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Thursday, March 5, 2009 8:00 PM CST

I have some sad news to report. Our 4th child a baby boy named Trystan Kai appears to have HLH as well. He was born 25th Feb 09 10.2 lbs 21 3/4. He hasn't come home since his birth due to low platelet counts. He has needed platelets at least twice a day since birth. On Monday they placed a broviac to draw bloods and infuse platelets. We are hoping to bring him home tomorrow. They have started giving him steroids to shrink his liver and spleen and slow down the need for platelets. It appears to have worked cuz he has gone nearly 2 days with out a transfusion.

Tomorrow he will receive his first dose of Chemo. I know you all will pray for him that he comes home after transplant. We are going to take him to Cin. Ohio like Kharisma had. The doctors haven't officialy labeled it as HLH we are still waiting on blood results sent to Cin at birth that could take another wk. We just want to stay ahead of the disease.

Over all he is doing great wouldn't know he was sick to look at him. When Gary gets a chance I will have him update pics so you all can see my latest bundle of joy. I would but you see how the photos turn out when I do it.

Keep us all in your prayers that this one goes as well as Kharismas did. Thank you.

Sunday, September 28, 2008 11:23 AM CDT

Kharisma is now in Kindergarten started Sep 2, 08. She loves being a big girl and going to a big kid school. It is Doris Miller Elementary just mins from the house. I get to drop her off in the mornings and either Gary or my mom pick her up. I need to find her an after school program cuz she has just too much energy. Right now my mom takes her to the park for a few hours and she plays with who ever is there. She has such an out going personality.

She has lost her first 2 teeth the right way with new ones coming in. Tooth fairy over paid but she deposited it in her bank account. She actually pulled the first one out herself with some convencing from her father. The second one grandma had to put it the sneaky way. Kharisma didn't mind she was too excited to see what the tooth fairy would give her. With her first tooth she woke up at 5am so excited to see what she got. she came running into the bedroom turned on my light showing me the money. I was half a sleep and told I would look later. Took her awhile to fall asleep again.

For those of you who didn't know after Logan passed I brought Kharisma to bed with us. Well finally she is sleeping in her own room in her own bed. Now she wants a big girl princess bed. She doesn't like seeing the baby picture on her mattress.

She is cooking breakfast, well helping us cook, it helps motivate her to eat breakfast foods. Yesterday she made french toast. All I did was cook it she did everything else.

She is so smart the other day at the park these two girls where playing on their electic cars banging into each other. Kharisma made a comment that they where not taking care of their stuff and didn't deserve it. She can talk like such an adult at times.

For new news with the family. I am pregnant about 4 months now. On Oct 15 I find out the sex of the baby. This is a miracle cuz I got my tubes tied after having Logan and 4 years later I am pregnant again. Don't know if this one will be sick or healthy until it happens or doesn't. I don't believe in abortion so I am just happy to be welcoming the newest arrival to the family. The baby is due March 4 but I may need a C-section so it could be early.

We are all excited and scared but trying not to think of what could happen and focus on what is happening. Kharisma wants a sister, Gary wants a boy and I just want it healthy. So far everything is fine although for me this is the toughest pregnancy. I have had morning sickness just not vomiting. Easier for some hard for me never got morning sickness with the others we think that could be a good sign.

This sunday Oct 5 we are going to the 8th annual Histio walk for a cure. Kharisma enjoys the walk and playing the games. If anyone would like to donate on behalf of Kharisma go to Histio.org there should be a link to make a donation.

Take care everyone and please pray for this little one that we might finally have a healthy baby.

Saturday, March 22, 2008 10:35 AM CDT

Don't know if anyone checks this anymore. I have been slacking in my duties I know.

Kharisma is doing perfect she eats like crazy thanks to a visit with Nana and Papa. She staied there for 2 months and came back an eating machine. I called Choc and they figure they don't need to see her again. Finally she can live a regular life without see specialists.

Okay now to more recent info. We went to Disneyland Wed March 19 and had a blast. Adrienne had an extra ticket and invited us to join her. We had breakfast with the princesses and Kharisma got her picture taken with them all. I am talking Cinderella, Snow White, Belle, Arial and Princess Aurora. She wore her pink princess dress and Princesses Aurora asked her if she was her twin. I will put that photo on the site I hope.

We stayed for almost 12 hrs and saw the parade. In the parade was Lighting McQueen she waved and said hello to him. Other shows we saw were Aladdin(kinda scary), Disney playhouse and tried to see bugs life but that was way scary. It was a great time the only downside is now she knows what Disneyland is!!!!!

She has a birthday party to attend today she is a very busy girl.

When her daddy comes home she will, in July, visit her Nana and Papa again. We might make this an every summer thing we will see.

Okay I have to go wake the Princess up.

Take care and God bless I hope all is going well with you all.

Sunday, November 25, 2007 9:11 PM CST

Okay hello everyone.

Kharisma is doing so well. Thanks to the visit with Nana and Papa she eats all the time. She is not getting fat but she does eat and knows she has to taste everything before deciding if she likes it. THANK YOU MOM AND DAD.

She kept them busy with train rides, tea parties and bug catching. They took a train ride up to Boston cuz she wanted to ride a train plus she got to see the Boston aquarium. She had so much fun she didn't want to leave and is ready to go back for another visit, just not as long.

We will see if next time Daddy can fly her there so he two can visit his parents and see his old house. That won't be till the summer.

She has just 6 more months of preschool left and will be going to the school I now teach at. It will be great go to and from work with her I just hope she can handle a full day of school. She is so bright and social sometimes I worry a little too social. Already boy crazy and talks all the time about 2 boys she REALY likes. The other day she kept saying she was going to marry one of them.

When she is a teenager she will be home schooled. Just joking!!!

She is very much into princesses so we are slowly doing her room in Princessees. She has hit the stage where she asks for everything she sees on TV. We are teacher to ask santa for the things cuz we are so close to X-mas.

I have updated the photos and site hope you like the new pics.

Saturday, July 14, 2007 10:32 PM CDT

Hello everyone. Kharisma is with her Nana and Papa in Maine I dropped her off on July 1st. Staied a few days myself to take in that clean, calm Maine air.

It has been doing her wonders. She went there weighing 31 lbs and in just 2 weeks gained 2.5 lbs. My wish is she comes back and I don't ruin all the progress she is making. She is not just putting on the pounds but learing to swim. Her Nana is teaching her and she loves it. She always did love the water the only problem is she has yet to enjoy her head under water.

She will be in Manie till the end of August. Linda Austin is going to visit Maine and fly my baby girl home. She is having a great fun filled summer before starting school again. I don't know whos gonna where who out first.

I will get pictures of her visit and place them on the website when I do.

Okay that is it hope everyone is well.

Sunday, May 6, 2007 11:33 AM CDT

Soon Kharisma will be off to spend time with her Nana and Papa in Maine. She will be up there for about 2mths. We figure that will be fun for her to visit and a good distraction while Gary is gone.

I thought I would try and teach Kharisma to speak Polish. I am not fluant in Polish but I bought a computer cd to teach us both. I just suddenly wanted to connect with my Polish side. Today we are going to Balboa Park to the House of Poland to try some authentic food. I figure it will pave the way for other languages she wishes to pick up.

She is doing great in school. She loves school so much everyday she asks if she can go to school.

Take care and HAPPY MOTHERS DAY!!!

Saturday, April 7, 2007 11:45 AM CDT

Kharisma is doing wonderful. She started school March 5 and goes 3 days a week from 830-noon. She loves school and would like to go everyday if she could. School lets out June 15 and doesn't start again till September. Then I am going to put her in for 5 half days. I am slowly working her up to full days when she starts Kindergarten. That won't be till September of next year.

As for the feeding issue she is a little under weight and has to fatten up some. She weights 31 lbs and they want her just slightly heavier. I have 2 months to pack on the pounds. The nutritionest said she doesn't even care if its very healthy we will worry about that when she is fatter. It seems she doesn't take in enough calories.

Gary is out to see on the USS Nimitz he left April 2 and won't be back for at least 6mths. Don't know where he is going but pray he makes it home safe. Here is his ships address if you would like to send him a care package.

CTT1(SW/IUSS) Gary L. Hargraves
OPS/OS
USS Nimitz (CVN 68)
FPO AP 96620-2820

He would appreciate even just a card or letter saying hello. Talking to me all the time gets boring. He is doing good and already misses us. I have been trying to keep busy as to not feel so lonely. Of course with Kharisma by myside feeling lonely is hard to do she has me running around playing with her. She misses her daddy and when I get dressed for work she asks if I can stay just for a little while longer.

In July she will be going to her Nana and Papa's house for 6 weeks to Maine. It will be a nice break for her and a needed distraction.

HAPPY EASTER TO ALL!!!!

Her Nana and Papa came for visit be for Gary left and Kharisma was such a Papa's girl this visit. Every morning I was asked if they where coming over. She wanted to fly back to Maine with them but I said no cuz she is still in school.

Here soon I think I will be ending her this site. I just don't get to it that often. This entry will be up for at least a month so no rush.

Tuesday, December 5, 2006 7:04 PM CST

Okay an update on my little Angle/Devil. She is doing alright with out her button the only downside is she is down to 33lbs. Everyone says her pickiness is a normal 3-4 yr old thing so I am not worring. She does ask for food and tell us she is hungry.

I will talk to the docs tomorrow and see what they think.

We have decided to do her room in Princess al though after seeing the movie, "Cars" she might like that better. She quotes the movie and watched it like 10 nights in a row.

We have new pics so take a look at my firefighter.

Tuesday, October 31, 2006 10:13 PM CST

THE BUTTON IS OUT!!!!!!!!!!!!!!!!!

We got the button removed on thursday and is all healed and looks great. Her eating is going alright not really sure my mom does most of the feedings. She thinks she eats like a regular 3 yr old. It will take a while for me to get used to her eating.

In a few weeks we will go back for a feeding team re-evaluation. We still go up each week although we have had to miss a few weeks cuz they have a new inpatient. They don't think her eating is food now but behavioral. We are working with her on that.

New pics not for the squemish.

Wednesday, September 13, 2006 3:16 AM CDT

Okay we are in our 4th week with out using the button. Each meal is a struggle but I hear a lot of what she does is normal for a 3 yr old. Some meals are easy and she sits down and eats no problem. Then you get the meals where you could bring in something she has begged for and she still won't eat to get it.

She went to endo yesterday and she is 39cm tall and 36 lbs. She is doing well in the weight area. Hopefully if all continues to go this well we should be taking the button out come november.

It looks like all your Prayers and Support paid off. THANK YOU ALL SO VERY MUCH!!!!!

We still go up to CHOC everyweek for therapy. Gary is taking her tomorrow and then it will be me after that. His shop won't let him take any time off in Oct.

Its nice not having to hook her up or do anything, really, to the button.

