed, she is getting to the point she can barely move, she is weak and just flops. This is all quite concerning to us and just irritating to her. She is 9. She has very much slowed down, slower than usual. She has never been typical to her age group, no where close. But, she was on a pace of building more and more energy for a while.

There are a few thoughts. Her regular labs look okay. She just had them drawn today. We go back in first thing in the morning to draw some more labs to look at some more things.

Please keep Katia in prayers and also that we can figure this out and get her back on track. She really is feeling quite puny most of the time. It is hard to watch her feeling so bad. We want to see her feeling well and thriving as all parents do.

Our prayers are with everyone and please pray for those that are in the are currently battling in the hospital or at home that are very much in need of prayers.

Love, Tracy

June 24, 2009

Okay, well so far summer has started off for Katia without a "Bang"! She is bored to say the least. She is having to do schoolwork throughout the summer but not a lot. Mainly working on reading and writing to move ahead. She is progressing very slowly in those areas, as well as math but right now, we are concentrating in reading and writing, forming sentence structure and spelling. She is basically still at a first grade level. So, she needs to continuously work on this throughout the summer. Again though, she is doing just a little each day, but the SIGH that goes along with it is teenage level! I have to jump in for her though. Once she gets started, she does put her full effort into her work. Her handwriting is very nice. Things just really do not seem to be retained well. Letter recognition, writing letters correctly, spelling and phonics, etc. Her reading is ahead of her spelling. Katia is frustrated with this.

We think a good part of this has to do with her eyes being so effected by the Graft vs. Host Disease but also some of this has to do with her treatments and the fact her attention span is small and she still has many days of not feeling well so she isn't on a schedule of every day having a portion spent on education like most children would typically be. So, this means her progression is much slower and therefore, she does school work at odd times and during the summer. Her school work consist of some 1st and 2nd grade work. Her school level isn't looked at like most children's.

So, how is Katia feeling these days? Well, as mentioned her eyes are causing her a great deal of pain and discomfort right now. Two different types of issues bother Katia's eyes. One is discomfort in the way of irritation like the eyelids and the actual eyeball are messed up from Graft vs. Host. Eye drops used to offer some relief here and still do offer some. She has been on so many different types, both prescription like different steroid drops, restasis drops, over-the-counter drops, many times a day, lesser times a day, etc. She has done cloth compresses and creams and ointments. She has had cornea surgery which worked giving some relief as it scraped off the damage but the damage came right back within a couple of weeks since the Graft vs. Host Disease is still active. So, that part of the eye problem is still ongoing and something Katia is used to dealing with, sad I know.

The other eye problem is light. Light causes a great deal of problems and pain for Katia. She wears sunglasses all the time. Unless she is sleeping, she is wearing sunglasses. She will often fall asleep with them on. She will have them on to take a bath until it is time for me to wash her hair. This issue has gotten worse and worse. She is very light sensitive. We blocked off one of the windows in our house last summer, the one in our living room so it would be more comfortable. This keeps out some of the natural light and that does offer some help to Katia. She is home most all the time due to her immune system. We have always tried to work around her while also trying to keep things as "normal" as possible.

Katia has seen eye specialist, cornea specialist, gone to specialized eye centers and really what everything boils down to is the Graft vs. Host Disease. It keeps coming back to that. Her body needs to accept the marrow. When this will fully happen is unknown. Until that happens, her medicines continue, her immune system will be compromised, she will have to be restricted in what she is able to do and places she can go, etc.

Her other issue that has been caused by the Graft vs. Host it seems is her mouth. Her mouth has had numerous lesions throughout the past few years on her cheeks and tongue and now has an ongoing burning issue and pain which is effecting her eating ability causing her to lose weight. In the past 2 months she has lost about 5 pounds. Katia typically loves to eat and right before this really got to be a problem, her esophagus was an issue. That seemed to be resolved with surgery and this has become a problem, her mouth.

Katia was 2 when she was diagnosed and really didn't know what was going on. She knew her parents loved her and just wanted her family with her and as long as we were there and we seemed okay, the world was good and everything would be okay.

She was 3 1/2 when she relapsed, she was scared and she knew she would lose her hair (she was okay with that), she knew she would get more medicines that would make her sick (she was not okay with all of that!), she knew she was going back into the hospital (didn't like that) and she knew her doctors would do everything to make her better (she loved her doctors and nurses!).

During her time of treatments when she was 3 1/2 and while we were looking for a bone marrow match, Katia turned 4. Not only did she turn 4, she was learning a LOT about what was going on and what the world of cancer meant and just so much more than a 4 year old should have to know. Her world still revolved around her family but she was growing much more compassionate for others and their pain.

She has remained that way and she struggles right now with the fact she too wants to feel better. She just wants to simply feel good especially her eyes, now her mouth. She doesn't so much complain as you can see it simply wears on her. She wants to be a kid, feel good, go places, do things.

Katia has been able to do very fun things along the way like meet the Disney Princesses at Disney, a day at Seaworld, meet Ronald McDonald!, meet some other great fighters of cancer, Disney on Ice, have her Playhouse Wish fulfilled and along the way we have all met some of the most incredible people doing some amazing research that have dedicated their lives to finding better treatments and cures to cancer and other blood related diseases.

Katia does understand, as do we, that it could be worse, much worse. She has remained in remission since transplant. She is 5 years out of transplant. She has remained on medications for a long time that could be extremely hard on her body's organs and yet she is still able to take them. Katia has osteoporosis and yet has not had any fractures. She has a great team of doctors and a great hospital! On days when she seems really down or just doesn't feel good, it isn't as easy to distract her or give her the speech "it could be worse". I don't really think that speech is so much mine to give really. But, I can see that she must kind of give it to herself or something close to it. All in all, she is still that innocent child that has the mind to focus on the more positive things at hand and not the focusing on every negative thing going wrong at one time. It isn't so much a lesson learned but a lesson often forgot with age as we leave childhood behind it seems. They depend on the fact they will feel better and just leave it at that. As a parent, I find it hard to just leave it at that but I do put my faith in God and I leave it to Him.

The other night I was making dinner (something I should do more often I suppose) and Katia was sitting at the counter and we were actually talking about attitudes because she had just snapped at me after being called down about snapping at the dog for not wanting to be attached at the hip with her. I told her being rude was no way to talk to anyone, not a person, a family member, the dog, anyone. Don't make it a habit. She hadn't been feeling good and had been having a generally bad day anyway so I had said all I was going to say on the matter and she just put her head down on the counter. I thought either the light from the kitchen was bothering her eyes, she was pouting, or crying. So I asked, "What are you doing?" No answer.... So I asked her again, "What are you doing?" She looks up with the calmest look and answers, "Praying."

Katia has always found peace in praying and turning to God and she has always felt comfort in God answering her prayers. She doesn't go to Him for only big things but for anything, no matter how "small" it may seem to someone else.

She later said she was praying about "everything" so that pretty well summed it up for me.

Faith like a child:)

Love, Tracy

June 20, 2009

This was something I recently typed as a summary of Katia's Journey. I wanted to share it on here.

LADYBUG KATIA

At the age of 2, our daughter Katia had started having swelling around and under her right eye. This was getting larger and significantly changing in appearance over a couple of months.

Following surgery to embolize the blood vessles (cut off the circulation to the tumor), Katia suddenly became very ill with fevers and just seemed out of energy. In the ER, they tested her blood and spinal fluid and admitted her telling us they were concerned for meningitis.

Two days later, we were told our little two year old had leukemia AML. She went through 5 months of intensive chemotherapy which both got her very ill but also brought her into remission which was our prayer.

For months we went for blood work which showed she remained in remission. She would get admitted for fevers or infections but she did stay cancer free.

However in August 2003, she became ill and the cancer was back, very suddenly and very aggressively. We were told she would need to again reach remission and only a bone marrow transplant would be her chance of a cure.

Our family was tested and nobody matched her so we looked to the registry. Katia is multi-cultural. We had been getting very educated since she had been diagnosed and knew the chances of finding a match were very slim so we worked with our local blood centers and the National Marrow Donor Program to put together Blood/Marrow Drives.

We went to the Media to share Katia's story and let people know there were many people in need of a match every day. A lot of people came forward.

For months, no matches were found and Katia remained in the hospital on treatment.

Near the end of December 2003, a match was found in a 5/6 cord blood. Katia was scheduled for transplant to take place in January 2004. She would be just turning 4 years old then.

However, a fungus turned up in her lungs which needed to clear up before transplant could take place. A delay. Katia under went a lobectomy to remove the area where the fungus was located and the transplant was rescheduled for February 5, 2004.

The time of transplant was so long awaited and anticipated and the process is yet not much more than what seems like a blood transfusion it seems but the overall feeling is much like watching your baby be born again. It is seeing them have a new chance at life and the wonderful gift of someone donating that cord or their marrow.

Katia had issues pretty quickly with rejection of her transplant so she was put on antirejection medications.

After 248 days in the hospital, she was allowed to leave the hospital and go to the Ronald McDonald House behind the hospital!! It was our practice area before being released to go home home.

Throughout all of this I journaled through an online journal and everyone who read that was just as happy as we were that we were finally released:) Katia would go back and forth to clinic everyday to get her blood counts checked and it was a good thing because some days her antirejection medicine counts were totally off and could have become dangerously unlevel had not been checked. She was still in need of blood and platelet infusions at this time as well daily at times or every other day to three days so checking often was much needed. However, Katia was very happy to be outdoors and being free. After 336 days of being away from home. We returned home!! That was when Katia was 4 years old.

Katia is now 9 years old, 5 years post transplant. She has rejection issues still, mainly on her skin and with her eyes. Her corneas have quite a bit of "wear" on them which cause a lot of sensitivity to light. Katia's growth has been very stunted since her relapse at age 3. She is 3'3". She received quite a lot of radiation to her spine and brain as well as the orbit of her eye. She has been on steroids since early 2004 for rejection issues. She has osteoporosis due to treatments and steroids. She is slowly being weaned from the steroids and at this time is on the lowest dose ever and her rejection is showing the best progress ever. She has a Home Bound school teacher as she has a very surpressed immune system still.

Katia is a very caring and compassionate 9 year old. She loves her family, adores her doctors, her teacher and like all kids her age, she loves to play. She has a little 2 year old puppy, Fozzy that makes her very happy. Katia has always been known as, "Ladybug Katia" and she says when she grows up she was to be a Veterinarian.

Katia has been a symbol of hope to many, but to me (her Mom), she is my HERO!

Tracy Solomon (Mom!)

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

May 7, 2009 10:30 AM

The endocronology appointment went well. We went over a lot of things with the doctor and he will be getting a lot of information regarding Katia's transplant, the radiation used, her medications used prior and post transplant and see what can possibly be done. He went over our family histories and of course looked at our heights:)

He explained the risks of growth hormones and will have to look at all the gathered information to know the hopes of growth possibilites.

All in all we were very impressed. Our next appointment with him is in 3 months or so.

Between now and then we have labs to do and some other tests. And depending on those results, he may order more.

So, we don't really know what can be done but we feel confident he is the right person looking into what can be done.

On to the "How is Katia?"

Katia is having quite a few tummy issues right now with cramps and nausea so we handed some "stool" yesterday to see if anything grows. Her little munchy appetite hasn't been too great lately due to nausea. So, hopefully they can find some answers in her poopies.

Until later....

Lots of love, Tracy

May 2, 2009

Counts from 4/29

WBC 4.19
HGB 14.0
PLT 386
FK506 5.3
Creatinine 0.31

Infusion IVIG and Pentamindine

DEXA Scan Results from April 2009

Whole Body -3.5
Lumber Spine -2.7
Left Hip -2.9

So, there are the numbers.... basically the labs look pretty good. The Dexa Scan results do not. Anything more <-2.5 is osteoporosis and we had hoped for some improvements as we have gone down some on the steroids and Katia is bit more active. She isn't able to run around but she is more up and down around the house. Her "Whole body" number went all the way from -3.1 to -3.5 so that wasn't good.

She has had a cold that is really bugging her for the last few weeks and has been having issues with nausea and a sore stomach so she isn't wanting to eat... She kind of goes through these times it seems.

On a new note, she is going to see a Pediatric Endocronolgist this Monday so we will see what they say as far as any growth hormones and a few other questions we have. Katia has been the same size for years which in many ways hasn't been an issue due to so many other concerns for us nor Katia. It is actually kind of a concern for Katia if she grows. I think she is used to being the size she is.

Her eyes have really been giving her grief these days as the Florida sun does its thing... you know, coming up in the morning and shining. So, she has been pretty attached to her sunglasses, THE sunglasses. I had to work on those the other day. They are really quite a special pair because they seem to fit her perfectly and are really dark which seem to be hard to find. She gets a lot of compliments on them and they were just a pair I picked up quite a long time ago, didn't pay much for them as I have a bad habit for leaving things laying some place and walking
away.

So, that is kind of what is going on here:)

I will update (hopefully) after the endocrology appointment. If I forget, someone on Facebook remind me please...

or someone send me an email, "Tracy, you are forgetting something!"

I tell you, the closer I get to 40 (just a few months now), the more I need reminders and then reminders to check

the reminders...

Lots of love, Tracy

April 3, 2009

Katia as of recently has been reviewing for her classes and doing testing with her teacher. She gets nervous mainly because she expects a lot out of herself and she stresses over anything coming up whether it has to do with school, clinic or having something done at the hospital. She has always been that way. So, on Wednesday she finished up testing with some Math tests and she was done! Spring Break;)

As you know, not too far back, Katia was having many months of issues with choking on pills at first, then solid food and finally almost anything. It took a while to figure out what to do after not really finding out the cause of all of this. She had her throat dialated during an endoscopy. The biopsies and procedure really did not show a cause only that the esophagus was very much tightened and her esaphagus was dilated at that time. After some time to heal, her throat has been a LOT better. She is so happy about this and so are we and her doctors. The biopsies did not show anything.

Her issue right now has been her "bottom end" and "poops" again. This has been such an issue for Katia since her diagnosis. She gets really upset when it comes back because it really causes her a lot of pain when she tries to use the bathroom and cramping when she is not trying to go. The reasoning is that she seems to not only have hemrohoids (I usually mispell that word) but she is also positive for C-Diff again. It has been while since she has had this actually. So, she is on a 10 day course of antibiotics which she is happily taking and hoping she will feel better soon. She has about 3 to 4 BM's a day and each one really hurts so she hopes this will clear up soon.

I always wonder what she will think when she reads this journal one day.... (OMG what was my Mom thinking???? Poop talk!)

So, basically her eyes actually still remain the same and we have settled on the fact they will remain so until her body fully accepts the transplant. Katia understands what that means. She gets eye drops to help keep them moist which she helps and I am kind of a sucker for her whining about them. I realize her eye problems before diagnosis. Her eye issues started January 2002 and her diagnosis April 15, 2002 (we are coming up to the 7 year mark not too many days from now - tax day). She hated eye drops long before cancer entered our lives.

Her mouth is showing a bit of signs of either flaring up or something again so we are working on getting the mouthwash that worked before. There is an insurance issue right now though. We will try to get it worked out though but it is a special mix so it becomes an issue. It shouldn't have to be.

On a very good note, Katia's reading has continued to show slow but steady signs of improvement and not only are we proud but so is she. There is a bit of twinkle in her eye. I am waiting for that voluntarily picking up of a book to sit down and read but I know her eyes are an issue also.

If I haven't said so lately, she is my hero!!

Love, Tracy

PS The picture at the top just captures Katia and her full personality on a daily basis! That is her day to day:)

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

April 2, 2009 12:36 AM (yep it is late...)

I will work on getting an update on here and the last counts. There is actually a couple of things to update about. I keep in touch with quite a few of Caringbridge people via Facebook but I need to get on here and actually do a real update. So, that is my task for tomorrow or at least by Friday PLUS I have a cute new picture for the top.

There are some pics I can add from the recent modeling show with the Pediactric Cancer Foundation's "Fashion Funds the Cure" as well. I didn't do too well taking pics this year but I have a few. Katia still has very sensitive eyes so expect sunglasses still...

My health has still been yuck so I am not as on the ball as I used to be but I can catch up here and I should update my blog as well at some point...I already know the title:)

So, check back:)

Love, Tracy

March 16, 2009 6:15PM

The Fashion Funds the Cure Modeling Show went well. Katia's teeth (or the lack thereof) healed up pretty quickly. They are still sore on and off but she deals with it well. We haven't scheduled when the next two up top will come out.

She has testing coming up this week in school so she has been doing quite a bit of review work and saying her brain is "juiced"!

Hopefully Spring comes in for everyone because we keep up with everyone's weather and I know I am beginning to feel guilty for Florida's weather...

Sending Sunshine where it is needed. Well I know some places have sunshine but it is still cold so we will sending some warm sunny weather:)

Love, Tracy

March 10, 2009 9:00 AM

Time for an update:)

Katia's throat has improved and although some things are still out such as some pills, Katia is able to take her codeine pills (which are small) and she is able to EAT!!! She still chews her food up quite a bit and for a while BUT there has been absolutely no choking episodes!!! That is wonderful and we are all so happy and thrilled. Katia is just happy to be able to eat regular foods again. So, she has had her McDonalds, KFC and Subway again. She of course is still a big fan of mashed potatoes though as well:)

So we will leave well enough alone and stick to her liquid medicines and the fact that Katia can enjoy her foods.

Hopefully what was done will keep her esophagus open. Still no real idea on what caused this.