Okay well its way early in the moring and I am very tired. Thank you all again for checking up on my little Angel.

Monday, August 14, 2006 9:55 AM CDT

I am leaving soon to do my 2 weeks with Kharisma and Gary will be home so I thought I should update before going.

She has put on 1 1/2 lbs in just 1 week and have decided she is doing sooo well that they have stopped her feeds as of last night. We shall see if the weight gain continues. They therapists think she is doing wonderful. She DRINKS the milk that we where putting in her button. She drinks at least 14oz a day of her milk.

We are very excited and positive that this will mean the end of the BUTTON.

Keep us in your prayers.

Love you all very much,

Thursday, August 10, 2006 0:27 AM CDT

Okay sorry about the overly large pictures.

She is at CHOC right now learning to eat. She went up there monday afternoon. She has a very stricked schedule as follows:

730am wake up
8am Breakfast with therapist
10am Playroom
noon lunch w/ therapist
1 quiet time
3 snack w/ therapist
4 quiet time
6 dinner w/ daddy
730 get ready for bed
8 start tube feeds
9 go to bed

For the first week it is mostly the therapist working with her. The second week it gets slowly passed to parent and by the third week the therapist just observes. She is not offered water anymore cuz they want her drinking something with caloris. She is drinking the food we put in her button its a milk substance.

She is doing alright my mom is going tomorrow to help Gary out cuz she misses her mommy. I will go up there for the second two weeks on monday. We hope come aug 25 when it is time discharge that she is eating 90% of her calories.

A reporter will be interviewing us and following her journey thru this then air it on PBS. As soon as we know the air time I will let you all know. Plus I think we should be getting a copy of the whole thing.

Please pray for her to finally start eating like a normal child. 6 months from now we maybe able to get it taken out.
YEAH!!!!!!!!!

Tuesday, June 13, 2006 10:47 PM CDT

Well we have been battling our insurance company to let her go to CHOC. It has looked like we where going to lose the battle. They had denied a few requests but finally something has made them reconcider. I don't know what but having them look again and think it over again is a good think. Pray they make the right decision this time.

If they approve her to go she is scheduled to go Aug. 7. Again PRAY for the right decision.

Right now we have started feeding by pump over 8 hrs to get all the calories she needs to grow. We let her hunger drive her to eat all day. Unfortunetly that has helped us only to see how much she DOESN'T eat in a day. She doesn't get hungry until 3pm so until then she just doesn't eat.

We haven't had OT in nearly a month waiting for that to get approved.

Went to see endo and found out that Kharisma hasn't grown nor put on any weight since Dec. She is still just under 3 feet tall and about 30 lbs. Other then the eating thing she is good. Okay thats not 100% true she is no longer potty trained we are back in diapers ALL the time. I think it is all the stress of everything catching up with her.

Went home to bring my mother back to live with us while there Kharisma came down with 104 fevers. My neice caught Broncitus and we think thats what she had as well. The fevers only lasted 2 days we controled it with motrin. During the fevers she was still acting herself. Took her to the doctors but they just said it was a virus and she would be fine.

I posted new pics so take a look before you leave.

Wednesday, April 5, 2006 6:18 PM CDT

I know just the other day I said we where going to CHOC soon but turns out Tri-west has denied our claim. There doctors don't see enough justification for her doing an inpatient feeding program. I just found this out 10 mins ago and made some calls but of course with it being so late I won't here anything til late tomorrow. I would say more but I am VERY upset with Tri-west. How long do they want us to have to work to get her to eat?

Lets just all pray they get there heads out of there ###'# and approve the second request I know will be placed.

Tuesday, April 4, 2006 8:40 PM CDT

Today Kharisma got accessed for the last time. Yes I said FOR THE LAST TIME. On Monday we are having her porta cath removed. She no longer needs it and after having to have her accessed before going to my grandma's funeral I decided enough was enough. She is doing wonderful and soon I won't even have her site up. Everyone is welcome to email us and check up on her. That won't be for at least a year we still have to get the feeding tube out.

Speeking of which all we are is waiting on authorization from Tri-west. She is number one on the list it should be real soon.

Sometimes I think she is so much smarter then she lets on. Like today on the elevator as we going down she was like number 3 thats our stop. She saw the number 3 on the digital read out. This maybe norm for her age but the first time I ever heard her recognize the number 3. Last night she rolled her window down on the truck and we told her its too cold to roll it back up. She responds with but I have my sweater on. How cute is that!!!!

I will let you all know how the surgery goes but it should go smoothly.

Friday, March 24, 2006 11:18 AM CST

We are back from our trip to see my grandma. Unfortunetly we got their 20 mins too late. She passed away before we could see her. I did talk to her on the phone so I got to tell her I love her and missed her. She was 92 years old and had another major stroke that paralized her left side.

Now my mom needs to sell the house and come live with us. Then I can work full time with no worries on a sitter. She says she will come out sometime in May I only hope she does. She seems said to leave the house she grew up in but that house is old and falling apart. It will be nice to have some family with me.

During the trip Kharisma ate sooooo much. She discovered fish, chips ahoy cookies, Nerds(the candy) and chicken noodle soup. Even without the food stimulant she was eating.

Now as for CHOC all we are waiting on is authorization to go. She is number ONE on the list. Here in a week or two we will be leaving for that. I feel good about this I think ever since we started going to them her eating has improved. Granted she has lost weight from not eating enough but she IS EATING. My baby girl went from almost 35 lbs to 30 lbs.

She asks for food all day long. Last night we where at the mall and she wanted a hot dog. Normally I would say no cuz she wouldn't eat it but last night I said okay. She ate nearly a fourth of the quarter pound hot dog.

More good news we got the tighters back and she is off the amoxil. She can go to a mini day care when we are done with feeding issue. Now she is ONLY on the food stimulant. YEAH!!!!!!!!!!!!!!!!!!

She is doing VERY well.

Friday, February 24, 2006 12:58 AM CST

This is the second time I am typing this cuz I pushed the wrong button and my 3 paragraph report vanished.

So lets see what all I said. I will be going home with Kharisma on March 6 my(Sonia) grandma is very ill and they are not sure she will make it. We will be there for 2 weeks visiting family. Most them haven't seen Kharisma since she was learing to crawl. My sister Linda has never met her. It is a trip I have needed to take for some time. Sad how it took life or death to bring me to drop everything to do it.

Kharisma might be going to CHOC as soon as end of March or April. That is months sooner then I thought. she has picked up her eating. Eating on a good day 2 tblespoons not much for most 3 year olds but lots for mine. She will ask for food or to be fed thru her button. They think she is showing signs of readiness. The only thing that would hold her back is the hospital might be full of sick kids and we don't want to get Kharisma sick. We are sooooo looking forward to this experience. It is getting hard to take her to a restuarant and say nothing for her but a glass of ice water. They always give us the strangest looks.

The other day after church a gentlemen, who works for the church, offered her some food and I declined. He looked at me like I didn't trust him. I know I should say yes and see what she does but too many times I have had to eat it or throw it away. When we go to starbucks with a friend she always want milk cuz my friends little girls gets it. I spend $2 on milk she barely touchs. That may sound wrong of me to look at like that but try going thru this for 3 years. She crys for fries at McDonalds we say okay buy the fries and she doesn't eat nor taste one.

Anywho never I won't go on and on about the negative. Just one more thing she is not feeling well right now. Started Wednesday with vomiting after each feeding and now she boughts of watery stools once a day. We still have no fever though. If she is still sick come monday I will make an appointment to see the peds doctor. For now she just sleeps all day and tosses and turns all night.

I have also updated the photos so take a look.

Thursday, February 2, 2006 6:32 PM CST

She is just a happy, healthy 3 year old girl. We had to increase her food stimulant cuz she dropped off with her eating. That seems to have worked but she still eats once a day. On the other hand she does ask for food all day long. Lots of different food all day LONG. One minute she wants a hot dog(which she cries for but doesn't eat) then she wants popcorn. In one day she will ask for 6 different things and eat barely any of it but it is an improvement. We still won't get her into the clinic till at least June of this year. Its not a miracle place but she should be eating more by mouth then tube. You know she has actually started asking to be fed through the tube. She is starting to feel hungry but when I offer her food by mouth instead she won't eat. She may not fully be off that feed tube for a year or so after the clinic visit.

She is sooooo bossy and demanding. I know its from how I have raised her and I know I let her get away with more then she should. After lossing two kids can you blame me. Gary is more of the rule stickler. I am starting to get better at not letting her get away with everything.

I will soon start watching my neighbors, neighbors boy Aden. Kharisma will settle down more cuz she has a playmate. I was going to sign her up for Tiny Tot before I agreed to watch Aden. Thats where she would go for a few hours twice a week and do crafts and stuff. Its like a preschool.

I must go the kids are getting restless.

Friday, January 6, 2006 4:18 PM CST

It finally happened just before Christmas she is POTTY TRAINED. I thought it would never happen but one day I said she will stay in panties all day. I just packed extra panties and pants. After wearing her panties all day she didn't want to wear a diaper to bed so we said bye-bye dieapers. I gave away the last of my diapers to my neighbor. We have had just a few accidents due to her playing with other kids. As soon as she did pee she would tell me. She is such a big girl with LOTS of TUDE. When she wants popcorn its always RIGHT NOW.

I am going to make a dental appointment to have her teeth cleaned while she sleeps. They got so stained from meds she was on. I was just going to let her teeth fall out and be replaced with her new white teeth but thought she deserves to have white teeth now.

All is well with her. She is a healthy happy 3 year old. Thats it for now I will let you know more.

THANK YOU ALL FOR YOUR CONTINUED PRAYERS AND SUPPORT. Its wonderful to see all the people thinking of us.

Saturday, December 24, 2005 6:16 PM CST

My how time flies. We had no puter for a few days which forced us to buy this much nicer model. It is a sacrifice but you gotta do what you gotta do.

She got her picture taken with Santa today not a moment too late. I am simply going to have to start memory books for her. With me that means nothing too fancy or large. Just something to save the years as they pass.

This year she has REALLY grown. She talks up a storm. Shows more attitude then she needs but who can blame her she has been thru a lot in her short life. Soon to be 3 years old. None to soon that FINALLY potty trained her. Yes you read that right she is finally potty trained. Not 100% but she wears panties all day and they stay dry more than wet. She likes her panties so much she rather wear them to bed then a diaper. I have only started this a week new. We have gone to the mall, park and hospital in panties and come home dry. It only took me realizing she would use the pottie if she was in her panties.

She has started EATING. We went to see the people at CHOC and they said she wasn't quite ready for them. We needed to work on a few areas. They lowered her intake thru the tube from 250cc to 200cc dosen't seem like a lot but when its 1.5 cal per cc it does. Plus we started her on a food stimulant. Since we started it on Dec 14 she wants food and actually will eat it. It isn't enough to miss a feed but better then what it was. We won't get into the Clinic until summer around June.

That is the news on my Angel Kharisma.

Wednesday, November 9, 2005 12:45 AM CST

Well turns out we won't be getting her port out this month. In Jan she needs another vaccine then in March blood has to be drawn to see if we can stop the meds. I have to go soon cuz the princess has just informed me she wants to go outside to play. We ar now arguing about how dressed she is. All she has on is her nightgown and she calls that dressed.

A friend gave us her old toddler play gym so we put that in the backyard. Which is forcing me to clean the backyard everyday now. It's all good.

We won't get her into CHOC(Childrens Hospital of Orange County) until May or June. They don't admit in Jan or Feb cuz they need the beds for sick kids and are already booking into May. They have a short 3 week course in-hospital. Its not a gaurentee she will be eating after that time just hopefully rejecting food less. She eats pretty well for OT but we just ended our last authorization and her two OTs have left. When we get auth. back she will have a new OT and that could take a few weeks.

Other then all that she is doing great. A speech therapist from Regional center came by to eveluate her. She is aging out of the system and would have to be delayed in some area to continue with them. Anyway, she said Kharisma was cognatively at 4 1/2 yrs in some areas. I will get the offical report later.

I have to go the princess wishes to go play.

Wednesday, October 12, 2005 8:33 PM CDT

Well last wed. she fell in our driveway onto her face. Went to the ER and because her two front teeth where loose had them pulled. Now all my baby wants for christmas is her two front teeth. They said will grow back when she is like 7yrs old. I put pictures up so you can see my babies smile.

Other then that she is doing good. Right now if I took a pic. You couldn't see her fat lip she had just a week ago.

She got what I hope to be the last of her immunizations today. In 2 months she will get one more shot. Then a month after that we can draw blood to see what her immune system is doing. If it boosts her immune system we are good to go, if not more shots.

On the 19 she will see endo. to see if she needs growth horomones. Her thyroid function is low which shows she is not producing enough to grow properly. If she starts this she can reach her full potential. It will a pill everyday. I will have more info on that after the 19.

Take care...

Friday, September 16, 2005 2:55 PM CDT

Okay I am sure some of you are noticing a trend of how long it takes me to update her web site. Honestly she is doing so well there is not much to up date everyone about but once a month.
Before I go into all of her new stuff I wanted to take a moment to tell everyone that today is a VERY special day. Seven years ago today my first son was born Christopher Ian. I will have to put a picture up one day so you all can see my handsome boy.
Okay back to Kharisma. In November we are planing to remove her Portacath(the spot they access for blood). She will no longer be needing it. The transplant center won't need to see her but once a year and in between now and then no special blood draws. In the last I said October it changed cuz her appointment for Endo got moved back to October.
She is starting to eat a little better. On good days she will eat a whole tablespoon of food. Its little progress but one step at a time. As for drinking I don't know how Yvonne got her to drink 4oz a day cuz I can barely get 1oz in her. We have that to work on as well. She has OT twice a week now. When we go she goes back with the therapist by herself cuz she seems to eat better for them with out me their.
As for Kennedy Kregier where she is suppose to go for her feeding that is still a work in progress. The doctor, the social worker and myself are working on getting her in.
She has such atiTUDE. Last night when we put her down to bed she refused to go. The fight was on. It is my fault cuz I started bringing her in our bed after Logan died. Now I am trying to break her of that. After I finally got her to lay down I went down stairs to eat dinner. All was quiet as we walked up stairs. Her bedroom door was open. I peeked in to find her missing. I look in our bed and there she is sleeping on daddys' pillow.
Well take care everyone....

Sunday, August 21, 2005 9:15 PM CDT

We went and came back from cin. It was an eventful trip. Come this October we can start talking about removing the portacath in her chest. That is the point where they access her to draw labs. That is the first step in the road to normalness. I know it will be years before we can get rid of the feed tube.

They drew labs so in a few weeks we might beable to stop ALL her meds. Again each thing is working her towards being a normal beautiful girl.

We are working harder on the potty. She gets stickers when she sits and goes potty. Some days are harder then others she puts up a fight every now and then. I can't get her to sit on it more then 4 times a day.

Over all we are doing well. For those of you who don't know we are working on getting our foster care license. By Nov. we could have a foster child. I know this may seem fast but its what we need to do to heal. We are only taking one so Logans old room will be the foster childs room. We are taking kids from birth to 9yrs. Sometime down the line we might adopt.

Take care everyone and thanks for your thoughts and prayers. It has been a tough road but filled with more joy then sorrow.

Monday, August 1, 2005 11:08 AM CDT

I can no longer call her my BABY GIRL cuz she is such a BIG GIRL now. She speaks in 5 word sentences, askes questions and gives off BIG attiTUDE. The other day I told her to come and lets go she looked up at me and said, "No you come on". I couldn't help but laugh.

She does the funniest things during the day. She has recently started singing. If you interupt her she lets you know she didn't approve of it. Usually by yelling at you that she is singing. The old saying is true she is 2 going on 21. With this new TUDE of hers she is getting harder to feed by mouth. Somedays are great and we can get 5 bites of anything in her and others we can't get her to taste anything.

We are going to continue with OT twice a week in hopes of her eating someday. We are still working towards getting her into Kennedy Kreiger Institute for feeding. Even after I get the paperwork in it takes there is a 5 month waiting list. It is worth it if it works.

She has getten to be such a handful lately. I don't know how Yvonne(aka Nana) managed to bath her everyday or get her on the potty. Yes that means she is still not potty trained. Lately she has started throwing such fits. She screams and crys while in the bath to the point where it is an in and out event. Same with the potty she doesn't want to sit on it. Some days she is okay and others like today not interested. I think I will send her to her Nanas' house for 2 weeks. She seems to listen better for her. As for putting her hair up. 5 mins after I do she takes it down. Yesterday while I was trying to put it in a pony tail she kept yelling, " I don't want a tail" and crying. We did it anyway and sure enough she took it down.

As for the C-dif results she is still positive. They are not going to try anything else unless she starts showing signs that it is affecting her. For right now she is happy and healthy. Dr. Lande feels that all we REALLY need to do is stop the amoxil but we can't cuz that is up to Cin. They want her making anitbodies to the vaccines before stoping it. We go to see them for the test and all on Aug 10. I don't know how long it will take to get the results back but I will let you all know when I do.

I think that is I will also update her photos. They are a little dark but there will be at one of her at a wedding we attended and some of her at b-day party.

Monday, June 27, 2005 3:20 PM CDT

Okay, She is still doing sooo well. She talks up a storm and repeats everything you say. If you sneeze she has started saying, "bless you". She is soo darn cute.

Earlier this month we did a clean out of her intestines. It wasn't has bad as it sounds. Instead of feeding her thru her G-tube we gave her a liquid. Soon her stools were pure liquid. That went on for 6 hrs. Immediately following that she started her 3rd round of Vanco. It will run till the jul 2. On the 8 I will take another sample to the hospital and hope for the best. On the 14 jul she has an appointment to see the GI specialist to see what we do if she is still positive.

As for her eating. This last tuesday she ate half a slice of turkey lunch meat. I have started a new rewards system. If she wants to watch a movie or paint she has to take a bite of something first. It has been working so far. Today for lunch she ate some butter, sour cream and took a bite of a peroige(potato in a pastry). Gary and I are thinking we are going to send her to a hospital that specializes in kids who don't eat. The 2 hospitals I know of are St. Joes in NJ and Kennedy Kreiger in MD. They say after 8wks max she will be eating up to 20 food items. That is if we can get her in. Can you imagine by 2007 we could have a healthy normal child. With no portacath or NG.

On Aug. 10 we back to cin. for her check up. They will draw some labs to see if she making antibodies to the vacc. she has gotten. If so we can stop the Amoxil. With that gone maybe we can stop ALL the meds. Also if they don't need to see her but once every 2yrs I will see about getting the portacath removed. It is in the middle of her chest. Right now they have to poke her once a month just cuz it will clot if they don't. If they won't need to draw labs but once every 2yrs why bother having it.

Wednesday, May 25, 2005 3:17 PM CDT

Kharisma is doing very well. Her main problem is the eating still. When I left for UCLA she slowly stopped eating the little she was. It is hard to just get her to taste food anymore. She began to drink A LOT of water while I was gone but stopped shortly after I came home. I am able to get her to drink by having her drink for what she wants. If she wants to watch a movie she has to take a drink of water. That ONLY works with the water. I have tried with food but no luck. It will take awhile.

I have started watching Summer my friend Adriennes' daughter who is 18mths old on thurs. We are hoping that watching Summer eat will motivate her. This thursday will only be the second time watching her.

While I was gone Kharisma made a new friend. His name is Gabrielle(sorry can't spell) he is 16mths old and nearly bigger than her. She askes for him all the time. Check out the photos to see them playing together.

Also we went to the dog park in Mission beach and Kharisma went in the water. Pics of that as well. She loved it and so we are thinking of signing her up for swim lessons.

On Jul 2 I believe we are going to fund raiser for HLH and Kharisma will be throwing out the FIRST pitch of a game. I will take lots of pics and put those on the site as well.

She has another dental app. to clean her teeth. They are still a littel black but should clear up with regular dental cleanings.

She is getting SOOOOO BIG. You can have a conversation with her. She tells you what she wants and if you don't listen she will yell at you. Big time additude with this ball of fire. Hey her name fits her personality.

She is nearly done with her vacc. updates. Just one more round of dead and they will be caught up. Then when this C-diff problem goes away we can give her the live shot and all done. This C-diff problem as been on going for nearly 5mths. We are on another round of Vanc(an antibiotic) then if that doesn't work she may have to have her colone cleaned out. Yeah not pleasent but you have to do what you have to do. The doc. doesn't think this will become a big problem but if it did get out of hand it could be life threatening. C-diff is something we all have in our intestines we just have the bacteria to keep it under control. With Kharisma on the Amoxil she lost that bacteria. With her being post transplant we can't stop the amoxil either. Once she shows she is building antibodys to a vacc then we can stop the amoxil but that won't be for another few mths.

She is big into the Incrediables, Buzz Lightyear and Arthur. I spend a lot mornings watching them over and over and over and over again.

Thats the update sorry it me so long to but hey now I had a lot more to say.

Tuesday, April 12, 2005 9:37 PM CDT

Okay over all she doing well. The eating has become a problem again. I can't blame her I am gone with brother her world has changed.

Her teeth are still a little black so she has a dentist app. on the 25th of apr. Hopfully it is all good news. As for the persistant diahhrea she is going to see a whole lot of doctors on thurs. No one seems to know why she has has loose stools for the past 2 mths. We have tried different meds but nothing has worked. They may end up doing a biopsy of her intestine. OUCH!!!