The other thing that has gone on is Katia had 2 teeth pulled yesterday from the bottom, These just would never loosen up. These are the 3rd and 4th baby teeth she has now lost. When they were pulled out, they still had the long roots on them so we were able to see why they weren't going anywhere. We also found out she will be right back to have 2 more pulled out on the top right next to her two top teeth. She of course handled this like a champ and had a Frosty on the way home. She was planning around the Tooth Fairy's visit and figuring out what she could eat when she was able to eat. She did end up with some stitches and some packing due to the roots and some bleeding but this morning she is just fine.

Tonight is the Fashion Funds the Cure Modeling Show with the Pediatric Cancer Foundation at Saks of Fifth Avenue and Katia is really looking forward to going. She will be in the Alumni walk which is with the group of girls that closes the show. She always likes getting her makeup and nails done:) It is a really great evening and a lot of clapping when each girl has their moment on the runway. SAKS completely shuts down for this event and the store is just packed for this fundraiser. It is sad to see new girls because it means new diagnosed girls, it is comforting to see returning girls because we are all in this fight together and we know how important each day, month and year is and the hope for new treatments and a cure is. It is heartbreaking to know some of the girls who have once participated are no longer with us and our hearts are with these girls and thier families and part of the show is in memory/honor of them. Not just the previous girls but many patients who are no longer with us. Cancer is such a horrible disease and the fight to beat it is a daily fight for so many. When someone passes, their family is still in that fight, their loved one is never forgotten. Their heart will go on, their cancer died.

Love, Tracy

February 27, 2009 2:33 PM

Hi there:)

Okay, so how is Ms. Katia today?????

Well, her throat is feeling better:)

Yesterday it was feeling sore and bumpy and she wasn't very happy. Today she had some Mac and Cheese (yeh, she has been missing that stuff a LOT!)

And she looked quite happy eating it.

When she was done she told me that she had 3 noodles in her mouth at once. She still chews and chews and chews, but that is a good habit anyway. But, she was so happy she could eat it and not worry about choking. So, not only was she not choking but she wasn't even worried about choking. She trust her throat.

She says she isn't ready for anything crunch yet but she has a lot of stuff she has been missing. She had some chocolate cake last night. She doesn't have a huge appetite but she likes food so she likes to be able to eat what she wants to eat. She has missed McDonalds and used to love the drive through on the way back from clinic as well as KFC. That used to be a big thing after a long day. She has been pretty stressed for a long time.

What she had done will hopefully do the trick (I think it will). It isn't a permanent fix but there isn't anything that says it won't last. We still don't know what caused the issue so there is nothing saying it will or it won't happen again. We just hope it won't. Right now, the little Ladybug is pretty happy and it's today that counts:)

Love, Tracy

February 26, 2009

Katia's procedure went well. They were able to do but the upper endoscopy did show quite a bit of tightening of her esophagus in one area so they were able to dialate that area. We aren't really sure what that will accomplish yet due to soreness and swelling which should subside by Saturday or so. Katia is still quite sore this morning and tired. She didn't sleep the night before as she was anxious knowing they were going to do "something" to her throat. She normally isn't anxious before procedures because she knows she will be asleep even though she may wake up sore. Her throat is her area that has been giving her issues. She is VERY hopefully this will allow to eat normal again so she was looking forward to the procedure at the same time.

Thank you for your prayers so much!

She did get down some of a toddler meal last night and some cold drinks. She was going to try an Italian Ice.

If need be here throat can be dialated some more BUT we are hopeful this will be enough:)

Tracy

PS I will add her counts later...

February 22, 2009

Katia's appt. has been changed to Wednesday sometime. Well, should be for Wednesday. I will update when I know for sure. Tracy

February 20, 2009

Wow, am I getting late at updating.

First the counts from the 9th.

2/9/09

WBC 2.68
HGB 14.1
PLT 375
Creatinine 0.33
IGG 590

Really, those are good. WBC is low but the rest look good. As far as the results from the swallow tests that were done that day, it did show narrowing or obstruction of some type in the esophagus. She has an appointment for Monday with a GI on Monday for an upper endoscopy which will look in there and see what they find. If possible, they can maybe do something corrective while they are looking as far as dilating that area or if there is something there that needs to be biopsied or sampled, then they will do that. If not anything else, then they will just get another view. Hopefully, the problem is fixable from there because it is getting more and more bothersome to Katia. She just doesn't like to complain really. She has done her best to work around the situation but really, she loves food. Surprisingly she hasn't lost weight. That is a good thing.

So, Monday she will have that done. I don't know the time yet. We just found out the day today. She'll also have her regular clinic visit and Pentamindine infusion on that day as well. You know, that same thing I am just know posting the counts from the last one?? Aside from that, Katia has been having some up days and down days. She has had some long nights of not sleeping and just staying up somewhat due to her eyes but also she is just a bit stir crazy sometimes (well more than sometimes). She is nine now. That is a big age. She has a few favorite things she likes to do and most really have to do with what her counts are. She is a girl and she is 9 so she likes to shop... Her counts don't agree with that. We have figured out a few safe ways to that at certain times but also we have to work that in with our own abilities. She also likes to get Fozzy out. We all do!!! He is family:) He is not very well behaved though. We took him to the park and have been working with him a bit on heel, sit and stay. Well to be fair I don't work with him as often as I should. Anway back to his faults... So, we take him off the leash for a couple of seconds and what does he do???? He takes off like a jack rabbit after a bird!! This field is huge! Around the house, this dog is a pampered lap dog and quiet. He plays when he is played with, rarely barks and never ever acts like he knows he is a dog. Suddenly he is acting like a hunting hound and we all darted after him. Well, Katia was swinging on a swing totally oblivious to what was going on. So, the lesson learned is Fozzy is waiting for a moment to escape and we are totally out of shape. There is also a leash law for a reason. Lack of self-discipline in the K9 community! (Sorry Fozzy but you and your leash are buddies)

So, that is a catch up on events:)

We have the upcoming Fashion Funds the Cure Modeling Show at Saks of Fifth Avenue. I think it is March 10th. Katia will be with the Alumni Girls this year. She is really looking forward to it. She loves the makeup people and seeing the other girls and people. The past years have been really fun. No matter how she is feeling, she is eager to go. Last year she was going through quite a lot of pain before and during the Fashion Show and after but the event is such a nice thing for everyone involved and is really for such a great cause. This year, Katia's GVH has stayed much more stable and has improved on some areas of her body so that is a great plus. We have weaned some medicines and are going down on others. Being homebound, this event is a great thing to look forward to. Plus, it is at Saks so it is a beautiful set up! The walk down the runway is always fun and everyone makes the girls feel very special and gorgeous when they cheer and clap (of course the parents feel very good as well).

The event is also remembers those who are no longer with us and the search for a cure can never get here to quickly. Everyday people are diagnosed and everyday families are facing these tragedies. For us, we live each day with a miracle in Katia. It is both humbling and at the same time something that reminds us each day to join in helping any way we can. If you haven't dropped by the Katia Solomon Foundation Website lately, you can see what has been going on recently. A new program started up which is under Current events. Hopefully we can keep it going as it has been something that had a great response and has definitely filled needs for many people. It definitely can continue to do so.

Have a really good weekend. We are planning on a quiet weekend (those are the best kind) and hopefully Monday brings some good results. Oh, it has been great having some of you drop over on Facebook:)

Love, Tracy

February 4, 2009

Updating from one birthday to the next for Katia!

So, tomorrow will be another big day for Katia. Tomorrow will be 5 years since Katia's Cord Blood Transplant. Yep, it has been 5 years! Without that transplant we wouldn't have just celebrated her 9th birthday nor her 5th, 6th, 7th or 8th.

We know how blessed we were were with that match being found in the Cord Blood Bank. Katia knows what a miracle that was! It has been a blessing to be able to share with others her story and also the need to help that registry to grow.

Katia has battled Graft vs. Host disease which is rejection of her transplant. Her transplant wasn't a perfect match but it was as close as we could find at the time and we were at a point we had to go forward with the transplant right away. Katia is here and cancer free.

Katia progresses as each year goes by. She is slowly progressing in her reading which has always been a big goal. She is much more active which we notice especially around the holidays because we always think back to how she was able to participate the previous year. Anytime we think of what Katia's issues are, we also think of the MIRACLE she IS.

Our hope always is that her body will fully accept the transplant, her eyes will become pain free and her site will be clear and non-sensative to light, her skin will clear up and her bones will become strong. Right now, she is to go in and have some more tests done for her her choking issue on February 9th. so please keep her in your prayers. She really wants to find out what is wrong so she can go back to normal and eat what she wants. She has had a few tests run and it appears there is something blocking the esophagus.

So, tomorrow I am not sure what we will do but I am sure they will be cake involved:) Like Donkey said in Shrek, "Everybody loves CAKE!!!"

Love, Tracy

January 26, 2009

Happy 9th Birthday Katia

We love you!!!!

January 22, 2009

So, guess what is right around the corner!!!!

Katia turns NINE!! Can you believe it??
When I started this site, she was 2 years old! Yep, 2!

On the 26th, she will be 9!!

Right now, she is gleefully around here in that famous ladybug dress that everyone has seen so often since she was 3 years old and very very excited about her big birthday, the last of the single digits. She has gone through a LOT of changes. Her big "like" right now? HELLO KITTY and the singing group, "McFly". If you haven't heard of them, they are a band out of the UK. Tatiana got her into them and trust me, I think I know every word of every song.

So, in 4 days, she will be 9 years old.

Here is a fresh picture from today of her and her teacher she has had for the last few years, Ms. Michelle!!! Note the dress Katia picked for today, that Ladybug Dress. It definitely has held up over the years because she picks it a LOT! It is soft, has ladybugs, and she just loves it! It also has a matching hat:)

Katia and Ms. Michelle 1/22/09

Katia has been very excited with her cards coming in the mail (thank you!) and is very eager make her wish and blow out her candles come Monday:)

As we were watching American Idol last night and she was commenting on each contestant, I told her, "You definitely sound like a 9 year old." She ask, "Is that a good thing?" I told her, "Yeh, as long as you sound like a nice 9 year old." She was sitting there all propped up on the sofa with pillows and toys kind of glancing now and again but mainly just listening due to her eyes but she was definitely multi-tasking and she is right there as one of the judges. She has a great ear for music! She doesn't like it when someone is treated unfairly but when the cut has to be made, it might as well be done early on than dragging it out... She is funny:)

Well, since I updated last time, Katia had an issue with her foot that she just suddenly had the ball of her foot start bruising and swelling? We went in and had x-rays done and had it looked at, did labs and none of the tests or x-rays showed what happened. A few days later, the foot started going back to normal and now looks back to normal. So, all in all it worked out but none of us know what happened.

Okay, I guess I should post the counts from last clinic visit since we go again in two days. I may have already posted these but I didn't look so this may be a repeat.

1/08/09

WBC 3.49
HGB 15.1
PLT 401
Creatinine 0.20

Today was a cold cold day for Florida so this is a picture of Katia outside! 1/22/09

Love, Tracy

PS If you haven't visited www.ladybugkatia.com and www.katiasolomonfoundation.org lately, drop by for a visit. The Foundation has had quite a few things going on which can be found under Past KSF Events and Current Events. The www.ladybugkatia.com page has links to other sites to visit and a link to a Playpage for kids:)

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

December 31, 2008

WBC 3.66
HGB 14.5
PLT 379
Creatinine 0.28

So, the last entry for 2008... WOW!

This year has not seen Katia admitted at all and Katia has gained more and more energy. Katia is learning to read

more and more and is enjoying her classes with Ms. Michelle. In a few weeks, this little girl who has beat so many

odds will be turning 9 years old and she has really been through quite a lot in those 9 years. However she is

still, in many ways, a typical 9 year old. In quite a few other ways, Katia is not typical at all. She is Katia the

Ladybug:)

Throughout the last 7 years, so many of you have shared the ups and downs with Katia and the laughter and tears

(more laughs). You have seen tons of photos and heard so many stories of what was going on, decisions being made,

day to day things and even sentences she was learning to read or you have even seen pictures she was drawing. A

great many of you are in the "Ladybug Club"! Someday we will add more members.

In many ways it is as though Katia doesn't change and in other ways she changes rapidly. She is like 9 going on 30!

We are just so blessed and grateful for every miracle Katia has been blessed with, our family has been blessed

with. Through difficult times, it is hard to stay down long when we focus on blessings.

As 2009 is fast approaching (now just hours away), I am sure there will be days of blessings and days of trials.

Throughout past trials, I have learned to never lose hope and to always rely on God.

I have had quite a bit going on recently with my own health so I have slacked a lot with updates and posting some

of Katia's recent labs. I have tried to start blogging (link is at the bottom of this site). I was sending out the

updates also to a list of email addresses which I haven't done for months so if you were on that list, I am sorry.

I appreciate everyone that stops by and continues to keep the little Ladybug in their prayers. Katia should be

going in for a barium swallow test to find out why she is choking with her food which I will update on (sooner than later I hope).

Much love to you.

Tracy Solomon
www.tracysolomon.blogspot.com

December 24, 2008 8:45 PM

Merry Christmas Eve, almost Christmas:)

Katia is very very eager for an hour to go by so she can go to bed and Santa can come. This really has to be one of her favorite bedtimes of the year! The next would be her birthday when she wakes up a year older. She is actually only a day older but you know how kids are:)

Her clinic appointment was changed to Friday instead of today so today was kind of spent catching up and we actually watched a Christmas movie. For me to sit through an entire movie is not an easy thing. I have a really short attention span, really short. We watched Santa Clause 2. The last 2 days, we have watched Tinker Bell twice! Two full times. Katia has been in shock. It really is a cute movie though.

Katia has really changed so much since last Christmas, especially in her vocabulary and her desire for independence. She is learning to do things on her own. Seeing her growth is quite behind her abilities, we have made changes in the kitchen for her to be able to get to things on her own that she likes to get to. She likes to make her own snacks and such. She used to try to climb up on things but she definitely understands the danger behind doing that. Even with a stool, her arms are short so she can't reach things on the counters, so she has managed figuring out ways of reaching things and her favorite words are, "I can do it."

Along with the "I can do it" attitude comes frusteration when she can't. Sometimes she is unable to and other times she is not allowed to. She has a real "talent" for making her point (notice I left out the word "arguing"-oh, I guess I just stuck it in there!).

Throughout the day though, if you have kept up with Katia throughout her first treatments, relapse, transplant and since, you will know what I mean by this. I think about how thankful and I am to just have her home and into a "normal" routine of doing things in the kitchen, telling her to pick up her room, giving her baths, helping her with school work, and now waiting for Santa to come.

The little things really do matter:)

Please remember all of those that are fighting these diseases, are hospitalized during the holidays, the families of those that have passed on and always please pray for cures.

Love, Tracy (and Ladybug Katia!)

December 22, 2008

It has been a little while since I updated on Katia. She actually has a clinic appointment coming up for Pentamindine on Christmas Eve but I wanted to go ahead and update anyway. We hope everyone is having a good holiday season so far (and a safe one).

Watching the news, those of you who live up north are having some pretty rough weather in some areas and very cold. Makes me glad we in Florida. Don't get me wrong, snow is very pretty but I personally get cold in the freezer section of a grocery store. I can't imagine being in cold weather on a daily basis.

We do all watch the movies and think building a snowman looks fun or having a snowball fight looks exciting though. Katia is very eager for Christmas. She fell asleep under the Christmas tree a few days back while I was typing something. I guess my typing was boring or made a soothing sound:) It pretty well zonked her and Fozzy out on some pillows and a blanket Katia had under there.

Katia is doing pretty well. We have all had a cold in this house. Mine turned into a horrible cough and then ended up causing breathing issues which I am just getting over. I still have issues here and there. We were very grateful Katia seemed to be avoiding everything. About a week ago, she came down with "gunk" as she calls it in her throat and nose. But decongestants seem to be keeping her clear. So far so good. She will have the "gunk" sampled at clinic just to make sure it isn't an infection.

It's been nice connecting with a few of you over on Facebook or in the blogging world. Both are linked here on the site. Facebook is my email address. tmsol87@aol.com and the blog is at the bottom of the site.

Katia has received a lot of Christmas cards. I am amazed at some of the cards people can make by hand and some of the art kids can draw! Such sweet cards and thoughtfulness in sending them. Thank you so much:)

Our family wants to wish everyone a very blessed and Merry Christmas.

Love, The Solomon Family

December 4, 2008 8:45 AM

WBC 2.37 LOW
HGB 14.1
PLT 363
Creatinine 0.29
IGG

Yesterday I took Katia in for a video swallow study. She has been having more and more choking spells. First it started with certain pills and then one by one we switched her medicines to liquids. Then she started choking on foods, not all of the sudden but one food at a time. Same thing, just started not being able to tolerate this food and then that food. Katia loves to eat so she wasn't willing to start crossing foods off the list. She just would try to chew and chew but that wasn't sufficient so certain foods she just won't eat.

This choking was getting bad enough that it was making her feel as though she would lose her breath. So, the swallow study was lined up.

They said to bring in some things that would cause her to choke her to choke which of course had Katia upset so I let her pick. One thing was corn. That doesn't always make her choke because she has learn to chew it to a liquid practically. The other was a pill. She used to take 12-15 pills in the morning and same in the evening. Some were big capsules.