She got her second set of vac. with the help of numing creme she was alright. Got 2 in each thigh and one in each arm. Supposedly she has to go back 2 more time to get all the vacc. but I will have to triple check that first.

Take care GOD BLESS YOU ALL.

Wednesday, March 30, 2005 7:45 PM CST

I weight now 27lbs. I have rolls on my arms again. I am 31 1/2 in. tall.

WOW! I hadn't realized how long its been since my last update here.

Seeing how I am in UCLA this will mostly be second hand info.

Lets start with Easter. She had a blast. She went to Aunt Lindas house with her Nana. Daddy came here to visit. It didn't take her long to realize you have look for eggs. She managed to find 21 eggs. Not bad for her first time. She wore a dress her Nana made her.

She has become quit the jabber jaw. She can tell you just want she wants. Although not me cuz when I call she doesn't have time for me. When I call to say good night I get a see-ya love. She is the cutiest thing. She came to visit me a few weeks ago and I think it was harder on me her leaving. She just kept saying "BYE" like go now mom I'm done with you.

As for her eating she has again backed down. When she did eat some she throw it up. It could be all she is going thru with brother and I being gone.

Plus she has had diahrrea. Some stool had pop positive for c-dif(a common bacteria found in the stomach) she just doesn't have the other bacteria that fights it due to the amoxil she takes. Now here teeth are turning BLACK. Whe hasn't seen snyone to find out why yet. Her Nana is working on that. Her teeth don't hurt and her gums aren't sore.

All that will be resolved soon I hope. It sucks not being there and having someone else take charge. I feel like I should be doing more to help her. Other than that she is just growing and doing so much.

Her Nana takes her on walks everyday and to the park. She actually has a good bed time 9pm not 11/midnight. Finaly some real stabilaty in her life.

Take care I will post again as soon as I hear more.

Sunday, January 16, 2005 6:55 PM CST

There will be no trip to cin. for Kharisma. Dr. Filipovich understands that would be more stress on us. She is just going to email dr. Lande a list of labs to draw. That is one thing off our minds.

She is eating so much now. Not a lot of it but tastes so much now. If we could only get her to drink more than just water.

She talks up a storm. We have a sign language book and she LOVES to look at it and tries to sign. She can do A and B in sign now. She is soooo smart. Its amazing how fast she has caught up. The only thing we have to work on is she is bow legged. We think it is cuz her right leg is weaker than her left. We hope it is a matter of working the right leg more. I keep meaning to make a 2yr appointment but can't find the time.

I will update her page the beginning of every month cuz she is doing so well. She truely is an example of the power of prayer.

Wednesday, January 5, 2005 7:35 PM CST

I am doing very well. Just had PT for the first time in nearly 2mths. I have been walking a bit bow legged but my Physical therapist thinks its cuz my right leg is weaker then my left. I just need to strengthen my right leg and my legs should straighten up.

I have feeding group tomorrow. It really has helped me alittle with my eating. Right now I am EATING my veggie puffs. I just need to drink more water.

I had a little party for my birthday. It was just me, my brother and parents. I got to wear my pretty dress my godparents sent me.

Here soon me and my dad have return to cin for my check up. After this appointment it should change to once a year. Then when I am 3 yrs post-transplant it will go to once every 2yrs. I have to be followed till my teens.

Well thats all my news. Oh did I mention I talk ALL the time.

Again take care. I am LIVING proof of the power of prayer.

Saturday, December 18, 2004 9:55 PM CST

Kharisma is currently without PT/OT and Speech we are awaiting re-approval. On the bright side she is still attending the feeding group. They meet every thursday for an hour. I think it is helping although she is the only tube fed one. She even has a boyfriend. Its a boy about 4yrs old who askes about her. His grandma said his face lite up when he saw her walk the room at the hospital.

They basically just sit the kids at the table and offer about 6 different food items to the kids. No pressure to eat just touch and taste. She has improved on her willingness and intrest in foods.

Today I put some veggie puffs in a bowl and just set them down I didn't tell Kharisma or point them out but later she was snacking on them.

She is such the little mom to Logan. I breast feed Logan and this morning she lifted her shirt to feed him. When he cries she jumps up to console him. If he is in his carseat or bouncy she will rock him or offer his pacifier. Its sooo cute to see them together. I just wish I could put video on this site.

Have a Merry Christmas and Happy Holidays.

Thursday, November 25, 2004 6:36 PM CST

I have started a caringbridge page for Logan now you can visit it by just replacing Kharisma with Logan. Example:

caringbridge.org/ca/logan


Kharisma is doing wonderful. She just started a feeding group at childrens. They meet every thursday for an hour. Her first visit went great she tried everything they offered to her. I am not sure what all happened cuz she went with her Nana and her dad. I had to take Logan to get an ultrasound. With this added she will get feeding worked on twice a week now. Ot on tuesdays and the feeding group on thursdays.

Since she is doing so well in speech she only has to go once a week. Once she is three she will no longer get speech at childrens. After that age they go to the school system. She most likely won't start school till she is 4yrs old. With Logans transplant she won't beable to get the live vaccines.

The biggest thing we have to think about right now is what to do with Kharisma during Logans transplant. We don't think Gary will get off the entire time. We only have 2-3 mths to figure all this out.

Well have a Happy Thanksgiving everyone.

Saturday, November 20, 2004 10:01 PM CST

Not such great or good news to report tonight. We just got the word yesterday that Logan is sick with HLH. With him they found it in the blood before any symptoms are present. On tuesday Logan goes in to see what size of borviac they can place in his chest. They should place it the wk after thanksgiving. No date set for sure but soon so they don't have to keep poking him for blood. We just have to decide where we want the transplant to be at. Our oppsions are UCLA or CIn.

Lots of talking to be done. I will start a site for him later.

Friday, November 12, 2004 1:47 PM CST

I just loaded new photos.

enjoy...

Sunday, November 7, 2004 7:17 PM CST

Well as some of you know I had Logan Riley Elliott Hargraves on Oct 28 at 0047. He weighed in at a whopping 7 1/2 lbs and 19 1/2 in. long. My smallest baby and to think he had another 2 1/2 weeks to go.

The doctor induced cuz he had turned and was afraid I would go into labor with him like that. I sorta wish I had waited but he is doing well.

They sent his cord blood out to get tested but cuz that wasn't conclusive they have to draw another 5cc of blood on monday. The results should take about a week to get back. We, of course, are praying for a healthy baby. The only problem he had is Jaundice.

I have healed quickly and feel just fine. Can't say anymore cuz Logan is hungry and I am his bottle.

Tuesday, October 26, 2004 9:00 AM CDT

All is going so well there is hardly anything to write about. I am due in just 2 1/2 wks all is going well with the pregnancy. Getting very excited and ready to have this kid already. My belly has gotten so big barely any of my maternity clothes fit anymore. Our hospital bags are packed, Kharismas' and mine.

On Sat we are going to Riverside to Lindas' for a halloween party. Then on Sun we are going to the church for a small get together. I think tonight we will carve our pumpkin. I know it might seem late to a lot of you but the only real reason we are carving one at all is for Kharisma. Not really in the halloween spirit this year. Next year we will decorate.

Kharisma is excelling in Physical therapy to the point where now we don't have to go back but once a month. Speech they see the kids till the age of 3yrs then the school system takes over. In that department she is also excelling she knows over 40 signs and nearly 20 words. She babbles all the time. She has even made up a word "see-ca" don't know what that means. As for OT she goes back and forth. One wk she eats 2 pretzel sticks the next she won't touch them. One time she ate a goldfish cracker with speech but wouldn't with OT. If your wondering she NEVER eats for me. We make her a plate everynight and tastes.

The house is basically done everything that should be in the house pretty much is. Now it is just tring to find a home for it all. We have had to buy storage drawers to put stuff in. The garage is a mess but thats Garys domain. The dogs have adjusted okay to sleeping in the laundry room. Its that or outside.

All most forgot, Kharisma actually has a problem. We think it could be bed bugs. Something is bitting as she sleeps she will wake some days with 5 new bits on her belly or back. We change her bedding everynight and wash down her bed plus we but bug repellent on her as she sleeps. That seems to be helping but its no answer. I am going to make an appointment to see her peds dr. to try and get some help. Thats all been going on while she has been constipated. We started feeding her about 8 oz. of water a day over the wkend and yesterday she had a normal movement we hope that fixed it.

That is all for now. The next time I write will probably be to say I had the baby.

Take care and GOD BLESS YOU ALL.


HAPPY HALLOWEEN!!!!!

Friday, October 8, 2004 3:36 PM CDT

We just finished our move to our 3 bedroom house. Its amazing how you get 1 1/2 extra baths and an extra bedroom but less yard and space. The move took 2 days and cleaning took a day with the help of some friends and her Nana Linda. The whole finding a place for everything is taking a lot longer. It is a different floor plan so we have find new homes for our junk. Slow and steady wins the race right!!

Kharisma is doing great in her new bigger room. Her room was the first sorted to help her adjust. As for the babys room that can wait cuz he will sleep in a bassinet for his first 3 mths. Gary has a design in his head all I really know is it is a fish design.

Well I must go cuz Kharisma is cring.

Take care.....

Monday, September 13, 2004 9:13 PM CDT

WOW!!!!!! Nearly a month has passed since my last update. She is doing incredible well. Her speech is improving in both ways not only is saying more words but using her signs more often. She knows about 6 words now. Her favorite word is Meg one of our dogs. The other dog is Fayth but she calls her May can't quit say the F yet.

She walks everywhere we go. We seldom use her stroller infact the only time we do use it is when she has to be feed. Speeking of feeding, don't get your hopes up NO she is still not eating, the nutritionist said we can skip 1-2 feeds. On days she has OT I skip 2 feeds to see if she will eat better. The first time I tried it she actually tasted more of the food.

With PT we only see her twice a month. YEAH!!!!!!

As for the pregnancy I have just 2 mths to go. Unlike most people we have to pack a bag for Kharisma and find someone to watch her while I'm in delivery. I know it will all work out just fine.

Take care....GOD BLESS....

Sunday, August 22, 2004 8:25 AM CDT

Back on Aug 14 we had a BBQ at out house with some neighbors/friends. Kharisma loved it she played with 2 6yr old girls and a 4 yr old boy. Plus there was Brian who is her age and Summer who is 9mths.

We had Kharismas' pool filled and the 3 older children played init and Kharisma hung out at the rim of the pool. She got soaked from all the splashing and loved that A LOT. The 4yr old boy kept giving her kisses on her cheek. We have pics but will put them up later have to find them first.

It was great having other kids over for Kharisma to play with. She couldn't have been happier. Gary and I enjoyed watching her laugh and smile. The only downer is seeing all those kids eat didn't make her want to eat.