She was very nervous going in. When we got there, they had a big barium (sp) pill for her to take so they could watch it go down but Katia freaked over that. It was like 5 times that size of the pill we brought. It was the size of a Tums. So, they cut that in half for her to take. They mixed barium powder in the corn, some pudding, some strawberry milk and Teddy Graham cookies. The idea is for her to chew this stuff and eat it and we are able to watch all of this and see how it goes from her mouth, down her throat and down, either to her windpipe or through her esophagus. So, being the child Katia is, she wanted to get the hard-to-do stuff out of the way first. So, she wanted to do the big pill first. She did and we saw that it didn't go into her windpipe but it went into her esophagus and to a certain point and got stuck. She started choking and coughing and crying like she does at home and we were able to see the pill sitting there (which was quite a way down) and then somehow, Katia is able to get the pill up and back out. Remember this pill is about half the size of a Tums. So, we ask if she is willing to try something else with this pill. She hesitantly agrees. She wants to find out the problem so she can stop choking also. The next thing is to take the pill with pudding. We try this and the pudding goes through but the pill doesn't. But what we notice is even when the pudding is going through, there is an area in the esophagus where the pudding seems to thin way down.

The cookies were next, Katia chewed them down to nothing and swallowed them fine. The corn, we gave her three kernels and she chewed them again much longer than most people and then swallowed them one at a time.

Lastly, we gave her the strawberry drink and everytime she swallowed, we noticed the area where the pills got stuck which we ended up having things get stuck a total of 3 times, the drink would thin out nearly to nothing and then expand back out. So, this test shows us where the problem is but was not the correct test since the issue is actually not choking in the windpipe.

So, Katia will be referred for another test. It does show us there is an actual issue and it isn't that Katia is nervous or panicking or not chewing her food properly or anything of that sort. The liquid is having a hard time going through. I was amazed at Katia's willingness to repeat the choking to give us a better look at the problem. Even knowing what the outcome would be doing it over. She is willing to try. She is always willing to go through the testing she has had to endure through all of this since she was 2 years old and as she gets older, she understands more of the necessity of things. She can also be more detailed in her explinations of the problems and even give an idea of what she thinks needs to be done.

I am so proud of her:)

Love, Tracy

November 27, 2008 10:30 PM

Wishing everyone a very Happy Thanksgiving:)

Katia is busy watching the Macy's Thanksgiving Parade. She had a pretty late start this morning but she is ready for her Macaroni and Cheese and Mashed Patatoes! A little turkey on the side. Not much meat for her tummy right now.

Fozzy is ready for his turkey too!!

Katia is just eager to see Santa roll in on the parade and mark the beginning of the Christmas season so she can officially listen to nothing but Christmas music 24 hours a day:)

I am not sure if I updated after last clinic visit, I will have to check and I still have to figure out if we are going to do clinic Monday or Tuesday. My own doctor appointments are conflicting with Katia's so we are having to schedule things around eachother. Katia is needing to get a swallow study done as she is still choking on a lot of things even more than just a month ago so the problem is worsening and recently the problem of getting lightheaded during these episodes is causing more concerns so we are hoping to do this study at her next clinic appointment this coming week.

Other than that, she seems to be about the same, counts about the same, energy about the same, appetite, etc.

We have much to be thankful for today on Thanksgiving and always we keep many in prayer.

Thank you for checking in and keeping Katia in your prayers.

God bless, Tracy (and Katia who is now right here watching what I am doing!)

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

November 11, 2008 10:30 AM

Happy Veteran's Day to all Veterans.

Also remembering those families who have lost a loved one while serving in the military.

So many of our soldiers have not only gone to war but have been sent numerous times. Military families serve alongside their soldier by enduring this hardship not knowing whether their loved one (husband, wife, Mommy, Daddy, son, daughter,sister, brother, best friend) will return, running a home without the other parent, answering the many questions children ask that know more than they are sometimes given credit for knowing...

Having been a military wife, having my soldier go off to war, I was so grateful to have him return home. Coming home can be different for every soldier.

God bless our military and each soldier and their family.

Happy Veteran's Day.

((((((((((((((HUG)))))))))))))))

November 8, 2008 12:50 AM

Wow, I still haven't taken the pictures off the camera from Halloween... There has really been quite a bit going on but it will happen. I actually plan to just put the Halloween picture down here and put a really nice picture from the beach (yes the BEACH!) up at the top of the page since it will probably sit up there for a while. I know for a lot of you it is getting cold but here in Florida, we had a few nippy days but it is warm again now. We went out to the walk on the beach October 8th and Katia took her trick or treating pumpkin out there with her. They are cute pictures. Now that trick or treating is done, she is just talking about Christmas.

I have had quite a few doctor visits going on recently and more coming up. The details have been on the Message Board but I decided to try to get back to posting them on the blog I had started which I just couldn't seem to get the hang of figuring out how to work so I changed over to a google blog (much easier). So, here is the link, Tracy's Blog which is also can be found on the www.ladybugkatia.com and on the bottom of this site. I will really try to keep it updated. I like to keep Katia's site about Katia as much as possible.

Her guestbook is down right now due to spam but I am going to get it back on and hope it stays good. Please email me if you see any spam.

Lots of love and I will tie a string on my finger about getting the pics on. My goal is by Sunday:)

Katia scored good for Halloween, had fun as a mummy! Her eyes are really bugging her though so we are doing antibiotic drops right now. Her belly isn't her buddy right now either but she is moving along. Hopefully she will feel well for Thanksgiving. She doesn't eat much right now again. She is pretty puffy looking though.

Fozzy is hpyer these days as well and has Katia pretty bruised up so we have him on some "calm down" rules.

Thank you for stopping by and checking in:)

Love, Tracy

Halloween 2008 Pics

October 29, 2008 11:45 AM

WBC 3.03
HGB 15.4
PLT 364
Creatine 0.40

Height 97cm (3' 2")
Weight 18.6 kg (41)

It has been a bit since I have updated actually. I don't think I actually posted Katia's last counts on here from her previous appointment. Myron took her as I was on bedrest. I am feeling quite a bit better now. Katia received her Pentamindine infusion yesterday as well as her IVIG. Everytime Katia gets IVIG, we are so grateful for the many blood donors it has taken to achieve the IVIG she is recieving. Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors). IVIG's effects last between 2 weeks and 3 months. Katia usually receives this every 6 weeks or so depending on her IGG levels.

Katia has been very excited for Halloween to get here! Very very excited!!!! She decided a while back she was going to be a mummy:) We have been on the countdown to Halloween since around day 45... Two days to go. Usually she gets in about 20 minutes or so of trick or treating and that is about all she is up to and ready to check out her candy stash.

October has been a full month for us and there are still a few appointments to get through. Thank you so much for your continued prayers.

We had a very nice day this past Sunday. Although it is getting really cold up north (actually here in Florida yesterday and today also), we went out to Clearwater Beach and walked along the shore so Katia could collect some shells and chase a few Seagulls. It was really nice. I will post some pictures. I will probably get the Halloween pictures up first though and then the Beach ones. She is eager to get all wrapped in gauze. She picked something comfy, non-itchy and easy to get in and out of. Really thought this year's costume through:)

Hope everyone has a fun and safe Halloween weekend. I will hopefully add the picture on here for Halloween night as soon as she is all "wrapped up".

Love, Tracy

**********

October 21, 2008 6:45 PM

10/22 Update: Concerning the request below for the family needing help to get to New York, the surgery date has been postponed. Thank you for your prayers and inquiries. Please keep this family in your prayers as they continue to face many upcoming challenges. Love, Tracy

**This is concerning help for another family which needs immediate attention. If you can possibly help, please email me. tmsol87@aol.com

This is for a 2 1/2 year old needing to travel from Tampa to New York's Sloan Kettering to have surgical resection of his tumor. They have to be there by this Thursday and does not qualify for Angel Flights. Seeing as the time is now limited, we are trying to pull something together along with others that are trying to help. The baby would be traveling with his Mom and grandmother if possible for this surgery. This is all the details I can go into. Please email me if you can help. Please keep this in your prayers.

Love, Tracy
tmsol87@aol.com

October 9, 2008

Counts from clinic visit

WBC 3.15
HGB 15.1
PLT 326
Creatinine 0.32
IGG 530

October 7, 2008 1:50 PM

Well, I was doing really good with updates and then it seems I stopped.

It is actually due to the fact I ended up in surgery to remove a stone that had been blocking my right kidney. The details are over on the Message Board under a Post title "Prayers-Updates-Details".

So, right now I am recovering which is seeming to be a slower process than I thought it would be but in the long run this will hopefully be taking care of a problem that has been going on for a very very long time that only became an urgent problem on September 18th.

How is Ms. Katia? Well other than being my shadow more so than normal and the best nurse EVER, she is also doing quite a bit of coloring for me, getting me many glasses of water and asking me if I am okay every few minutes. We are watching the Discovery Channel, Disney Channel, Goosebumps Marathons (she loves Goosebumps!), Cartoon Network, reading books, and listening to her Halloween plans and every now and then she lets me get my fill of CNN.

My family has taken VERY VERY good care of me and making sure that I am following the orders to take it easy.

I haven't been physically able to get out of bed so I really can't break that rule of "taking it easy".

The details pretty much spell all of that out. I usually have a very very high pain tolerance. I really hope they didn't remove THAT from me because right now I feel like I fought with an elephant and then somehow I ate him alive so he kicked my insides all around. I had the surgery on Friday and it didn't include incisions. They did put a stent in though.

Anyway, enough about that.

Katia has very much enjoyed her mail coming in and was able to send some out. She is enjoying being back in her classes with Ms. Michelle which is going very well. She hasn't really made up her mind for Halloween but right now we are thinking MUMMY since it is soft and breathable. Her skin has just been very itchy and she gets hot very quickly. She is most comfortable in T-Shirts or cotton dresses and some days she is more puffy than others so a Mummy costume we can use her regular T-Shirts and these leggings we found that aren't the regular tight ones and then just wrap her up in light gauzing. She wants to carry a black cat or bat or something and maybe wear a Halloween headband. Easy enough:)

Lots of love, Tracy

September 19, 2008 5:20 PM

WBC 2.67 (low)
HGB 15.0
PLT 407
IGG 642
FK506 ?
Creatinine 0.30

First, thank you so much for your birthday wishes for Tatiana yesterday:)

They were very sweet!

Katia's clinic went well yesterday for her labs and Pentamindine infusion so we were out of there and back across the bridge right before traffic time to have some cake and icecream.

Believe it or not, Katia only wanted a wee piece of cake and no icecream. Her belly is still giving her issues but that is just something for now we are going to have to deal with since there doesn't seem to be a reason why. Zofran helps to ease it up some. She isn't losing weight at all but her appetite has gone down. Her drinking has remained to be enough and mainly she sticks to drinking water. Definitely she has changed over to soy milk for now. But any other dairy products are fine?

She is happy to have Ms. Michelle back for her classes, very happy!! She did very well with her first bit of testing on showing how well her understanding of words and sounds are as well as her ability to read certain words. Katia is very very much getting into books! She likes little "tales" and anything that has a little bit of scariness in it but not too much. She also likes "Chapter Books" but with pictures but her reading level scored around the beginning of a first grader. That is an improvement and she works hard:)

Her eyes are still her biggest issue when it comes to pain. Her "tush" is improving which she is very very thankful for so I am thinking the FK506 level may be a bit higher this time. The steroid cream also seems to help in that area.

Katia was talking about something she was watching on TV about kids with different diseases and how they wanted to just be "normal" or like other kids. Katia has never really seen herself as different because she hasn't been around other kids for the most part. Before she was diagnosed, she was only 2 and home all the time around her sisters and parents. Since her transplant, she has been homebound due to counts.

So, when she brought up the idea of "normal" I was curious what she would say. She said if she could have something changed she would want to have tears when she cried because she doesn't make any tears. That is true, no tears come out when she cries. Her eyes are constantly dry so we are always using eye drops to add moisture. Her reasoning was because she says it makes it look like she is just having a temper tantrum (sometimes that is what she is having) when she is really not.

Katia has been okay with being shorter and with having to wear a mask. She has adapted to dealing with a lot of things and since it has just been a part of her life, she has never really thought of it as being different or even having to adjust. We have never really treated her differently. She knows about her illness and she knows how miraculous everything is that she has been through. She also knows how amazing her doctors and nurses are.

I am always with Katia, 24 hours a day, 365 days a year but I am still caught off guard sometimes when she says certain things and I think about what is going through her mind sometimes. She is definitely not your typical 8 year old but she is also not a victim of cancer. She is a survivor and a symbol of hope. She is a hero and a reminder a lot of times to me especially to slow down.

There are a lot of things that we could change that are big but sometimes the little things that can be changed would make the biggest difference.

Lots of love, Tracy (and Katia!)

September 18, 2008 7:30 AM

Happy Birthay, Tatiana. Sweet 16:)

We are off to clinic this morning so I will update later. I wanted to jump on here and wish Tatiana a happy happy 16th birthday:)

She has been a great big sister to Katia and an awesome playmate endlessly to Katia so many times. It is hard to believe she is 16 today, WOW!

Happy birthday Tatiana:)

I will update with counts later today.

Love, Tracy

September 9, 2008 7:50 PM

I have actually update 3 times in a few days... wow!

This evening, I actually sat down at the computer to do some Foundation work as we are working with 2 families right now but I checked some messages and wanted to update with a quote on my Facebook page.

Well, in looking up a quote, I came across something.

When I was growing up, we would memorize different verses in Sunday School and get little things out of gift box when we completed one. I remember a bookmark I received with a poem that I loved! I still remember this poem (well not all of it) but I really loved the words to it and even through a lot of situations today, these words come to mind. It is amazing how different verses, poems or even comforting talks someone may have had with us as children will stay with us through our adult years. So, I wanted to share this. I came across it again today.

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

Don't Quit

When things go wrong as they sometimes will;
When the road you're trudging seems all uphill;
When the funds are low, and the debts are high
And you want to smile, but have to sigh;
When care is pressing you down a bit-
Rest if you must, but do not quit.

Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are
It may be near when it seems so far;
So stick to the fight when you're hardest hit-
It's when things go wrong that you must not quit.

"Don't Quit," Author Unknown

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

I just always really liked that poem and really I used to be able to recite it to myself and feel better. Right now I can probably only get a few lines down but I am going to try to memorize it again. I am sure my Neurologist would be happy to hear my recite it. In reading it over again today, it really does seemed to have transitioned right into adult life. I remember I almost used to have a tune I would recite it to.

Just recently I promised myself I was going to get back into writing poetry and Katia and I are planning on a little project of our own together as well. She has something she wants my help with putting onto paper.

By the way, classes with Ms. Michelle (Katia's Homebound Teacher) will actually start on Thursday. So, two "sleep sleeps" as she puts it:)

Lots of love, Tracy

September 7, 2008 12:00 PM

Our prayers are with everyone in the path of yet another Hurricane that seems to be headed, again, in the same path as Gustav or nearby. This also is a very dangerous storm! Hurricane season is so unpredictable other than the fact we know it is unpredictable.

I do have a prayer request to post for Katia. Katia's GVH in some areas seems to be in "flare mode" so I ask you keep that in your prayers. Her "tush" these days is quite uncomfortable. She is beyond the ability of being distracted. We aren't changing any levels of her medications as we have been trying to wean one and going up on any others would be hard on her kidneys so we are using a cream (Triamcinolone) in the area which hopefully will bring some relief, it has in the past.

The other area of course that worsens when GVH seems to flare is her eye sensitivity. There is really nothing that can be done to ease this so she either naps more, takes her pain medication more often (codeine) or uses mind over matter.

Katia believes in prayer. Katia is not one to really get up and let something ruin her whole day so she figures out a way to do something around what is bothering her.

I have to really say Katia is my hero in the way she handles herself. She can be snippy and in a bad mood but then she can also turn right around and bring me a picture she has drawn and explain that she really just doesn't feel good and wants to cozy up or go take a nap for a bit. If she sees someone else isn't feeling good in the house, she is pretty quick to ask what is wrong or make a little picture for them, bring them a glass of water (she is especially protective over me) and bring out her little Doctor Kit.

At 8 years old, she in many ways acts like a typical eight year old but a lot of the times she is such an example of not letting things get the best of you, turning to God and being there for others. WOW!

Hope everyone has a good week. Lots of love, Tracy

September 5, 2008 1:40 PM

WBC 2.22 (low)
HGB 14.1
PLT 404
Creatine 0.29
FK506 3.9
IGG 628

Katia had clinic yesterday for labs and her Pentamindine infusion. I don't have all of her counts back yet so I will add the rest later today or tomorrow. (I updated it 9/7)

Thanks for checking in. Her WBC (white blood cells continue to be low. Not sure yet what her IGG level is but if it is low enough than we will plan an IVIG infusion for next visit.

Her biggest issues lately has been her eyes (that continues) but also her bottom has really been giving her more and more problems which is not an area she likes to have causing her more problems with. So we are going to go back to using the steroid creams there as well. One thing that has changed over the years is Katia has gotten very good at being able to describe what the problem is so the guessing game is not so much an issue except when it comes to her eyes and that isn't really because she can't describe the problem.

Hopefully with the steroid creams, her "tush" can get to feeling somewhat better. GVH is just something that doesn't give much room for relief. A lot has to do with her counts and when her counts go down, a lot of times, the GVH seems to improve and when her counts get better, the GVH gets worse.

Okay, onto the school news. Katia will start back her classes this week with Ms. Michelle!!! Yeah:)

Katia is so happy. She heard me on the phone talking to Ms. Michelle and she was just all smiles!!! She can't wait to show her the reading she has been working on over the summer. She has learned new words and she is ready to show her teacher. Also, Ms. Michelle is funner than Mommy when it comes to school work...

I said I would be off the computer quick so Katia could do her reading with me and then she gets to play on the computer (see work before play). If you haven't gone by that Playpage lately Katia's Playpage, Katia still gets by there quite a bit to Pop the Virtual Bubbles, do the color pages, and play the different games. She likes the Noggin, PlayHouse Disney, and Cartoon Network sites as well. She is quite savvy on the computer. She learned quite a bit about the computer through using the Jumpstart Learning Games and also by hanging on me while I was on the computer:)

I will update the rest of the counts when I get them.

Keeping an eye on Tropical Storm Hanna and keeping everyone in prayer that is in its path.

Lots of love, Tracy (and Katia)

August 31, 2008 12:15 PM

Praying for everyone in the path of Hurricane Gustav. Praying for safe travels for so many evacuating those areas. I know there are alot of people who have family in the path of this Hurricane as well and family in areas that have already been devastated by this Hurricane. Our prayers are with you that you are able to communicate with your family members and with them as well as they try to recover and rebuild. This is proving to be a very powerful Hurricane. Our prayer is that this does not do the amount of damage as Hurricane Katrina did and that it will somehow lose some of its strength before it gets to the Gulf Coast.

Love, Tracy

August 21, 2008

Counts 8/18/08

WBC 3.52
HGB 13.9
PLT 427
Creatinine 0.26
Bun/Cre 46
FK506 7.7

Katia had her regular clinic visit for her Pentamindine Infusion and labs. Her labs looked better than last time although her WBC are still below normal but up over the last two visits so that is better.

Overall she is just itchy but not "pink" on her skin and her skin patches on her hips, knees and chin are better than they were a year ago. Katia's GVH is just kind of hanging around but not getting any worse at this point and seems to slowly be improving with the medications she is currently on. At one point we had thought about starting her on a new treatment when we stopped the Pentostatin but we have no plans of doing that at this time. She just continues on the steroids and her other immunosuppression medications and little by little we are going to try to wean the steroids and see how the GVH responds to weaning.

Still, Katia's biggest issue is definitely her little eyes. They are so uncomfortable all the time and really there are no answers on how to deal with them. We are always looking into different treatments and by we, that includes different studies in different hospitals. Her doctors follow different studies. There is actually another study going on that we may look into. It doesn't have anything directly to do with the eyes, just GVH but it may not hurt to look into it at least. The problem is always whether or not she qualifies due to what treatments and studies she has already participated in, her age, what stage GVH she has, and many other qualifications they look at. Also, we have to look at the added risk involved in trying (especially if it involves any added medications). Katia's body has been on so many very strong medications for a very long time and by God's grace she has been able to continue them.

So many have prayed for Katia throughout the years, left so many words of encouragement, and just always been there through the hard times and the good times.

Katia is learning to read and enjoying books more and more. We knew she would love the ability to read. She is learning math more and more, learning to tell time and learning to count money. For so long, this has been a struggle for her but she has worked very hard and, as she puts it, "things are clicking together".

Through everything, it is always better to focus on the positives.

I love quotes so of course my kids get to hear a LOT of them and one of them that I found lately is:

"If we all did the things we are capable of, we would astound ourselves." Thomas Edison

Very true.

We have always really tried to instill the joy of reading with our children and Katia is catching onto this little by little. Tatiana likes Jane Austin right now. Sharayah has always enjoyed books even though college has kept her busy with classes and reading is hard to squeeze in sometimes. I have always enjoyed autobiographies. Katia loves little story books and "different kind of books". Both Tatiana and Katia are schooled at home so they get a lot of time to enjoy reading which is nice and I think very important.

Tatiana has her upcoming follow up visit with her doctor to go over all her scans for her back, brain, shoulder and neck on the 19th of September and to come up with either more ideas or some sort of therapy or something to help give her some sort of relief. Thank you for keeping her in your prayers.

Although I don't update often (I am not sure really who checks this site anymore) I have given a lengthy update:)

I will try to work on changing the picture. I will have to get creative as Katia doesn't take pictures without her sunglasses and we really haven't been taking much pictures lately.

Also, if you have a Facebook, you can find me over there by my email address tmsol87@aol.com. Please attach a little message letting me know who you are:)

I keep up with that daily.

Hopefully things will stay steady with Katia or get better and this page will never have to be used urgently or for daily updates or multiple daily updates again.

That is our prayer daily.

Thankyou for checking in:)

Love, Tracy

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

August 7, 2008 3:00 PM

Counts from August 4, 2008

WBC 2.91 (low)
HGB 15.2
PLT 432
Creatinine 0.24
FK506 7.7

Normal blood counts are listed above.

Katia went in for her regular Pentamindine Infustion and IVIG infusion (thankyou blood donors!!)

All went well with her clinic visit.

She has been having belly and eye issues but that has been an on and off thing for quite some time it seems. The belly problems seem to happen nearly anytime she eats but we are changing her over to lactose free milk to see if that helps at all. We did that as off Monday, so far no change but we will just stay on that track.

The eye issues... this has just been so ongoing for so so long and has actually caused her to get up during these last two nights which is kind of odd. It has happened in the past but two nights in a row? It ends up turning into a headache and with her pain medication it does go away after a while.

We had quite a bit of rainy days in a row which she loves because they aren't sunny days.

Around the house, Fozzy has been a very good playmate to Katia and is getting better and better with time. He has so much patience with her and just sits with her or follows her around. It is like he understands what she wants him to do. Dogs are just awesome! He is the perfect puppy for her. Fore the Children really brought Katia a lot of happiness with Fozzy back in May 2007 and Fozzy continues to bring her happiness each day! Thank you, Mark and Dana.

Please continue to keep Katia in your prayers. Although I don't update as often, mainly due to the fact things don't so much change with her but seem to remain the same, hopefully someday her body will fully accept her transplant. Katia is very eager to do many things but is also very patient to get well enough to do those things. God has been so good in blessing Katia with both patience and understanding but also the many prayers being said for Katia throughout the years.

God bless each of you.

Love, Tracy

July 24, 2008 10:15 AM

Counts from 7/22/08

WBC 2.83
HGB 15.0
PLT 372
FK506 7.7
IGG 572

Normal blood counts are listed above.

Counts look okay, WBC is low and IVIG will be done during next visit. Overall things just remain the same with Katia. Which, seeing we took her off of her Cellcept finally is a good thing. Getting her off of one medication after weaning little by little is a positive move in the right direction.

Katia's eyes are her big issue still at this time. The white area of her eyes look better some days than others but eye pain is an issue for her most of the time.

She has had a sore throat so they did a throat culture which so far has grown nothing:) I was surprised she admitted to the fact her throat was hurting (usually I have to be the one to say her throat or something that will require a throat or nose culture) has been bothering her since she hates those things but she did. Maybe she forgot about the cultures or is just deciding to get it done and over with... Anyway so far the culture is negative.

On a very sad note, for those of you who have followed Angel Jimmy Reichert page, please keep his family in your prayers. Jimmy passed away yesterday and will be greatly missed.

Thank you for your continued prayers for Katia. Summer is quickly going by. There has been a LOT of rain so far. Nothing like what Texas got yesterday. We were keeping a close eye on the news yesterday and praying for everyone's safety there.

Love, Tracy

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

July 14, 2008 11:44 AM

Counts from 7/7/08

WBC 5.46
HGB 14.2
PLT 321
Creatinine 0.23

I have been meaning to jump on here and update actually change the pictures out but things have been a little hectic.

Katia hasn't been feeling good. With summer here, our hopes is that she will feel good and enjoy summer.

The colonoscopy and endoscopy really didn't give us anything conclusive so we really aren't sure what the problems are coming from. Right now, her main issues are still that she has quite a lot of eye pain, "female" pain, and a sore bottom. Bathtime helps this some but there have been a lot of late nights, early mornings and long in betweens. Katia pretty well knows what will work to make her feel better and when she just needs help being distracted.

I think back over the last 6 1/2 years and really far Katia has come and I am truly amazed and grateful. I think grateful is the first word that usually comes to mind. Grateful to God. Grateful to Katia's doctors and healthcare team. Grateful to family and friends. Just grateful.

Do we get worried? Yes. We have seen so many families around us lose their loved ones either due to the cancer or side effects of treatments early on or years later. We try to focus on hope and the continuous search for a cure and better treatments. Katia's battle with GVHD have shown us really how much goes into research and how much really is needed toward finding better treatments for many different diseases.

The other day I was going through and backing up pictures and although Katia's appearance changes through treatments, her smile stays the same. Different people she has met have commented on the fact she always seems like everything is fine even when she isn't feeling well. Although she can get moody, bossy and have a bad day, the fact is no matter what Katia's focus is she just wants to feel good so she can play and be happy and she loves her family:)

Thank you for your continued prayers for Katia. Please keep all of those in prayers that are fighting many diseases. Hopefully one day soon, there will be cures.

Love, Tracy

PS I will get the pics changed out, soon:)

June 30, 2008 11:26 AM

Hello:)

Results from the biopsies taken during the endoscopy and colonoscopy came back all negative.

Katia has actually been feeling better also since her dose of FK506 has been increased so next counts should show a higher level of this in her system. Her last few count levels have been really low.

Her eyes?? Well they are still very sensative but at least her belly has been feeling better.

Thank you very much for your prayers.

Love, Tracy

June 24, 2008 3:50 PM

WBC 3.67
HGB 14.6
PLT 200
FK506 2.6 (low low)

So, no real results or anything but I just wanted to post her lab results. Katia did sleep a lot after we got home and through the night. Her FK506 level was really low again... we like it to be around 7 ( I prefer around 8). This is one of her anti-rejection medications. The lower the number the worse the GVHD usually gets. Katia's GVH is really responsive to the steroids and her Prograf (FK506)

So, some of her feeling bad can have something to do with the fact that count has been low but when that level gets where we need it, her kidneys have a hard time handling the dose (remember that?)

It is just a balancing act since her GVH has gone on this long and her body has just had to deal with the medicines BUT really with the amount of medicines Katia has taken for the 6 1/2 years, her body and organs have done quite well so we just have to find a way to balance this out.

Hopefully we will get some results from these last tests over the next few days and from the eye doctor. The MRI looked good though of the ORBITS of her eyes.

Thank you for your prayers.

Love, Tracy

June 19, 2008 7:00 PM

COUNTS FROM 6/17
WBC 4.62
HGB 14.3
PLT 319
FK506 3.7 (low)
IGG 577

FIRST, THANKYOU FOR YOUR PRAYERS AND SECOND, PLEASE CONTINUE. WE FEEL SO BAD FOR KATIA RIGHT NOW. SHE DID HAVE HER REGULAR CLINIC VISIT ON TUESDAY FOR HER IV PENTAMINDINE AND LABS. THINGS OTHER THAN THAT WERE JUST NOT ABLE TO BE WORKED OUT WITH THE GASTRO,OPTOMOLOGIST, ANAESTHESIOLOGIST, MRI AND IS NOW LINED UP FOR MONDAY AT 8:00 AM. SO THAT IS GOOD:)

THE WHOLE THING IS TRYING TO ONLY SEDATE HER ONCE AND BEING ABLE TO REALLY DO A GOOD EYE EXAM AFTER THE MRI OF HER ORBITS AND SEE HOW HER CORNEAS AND INNER LIDS LOOK AND JUST SEE ALL WE CAN.

RIGHT NOW KATIA GETS NAUSEATED WITH ANY FOOD AND HER STOMACH PHYSICALLY HURTS MOST OF THE TIME. SHE HAS HAD ALL HER MEDS SWITCHED TO LIQUIDS BUT WILL CHOKE ON FOOD AS WELL. THE UPPER GI MAY SHOW WHY?

HER EYES ARE IRRITATED ALL THE TIME AND IN PAIN MORE AND MORE.

HOPEFULLY WE CAN FIND OUT WHY THIS IS ALL GOING ON AND GET HER FEELING BETTER.

KATIA REALLY WANTS TO FEEL GOOD.

SHE ENJOYED OUR GETTING AWAY TO ORLANDO TO GO SPEAK AND WAS HAPPY TO SWIM. (I NEED TO POST THOSE PICS!) SHE FELT BAD BUT SAID SHE HAD FUN ANYWAY AND WAS HAPPY TO DO SOMETHING DIFFERENT. SHE WAS TEARING UP WHEN MYRON WAS SHARING HER STORY AND SINGING.

WE HAVE ANOTHER SPEAKING ENGAGEMENT AS WELL SOON.

GOD HAS BLESSED US WITH KATIA AND HAS BROUGHT HER THROUGH SO MUCH AND PRAYERS HAVE BEEN SO MUCH A PART OF THAT. SHE KNOWS THIS. WE KNOW THIS. THANK YOU:)

LOVE, TRACY

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

June 11, 2008 7:15 PM
ADD ON 3PM 6/12: Katia's clinic date will move to Tuesday instead of this Friday which is okay. It is better that things can all be done at the same time so scheduling is important.

Small prayer request.

Katia goes to clinic on Friday for her regular Pentamindine treatment and hopefully the rest of these this can be lined up (it should be).

She has been really having a lot of eye pain and bottom pain so she is just really hoping something can get figured out. She has a lot of faith in her doctors and the tests that can be ran but she is really praying and praying also.

The plan is to do an MRI to see the orbits of her eyes (remember this all started with a tumor behind her right eye) and also while she is asleep to do a full eye exam and get a good look at her corneas and the under parts of her eye lids. Also to do a full exam and have a GI doctor come in and have a look.

She has needed quite a bit of extra pain medicine and her baths as well as cold cloths for her eyes and just having to deal with the pain also. It is hard to watch her deal with this. We all understand things could always be worse. We also just want to see Katia feel better.

Thank you for your prayers always.

Love, Tracy

PS I will work on getting some of those pics up from the convention, I really have been meaning to.

June 8, 2008 9:00 AM

Hello, just a quick update. Promise to keep it short:)

First, please keep Myron's Mom in your prayers. I don't really know much details but she has been having some medical issues and had to rush to the doctor on the mainland and have some testing done and now they need to go see another doctor as well. Something about a type of fluid sac of sorts behind her knee that has suddenly enlarged which needs to be drained and sent off? Please just keep this in your prayers that she will be in the right hands and the right tests will be done and the results will be okay. This all has come up suddenly in the last 48 hours. They live in Honduras.

During the end of last week, Myron was the Key Note Speaker for the Florida Association of Blood Banks Convention held in Orlando so we went for 2 days. Katia was definitely happy for the little get-a-way. We all were. The hotel was very nice. The convention was very nice. Part way through the 1st part of the Day One, we realized our camera wasn't saving any pictures we were taking..... so that wasn't good but we decided to not let that get in our way. We got to go out on a paddle boat, swim and take part in an awards banquet. In between Katia had a few issues and we spent some time in the room, but it was a nice room with a view of the Disney Parks and fireworks. Myron's speaking for this was about an hour and shared Katia's story as well as the important part the Florida Association of Blood Banks plays in saving lives. This is a wonderful, amazing group of people!!!!

Florida Association of Blood Banks

I have a few pictures I will try to post today or tomorrow that were able to save. I normally could have take a hundred or hundreds:)

Love, Tracy

June 2, 2008 5:20 PM

Labs from Friday 5/30/08

WBC 4.81
HGB 12.7
PLT 348
FK506 1.5 (that isn't a typo)
Creatinine 0.32

So, I am getting a little slow at these updates after clinic...

Katia wasn't feeling too well from her eyes, hips, underarms and just anything that could itch or hurt was doing just that. Her eyes are really giving her a lot of grief both from the sun and sudden pain that requires codeine and cold cloths with pressure.

Well part of this was definitely explained with the FK506 level being 1.5. Usually that is around 8 or 10. Since Katia's kidneys were taking such a hit not too far back due to the C-Diff, the level of Prograf (FK506) medicine she could take had to be reduced to give her kidneys a break but also because her body wasn't even absorbing the medication so her level was really high well now the level is all the way down to 1.5!

So now we have gone up a bit, not a lot or we will be right back to a high level and kidneys unable to handle anything. Her creatinine count is already creeping up a bit so she needs to drink more water as we go up on the FK506 right now. Katia is already showing some improvement in regards to her skin especially around her hips and the itching on her skin. Her armpits aren't so messed up either and her eyes aren't so irritated. She is still having the sudden eye pain that just comes out of nowhere.

We are lining up an MRI of her orbits as well as a full eye exam within the next 2 weeks hopefully. The eye causing the issue right now is not the same eye that she initially had the tumor in. The hard part is getting Katia to have an eye exam, the full exam that is necessary. This would include not only the eye exam that involves all the dilation drops and the eye exam most of us are used to but also a good look of the eyelids and corneas and the under part of eyelids as well as maybe putting some punctal plugs where they weren't put before if they see this is necessary so right now the idea is to do the eye exam while she is sedated for the MRI.

When we are lining up one thing that requires sedation, the idea is to line up anything else that would require sedation at the same time.

Other than that, Katia is eating good right now, quite well actually. Drinking could improve although she is drinking quite a bit of milk which is always good. Fozzy is doing his job with keeping her entertained and active. For the summer she is supposed to be working on some reading books Ms. Michelle left her as well as we have a goal for her to learn the Days of the week by heart and be able to read the calendar (or at least understand it).