Good news from PT(physical therapist) said Kharisma is doing so well and learing so fast that she doesn't feel she needs to see her more than twice a month. Now that Karisma is walking we have to challenge her to make her better at it. She suggested having her walking in sand and on grass. The hardest of all KICK A BALL.

For speech she knows 17 signs and is improving her pronunciation of Meg and Dog. A new word she uses more often is mom. Guess I gotta get Gary to stop hitting her. Ha Ha Ha!!!!!!!!

Yesterday I went to Gaia Spa and had a maternity massage. Cost a bit but was worth every penny. I slept sooooooo well last night. I will be going back at least once more during the pregnancy. Gary wants to go try it out for himself.

As for the pregnancy all is well. My hips are shot but that will go away after birth. We still don't have the bigger house but are number 79 on the list. They said it would take 9mths and they weren't kidding. Adrienne was kind enough to let us borough her bassinet. Now we are setting up a space for the baby in our room.

That is all for now I will be sure to get those pics up today or by tomorrow latest. Take care.......

Friday, August 6, 2004 7:21 PM CDT

This will have to be quick cuz someone is crabby today. I think its the heat.

Her favorite game now is to copy the faces she makes at you. She is soo silly it comes from her dad.

Great news after my trip to cinn. We are STOPPING THE IVIG. Which means in 4-6 mths she can start her immunizations. After they have started she will have one last surgery to remove her portacath. Thats what they draw the blood from. We do have to return to cin on Feb 2 for a check up and if all is still going very well we will then move her visits to once a yr. They say at 3yrs post transplant that her visits will go to once every 2yrs.

Now with her visits to Dr. Lande her hemotologist will go to once a mth for blood. I assume till her next visit to see Dr. Filipovich.

Nothing but good news after this visit. Everyone there was soo HAPPY to see how well she is doing.

She walks ALL THE TIME now. Without holding your hand. Which isn't bad if you don't mind walking very slowly and following her around the place. It has been long over due for that.

She can say a few words not sure everyone would understand them. She says: dog, meg, see and ohh. Only if she is upset will she say mommy.

She has even taken to pushing her stroller(umbrella) around.

No she still does not eat.

Take care...Love you all....

Wednesday, July 21, 2004 6:03 PM CDT

I will try and get this in while she is asleep. When I was updating the photos she woke up wanting mommy. I would have held her but there would be a lot more non-sense on the page.

She is soo close to walking all by herself. She can take 10-15 steps unaided. When she really wants to walk she will come grab our finger and pull as to say lets go!!! At the doctors tues I had to walk with her up and down the hallway. The hard part was holding on to the pump infusing her med.

As for her med(IVIG) we go back to cin. aug 4 to see Dr. Filipovich who will make the decision to stop it or not. Once it is stopped just 4-5 mths after that she can get vaccines. Getting those would me make almost as happy as her eating.

With the new pics I put up that is what she does with the food just tastes it. That is more than she did before so we are happy. Our OT who is working with her feeding is stumped as to why she doesn't eat. She is going to consult another OT who has done this longer. She no longer thinks it is Kharismas' gag reflex cuz she can touch the back of her tongue. It could be 2 things: She doesn't know what HUNGER is and Doesn't associate food in mouth with filling the tummy. Right now we skip 1 meal once in awhile around dinner time to see if that makes a difference. The problem is 3 hrs isn't enough time for her to get hungry.

Not sure if I told you all but we have speech back and Kharisma is learning more signs. She does try to talk and is better at motioning and non-verbal talk(like pointing). Its been slow but the change has been great. She can sorta tell me what she wants with out yelling at me.

As for this pregnancy all is going well. The only real problems I am having is my hips are shot. The hurt when I first get up from laying down.

As for the last check-up kharisma had she now weighs

22lbs and is 31 1/2 in. long.

Not much weight gain but she grew nearly 2 inches. She is sooo smart and thats not just coming from me everyone says she is. She knows where her toes are.

That is all i can think of. Take care...

Wednesday, July 7, 2004 11:40 PM CDT

Okay the computer seems to be working well.

She is FINALLY taking her first steps not quite walking yet. She takes 3-4 steps then falls down but it is a beginning. I figure by the time we get PT back she will be walking.

More great news the other day she ate a cheerio and veggie puff. For those of you who do not know what a veggie puff is it is like a cheerio but from veggies. That was in the presence of a 9mth old who was chowing down on them. We may have to make more visits during her(the other baby) feeding time.

She is doing wonderful. On Aug 4 we go to Cinn. again. Hopefully after this visit we might beable to stop the IVIG and soon take the port out of her chest. YEAH!!!!!!!!

Thats all I can think of for now its just too late for my brain to really be functioning. I just to let everyone know she is soon to walk. Then we can move her into a big girl bed.

The baby I am carring now 6mths along is possible a boy. I will find out more for sure on the 14th of july.

Take care....

Thursday, July 1, 2004 3:11 PM CDT

Kharisma is doing wonderfully just had her IVIG/check-up. All is well!!!! Dr. Lande is trying to get the IVIG stopped so we would only have to go in every 3 wks for a physical thats how well she is doing. We see Dr. Filipovich on Aug 4 and I think thats when she will decide if we can stop it or not. It will be another long flight for us her soon. The perks are room service which I gladly use.

She is just weeks away from walking!!!!! If you put her with her walking toy she will walk around the house. Unfortunately we lost PT(Physical Therapy) cuz we are waiting on tri-care to re-approve visits. The same goes for Speech. She has grown so much with the help of these two therapies. She says dog, Kitty, Daddy and shhhh.

When ever I see her next to a child her age or younger I often have to remind myself that she had a BMT and a rough start at life. Cuz yesterday she was standing next to a child 16 mths old who was twice the size of her. Granted her parents, at least her mom, is bigger than me.

Well my monitor is blinking and I am afraid to lose this much info so I will have to go for now.

Take care!!!!

Tuesday, June 8, 2004 10:54 PM CDT

Great news came my way today. Dr. Filipovich got back to Dr. Lande who inturn told me we don't have to come back but every 3 wks now. She will be getting the IVIG a little longer. She sees Kharisma in Aug thats when I feel she will decide whether to stop the IVIG or not. As for immunizations that won't happen till at least 4-6 mths after she has stopped the IVIG.

More good news we have OT once again. She will see Kharisma every mon. Just once a wk for now but can move up to twice a wk if needed. Hopefully she will soon EAT with out tears.

Kharisma now knows almost 10 words in sign. We decided to keep her learning even after she starts to talk. Its nice cuz we learn as well. As for her talking she doesn't REALLY know anywords. There is no way of knowing when she will start to talk. She likes to do things at her own pace.

Went to seaworld on sunday and got a caricature of her. Even though she moved a lot the pic. came out very nicely.

If anything new comes up I will be sure to update. Take care everyone. I pray our soldiers come home safe.

Thursday, May 20, 2004 11:11 AM CDT

Wow it has been a long time.

She is doing so well Dr. Lande(at balboa) is going to see if we can switch to coming in every 3weeks for her IVIG. That would be wonderful this everywk is hard. That would free up another day for us.

She crawls like a pro and soon will be walking. Casey(Physical therapy) thinks she improves everywk. I say Kharisma just needed to see how it was done. She can cruise the furniture now and even tries standing with no support. It still amazes me to see her crawl.

She loves the white dog but Meg doesn't care for her as much. She wouldn't bite her but she gets up everytime Kharisma starts to play with her.

Sometimes we think she says words. Brooke(Speech therapist) said if she says something that sounds like a word just say the word. Like it sounds like she says : Go, Dog and OH yeah.

She weights 2oz shy of 20lbs. This has been a struggle to get this far. As far food goes she seems to like the broth inside a pot pie and enjoyed tastes of spagetti sauce last night. She will put lots of food in her mouth but doesn't want to swallow it YET!!! Remember this could take YEARS to correct.

She can shake her head YES and NO now. When you ask her questions she can answer you or so it seems. Last night at the store we asked if she was hungry and she said yes. Then when asked if she wanted cheetos and she said yes. Now don't think she just says yes cuz we got a few nos. Like when Gary was looking at junk food she told him NO.

Also Gary taught her to give kisses. She puckers up and makes a sound after a kiss. It so cute cuz some times she is just giving it out and other times she licks you. She is sooo smart.

She can sit up on her knees. She likes to yell at you if you don't let her have her way. 0111111111011111 Thats from Kharisma.

That all for now.

GOD BLESS AND TAKE CARE...

Friday, April 30, 2004 11:35 PM CDT

you guessed it our computer is up again. well kharisma is still doing wonderfull. May 2nd will be her one year post transplant anniversary.

She crawls like crazy all over the house, mostly chasing down the dogs, and us. She likes to play in the kitchen with her magnet letters and numbers throwing them around the kitchen.

PT is teaching her to climb up stairs, oh joy, just can't wait to get into the new house with stairs so she can climb up them and fall down them.

Shes is up to 15 teeth now, but still doesnt use them for eating just for chewing on everything but food.

Oh and by the way we are having another baby, due in Nov.

Well i guess thats it for now, ,will keep you posted on things weeks after they happen as usual.. haha..

Bye for now...

Friday, March 19, 2004 10:10 PM CST

Well I finally have some pics to put up. Not all the ones I would like but we would have to download somemore software to get them.

We recently went to Seaworld with some friends and Kharisma got to touch a Dolphin and a Bat ray. We of course washed her hand right away after that. It was a beautiful day and we VERY much enjoyed ourselves.

We are going hiking tomorrow she should enjoy the out doors.

Now for all the things she has learned to do. In sign language she can do GO, MORE, DOG, FLOWER and FOOD. She can wave hello and bye-bye. She ponits to what she wants and trust me she has noproblem telling you that. The biggest thing SHE CAN SIT HERSELF UP FROM BEING ON HER BACK!!!!!!! Crawling is just around the corner.

At the balboa the other week she saw some little girls sitting at the table and screamed to get there attention. When one of them said"oh look at the baby!" She just smiled. She loves being the center of attention.

We have the dogs back with us and Kharisma just LOVES the dogs. They stay away from her most of the time. We are teaching her to be gentle with the dogs. Of course for the dogs to be gentle with her.

I will be getting her re-evaluated by the Developement dr. who saw her shortly after we got back from Cin.. That way we can see just how far she has come.

Take care and God Bless....

Friday, March 5, 2004 9:28 PM CST

Where back!!!!!!!

Just back today. The flight there wasn't that bad the best part was the flight back. Everyone on the plane just said how beautiful she is and what an angel. I think I will HAVE to keep an eye on her cuz someone might try to take her.

The visit to cin. went VERY WELL. Our visits there have been exstended to every 6mths now. She is off her cyclosporine and soon may even stop her Pentamiden. Now that she is off her cyclosporine I can soon start going to balboa every 2wks instead of everywk. Plus I can stop going to UCLA everymth. I have to go on the 25 but then can probably stop.