Over the summer, please remember how important it is to donate blood. Many people rely on blood products year round. Over the summer, many people spend more time out on the road or out at the beach causing more people to possibly end up in emergency rooms. Emergencies can never be planned on by anyone. Blood supplies of all blood types are low all over the country. If you can donate once, twice or become a regular blood donor, you are saving lives. By saving one life, you could be saving a whole family.

Lots of love, Tracy

May 28, 2008

Just a small bit of an update but some good news.

C-Diff seems to be all cleared up:)

Katia is happy about that. She stopped taking the antibiotics a few days back. She returns to clinic on Friday.

Today was her last day of class with Ms. Michelle for this school year. Not so happy about that. In some ways yes but she likes Ms. Michelle a lot!

We went to the park for a bit today and Katia played a bit with her sand bucket and shovel. Of course the sun makes those little outings short but it is nice to get out for a bit.

I hope everyone is having a nice week.

Katia has been decorating her little "Pet Rocks". Some went out and have already been received and some are about to go out the end of this week. It has been a fun project. Katia is quite good and has a very steady hand. I remember when her hands were so shaky.

She has some new design ideas so we will try those out when we get more rocks and supplies. Right now, we have been having a lot of eyeballs looking at us from the dining room table:)

I will update after clinic. I should take a picture of Katia before clinic. She is into wearing all pink, all the time right now.

Love, Tracy

May 17, 2008 8:31 AM

Counts from 5/15/08

WBC 3.75
HGB 13.8
PLT 365
Creatinine 0.18
FK506 3.6

Clinic went well. We were there for the full day but we got everything done. Pentamindine and IVIG. Katia really started not feeling well near the end with stomach cramps and the drive home ended up in 5:00 traffic. Her belly is really cramping up quite a bit as she remains C-Diff positive. She did start Vancomycin when she got home from clinic for the C-Diff. Hopefully this will things up for her. Friday she still had a very sore belly as well as some runny stools so she pretty well stuck to laying low and eating some light foods and drinking just water. She is drinking good at least.

Yesterday she sat at the table and did some drawing while I boxed some stuff to mail (the Pet Rocks that had been ordered) and played in her room for a bit so she is getting up which her doctor is always happy to hear. Katia is not a very "high energy" person.

Well, that is about all that is going on around here. Not sure what is going on today. I know what she wants to do today. She wants to do some painting but I just got the dining room table all cleared off when I boxed everything up yesterday so we will see...

Please pray the Vancomycin clears up the C-Diff.

Lots of love, Tracy (and Katia)

May 14, 2005 12:05 PM

Hello there:)

Spring is really in the air here. It has been hot the last few days but that is okay. It has been nice weather.

Of course Katia is not a fan of the sun due to her eyes which have really been bothering her both indoors and outdoors a lot lately especially last night. She couldn't even open her left eye so she basically was just holding a cold cloth on it the whole evening and until she fell asleep. Not sure what the problem is and really nobody is sure. Eye tests never really determine much but the fact there is a lot of damage to the corneas due to GVH and other than scraping the corneas, there isn't much we can do. Scraping the corneas gives relief for a week or so until the damage gets done again since the GVH is still an ongoing issue. So, please just keep this in your prayers.

Her "tushy" issue seems to have resolved some so thank you for your prayers:) It seemed to have been a fissure (tear of sorts) and it healed thank goodness.

She is still C-Diff positive so she will be starting Vancomycin this afternoon. She isn't happy about that. She wanted to not be contagious anymore. By that she mainly means she doesn't want to take anymore yucky medicines. But, at least she really doesn't have any bad symptoms right now so hopefully we can get this C-Diff cleared up. In the past when she has had it, it has taken a while to get it cleared up. She has had some issues with her bowel movements throughout the weekend so I was waiting for a call saying the stool we handed in grew something or showed something and the call came in... I wasn't too surprised.

We have clinic on Thursday for Pentamindine and IVIG. So, it will be a long day. I promised Katia we will take some movies she is wanting me to watch with her. She mainly lays there and listens to them and I watch. Her eyes have really been bugging her. She is okay for just talking or something but watching TV or playing a video game is really hard on her eyes. Going outside, really bad! She always has her big sunglasses on at least which helps but even so, her eyes are usually closed even under those.

She is definitely having a lot of fun painting her rocks though. She doesn't even get paint anywhere. She is very neat with paint. All the orders that have come in are about to get mailed out, probably by Friday or Saturday. If you are interested, please just email me. The link I had up kept giving me problems so I need to figure something out. I will post a picture though of the different rocks back on here in a bit.

Lots of love, Tracy

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

May 11, 2008 "Mother's Day"

Today is a day honoring Mothers and my day started with Tatiana and Katia whipping up some pancakes for me:)

For many reasons Mother's Day is a very special day for me. God has blessed me with 3 beautful daughters, my own Mom has become closer to me over the past few years and Myron's Mom has been such an important part of my life over the past 22 years that some sort of a title for what is to me wouldn't sum up what she is to me.

She is very special and has always been like a Mom to me.

I received a poem (well kind of like a poem) via email earlier from someone who has not only herself been a very important part of my life but her family was also very important in my life.

This is about Mother's Day but I think it is about Mother's everyday.

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

Mother's Day.

This is for the mothers who have sat up all night with sick toddlers in their arms, wiping up puke laced with Oscar Mayer wieners and cherry Kool-Aid saying, 'It's okay honey, Mommy's here'.

Who have sat in rocking chairs for hours on end soothing crying babies who can't be comforted. This is for all the mothers who show up at work with spit-up in their hair and milk stains on their blouses and diapers in their purse.

For all the mothers who run carpools and make cookies and sew Halloween costumes. And all the mothers who DON'T.

This is for the mothers who gave birth to babies they'll never see. And the mothers who took those babies and gave them homes.

This is for the mothers whose priceless art collections are hanging on their refrigerator doors.

And for all the mothers who froze their buns on metal bleachers at football, hockey or soccer games instead of watching from the warmth of their cars, so that when their kids asked, 'Did you see me, Mom?' they could say, 'Of course, I wouldn't have missed it for the world,' and mean it.

This is for all the mothers who yell at their kids in the grocery store and swat them in despair when they stomp their feet and scream for ice cream before dinner. And for all the mothers who count to ten instead, but realize how child abuse happens.

This is for all the mothers who sat down with their children and explained all about making babies. And for all the (grand) mothers who wanted to, but just couldn't find the words.

This is for all the mothers who go hungry, so their children can eat.

For all the mothers who read 'Goodnight, Moon' twice a night for a year. And then read it again. ‘Just one more time.'

This is for all the mothers who taught their children to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead.

This is for all the mothers who teach their sons to cook and their daughters to sink a jump shot.

This is for every mother whose head turns automatically when a little voice calls 'Mom?' in a crowd, even though they know their own offspring are at home -- or even away at college.

This is for all the mothers who sent their kids to school with stomach aches, assuring them they'd be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.

This is for mothers whose children have gone astray, who can't find the words to reach them.

For all the mothers who bite their lips until they bleed when their 14 year olds dye their hair green.

For all the mothers of the victims of recent school shootings, and the mothers of those who did the shooting.

For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely.

This is for all the mothers who taught their children to be peaceful, and now pray they come home safely from a war.

What makes a good Mother anyway? Is it patience? Compassion? Broad hips?

The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time?

Or is it in her heart?

Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time? The jolt that takes you from sleep to dread, from bed to crib at 2 A.M. to put your hand on the back of a sleeping baby?
The panic, years later, that comes again at 2 A.M. when you just want to hear their key in the door and know they are safe again in your home?

Or the need to flee from wherever you are and hug your child when you hear news of a fire, a car accident, a child dying?

The emotions of motherhood are universal and so our thoughts are for young mothers stumbling through diaper changes and sleep deprivation...

And mature mothers learning to let go.

For working mothers and stay-at-home mothers.

Single mothers and married mothers.

Mothers with money, mothers without.

This is for you all. For all of us.

Hang in there. In the end we can only do the best we can. Tell them every day that we love them. And pray.

Please pass along to all the Moms in your life.

'Home is what catches you when you fall - and we all fall.'

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

Love, Tracy

May 9, 2008 4:06 PM

So, I added a few new pics. I added some "Relay for Life" pics on the Photo page. I really love the "Survivor" one. That word means so much and the American Cancer Society, Leukemia and Lymphoma Society, Pediatric Cancer Foundation, Childrens Cancer Center, National Marrow Donor Program, Florida Blood Services and yes, the Katia Solomon Foundation, everyone working together to not only help find a cure but also help with treatments and during treatments really mean so much to patients and their families. We have had the opportunity to be on both sides as a family with someone going through cancer and also as a Foundation helping families go through treatment. Katia walked that track slowly but if you remember, walking hasn't always been something she could do and not long ago, walking distance wasn't something she could do. So, we are always grateful for advances she does make and those advances are made possible by God,medical advances, her doctors, and so many of your continued prayers and support.

Love, Tracy

May 9, 2008 12:43 PM

WBC 3.3
HGB 13.2
PLT 463
FK506 3.1

Hello. Katia had clinic yesterday so those are the counts (well preliminary counts). We actually were there just briefly, didn't even get plugged in for anything:)

That is a rare thing.

We go back next week for Pentamindine and IVIG. The visit yesterday was mainly due to the fact her WBC had been dropping and we needed to make sure it wasn't going down more or she may have need GCSF. But, the clinic counts show it went up to 3.3.

Katia has been having difficulty having bowel movements. When she would go she was in a lot of pain. Mineral oil always solves the problem if she is constipated. Usually within a few hours of the first dose she starts getting some sort of relief and gets back on track but the pain wasn't going away. Well, she has a little rectal fissure (tear). She hasn't had one for quite some time. They really do hurt. The mineral oil helps as well as soaking in the tub and good 'ole Butt Paste (that stuff is really good!)

I just feel bad for her. She has a lot of patience though so she is laying low today but pretty attached at the hip to me and if she has to make a trip to the bathroom, I must go with her.

I am glad her counts came up so hopefully this can heal up. Since she is is so immunosuppressed it takes a while for things to go away.

She is happy about her Pet Rocks being liked:)

It isn't noted on the page but the shipping and handling is the same no matter if a person orders one Pet Rock or ten of them. I should have noted that. I need to make that clear.

She has quite a few of them done and more ready to stick the eyes on and decorate.

She hasn't had school this week due to an added doctor visit and her teacher has been sick. However, Katia has been practicing her reading and is moving along with that pretty well I think.

She is munching Cheerios as I type (we support the Cheerio company!) and wondering why I didn't change the pictures on the site yet?????

Good question.

I will.

I need to downsize them and get them on here. She is really on top of things, you think?

Love, Tracy

May 7, 2008 10: 25 AM

Well, there were 3 things I was supposed to get posted. The craft project of Katia's....

Done:)

The "Disney on Ice" pictures. I have uploaded them and I am nearly done with those. They came out really dark which isn't surprising seeing the place was really dark. I will post a few of those today (or tomorrow) though.

And then we were invited to speak at a Relay for Life event last weekend so I have some pictures from that as well.

So, I guess I will just make some photo collages(sp).

You know how you get started on something and then you get started on something else and then something else. Well that is me lately. It isn't like me to be that way. So, stick with me. Even Katia wants me to change that picture of the bike off of here.

But, she is happy her rocks are done. I wouldn't let her use the glue by herself for the eyeballs on the rocks. I was stalling her project. The glue wasn't as sticky as I thought it would be.

We have clinic tomorrow mainly because her ANC has steadily been going down and also we have to hand in some poopies. She is off the yucky medicine since Monday so we are praying and praying the C-Diff will be gone and stay away. It is kind of known for coming back with Katia (and other people) so we don't want that to happen. She really was excited when I said she was taking her last dose of Flagyl and I hope that was really right.

She is still run down quite a bit and nauseated but not nauseated as much or as often so that is good. No runny stools. No fevers. She takes naps quite a bit. That can always be due to eye pain though. Her appetite??? Well, kind sorta maybe?? Not great but enough. Her drinking? Better.

Labs will say a lot.

I will update after clinic with her labs.

Katia is anxious to see how you like her Rocks and hopefully some of them can find some new friends and good homes. She has been a good Mommy to a few of her own that she received over the year. She has hauled them around back and forth to Miami, to clinic, to the hospital, to wherever:)

Lots of love, Tracy

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

May 5, 2008

Please keep the family of Angel Sierra K. in your prayers. She passed away and she will be dearly missed by so many. Service information is on her website.

Love, Tracy

May 2, 2008

WBC 2.40
HGB 14.2
PLT 413
Creatinine 0.29

We are back from clinic. Katia has a few more days of the Flagyl, then we will check her stool again next Friday to see how things are looking with the C-Diff. She is still nauseated a lot but that may not have anything or little to do with the C-Diff. Still has a lot to improve on with her drinking BUT she is doing better:)

She is sleeping quite a bit and tired when she isn't sleeping. Obviously her body is trying to help her get better.

She had a very nice surpise last night! "Disney on Ice"!!! Thank you Pediatric Cancer Foundation:) The show was wonderful and the timing of going to the show was really perfect. Katia got sick near the end so we left a little early but it ended up being really right at the end. Her belly was getting pretty nauseated and she was afraid it wasn't going to hold.

I had been sick as well but mainly with some really bad headaches and nausea going together but I was really happy for Katia and Tatiana was really enjoying it and as parents that just warms your heart. Disney is just amazing at anything they do and they just put on a spectacular show!!!

I will post some pictures. I had promised to lay low for the weekend. We have Relay for Life event to go out to tomorrow and speak at and after that, laying low. Katia finishes her Flagyl on Monday so you will probably hear a scream of happiness no matter where you live! She is eager for Monday. I am praying her stool is negative for C-Diff.

So, that is what is up here. Please keep Sierra and Peyton in your prayers and the many others in-patient at this time or fighting their fight. So many families could really use prayers for loss of loved ones or are in the the days and months of their journey here on earth. And always, pray for a cure, soon.

Love, Tracy

April 29, 2008 12:20 PM

Counts for 4/28/08

WBC 3.24
HGB 14.9
PLT 273
Creatinine 0.21
FK506

Katia is getting better:)

Yep, she is feeling a little bit better day by day. Still nauseated but not as bad. That is her words. She still needs to drink about twice as much as she is drinking so she still needs IV fluids. But, she is finally feeling like that yucky medicine just might be worth taking:)

One thing her doctor and I both have noticed is her skin has actually looked clearer. Maybe its the C-Diff??

Maybe its the bath soaks. Katia likes to soak in the tub when she doesn't feel good. I think she gets that from me. I am not a tub person but I like to take a shower when I don't feel good or I am stressed. Lately, I should live in the shower...

There really is no rhyme or reason why her skin seems to be showing improvement but right now, it seems to be. Her eyes sometimes look good (they eyelids more so than the corneas) and other times they really cause Katia a lot of pain. Her mouth is pretty clear inside, especially the cheeks.

The one thing that changed recently for Katia that may have something to do with these changes? We went from the pill form of steroids to the suspension form of steroids which may be that her body responds to it better.

I don't know but whatever it is seems to be beneficial for Katia.

Although Katia's skin is appearing better, she continues to have the ongoing itching especially with clothing. She basically stays in t-shirts and leggings. That is her comfort wear. She wears them out because that is all she basically wears. She likes to wear sundresses too as long as they are comfortable and don't itch or aren't tight. Pretty and comfy:)

Tatiana and I are helping Katia with a craft project. Actually we haven't been too helpful. But, as soon as it is done, it will be posted. She has kind of an idea how she wants it done and wants it to be shown. Hopefully we can get it posted within the week. So, keep an eye out.

Lots of love, Tracy (and Katia)

April 25, 2008 7:50 PM

WBC 3.26
HGB 14.6
PLT 374
Creatinine 0.34
FK506 28.7

Hello:)

So, Katia is happier today than yesterday. She is feeling a bit better but the good news is they fixed her medicine so instead of taking 9 MLs 4 times a day, she is taking 3.6 MLs 3 times a day. That is a big difference to her! She can't stand the taste but she has stopped giving me a hard time taking it. She eats a few cheerios to get the taste out and then drinks water (fluids are good!) She is just really eager for her belly to start feeling a lot better. She is looking better though. She is drinking but not enough. She got IV fluids at clinic today.

Her FK506 level went from 6.8 on 2 days ago to 28.7 so it isn't breaking down the way it is supposed to. We are going to hold the dose through the weekend. That medicine is really hard on her kidneys so hopefully this will give her kidneys a rest and she will drink and flush out her system and the Flagyl will work on the C-Diff.

So far now, fluids, fluids, fluids:)

Thank you for checking in.

Love, Tracy

April 24, 2008 10:30 AM

HOPEFULLY KATIA WILL BE FEELING BETTER SOON. I PICKED UP HER MEDICINE YESTERDAY (2 BIG BOTTLES OF FLAGYL) AFTER QUITE A BIT OF PHONE CALLS BETWEEN HER DOCTOR AND DIFFERENT PHARMACIES TRYING TO GET THE MEDICINE MIXED UP IN A LIQUID FORM. THEN TO GET INSURANCE WORKED OUT. AROUND 7:30, IT WAS WORKED OUT.

SO I COME HOME WITH THESE TWO LARGE BOTTLES. BASICALLY KATIA IS PRETTY WILLING TO DO ANYTHING TO FEEL BETTER THAN SHE DOES RIGHT NOW. HOWEVER THE SITE OF THESE BOTTLES ALMOST MADE HER PUKE!

IT IS BASICALLY MADE FROM THE CAPSULES EMPTIED AND ADDED INTO A LIQUID AND MIXED. SHE DRINKS 9mls 4 TIMES A DAY FOR 14 DAYS.

SHE FELT PRETTY GOOD AT CLINIC DURING THE IV FLUIDS AND FOR ABOUT 4 HOURS AFTER. BUT THEN SHE FEELS CRUMMY AGAIN. HOPEFULLY A FEW DAYS OF MEDS WILL GET THE C-DIFF UNDER CONTROL, AND THAT WILL PROVE TO BE THE CAUSE OF WHY SHE FEELS SO BAD.

THE MEDICINE TASTE REAL BAD AND MAKES HER GAG AND SINCE SHE TAKES IT 4 TIMES A DAY, IT MAY BE A LONG 14 DAYS BUT SHE HAS DONE IT AT LEAST 5 TO 10 BEFORE. I FEEL BAD SHE HAS HAD TO DO IT THAT MANY TIMES BEFORE.

SHE IS STILL ASLEEP RIGHT NOW BUT SHE DID HAVE A GOOD NIGHT OF SLEEP SO THAT IS GOOD. I FEEL BAD SHE HAS TO START HER DAY WITH A MEDICINE SHE HATES BUT I REALLY HOPE IT MAKES HER FEEL BETTER SO SHE CAN AT LEAST SEE IT WAS WOTH IT.

CAN YOU TELL I FEEL BAD MAKING HER TAKE IT??

LOVE, TRACY

April 23, 2008 4:30 PM

Creatinine 0.37
FK506 6.8

Katia's kidney counts showed improvement:) She however needs to keep drinking a lot and keep herself hydrated. She is positive for C-Diff in her stools so she will start on Flagyl probably for 14 to 21 days. Not sure yet. That would explain the loose stools and maybe even the bad feelings in her belly. The nausea? Maybe. She has had the nausea for quite a while and last week the stool sample was negative for c-diff.

She is drinking right now and promises to do better tonight than last night and she has eaten better today also.

She really wants to feel better. She was determined there was some monster in her belly these last few days and c-diff will make a person feel like that so hopefully once she is on the medicine, she will feel better and the "monster" feeling will go away.

Thank you so much for your prayers.

Love, Tracy (and Katia)

PS You like the gold shoes for bike riding? Katia pulled that outfit together:)

April 22, 2008 7:53 PM

WBC 4.26
HGB 14.9
PLT 386
Creatine 0.51

Hello. Well, we did get to come home but will go back in the morning to clinic but home is good:)

Katia is still nauseated but hasn't thrown up since around 8:00 this morning. Basically her stomach emptied around then. She had a bag of IV fluids at clinic and about 6-8 ounces of water and some cheerios. The decision was to let her come home and drink fluids and come back in the morning to recheck her labs.

Then the Chemistry results came in and there was concern as to how dehydrated she was due to the fact one of her medicines is also very hard on her kidneys. Her creatinine count had gone from 0.27 on Friday to 0.51 today. But, we still were able to come home under the strict instructions she has to get down at least 20 ounces of fluids and must return if she throws up at all or has any runny stools since she can't afford to lose any more fluids.

Katia is stressed over the drinking but she is trying and she is going to try to eat some alphabet soup. Right now she is laying down. She is just nervous to eat and then throw up because that means she goes in...

We were able to hand in a urine and stool sample while we were at clinic. So she had that to send to the lab and blood cultures drawn. This could just be a bug she has picked up somehow or something she ate that didn't agree with her somehow. Hopefully she gets to feeling better. Her weight went from 18.6 kg to 18.0 kg since Friday. That is 41 lb to 39 1/2 which is mainly fluid.

It has been a long night and day so hopefully she feels better tonight.

I will update if anything changes overnight or after clinic tomorrow.

Love, Tracy (and Katia!)

PS I also added the photo at the top today. I uploaded the pictures off my camera and this is a pretty rare picture to have one with Katia, no sunglasses and eyes open. This was March 30th in the evening. Every other picture her eyes are closed but this one, her eyes are open:)

April 22, 2008 12:02 PM

Katia had a long night of nausea which ended up in a lot of throwing up and runny stools. Not really sure what is causing all of this? Her last stools specimens did all come back negative of anything. She is feeling very puny today so her classes with Ms. Michelle has been called off. I put in a call to her to her doctor. Hopefully this doesn't end up in an admit but at this time, nothing (including fluids) is staying down so she could end up dehydrated if this keeps up. Also, the cause needs to be figured out.

So, please keep Katia in your prayers.

She is curled up on the sofa where she ahs basically been since about 6:00 yesterday evening. She did get up and get a bath this morning around 7AM. I thought that would help her feel somewhat better but she just curled right back up on the sofa. Poor baby:(

Love, Tracy

April 20, 2008 7:50 PM

Counts from Friday Clinic-April 18th

WBC 4.16
HGB 13.8
PLT 323
Creatinine 0.27
FK506 6.7
IGG 826

Height 97cm
Weight 18kg

I am kind of noticing a lack in my updating... sorry.

Sometimes with the way things go with Katia, it is a little hard to update as things go up and down with her and it is difficult to explain.

Her GVH has been responding a bit better to the liquid steroids, at least on her skin so that is a benefit to the fact we had to change from the pills to liquids recently.

We did finally get her medicines changed over as of Friday.

One difficulty Katia has been having each morning and night right night is nausea. She takes Zofran in the mornings which helps after about an hour or so and for the evening, she tries Benedryl or Ativan or, if needed, both.

She has had issues coming and going lately which is one of the reasons I actually hold off on updating. I know that sounds like a reason to update but I really feel like so many of you have followed Katia for so long that it is really as disheartening for you as it is to us when Katia is feeling bad.

She just has some puny feeling days lately.

We did have her stools (poop!) tested and there is no blood in her stools. We are waiting to see if anything else grows but no blood is good.

Her appetite is kind of coming and going. She is ALWAYS hungry but her eyes are becoming bigger than her belly. I think nausea has something to do with that also.

She has begun taking more naps than usual. I think it is due to being tired but also because her eyes bother her. She is however really doing much better with her school work as far as her attention span and she is just really putting a lot more effort into her work. She has always put effort but lately she has put some added effort.

As far as what we are going to do for her osteoporosis. The Fosamax just wasn't doing what anyone had hoped it would do. The side effects of Fosamax aren't really causing Katia any problems but with the difficulties she is having with pills and also the fact over the last 2 years, she hasn't shown the improvement hoped (mostly due to the fact she is still on the continued higher dose of steroids), we are going to go with supplements instead. What those supplements are going to be hasn't been worked out yet.

Katia has become more active over these two years. She tires easily but she is up and about around the house, she is starting to get on her bike now for 15-20 minutes at a time. Fozzy has kept her busy and she keeps him busy. He really was great timing for Katia. That little puppy has a lot of patience with Katia.

Oh, that word brings up something else, PATIENCE! Katia has none of that right now. She has been beyond moody lately. I mean, we are used to Katia being on steroids. She doesn't do cycles of steroids. She has been on them everyday since around April 2004. She has been hungry, cranky and unpredictable since then. This last few weeks, she has been building to a point of concern actually. We have to constantly remind her to stop and slow down. Anything gets her upset. Anything. She is 8 now and not a typical 8 year old so she has one minute can be totally different from the next.

Katia is still very loving and caring and always is able to be talked to and reasoned with. She is very good at telling me what is bothering her or what she is thinking. Of course as her Mommy, it really worries me and pains me to see her get so upset but at the same time, I have to think about the fact she is also getting older and she has to learn to cope with things and other people in the right way. I look at her and since she still looks the same in so many ways, same height and same look in her eyes, it is hard to sometimes remember, she is 8. But when I sit down and talk to her, she seems older than 8 a lot of times.

But when she cuddles with me and gives me a hug or falls asleep with me, she is my baby:)

Please keep her in your prayers. I can't imagine the many things that go through her mind. Sometimes I think there must be so much but other times when I am talking to her and she seems like she is pretty worry-free, I think maybe God really gives Katia a sense of peace. That would be such a blessing for her. Let her focus on clinic and medical stuff when we are there or when she is feeling bad but when it isn't necessary, let her focus on other things.

She is a fun little girl to sit and chat with and be care-free with.

Someday, maybe she can update her own website (wow, can you imagine?) She is going to read back and say, "YOU WERE TALKING ABOUT MY POOP!!!!"

Anyway, have a good night:)

Love, Tracy

April 13, 2008 8:25 AM

Hello, I figured I hadn't actually updated for a bit. I put a prayer request on the Message Board but I haven't updated here and didn't realize that until last night so I needed to jump on here and do that.

These last few weeks, Katia has been having issues with taking her pills. I am not sure I mentioned a while back about Katia throwing up blood but since that time, she has now not been being able to take her pills like she needs to. Some we have been able to change over to suspension (liquid) and others we are still working on getting changed over. The concern is why is this becoming an issue. She has taken a lot of pills, without any issues, every day, every morning and night for the the last four or five years. Before transplant most of her medicines were liquids because of her age.

The first pills we changed over were her steroids because that equals 5 to 6 pills a day and now we are working on her Voriconazole (fungal medicine) which is 3 pills per day. She keeps either throwing those right up or choking on them. It is a real necessity for her to get those down as fungal infections is something that is a great concern and something that can sneak right up on Katia with such low counts and a history aspergillosis. So, we need to make sure she gets her medicine doses down. Sometimes she is able to get the pills down but mostly not.

We are also discussing some changes regarding her treatment for her osteoporosis as the Fosomax has some very concerning side effects and hasn't really seemed to to benefit Katia. She usually starts each Friday with her dose of Fosomax but that is going to change now. I am not sure of the new plan totally but I think we are going to go more with supplements.

Over the last two nights, she is having an ongoing problem with her left shoulder and right hip but only at night and once she gets her pain meds, it goes away. During the day, she is not using that shoulder as much these last two days so I don't know if she has hurt it or something but we will see at clinic what they say.

This has been Katia's Spring Break off from school and Tatiana too:)

Both have been enjoying the "time off" although they both have little projects to do here and there. Katia has some math to work on and thought it was going to be harder than it was but she has done quite well with it. She is learning to do "Column Math". I like the look on her face when she realizes she understands something. I have found it is best to do a little work with Katia every day because time off lets things drift out of her brain. But, just a few minutes of work keep things fresh in her brain and she doesn't mind sitting down and working with me. She likes workbooks as long as the writing is big and there isn't a LOT to do:)

I am very proud of Katia.

We were watching home movies yesterday from the time Tatiana was a one year old (she was cute!!!) and it was so neat to watch Katia's reactions to "Baby Tatiana". It was like Katia was the big sister suddenly. Also, Katia was the only one of my kids that never knew my beloved doggie that I had for 19 years, Skeezer:) He passed away before she was born. So, this is her only way of seeing him. She definitely knows all about him because he gets talked about all the time still today. It is nice looking back at old home movies. We don't film much now, just little things clips I do on my digital camera here and there when we are outside but back then we used to film a LOT!!!! I think we used a whole tape in 3 days leading up to Tatiana's 3rd birthday.

Fozzy was even watching the old home movies:)

So, that kind of catches up on what is going on here.

Please keep Katia in your prayers that we can get things switches from pills to suspensions and we can find the cause to what is causing this to suddenly be a problem. Also, that her shoulder and hip will feel better. Of course, we are always concerned about her GVH and immune system. There has been quite a bit of discussion and concern lately about Katia's immune system and White Blood Cells. When her immune system does kick in and start making its own, will it be good cells or bad cells? It could be either. We pray for all good cells. But, we will pray and pray and cross that bridge when it gets here. So far it has been 4 years and her immune system has still just held back mainly due to the GVH and the fact she is on so many immune suppressing medications.

Everyday is a gift and everyday is another day that a cure can be found, new treatments can be found and a reason to hope and believe.

Lots of love, Tracy

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

April 6, 2008

Just wanted to post this these articles.

Emily's St. Pete Times Article
"Emily's Obituary"

Missing Emily deeply. Please keep her family in your prayers. Her website is updated and will have her service information when it is available.

Angel Emily Lester

Love, Tracy

PS The photo at the top is Fozzy. Just to "lighten things up". He, Katia and Tatiana have been enjoying spring break today INDOORS with the rain coming down outside.

April 5, 2008

Katia's Labs from yesterday
WBC 3.91
HGB 14.5
PLT 349
Abs. Neut 1.9
FK506 ?
IVIG Dose Given

I am actually not going to give much of an update on Katia today. We had clinic for a dose of IVIG and Pentamindine which went well.

I ask that you keep Emily Lester
your prayers as she is in very critical condition at St. Jude at this time. Detailed information can be found on her website. Each hour is very critical and right now, Emily needs a miracle.
UPDATE: EMILY ELIZABETH LESTER PASSED AWAY AT 2:OO A.M 4/5/08
Please keep her family and friends in your prayers as well as the many many lives she has touched and will continue to touch in your prayers.

Also, Ethan Powell
is desperately in need of a miralce. He is also at St. Jude and each minute it seems things are changing and adjustments are needing to be made to keep this little boy alive. Please pray for him and his family. His website is continuously updated.
UPDATE: ETHAN POWELL PASSED AWAY AT 11:37 AM 4/5/08 Please continue to pray for his family and all of those that supported him during his very short time here on earth. Though his time was short, he touched the lives of many.

Sierra K.Sierra K. just recently relapsed and her family has some difficult decisions to make but for now the prayers are centered around Sierra getting back into remission. Sierra has leukemia ALL and Down Syndrome and had just recently, very recently finished treatment but relapsed. Please keep her in prayer.

For prayer requests like these and updates on prayer requests or to post prayer requests, you can visit the "Staying in Touch" Message Board. The link is always at the top of this site as well.

I will update more on Katia next time I do an update on here. For this week, she is "off" for Spring Break for her Homebound School BUT she is going to be doing some preparation work for some math she will be working on. We will make it fun at least:)

We are going to be working on making some jewelry also and hopefully get to the park. She has been having some added issues with bleeding in her stools which appear to have cleared up possibly but we are keeping an eye on this still.

She also has had some "swallowing" concerns where she couldn't swallow. But that seems to have cleared up as well.

Please continue to keep Katia in your prayers. Love, Tracy

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

March 24, 2008 5:30 PM

Hello and belated Happy Easter. The picture above is Katia's "Pink" Day. Lately she has really been into pink so each day is about picking out pink things to put together to wear. Very fun:)

This past weekend, a concern has also been the pink of her skin. We are continuing to work (very slowly) on weaning her cellcept. We keep talking about this weaning process although the weaning actually takes place only every month or so and then she stays at that level for quite some time. It takes a while to see how she will react and then we leave her at that level for a while. This weekend her skin and eyes have not done too well with the lowered dose which took place this last clinic visit BUT, no real big flare ups just quite uncomfortable mainly her skin and especially her eyes.

I really really miss seeing Katia's eyes, her full eyes. I tear up just thinking about that. You know we have gotten so used to seeing Katia squinting that it isn't until we look back at pictures that we realize she doesn't ever really open her eyes. It is almost like a kitten or puppy when they are first born. Some days, she opens them more so than others (very few) and I realize and tell her, "Wow, your eyes are kind of open!" The picture on the side of the page? We don't see those eyes. I miss those. I am the kind of person that really does try to focus on the positive a lot. If I didn't I just wouldn't be me.

My world has become much more than just our world and about Katia. Our world has become focused on so many others that we are happy to hear when people have positive tests results or are considered cured or their scans are clear and when things go bad or someone passes, things really feel like they come crashing down. Before Katia was diagnosed, the world seemed much bigger than it does now. But, really people are much more connected than we sometimes realize. We found that out when we were searching for Katia's marrow match. How a complete stranger could actually be a perfect match.

Anyway, there has just been a lot going on in the Caringbridge world, our world and it really does stir up a lot of emotions. This time 6 years ago, we were really trying to figure out what was causing Katia's right eye to be not just swelling but literally changing in formation. If you are new to her story (or haven't read it for a while), you can scroll to the top of her page and read, "Katia's Story" to see how her journey began.

I have visited a LOT of Caringbridge sites over the years and have learned so much from reading others' journaling. I have learned life can change in a moment for any of us.

You know the book about not sweating the small stuff? I have read it, well most of it but so many times that is much easier said than done. But what it really means is don't take life for granted. Don't take people for granted. Life certainly isn't a Hallmark card though is it?

As April approaches, actually April 15th (tax day) it will be 6 years since Katia was diagnosed.

As that day approaches, I think of the fact right now she is cancer free, eagerly learning to read and despite the fact she has ongoing chronic GVHD, she has a laugh that can make anyone smile, she loves to hug and cuddle and she has been granted miracle after miracle.

I asked her yesterday why she liked pink so much and she said because, "Pink is smart!"

That's my Katia:)

Love, Tracy

March 19, 2008 10:30 PM

Counts from 3/18/08

WBC 2.77 low
HGB 15.0 high
PLT 329
ANC 1300 low
IGG=543
FK506=10.1

DEXA SCAN RESULTS
(less than -2.5 is Osteoporosis)

Whole Body= -3.1
Lumbar Spine= -2.8
Left Hip= -3.0

Katia had clinic yesterday right after she had her DEXA Scan (bone density test done. The Bone Density Test results should be in over the next day or so now. Hopefully there is some improvements.

To understand the scoring for the bone density you can check out this DEXA SCAN page but basically a score less than -2.5 is osteoporosis.