As for vaccinations they won't happen for at least another 9mths. She has to be off her IVIG(which she gets every3 wks) and then wait another 4 mths after that. She should be on the IVIG for at least another 4-5mths. Also once gets her vac. she can come off of the amoxil. Which will leave her with just the Pepcid,for acid reflux, and Reglan, to speed up her digestion.

They have found a new gen marker and are currently testing Kharismas' blood. I didn't find out about the new marker so I can't tell you about it. Kharisma IS a carrier and if she gets lucky like we did and meets another carrier she could also have sick kids.

We will be going to cin. till well past puberty. At puberty they test to see she develpes into a woman. Thats the best I can remember to explain it I hope you all understand.

While in cin. we went to Newport Aquarium. Took lots of pics will put some on puter when we get them develped. I was a nice place to visit. I think next time we will take a carriage ride cuz it will be summer.

She is SO close to crawling. I think it could happen any day now. She sorta scoots right now using her head. It is hard to explain but its like crawling but using your head.

She just in 2 new teeth her bottom molers. In a few day she will have her bottom fangs as well. She does A LOT of tastes and will eat cheetos. If I haven't said it before she drinks all the time from a sippy cup. The docs say that is a good sign and move foward.

Dr. filipovich couldn't be happier with the way things have turned out.

If I remember anymore I will be sure to update. If any of you every have questions feel free to email me so I can answer them.

TAKE CARE AND GOD BLESS

Thursday, February 26, 2004 7:06 AM CST

Okay the trip to Cin. childrens is back on again. Last min. approval for both visits was given yesterday sorta. The sorta is cuz tri-care approved it now I am waiting on the travel to process it. For awhile I didn't think we where going cuz tri-care hadn't received the request for a visit for Filipovich but in the end with a LOT of phone calls it came in. Today I should get a phone call saying I can pick up my travel orders and plane ticket. I fly out mon and come home fri. A very short trip.

It seems that Gary will possible be taking a LONG drive to get the dogs. We are growing impatient waiting for my mom to send them. In April it will be almost a yr since I've seen them.

KHarisma is getting 2 more teeth her molers on the bottom. She is taking it well although at night is a bit crabbier. Again overall doing very well. Everyday she makes some the weirdest faces. She has learned to blow in/out of her nose. I am just blown away at what she learns everyday. I try to write down all she learns in a day but somethings are just going to have to special memories for just us. Not that I don't want to share them its just hard to describe them all.

She is becoming SUCH a big girl. She can sit up and play while eating. I know you all can understand what an accomplishment that is. She has out grown her bouncing(what we where feeding her in). We are going to find a big girl chair.

Gary and I were just saying how amazing it is to see her learn and to know we taught her most of what she knows. Thats what having children is all about. To see the world through their eyes. Everyday see the simplest things entertain her. When she gives that BIG smile or a huge it makes the problems of your day melt away. We just feel blessed that she chose us to be her parents.

This is the last wk for her cyclosporine(immunosupressent). She will be on just 3 meds: Amoxil, Pepcid and Reglan. When her immune counts come up she will not have to take the Amoxil. When she stops vomitting all together we can stop the other two.

TAKE CARE AND GOD BLESS

Saturday, February 21, 2004 6:53 AM CST

Yet again we say another feeding team. The same news was told to me. Keep up with what we where doing and it will take time for her to start eating. Now if anyone is wondering what I mean by TIME I mean she will be closer to 3YEARS OLD before she will start eating.

The difference with this meeting is the Nutritionist made up a feeding schedule that more imitates that of a normal childs eating times. Instead of waking at 3am and starting my every 3hrs feed of 130 I wake at 5 and give 135 5 times a day with 2 snacks of 3oz twice a day. Every wk or 2 increase the 4 feeds by 5cc while decreasing the 5 am by 20cc. Eventually stopping the 5am feed.

She has her 8 teeth now. Dosen't really use them she will put food in her mouth and chew a bit but eventually spits it all out.

Other than that she is doing very well. She has learned to point by making an L shape with her thumb and finger. It is so funny when ask her a question and shakes her head no. It seems as though you are really talking with her. She has learned to wave hello and bye it just takes a while to get the wave.

Her vomiting it is once a day if that. She can sit up now while eating and we no longer have to wait an hour after a feed before doing anything with her. Seems like everyday she does something new and funny. She is quit the comedian.

GOD BLESS AND THANK YOU ALL...

I pray that all our soldiers come home safe!!

Thursday, February 12, 2004 10:30 PM CST

Well, as everyone has been antisipating there are new pics of Kharisma now on the site. It took some time but they are worth the wait.

I just to thank you all for your words on Kharismas' size. They REALLY do help!!!! Especially since the doc. in peds surgery labed Kharisma with the words "FAILURE TO THRIVE". Just cuz for her height she should weight 2lbs more. I think I will go with what one of the Nutritionests said, "It might not be her feeding that makes her small but her genetics". Lets face it I am small for a girl so she doesn't have much help there. I don't care she is perfect to me.

Everyday she learns something new. I have inquired about the sign language so soon we will be learning that. That really isn't a bad skill to pick up.

The meds are working cuz she throws up maybe once a day and not very much at all. She is starting to beable to sit up while the food goes in soon I hope to sit her in her high chair while food goes in. Then I could put food infront of her. She is starting to put more food in her mouth again. Not quite swallowing yet but we have made some progress.

I am getting respite care now so at least one day a wk for 4hrs I can get out by myself. The nurse seems really nice and Kharisma seems to like her.

Well, not much else to say except have a

HAVE A HAPPY VALENTINES DAY!!!!!!1

Friday, February 6, 2004 1:02 PM CST

Kharisma is now getting speech every wed./fri for 25mins a session. During that time it really is just repeating words and adding sign language to it. I was thinking I take a baby sign language class. That wouldn't be because we think it will take her longer to talk just so she can communicate to us other than crying.

With her sudden love of standing we think she might just walk by summer or fall this yr. She doesn't crawl yet but some kids skip that milestone.

Soon I should be getting respite care. That is where a nurse comes to the home 1day a wk for 4 hrs and looks after Kharisma for me. I can leave or just stay and clean/sleep. Of course we will make sure we are comfortable around her before even thinking of leaving.

We have decided to get her a new car seat where she sits forward. She is getting too long for the infant one and she so likes to look out the window.

I know last journal entry there would be new pictures and there will be by tonight. I am taking the camera with me to her Speech/OT app. and I will snap some pics. May even get one of her standing.

We are trying to set up a play date with a neighbor(Angela). Her son Brian is the same age and it will be good for her to play with a child her age once a wk.

I don't know if many of you remember the problem we WHERE having with her blood counts. It is over it turns out the DOCTORS were drawing TOO much blood at a visit.

After our visit to UCLA on Jan 29 we started 2 meds back up. Reglan(speed up her motility) and Pepcid(acid reducer)so if she does vomit it won't burn her throat.

Everyone have a happy Valentines day.

TAKE CARE AND GOD BLESS...

Friday, January 30, 2004 1:28 PM CST

Well after talking to the surgen she will not yet be getting that procedure. He thinks she will soon out grow this vomiting and it is not enough to worry him. Another doc. suggested starting back up 2 old meds again but I will check with Dr. Lande first. It is just the Reglan and pepcid(prilosec). Right now she is on only 2 meds at home and here in 5 wks we will be stoping the cyclosporine. Plus the cytogam she WAS getting everywk for the cmv she used to have is done. Now she will just get regular IVIG(immunoglobulin-boost her immune system) once every month. She will still have to go every wk for labs and physical exam but thats it.

As far as how she is doing well she STANDS now!!!!! With help of course and only for a min. but she STANDS!!yeah yeah!!!! She can roll from her tummy to her back and raise up on her arms. Shakes her head no and if her ask her can she say no she will shake her head NO. Understands when you say clap and flaps her arms to fly.

We got a tortoise. Yeah I know we are braking the transplant rules but she doesn't touch it and wash our hands so much out of habit. I told a transplant doc. and he wasn't upset and didn't say get rid of it. His name is Mortimer and he is OLD 30yrs old roughly. The people we bought him from lied about his age. He is only 5in. in shell length and won't get much bigger than 8-12in.

I am going next wk to get pro. pics of Kharisma taken at JcPenny. I know I was supposed to do it sooner sorry!!!

I started exercising at Ballys. I actually go like 5days a wk. Haven't lost any weight yet but it takes time. I just say a trainner the other day who told/showed me the best way to work out to lose the weight. Maybe that will help.

Speaking of weight Kharisma is up to 17lbs now and almost 28ins long. Yet again that corpmen says "I don't feel so guilty now that my daughter is taller than you Kharisma". I should of slapped her. I figure is already stupid enough already.

Kharisma has 7 teeth I thought 8 that has not cut yet. 4 on top and 3 on the bottom. The other day she eat some lettuce and a fry. We think the problem she has now is that she has a sensative gage reflex. When she goes to swallow she gages and then spits it out. She seems very interrested in food and drinking.

She has made 2 new friends Summer you saw in the pics. and this boy next door who is just 2 wks older than her.

Tomorrow we are going to the zoo. On Mar 1 we will be in Cincin. until the 8. Just for a check up. I will try to take her up to see my family for a few days. They haven't seen her since she was 3mths old so they will be surprised at all she can do.

Tomorrow I will try and put new pics up.

Thank you all again for your prayers and support.

As most of you know Christy (Jordyns mom) well Chad(her husband) is over seas with the war and could use some prayers as could all the men and women fighting.

TAKE CARE AND GOD BLESS!!!

Friday, January 16, 2004 7:48 PM CST

hello again remember me. I know I am lousy at keeping this up to date but as I have said in the past no news is good news.

I am going to put Kharisma thru another surgery. It has a month since the button was placed and she hasn't grown any. She throws up at least twice a day. I am opting to have fundalplication. They will tighten the sphinkter muscle at top so she can not throw up or burp. Then we can do more with her and feed her more. Would you want to eat if you threw up that much.

I haven't made the offical arrangements Gary and I have just decided she needs it. This won't be the last surgery she will have. When this is all done they will need to remove the Portacath(the device in her chest).

She is doing well otherwise. The main problem she is having is her red bloods are getting low and we don't know why. Some of the reasons could be the cytogam she gets every wk has made an antibody that is eating up her red cells or GVHD. They are having lots of people look into this problem. One problem also could be the labs each wk take like 15cc of blood.

We are due to go back to Cin. on Mar 3. I am going to try and exstend my time so I can go see my grandma.

She is on a reduced number of meds. Just 3meds we give. We are slowly taking her off reglan and tapering the cyclosporine. The only meds she will stay on for a while will be amoxil, cytogam, and septra. Those go by her ammuine system.

I have put new pics up hope you enjoy them.

Plus she shakes her head no and understands what that means. She has learned to clap her hands.

TAKE CARE AND GOD BLESS YOU ALL...

Thursday, January 1, 2004 10:48 PM CST

YEAH WE HAVE OUR PUTER FIXED!!!!!!!!!

All it took was reloading windows. So simple but a headache. We where worried we had lost A LOT of Kharismas' pics. Now we are going to burn them to cd for the next time.

After seeing Aprils' memory book for Jordyn as inspired me to start one for Kharisma. Later I will try and do one for Christopher its just it is still hard to look at old pics of him.

Her Birthday was Dec 31 and she is a year old. She might be the size of a 7mth old but she is as smart as any 10yr old. She claps her hads and finally is starting to put weight on her legs. I feel like time is just passing by so fast. Before I know it she will be walking and talking.

Later we will post pics from her B-day party. For guests we had Adrienne, Greg and Summer. It is so hard not to allow kids to play with her even if it is for her safety. I sometimes think she is missing out on interaction with other kids. Sometimes think if Christopher was still alive how much fun they would be having. He was just as happy and playful as she is.

Now she has 6 teeth. If only she would eat. We try to feed her before she has her feeds but that just upsets her again. Just when we thought we made progress we end up at the beginning.

I have just one annoyins. This corpman at balboa who every wk reminds me of how her 3mth old is bigger than Kharisma. I expect that from people who don't know what Kharisma has over come but someone who was there through most of it. I know she will catch up but I worry everyday about her being so small and to be reminded of it every wk!!

She is almost 17lbs and 26 1/2ins. long. That might be small for a one yr old but she is alive and thats all I care about.

Thanks for listening and take care....

GOD BLESS AND HAPPY NEW YEAR!!!!

Thursday, December 25, 2003 7:45 PM CST

I know it has been along time since I last updated the website but I have a very good reason for this. My puter has crashed and can't get to a puter.

The trip to cinn. on Dec 15-19 was great. The flight wasn't great but visit went well. As I already know she is doing wonderfully. We are tapering her cyclosporine(the immunosupresent) so in 10 weeks that will be gone. Dr. Lande just told us we can stop giving the prilosec(ulser med). We are looking to see if we can stop the actigall(for her gall bladder) after cinn. gives the okay. That will leave her on just 3meds.

She doesnt' eat by mouth but she will put it in her mouth and take bits. We changed what goes in the G tube. We now give her peptamen junior a more complete nutrition for her age level. As for growing she has started to grow once again. Turns out the reason she was losing so much weight is cuz she was not getting all the cal. she needed to grow. That has finally been fixed.

The nutritionest from cinn. wants her to take in 27oz. a day she currently takes in 24. We give her 4 1/2oz. a feed 6 times a day. It is a tough schedule but its nice to hear she has put on weight. Although I get annoyed everytime someone says how tiny she is. She can't help that she is only as big as a 7mth old. The docs say she will catch up and be the heigt she was ment to be.

I am updateing this from Lindas' house in Riverside. Thank you very much Linda.

I don't know when we will get the puter working but I will see if I can find someone to update it for me from time to time.

There are new pictures hope you like them.x x c , jm l, , k kbgk k o

love Kharisma

Tuesday, December 9, 2003 6:38 PM CST

I tried to update yesterday but the puter kicked me off. Lets hope it goes thru this time.

We got her feeds up to 4oz an hr every 3hrs. She eats at 7am til 10pm. Helps us to sleep thru the night. We will try and work her up to 6oz an hr to give her and us a bigger break on the feeds. She is gaining weight back up to 16.5lbs. Not very high but she is growing again. The only down side is now we are back to the beginning with her eating.

She finally put weight on her legs the other day. Not for long or by herself but it is a start. She talks none stop unless you put a phone to her ear.

We leave for cin. on mon and return fri. Just 2 short visits. Should be uneventful. I will be staying at a hotel so no updates imafraid till I come back.

If I didn't mention it before she has 3 teeth now. She grinds them all the time. How do break that habit in a baby?

Well I must go....Take care during the holiday season..

GOD BLESS AND TAKE CARE..

Tuesday, December 2, 2003 8:57 PM CST

Well I guess I lied we where not let out til today. Dr. Vascez (the surgen) felt it was best to keep us a little longer. It was boring cuz all the nurses did was make sure she eat every 3 hrs and kept it down. I told him we could do that at home but he didn't see it that wayl.

Now we are home safe and sound. The G tube is working just fine. She has to take in 3oz every 3hrs of 30cal. 24/7 til we can get her up to 4 1/2 in the morning and evening then 3oz through out the day. In order for to keep it down we had to pump it in over 30mins.

In a few day we should hopfully see her gain weight. She hasn't been measured but she is looking longer.

We are so happy to be home Kharisma can finaly get a good night sleep with no one poking her. I can get some sleep with one interuption of a 3am feed. Tomorrow I will increase her feeds to 3 1/2oz thru the day so I can skip the 3am feed.

Other than that is perfectly healthy.

GOD BLESS EVERYONE....

Friday, November 28, 2003 12:21 AM CST

WOW!!! It has been awhile. The G tube is in place as of Mon. We already started feeding her thru it. It has been a lot of trial and eeror. She threw up A LOT but we think we finally got the right combination.

We tried to switch her to pediasure but she couldn't keep that down AT ALL!!! Then we tried 3oz every 3 hrs but after the 3rd try she throw up. Now we feed her 24 cal. 2oz every 3hrs.

Did I mention they stoped the TPN(nutrietion thru her IV) wed.

Today we might be going home. There is nothing these doctors are doing here that we can't accomplish at home. She did put some weight after they started giving her the right amount of calories. She was only getting 60 calories per kilo when she needed 100 calories/kilo to grow. The TPN at the right calorie actually had her gain weight. In one week she went from 14lbs 14oz to 18lbs.

She has lost some weight with her only nutrietion being what she keeps down the G tube. I have no doubt that soon she will begin to grow again.

Over all she is doing wonderfully. If no one has checked we have 2 new pics of Kharisma one without the tube in her nose. With the tube gone we will be getting pro. pics done again.

We hope you all enjoyed your THANKSGIVING. We where the only patients on the floor all day and night. It was peaceful.

GOD BLESS AND TAKE CARE!!!!!

Thursday, November 20, 2003 11:44 AM CST

Okay where to begin.

On sunday she just ate breakfast and then slept the rest of the day. Come Mon 2am she started throwing up and lasted until 8pm. Turns out she the CYCLOSPORINE WAS TOXIC in her blood AGAIN!! By the next day all was better but now she won't eat.

Today we are doing a test to see that her eating organs are all attached properly with no problems. She has to have an NG placed to put this dye down for the x-ray. This is all to prepare her to GET her NEW G tube on Mon!!!!!!!!! YEAH!!!!!! Yes thats right on Mon she will have the G tube and by Wed we will finally be home. I don't have too much info right now on the tube.

The side that will be in her stomach will be held there with a ballon. The procedure should only take 1hr. If she pulls the tube out WE will beable to replace it easily. Only about 1inch will be outside the skin. When she will no longer need it all we have to is remove it and with in a day the whole in her stomach will be closed. No stitches needed.

As far as infections go they say it is very little. We just feel right now that would be best cuz she is not going to start eating enough anytime soon. I am excited and nervous at the same time. Luckily Gary will with me. As he will be checking out of the command next week.

Right now all is well. I thank you all for your caring and concerns.

GOD BLESS YOU ALL!!!!

Saturday, November 15, 2003 2:10 PM CST

Gosh its been along time.

Kharisma was admitted yesterday so we could pull her tube out. YES thats right the tube has come OUT. She had to be admitted so she doesn't become dehydrated. Yesterday she ate McDonalds and mashed potatos.

Today so far just waffles but the day is just beginning. She is to stay for at least the wkend. Then we will reasses the situation and see if she needs longer.

Finanlly some doctors saw it myway about her losing TOO MUCH WEIGHT. At 10 1/2 months old she weights a WHOPPING 15lbs. Since sep. has been tring to reach 26ins. The doctors up at UCLA say she needs more calories. Thats probably why she has stopped growing again. I hope soon she will catch up to where she should be.

Over all she is doing wonderfully. When I can get home I will put pics of the tube coming out on this site. I video taped it cuz Gary missed it cuz he was at work. She looks great.

The doc. from UCLA said she was on TOO MANY meds so Dr. Lande is going to stop about 3. She was on 8 meds. For the weekend he stopped all but the cyclosporine. Doesn't want to do anything that might cause her to stop eating.

Gary won't be here for the visit cuz the ship goes out Mon-Thur. He has duty today he said he was going to try and visit her tomorrow.

Take care and GOD BLESS...

Tuesday, November 4, 2003 10:36 AM CST

Okay....First we are all SAFE!!!! We evacuated sunday evening stayed with a friend in PT. Loma. The fire came as close as 3-5 miles from the house. With the winds changing it stopped and moved on. We were back in the house the next night.

It was very scary to wake that morning and see smoke and ash. Thats when I started to pack some things. I think we over packed as we took 10 tubes of stuff with us. It took 3-4 days for the smoke and ash to clear. Now life is back to normal.

I will post some pics of the smoke for a few days then replace them w/pics of Kharisma. In our pics of the smoke you can't see the fire. We weren't that daring.

Kharisma has been doing wonderfully. She is eating(sorta) McDonalds happy meals. She really just sucks on the fries and meat then spits it out but it is a beginning. Yesterday I placed a cookie infront of her and grabbed it and put it in her mouth like it was nothing.

I don't think most parents this emotional over their child eating. It is wonderful to see. This is bringing us closer to her eating.

We barely have her wear the mask cuz it is such a fight to keep it on her. She is finally getting OT/PT. Everyday we see changes in her. She rolls to her side more often. The main thing is she puts no weight on her legs/arms.

With all of her appointments I am out of the house everyday going to the hospital. She was evaluated several times for developement. We found out she is only 25elayed. It shouldn't take too long for her to catch up.

A nurse at Balboa has a 2 month old and I swear if she tells me one more time how Kharisma is the same size as her baby I will scream. Kharisma would be normal size too if she WASN'T born sick. What parent wants to hear their child at 10 mths of age is the same size as someones 2 mth old. That would be a very big 2 mth old. Kharisma is 26ins. 16lbs. that to me is not tiny.

Enough of my complaining. I hope none of you were effected by the fire and you are all safe with family.

GOD BLESS AND TAKE CARE....

I PRAY FOR THOSE WHO HAVE LOST THERE HOME OR FAMILY MEMBER IN THIS TRAGIC FIRE.

Wednesday, October 22, 2003 9:47 AM CDT

Yesterday we went to the hospital again unscheduled. The end of her feeding tube broke. Started out with just a little hole then as the dr. was looking at it it broke. The first dr. we spoke to said she couldn't fix it and suggested a G tube in the belly. Dr. Lande spoke with a second dr. and with in 10 min. he repaired it. He used a kit to repair a c-line. Later that night she was able to eat again.