FOR 2006 KATIA'S SCORES WERE;
WHOLE BODY: -2.3
LUMBAR SPINE: -2.5
LEFT HIP: -3.7

FOR JULY 2007
WHOLE BODY: -2.8
LUMBAR SPINE: -2.9
LEFT HIP: -3.4

Since then, Katia has remained on steroids which of course isn't good for her bones but the good thing is she is a bit more active (thanks to FOZZY!) so who knows, maybe that will help:)

We are eager to see. She has been taking Fosamax for over 2 years now. She eats plenty of calcium and has a very well balanced diet as well as vitamins. Please pray the numbers improve or at least don't get worse. Last year the hip number slightly improved but the other numbers worsened. Her hip is the worse area.

Let's see, how about some good news???

Katia is reading better! She is sounding out some bigger words:)

She is actually picking up some Dr. Seuss books and reading them by sounding out the words with very little help. She is beginning to take books off her bookshelf all on her own just to try out this reading stuff. She is finding it to be a good thing and not as much of a struggle:)

She is working more on a 1st grade level and moving away from that K-5 level she had seemed to be stuck on for such a long time. So, that is really a big step forward for her.

She is still having a lot of eye difficulties so the words have to be big but most of the books she owns have big words and pictures.

She has been cleaning through her room the last few days looking for some Gameboy games she can't find, they really seem to have disappeared (I think she totally lost them at clinic) and she found a purse she used to always keep little trinkets in when she would go to clinic. Inside, she found an old marble she just thought was the coolest thing and she used to treasure it so much when we were in the hospital all that time and then at the Ronald McDonald House. She was so happy to find that! I was surprised she remembered it but she did:)

Well, I will add the IGG and FK506 counts when I know them, probably tomorrow.

Please keep Emily L. in your prayers. She really really needs our prayers.

Love, Tracy

March 16, 2008 2:15 PM

So I have gotten a few emails asking, "How is Katia?" and I realized, I hadn't updated on that part of things for a bit... sorry. Katia is about the same really. We have figured out a schedule with the medicine though and baths that she stays much more comfortable which is good. Her GVH is playing a balancing act as we stopped weaning the medication and right now the thought is to maybe go back up on what we were trying to wean. Not sure yet.

On Tuesday she is scheduled for her DEXA scan to check her bone density. Last year her bone density had worsened so hopefully this year she hasn't worsened. She is more active now than she used to be (Thank you, FOZZY!) so maybe that is helping. We will see. Her main areas of osteoporosis is her neck, hips and spine.

Other than that, she is scheduled for her regular labs, Pentamindine and IVIG on that day. We were planning to have an OBGYN visit that day under sedation but I am not sure that was able to be set up.

On another note, I just did an update on Estephany's Page for those of you that have been asking how she is doing. I have been trying to catch up on a few things.

During the end of the year, we were quite involved with KSFand now we are really picking up momentum again. Not sure I spelled that correctly. If you haven't been by the KSF site lately, drop by when you get the chance and visit the different links to see what has been going on.

Also, I would like to ask prayers for Emily L.. She has really been fighting hard lately with different infections and just so many obstacles but Emily really is a strong girl and if you haven't dropped by her site lately, please do and leave her a message. Her Mom is reading her the messages. Emily and her family have really been there for many Caringbridge Families during tough times, including Katia and now Emily could use some Ladybug Love to help her pull through this tough time.

Thanks for dropping in and checking on Ms. Katia:)

Love, Tracy

March 12, 2008 5:55 PM

More pictures from "Fashion Funds the Cure" Fashion Show.

March 12, 2008 1:15 AM

Katia had a very nice time tonight at the Fashion Funds the Cure Event tonight for the Pediatric Cancer Foundation so I wanted to go ahead and post the pictures:)

Usually I take much longer so here they are.

She was nervous but did a great job!!

Lots of love (now I am off to bed)

Love, Tracy

Create a Free Slideshow

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

March 7, 2008 3:30 PM

Seems things are improving:)

Katia is feeling better for longer periods of time so that is a good sign. Still relying on the vaseline and codeine and sitz baths but those three things are keeping her more on the mend. During the night is where we run into a problem because she kind of needs something every 4 hours or so.

But, Katia is one tough cookie and she really amazes me!

She has her appetite back FULL FORCE. When she is awake, her mind is definitely on food. Her nausea is gone which is a good thing.

She is really looking forward to the modeling show and I am looking forward to that for her:)

Katia doesn't get out much so these things really do become highlights and I know everyone participating (including the volunteers and the Pediatric Cancer Foundation as well as everyone from Saks) really looks forward to this event!

There is a lot involved in putting these types of things together. When we do something with The Katia Solomon Foundation, it takes a lot of planning even if the event itself is a 2 hour event.

While we are there we will be remembering some dear girls that are not able to be there because they are inpatient, recently relapsed or have passed away. Last year, that was really going through my mind as each girl walked the runway and I was really trying to just soak in every moment. These girls, their parents and siblings and families are amazing and each one has such an amazing story and journey to share. It is truly humbling to know each of them if only for a moment to share this experience with them.

Love, Tracy (and Katia)
She is right here hanging on me waiting for food....

March 5, 2008 11:15 AM

Update from last night:

CLINIC WENT OKAY.

THE "AREA" APPEARS TO BE IMPROVING WITH THE VASELINE AND FUNGAL CREAM AS WELL AS THE SOAKING IN THE TUB. THE CODEINE HELPS AS WELL. ATIVAN IS HELPING HER REST RIGHT NOW. HER BLOOD PRESSURE IS TOTALLY BACK TO NORMAL. SHE LOST SOME WEIGHT.

WE DISCUSSED THE IDEA WE HAVE BEEN WEANING HER CELLCEPT WHICH MAY HAVE SOMETHING TO DO WITH THIS SO THAT MAY BE INCREASED. THERE IS GOING TO BE SOME DISCUSSION.

ANOTHER IDEA IS JUST LIKE SHE HAS SEVERE DRYNESS IN HER EYES, THIS CAN BE THE CASE HERE NOW AS WELL ALSO?
THAT TO IS GOING TO BE DISCUSSED WITH SOME OTHER DOCTORS.

ONE THING FOR SURE, KATIA DOESN'T GO BY THE BOOKS.

SHE IS STILL STAYING NAUSEATED SO ALTHOUGH SHE HAS A BIG BIG APPETITE (STEROIDS!) SHE EATS A LITTLE AT A TIME. HER CRAVING MAINLY IS KFC OR PIZZA. GOTTA LOVE STEROIDS. I REMEMBER THE DAYS OF MACARONI AND CHEESE, DONUTS AND RICE PILAF!

SHE STILL EATS PLENTY OF GOOD STUFF THOUGH BECAUSE SHE HAS A MOM AND DAD THAT BELIEVE IN VEGGIES AND REGULAR FOOD (POOR CHILD).

Add on from this morning:

Katia has a pretty reasonable night... A few times of getting up feeling bad which including a bath and soaking for about 45 minutes, some medicine and vaseline, squirming around trying to find the right sleeping position, getting up again, walking around, quite a few tears and then finally finding some rest. That last for about 30 minutes at a time but then she would get up and be able to go without the tub baths and just do the vaseline and squirming and walking around. With all of this, she is always apologizing and hugging and no matter how much you tell Katia you don't mind staying up with her and it is okay because that is what Mommies and Daddies do, she insist on it and giving you hugs and thank yous.

One good thing is her nausea seems better. The Zofran seems to be working again and her pain doesn't seem as intense. The first night I would have given it a 9 on the pain scale. The second night about a 7 on the pain scale. Now I would say a 6 on the pain scale. It is just pretty ongoing. I can look at her and see she is just wiped out but she still lovable and thankful when she can play with Fozzy or watch a movie and relax. Her appetite is still there. Her big thing is KFC Laptops or McDonalds Happy Meals. Last night, we were up in the middle of the night and she was soaking in the tub and out of nowhere she said, "Remember when I couldn't have McDonalds? THAT was BAD!" I guess in her way, that is consoling herself.

Thank you for checking in and for your prayers.

Love, Tracy

March 3, 2008 12:30 PM

What started out as such a nice day yesterday, as you can see from the picture at the top of the page, didn't end so well last night. We ended up at the ER around 11PM till around 4AM.

Around 8PM or so, Katia didn't seem herself but wasn't saying much just seemed ready to go to bed. Around 9PM, that is what she did. Then about 30 minutes later, she came and said she couldn't pee and after getting some details it seemed she had a urinary tract infection maybe. Since she is very immunosuppressed, we can't take any chances for any infection to have a chance to brew so I called her doctor who wanted her to come right in to the ER to have a urine culture and blood test so that is what we did.

We got there about 11. Things were getting progressively worse though and in my mind I was beginning to think this wasn't a UTI maybe, maybe a bladder infection but Katia was saying her back or belly didn't hurt.

So, the ER doesn't move too quick but they got the urine and blood tests sent off and around 2PM, everything came back negative?? By this time though, Katia was in BIG BIG pain! Crying, rocking back and forth, moaning and really in pain but making it really clear, she didn't want to be admitted. She also didn't want a "full physical exam". In other words, nobody looking at the "area" that was hurting.

By this time, it was after 3 or so and now all of us are confused since everything came back negative and her WBC count was low not high which doesn't seem to point to any infection? I asked Katia some pretty detailed questions of what was hurting, when, and how.

In the back of my mind, I always have GVHD but I also know new things can always pop up since she basically has no immune system. With her answers, I took a look at the "area" and pretty well got my answer. She has a very irritated vaginal area which the ER doctors think is fungal and I as well as her transplant doctors think might also have to do with GVHD. I can definitely understand why Katia is in as much pain as she is in.

They gave her a script for a fungal med and she has codeine. We are working on some other treatments. We got home around 5 AM and she has basically been in pain since then, a lot of pain. She took a bath which gave her some relief. She has finally fallen asleep around noon but she is moving around quite a bit even so.

She is also quite nauseated with all of this and although she needs to pee, she is scared to do so or can't?

GVH has been her main ongoing chronic issue and at the time, it is mainly on her hips, knees, butt, armpits, her eyelids, corneas, slightly on her finger tips and hands, nails, in her mouth and it wouldn't be suprising to be affecting this area as well. Overall it is seen on her arms, cheeks and on other parts of her body lightly as a reddish appearance. It used to be in other areas like her scalp and cause her hair to fall out, it was much worse in her mouth and on her lips.

She has always remained on steroids (Prednisone) and has tried other medications to fight the GVH and is currently weaning off Cellcept to go onto another treatment to work along with the Prednisone. It will be quite a blessing when the day comes that the right combination is found that will cure Katia's GVH.

Thank you for your prayers.

I will post an update later.

I am praying this doesn't end up with an admit but at the same time, I want Katia to feel better and not be in so much pain and get feeling better and have this to start healing as quickly as possible so whatever is best is what we will do.

Love, Tracy

March 1, 2008 11:25 AM

Counts from 2/29/08

WBC 3.52
HGB 15.2
PLT 376
Abs. Neut 2.0
Creatinine 0.26
IGG 711
FK506 8.3

Clinic went well yesterday. It was REALLY busy when we arrived.

With Katia being sick, I almost tried to delay it till Tuesday but we went ahead and went. They did cultures since she had a cold but amazingly, she (and I) seem to basically be over the cold today!!! Thank you for your prayers!! It is amazing how you can go from feeling soooo bad one day to waking up and feeling so much better the next and the great thing is, you really realize how much better you feel:) The moment I woke up, I was like, "Wow, my cold is gone!"

Katia is quite pink this morning with GVH on her arms especially and her hips and underarms are showing GVH but her mouth, fingers and chin look pretty okay. Remember how bad her mouth was this time last year. We are still weaning her Cellcept whiich is a very slow process. She has been quite itchy through this but doesn't complain much. Her face gets quite red and rashy looking at times but for the most part stays cleared up looking as well as does her lips. She looks like she has lipstick on all the time but her lips don't looked chapped at all. Her finger nails are brittle but aren't breaking and her finger tips are peeling some but not as bad as they were. All of that appears to show the weaning process is going at just the right speed, not too fast, not too slow.

She enjoys soaking in the tub when she gets really itchy in bubble bath with Aloe Vera.

She is going to participate in the upcoming Fashion Funds the Cure Fashion Show again with the Pediatric Cancer Foundation. We kind of held off with making that decision kind of due to seeing where she would be with treatment, her counts and how she is feeling. There have been a lot of days that a T-Shirt underclothes is all Katia is going to see putting on for the day. Last year her counts were actually better than this year as far as her immune system.

But, another thing we have to consider is the fact Katia really really enjoyed participating and for the most part she really is homebound most of the time other than clinic and trips to the park. She really doesn't complain about any of that as it has become everyday to her. I didn't bring up the Fashion Show to her until we made up our mind to let her participate. She got her doctor's okay so now she is very much looking forward to it:)

For more information Click Here to attend the event, or see pictures from last year's event or even video.

So, what else?

I was going through the guestbook and Sheila (from NY) asked about the rest of the family. So, let me summarize. I appreciate always prayers for Katia and our family. As you know we have always been a very close family and with Sharayah now off to college, that has been a big change for us. She is doing well though and enjoying college. It was quite a change but we have all adapted including Sharayah. I have to say we are thankful for the age of communication:)

Myron and I are doing well. I update quite a bit about my seizures lately as that has been the ongoing issue with us. But, the good thing is I have remained seizure free since January 9th still so that is good and something we hope will continue.

Tatiana's back issues are once again being looked into as we recently changed doctors so hopefully we can get a new sense of focus maybe with a different perspective. Sometimes by getting with a different doctor or group of doctors something maybe seen that wasn't seen before. She however remains Katia's best source of entertainment right along with Mr. Fozzy!!

I can't believe March is already here as it seems 2008 just arrived. Time really does seem to fly by. Soon it will be 6 years since Katia was diagnosed. This time 6 years ago, we were seeing doctor after doctor trying to figure out what was wrong with Katia's eye (you can see Katia's story at the top of the site if you don't know what I am talking about) and about this time, we knew something was really wrong. I still, back then, never imagined we would be dealing with cancer although I think I knew we would be dealing with something serious.

Katia had a strength, even as a 2 year old though that could be seen and even though she was scared when she would go to these different eye doctors, she was just a typical baby at home even though, on the outside we could see something was wrong and a lot of days she didn't feel good.

I have learned a lot from not just Katia but a lot of kids on this journey.

Not in these exact words but definitely along this line...

Live today, laugh today, love today.

Love, Tracy

February 27, 2008 1:00 PM

KATIA HAS A REALLY YUCKY COLD RIGHT NOW WHICH SHE RARELY GETS (AT LEAST SHE RARELY GETS THEM)

SHE IS PRETTY MISERABLE. NO FEVER THOUGH. SHE FEELS CRUMMY, SORE SORE THROAT MAINLY AND STUFFY. SHE SLEEPS FOR THE MOST PART.

THIS COLD HAS GONE THROUGH THE WHOLE HOUSE THIS PAST WEEK OR SO.

THE PRAYER IS KATIA CAN GET THROUGH THIS FEVER FREE, IT DOESN'T CONGEST HER AND SHE STOPS FEELING "YUCKY" SOON. SHE ALWAYS DRAWS PICTURES FOR ALL OF US TO MAKE US HAPPY SO I DREW HER A CARD TO START HER DAY OFF

WE HAVE CLINIC FRIDAY.

SHE IS MY SWEETIE!

THANKS FOR YOUR PRAYERS.

LOVE, TRACY

February 22, 2008 5:00 PM

This is an amazing Video Lecture. It was seen by millions of viewers on Oprah. I received it via email and it really struck a chord with me and I wanted to share this. It is 12 minutes long. It is very worth the 12 minutes. I got a cup of coffee, sat down and watched it which is something I don't normally do. Getting me to sit still for 12 minutes? This was something that God definitely wanted me to watch.

"Last Lecture" by: Randy Pausch

Love, Tracy

February 17, 2008 10:00 AM

Counts from 2/15

WBC 4.27
HGB 13.7
PLT 369
IGG ?
FK506 8.1

I will fill in those ? when I get the levels.

Clinic went okay. Katia hasn't been feeling too well lately so we drew some blood cultures to see if anything grows but as of yet, no phone calls (that is good). Maybe it is just a viral bug of some sort. She has been feeling pretty nauseated and puny and getting the chills. No fevers though. Her appetite is down but she has gained weight.

We went out to the park yesterday which she has been VERY eager to do. She had an "okay" time and took some cute pictures. I will try to post a couple today. It was a nice day. Once we got out there, she was ready to get back home though. For the most part, Katia is doing reasonably well but in many ways, she is worn out. She is sore a lot especially her hips and feet tire easily and her back. She has found soaking in the bath is a very very comfortable place to be:)

She is doing better with spending more time on her school work each day. Ms. Michelle still comes out two days per week but Katia does a lot more work in between. As far as moving ahead, I think she is learning to work with math better although she would say she doesn't like math. She is learning early addition. She has learned to use blocks to make addition problems like 3 2, 2 2, 2-2, etc. In reading, she is able to phonically sound out the words, still not there yet. She is also doing much better with her writing. She practices writing the sentences from her stories using the captial and lowercase letters as well as the puctuation marks. Katia works very hard with her school work. She keeps her school supplies and books in order and is a very very good student:)

I still find it so hard to believe my little baby is now 8!!!

I am very proud of Katia because I know it isn't easy on her having had to face so much over the last 6 years and it still going on but I am grateful to see that God has given her that inner strength and that little "spunk" to deal with things day to day. Not to say she always has a great attitude.... but Katia is my baby and I am very very proud of her:)

Love, Tracy

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

February 7, 2008 12:54

A DOG'S PURPOSE
(from a 6-year-old)
sent via email...

Being a veterinarian, I had been called to examine a ten-year-old Irish
Wolfhound named Belker. The dog's owners Ron, his wife, Lisa, and their
little boy, Shane, were all very attached to Belker, and they were hoping
for a miracle.

I examined Belker and found he was dying of cancer. I told the family we
couldn't do anything for Belker, and offered to perform the euthanasia
procedure for the old dog in their home.

As we made arrangements, Ron and Lisa told me they thought it would be good
for six-year-old Shane to observe the procedure.

They felt as though Shane might learn something from the experience.

The next day, I felt the familiar catch in my throat as Belker 's family
surrounded him. Shane seemed so calm, petting the old dog for the last
time, that I wondered if he understood wha t was going on. Within a few
minutes, Belker slipped peacefully away.

The little boy seemed to accept Belker's transition without any difficulty
or confusion. We sat together for a while after Belker's death, wondering
aloud about the sad fact that animal lives are shorter than human lives.
Shane, who had been listening quietly, piped up, "I know why."

Startled, we all turned to him. What came out of his mouth next stunned me.
I'd never heard a more comforting explanation.

He said, "People are born so that they can learn how to live a good life --
like loving everybody all the time and being nice, right?" The six-year-old
continued, "Well, dogs already know how to do that, so they don't have to
stay as long."

Remember, if a dog was the teacher you would learn things like:

When loved ones come home, always run to greet them.

Never pass up the opportunity to go for a joyride.

Allow the experience of fresh air and the wind in your face to be pure
ecstasy.

Take naps.

Stretch before rising.

Run, romp, and play daily.

Thrive on attention and let people touch you.

Avoid biting when a simple growl will do.

On warm days, stop to lie on your back on the grass.

On hot days, drink lots of water and lie under a shady tree.

When you're happy, dance around and wag your entire body.

Delight in the simple joy of a long walk.

Eat with gusto and enthusiasm. Stop when you have had enough.

Be loyal. Never pretend to be something you're not.

If what you want lies buried, dig until you find it.

When someone is having a bad day, be silent, sit close by and nuzzle them
gently.

Be always grateful for each new day.

That was sent to me via email so I just wanted to share it.

Love, Tracy

February 5, 2008 9:50 AM

So today, 4 years ago, this was the picture at All Children's Hospital, Katia getting a miracle, her 2nd chance at life due to the fact someone donated their newborn son's umbilical cord which was a 5/6 match to Katia.

When Katia relapsed in August 2003, we knew finding her marrow match would be next to impossible. But, with a lot of help from the hospital transplant cordinators, the community, and so many people we previously had not known who are now dear friends, in December, this match was found. Although it wasn't perfect, it was close enough to move forward with a match. At that time, it was found that Katia had a fungus in her lungs though which needed to first be dealt with or the transplant would make her too weak and hte fungus would take over.

Although it seemed hopeless, a lot of things had seemed that way and we had learned to focus on God and hope, we had learned her doctors did not give up and we had learned a lot of people, I mean a LOT of people were praying.

We also knew Katia was full of life and she had an extreme since of positive attitude. We were also very lucky to be so close to home because having Sharayah and Tatiana so close by and the fact Myron could bring them each day after school would lift Katia's spirits to a point of really giving her the boost she needed to get through another day.

When Katia relapsed on August 26, 2003, we didn't realize we would be returning to the hospital and not returning back home until 336 days but sometimes not knowing is better than knowing. But, we also knew that when we left home, there was a chance of Katia not returning home and that was a risk we were going to fight with all we had to overcome.

So, as we celebrate today, although Katia still battles rejecting the marrow, she is doing so from home, she is 8 years old, she is for the most part a happy 8 year old and I think she has a real sense of appreciation for life. She also has a lot of typical 8 year old ways. Hopefully someday soon, her body will accept the marrow and start making her immune system, hopefully her body will start making good cells, cancer will never return to her system and that part of her life will be behind her forever.

I woke up about 5:30 AM this morning and have been reading her journal history.

Doing so gives me such an appreciation (not that I wasn't there through it all) and I think of all of those just starting the journey or having loved ones facing relapse and transplant.

During Katia's time of relapse, the Katia Solomon Foundation was started which focuses not only on other families but also works alongside other establised organizations such as the National Marrow Donor Program and Florida Blood Serives. We receive referrals to help other families via hospitals and doctors through counseling, translation, fiancial help and other services. If you haven't visited KSF's site, please do so. We learned so much when we were faced with Katia's transplant. It isn't something we had planned for just like Katia's diagnosis with leukemia wasn't something we had planned for. It is something like just getting a hit with a brick suddenly on a sunny day. We realized any family can suddenly be affected by a loved one being diagnosed by cancer at any given time. We were one of those families that used to watch the different hospital telethons but we never imagined we would be participating speakers in one of those sharing our child's story.

So, as we celebrate today, we urge everyone reading this to please participate by visiting the KSF site, follow the different links at the top site, learn how you can become a registered marrow donor, blood donor, donate umbilical cord like the one that gave Katia a 2nd chance at life on February 5, 2004.

Thank you for following Katia's journey.

How did you first come to Katia's site? We love to hear from you:)

Love, Tracy

February 3, 2008 9 AM

WBC 2.60
HGB 14.9
PLT 376
ANC 1600

Katia had clinic Friday for her EKG/ECHO, Pentaminidine infusion and IVIG infusion. All went well, long day but went well:)

Picking up prescriptions didn't go so well but hopefully Monday that can all get worked out with some phone calls. She is out of a few but they gave her what she needs to get through the weekend for the most part.

Superbowl is today!! We are happy about that, Katia is more happy football season is coming to an end. She likes the game once it starts though. She likes the chips:)

If you a moment, please stop by the Katia Solomon Foundation Site as there have been quite a few things that have gone on over the end of 2007. I urge you to bookmark the site and drop by every so often and always, if you or someone you know aren't a registered marrow donor or a regular blood/blood product donor, please consider doing so. This is a way of saving lives. In two days Katia will be 4 years post-transplant!! Can you believe it?? FOUR years already! She still has yet to come up with her own immune system but someday she will. She is still totally reliant on the IVIG infusion every 4 to 6 weeks. So, until she starts making her own, we aren't sure what type of cells her body will make. But, we have had 4 years of many amazing milestones with Katia since that day of transplant. She is working very hard with Ms. Michelle and me on her school work, she has lost those 2 front teeth and one of her permanent teeth is now popping through up top. She is much more active around the house. Remember when she came home from transplant she couldn't walk. Now, she is pretty well on Fozzy's tail all over the house. She still is mostly locked down to the house and clinic. She has gotten to Disney and Sea World (gotta love the rainy day at SeaWorld). We didn't make it back to SeaWorld. We have gotten out to the park and Katia has gotten much more active at the park and learned to swing on her own. She is working on riding a bike-with training wheels but by herself.

Her GVHD is flaring but mainly due to the fact we are taking on her medications slowly away so we can hopefully add in the one that will be the answer to getting her GVHD under much better control all the way around. Her biggest issue is still those eyes. That is still the biggest issue that bothers her the most.

Katia biggest blessing? Her attitude. Obviously God gave her a great ability to keep that smile and positive attitude no matter what advesity she faces. Not that she is always smiling because He also gave her a really "spicey" personality to deal with all of this. We get to deal with a lot of "spice". Well her doctors get to deal with a lot of her "spice" as well. So does Ms. Michelle and quite a few other people who "cross her path" often enough like her sisters and even Fozzy.

Maybe I can catch some of that "spice" in pictures.

Katia has basically been going through all of this since January 2002 when the eye tumor was first starting to show (see the story at the top of her site) so 6 years now. So, most of her life. I guess she has a lot of reason but a lot of understanding. She watches documentaries and shows on TV and she is full of compassion for others. Her dream right now is to be a veternarian. She wants Fozzy to be her first patient. She is full of goals, like many of these kids facing cancer and other life threatenting diseases.

Katia also says thankyou for all of the cards she received and gifts for her birthday. She has gone through, organized and handled each card many many times! We read them to her over and over so we say thank you also. That was very kind. A lot of them are from kids and they are so sweet:)

It made me think about getting blank cards (totally blank) for Katia to make for others. She likes to make things but she can't really do much with scissors (how do you spell that).

Tatiana is doing homeschooling for the remainder of this school year and possibly next year. It is nice and something we have thought of doing for a while. She is doing well with it and it is actually helping her and Katia for them to both be here to school. Both of them are excelling.

Also, if you go by the KSF site, you can find out much more detailed information on what exactly it is we do with the funds we raise by visiting the link, Families Helped.

There is a current fund raiser going on which is mentioned on that link as well.

Have a good day and enjoy the Superbowl if you are a Superbowl person. Today might be one of those "SPICEY DAYS" for Ms. Katia:)

Lots of love, Tracy

Please keep Emily L. in your prayers.

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

February 1, 2008 8:30 AM

We are off for an ECHO/EKG, IVIG infusion and Pentamindine.

Long day but needed.

Hope you each have a good day. This will be FiFi's first day to clinic:)

Love, Tracy

PS One of Katia's new teeth are peeping through her gums.

January 26, 2008 12:50 PM

Happy 8th Birthday Katia!!!!

Katia, you are such a sweet baby and we are so happy to have you in our lives!

I want to thank so many of you that have followed Katia for so long. You are such a blessing. Thankyou for your messages throughout the years and encouragment and prayers.

Quite a few are new to Katia's journey and hopefully you have been touched by her journey as we have been touched by your willingness to share your time and check on her progress. Thank you.

Katia is tickled PINK today as you can see! Pink seems to be the color of the day.

The picture above was taken last night. Hopefully we can get some good pictures throughout today although they may be with sunglasses, maybe not. We will see.

She is very excited and woke up in a fabulous mood! The doggies name in the picture above in Fifi:) SHE, (I keep saying "He" was made at Build-a-Bear and was a gift to her. They have a close bond! Fifi's birthday was yesterday:)

Today, I started out by reading the brief (although it has gotten longer than "brief" history of Katia's journey above. She really is a miracle and we are so blessed to be celebrating today. In just 10 more days we will be celebrating her 4 year post-transplant anniversary. Miracle after miracle!

Here is a pic of Katia being Katia...

This is from Katia... She is right here watching me so...

THANK YOU!!! THANK YOU!!!! THANK YOU!!!!!

I FEEL SO LOVED!!!

I GET CAKE TODAY!

I AM 8 AND I AM MISSING TWO TEETH BUT THERE IS ONE COMING BACK IN.

MY MOMMY IS ON THE COMPUTER AND SHE SAID I COULD TALK TO YOU. WELL I CAN TALK AND SHE WOULD SAY WHAT I AM SAYING.

I GOT A NEW POODLE. NOT A REAL DOG BUT ONE IN A STROLLER. HE IS STUFFED WITH FUZZY STUFF.

THERE IS A PICTURE WITH ME NEXT TO HIS FACE.

THANK YOU FOR TELLING ME HAPPY BIRTHDAY SO MUCH.

KATIA (SMILE HERE)

Lots of love, Tracy:)

January 21, 2008 4:50 PM

5 more days and counting till Katia's 8th birthday:)

Normally we are a little more set on what Katia is into for her birthday cake but this year isn't so clear. Although she is going to be 8, she isn't your typical 8 year old.

With all she has gone through AND the fact she has 2 older sisters, she is not "typical" at all.

But then sometimes she definitely "acts her age."

Today she got up and put on her shirt that says, "It isn't easy being me." So, I asked her, "Who do you think it is easy being?" You know who she said? Fozzy!

So, I told her, it can't be easy being a dog. They can't talk. They have to pretty well get it across when they are hungry, need to go pee, get what they want, etc. Anyway, she stuck to the fact, they have it made. I think Oprah's dogs may "have it made".

Katia has her days that she is like a toddler, then she is like a teenager and can suddenly be like a 30 year old and right back to being like a toddler. It is hard to tell. Since she has been around adults and teenagers so much, she blends well with us.

She is still very very much into Disney movies, playing with toddler toys, playing Playstation and dressing up as well though. She always has some little toy in her hand and a pretty little purse of some sort. She gets upset that she is still wearing 4T clothes (usually bigger shirts) but they look like baby clothes. She is 97 cm tall and weighs 18.2kg. That is 3'2" and 40 pounds. There is a lot packed into her size though:)

At the time of diagnosis (age 2 1/2), she was 2'10" and 28 pounds, 5 1/2 years ago. So, she has grown some:) 4" and 12 pounds.

Most of her stunted growth is due to some treatments prior to her bone marrow transplant but mainly to steroids which she will still be on to fight the GVHD that continues. Her eyes continue to be the main thing affected by the GVHD, especially her corneas are very sensitive some days they seem better and other days are quite miserable. Her hips are still quite bad. Her skin has seemed to be less red and itchy. Her fingers and mouth have shown improvement. Her fingernails have mostly remained the same but seem better than this time last year.

We are working on weaning her off one of her medications before we can start another treatment planned treatment for the GVHD.

The good thing is we are coming up to her 4 year post transplant anniversary on February 5th:)

She remains cancer free. She is happy. She continues her Homebound Schooling. She is still basically in a K-5/1st Grade level but in some ways she is progressing.

We look at Katia as our little miracle each day. We are grateful for so many things she has overcome and continues to overcome.

As she approaches this birthday, she is excited and we are excited for her:)

Lots of love, Tracy

***********

January 16, 2008 8:30 PM

Soon to be 8 years old:)

Counting down the days!!!

Turning 8 in 2008!!!!

Love, Katia:)

January 11, 2008

Just wanted to share something with you:)

A lot has changed since that picture posted from Christmas at the top of the page.

Love, Tracy

January 8, 2008

Finally an update of some sort:)

School is finally back in session so I should update. Katia is actually in class right now with Ms. Michelle while I do this update.

She was VERY excited to start classes again!!

Tatiana was thrilled to be back to school as well and Sharayah left back to college on Sunday.

Katia is off from clinic this week. She is actually going through a pretty yucky cold this week so she isn't too happy but she is handling it pretty well.

They took a throat and nose culture last week at clinic which hasn't grown anything (sounds nasty) so it is just something viral going on which should pass.

We are still weaning her Cellcept and staying at 12mg a Prednisone per day along with the rest of her daily meds.

She isn't due to go back until next Friday for her Pentamindine and to check her IGG levels and regular labs.

Florida has had some chilly days (at least for us Floridians) but today is nice and sunny outside.

I finally uploaded a couple of Christmas pictures and a picture of Fozzy on his 1st birthday (Christmas Day).

Hope each of you had a nice Christmas a New Year.

Lots of love, Tracy

January 1, 2008 12:27 AM

HAPPY NEW YEAR!!!

WE ARE 27 MINUTES INTO THE NEW YEAR:)

I have been meaning to update all day but what better time than the present? Now I can officially say, "Happy New Year".

There are a lot of fireworks going on around here so I couldn't be sleeping anyway.

With 2008 being here and Katia being a millenium baby, it means she will soon turn 8. It is easy to keep up with her age. She barely stayed awake to bring in the New Year but she managed and fell asleep about 15 minutes after.

Since the start of her site, we have had some great people sign the guestbook and show such great compassion and care and offer prayers and support and it is amazing how many still are stopping by along with so many new people. I read the guestbook and am truly amazed.

Remember when Katia really believed people lived in the computer? Now, she understands people throughout the states and world sign onto her page from their computers just like we sign onto other pages from our computer. I think it is amazing that she has gone from 2 years old to nearly 8 years old over the years over the course of this site so far.

This site has served as not only a way of sharing Katia's story and keeping friends and families updated but also a way of giving information to others that were going through similar treatments, patients and families being newly diagnosed and also a type of journal that someday Katia can look back on. For me, it has been a great way of expression I guess. I don't really know how else to put it. I enjoy writing and when Katia was originally diagnosed, I looked for resources of information and the best information that helped me was some Caringbridge sites that I found that I could read other Moms and Dads words expressing their own feelings. So 7 months into Katia's treatment, I decided to start this page. I wish I had earlier.

Now it is 2008. My goal for this year, my hope. Not just for Katia but for many people and families is, "2008 is going to be GREAT!" Just something, some situation, something big or something small to improve. I know things can't just happen on their own all the time so maybe it is something we have to look at that we can do to make that improvement or help it along or maybe it is something that is going to happen on its own?

2007 has had its blessings though. Katia is here. She is stable in her treatments. Her counts have remained relatively stable. Sharayah started college which is something she has worked hard toward since 6th grade.

In 2008, our hope is that we can get Katia's GVHD under better control. Get relief for her hips and eyes especially (GVHD related). Get her immune system better functioning. Find a way to wean her from steroids.

We are very thankful to continue to work with an awesome hospital, All Children's Hospital and a great team of Doctors there and at Bascom Palmer Eye Institute as well as Katia's fantastic HomeBound teacher that she has had the last 3 years.

So, with that all said (typed), I wish each of you a very happy, healthy, safe and GREAT new year. Thank you for following Katia's journey whether it be since the beginning, the middle or just recently. If you are new, you can visit www.ladybugkatia.com to see more of what we do.

Lots of love, Tracy

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