Hopfully by next wk we should be getting OT and speech. Tomorrow she meets with PT for an assesment. Cuz she gets soo crabby on the meds she gets on thurs. I will have to start taking her in on another day for PT. Also cuz there is no at home OT/speech I will be taking her to the hospital for that also. The downside is it is another hospital not balboa.

Tomorrow will be a busy day. We have to get there before 9am for labs then hook her up to meds. By 1130 she meets with PT. I have to bring all her meds for Dr. Lande to look at to make sure I am giving them CORRECTLY. I also have to meet with nutrition and Andrea to see what is out there to help us finacialy.

On monday Gary leaves for the wk. Luckily he has duty today so he gets the wkend off.

Yesterday I gave Kharisma a kids chicken nugget meal from McDonalds. She sucked on the fries but didn't eat any. Thats a start I guess.

GOD BLESS YOU ALL AND KEEP YOU SAFE!!!!!!

Friday, October 17, 2003 7:30 PM CDT

Hello again to all...each time I log in I sit and think of what has all happened. Most of the time NOTHING!! The same can be said for now.

Her diarrhea comes and goes. Not really sure what is causing it. Dr. Lande suggests it could be the inability of her intestine to absorb all the food at its current rate. I am allowed to do some tweeking and add some pedialite.

Over all she is doing remarkable. I am starting to take her out more as I said in earlier msgs. Today we went to Horton plaza an outside mall. One guy passing by made a comment about SARS. Just goes to show that stupid people in really do exsist.

I am not so good. Not sick just sick of Garys' command not letting him off of work cuz "I can do it all myself". I am feeling worn out with all the doc. she has to see/Trying to get SSI for her/Her meds/getting OT/PT/SPEECH. I need 3 of me just so one of me can rest. Luckly a friend said she would be willing to drive to LA with me next month. They want to see Kharisma there at least once a month.

Every time I go to her drs. visits I swear they look at me like I do nothing with her cuz she is still behind and falling behind further. Especially with her feeds. I try everything suggested to me. NOthing seems to be working. They make me feel like I am an unfit mother.

Just yesterday the dr. marked on her stomach to measure her liver and made a comment of "if the marks are still there next week we know whats not happening". Like I never bath my daughter.

Money is getting tight with me not able to work cuz gary gets off about 1 day a wk. Soon to be gone a whole wk. In dec. when her changes commands I can get a job. Its hard to believe we make too much for WIC.

We went to the mall so I could treat myself to a chocolate covered strawberry. I had hoped to get at least 2 but they were $4 each. I had to get Kharisma a few winter outfits for dec for out visit to cinn.

I will stop complaining. My life is not all bad I have a beautiful daugher/son and a loving husband to help me thru these tough times. Of course all of you supporting me.

THANKS AGAIN...GOD BLESS....

Saturday, October 11, 2003 11:55 AM CDT

Let me start by calming all your worries. Her stools returned to normal yesterday. I also discovered what was causing the mess. I was "overdosing" her with amoxil. Now don't worry there will be no ill effects. After reordering the amoxil and talking to the doc. I realized for the past 2 wks I have been giving her double the normal dose. After skipping a dose all returned to normal.

With the lesser amount of amoxil she also has lowered her vomiting in the mornings. Plus we changed her off the feed to time to night. We started to get a little worried about her stranguling herself with the feed tube. It will make it harder to get her to eat but its not like she is doing all that will right now.

For the first time we took her to the store. Now the docs. don't wish us to do that often but it was late and the store wasn't very busy. She can't live in just a house all the time.

We go back thrus. for her cytogam then I should know if her pen. has been changed to septra. That will make it much nicer. Harder on us with the addition of another med. But worth it none the less.

If anything new happens I will update right away.

THANK YOU ALL FOR YOUR PRAYERS AND GOD BLESS!!!1

Thursday, October 9, 2003 7:12 PM CDT

We showed up nearly 2hrs late for her surgery. Luckly they still fit us in.
It took an hr to place the port and it sits just below where her c-line was. They say in a month the skin should disencitize to the needle going in.

Dr. Lande is going to see about switching her pentamiden to oral instead of IV. Soon we can start giving the cytogam once a month. That would be wonderful.

Now for the could be bad news. She has diarreah. As far as I know she got it sat it is still going on. The worst case is GVHD of the intestines. They drew blood and are doeing a stool sample test to look for other causes of the diarreah. I am sure there is nothing to worry about but PLEASE pray for her that it is the lesser of the two evils.

Other than that she is perfectly healthy.

Dr. Lande is going to see about getting OT/PT started sooner seeing how she is not eating.

Gary will be going out on the ship for a wk and the end of the month and again mid nov. I guess I will have to stock up on food and supplies.

GOD BLESS YOU ALL....

Wednesday, October 8, 2003 12:26 AM CDT

Yesterday we were suppose to go to UCLA but that got rescheduled to next tues. Not a big deal less running around to do this wk.

Tomorrow she gets her port placed. First thing in the morning like as early as 0730. It will be nicer with no lines to mess with. We can dress he in more than onces that button up the front. I've enjoyed putting two piece outfits on her.

We can bather more regularly in the tube with out having a bandge to change.

She is doing very well. The site where the line came out is closed and scabed over. Her roughest day was mon when they had to poke her 4 TIMES for blood. The worst part is they moved the needle around while under her skin.

On thurs. they put her to sleep with gas BEFORE they poke her with a needle. It will be nice to have a line in again.

I just know with her lack of eating that in dec. she will be getting a G tube. In so many ways I think getting that will help her too start eating again. It has to be hard to swallow with a tube down your throat. The G tube will go directly into her stomach. The biggest worry I have with that is her pulling it out.

I still do not have OT/PT/Speech. She is starting to fall behind especially in her eating. We fed her everything and anything and still she doesn't eat. She has begun to lift her feet to her mouth and grab them with her hands. She is advancing in some areas.

I will write in tomorrow and let you all know how the surgery went.

GOD BLESS YOU ALL....

Friday, October 3, 2003 11:01 PM CDT

Well as some of you have already discovered there are new pictures of Kharisma. In the pics she is 9mths old. She has lost more weight at just 17lbs 13oz.

Over all she is doing well. Had a BIT of a SCARE today. We gave her her weekly bath then proceeded to change her dressing. I noticed it was out a bit further and the suiture was not holding it in. Just as I was going to secure the line then call the hospital the worst happened. SHE PULLED IT OUT!!!!!!

Gary was on the ship and had the truck so I called 911. Which felt useless cuz it rang like 10 times then I hung up. Found some neighbors and asked them to rush us to the hospital. By then 911 called me back and we finally got an ambulance.

All is well now and I guess having the line pulled really isn't that big of a deal but to us(garys mom and myself)after see the blood coming out we freaked. Right now she doesn't have a line. We switched her cyclo to oral and on tues or wed she will be getting a port. Much easier to maintain just harder cuz now she will feel the needle go in again.

We are all back home and there have so far been no ill effects on her.

Yvonne(garys' mom) leaves for maine tomorrow morning. It was GREAT having her here to help out. We look forward to her next visit. Hopefully next time Chuck will beable to come also.

GOD BLESS YOU ALL.....

Saturday, September 27, 2003 11:07 PM CDT

Hello again.....a minor set back we had to restart her ulser med(protonix). We started to see old blood in her spit up. All that means is her stomach is not quit healed.

All else is going well. I(Sonia) went to bingo on wed. Didn't win but it was nice to get out of the house.

Still busy empting tubs and getting more storage space. It is nice to have the space to place all our stuff in the house.

Finally got approval to put in an airconditioner in Kharismas' room. With the sun beating down on it most of the day it gets quit hot. We are tring to see if our insurance will reimburse us.

Still do not have OT/PT/Speech I am working hard to get them. I don't want to return in Dec. and have my baby return with a tube in her belly. Nothing wrong with one I just want her eating. It can get SSSOOOOO frustrating trying to feed her. She freaks out at the slightest taste of food. It will take some time to re-teach her to eat.

I have been trying to upload a new photo of Kharisma but my SLOW system keeps locking up each time I have tried. Be patient with me and it will happen. At about 9mths old she weights a light 18.2 lbs and measures a petite 25 in.

God Bless to you ALL. Have a good night.

Tuesday, September 23, 2003 11:04 PM CDT

YEAH!!!! WE ARE HOME!!!! We got in thurs. the 18 of sep. It was a quick and fun flight. We flew with Taco Bell by way of Corporate Angel Flights. The Execs. we flew with were all very nice and friendly. They were OVERLY kind about reuniting us with the dogs that they ALL chipped in some money so I can fly them home. I got a total of $325. Will help out A LOT.

All has been going well with Kharisma out biggest obstecal has been with her cyclosporin level. They changed her abisom infusion for diflucan oral which GREATLY increases how much cyclosporin is in her system. They are still trying to find a good level. If the cyclosporin(an immuno supressive drug)gets to high it can cause nurological(can't spell)damage. Her level is to be no higher than 350 but got as high as 560. Thank God she is fine.

We are still working on getting OT/PT and speech. She still doesn't eat too much. We go back on Dec 17 for a few days for a check up. Then the feeding team will decide whether or not to put in a G tube. That goes into the stomach and will replace the tube in her nose. They will ONLY do that if she is not eating enough and they feel she will need the tube for a long time.

As soon as I can get it done I will put new pics on her sight. She got so big after transplant and is now losing it slowly. She is holding steady at 19lbs. and measures nearly 25in.

Linda and Yvonne decorated Kharismas' room for me before I got here. It is beautiful I will and put a pic of that in the sight as well.

Now that I am home and have free access the internet I will update it more regularly.

I thank you all for your patients with me.

GOD BLESS

CONGRATES AGAIN TO CHAD/CHRISTY ON THE BIRTH OF THEIR BOY JACKSON THOMAS ON 28 AUG.

Tuesday, September 9, 2003 6:53 PM CDT

This update is being done by Linda Austin, a friend of the Hargraves family.

Sonia and Gary have asked me to let you know that they are preparing for their own family reunion...of sorts. Gary is back in San Diego (where he will remain until he retires). They have received base housing and he and his mom, Yvonne, are there getting things all moved in and ready for Kharisma and Sonia to join them. Their estimated date of arrival is Sept. 18th. (YAHOO!!) As you can imagine, Sonia is ecstatic......she is going a little stir crazy from being cooped up in a single room all this time.

Kharisma is doing remarkably well!! She is now 18 lbs. 15 oz. (Which is a reduction due to fewer steroids). She is more active now and is touching her toes.

The best news is that she is coming off some of her meds and has no sign of GVH. They have already taken her off Gancyclover(?)for CMV.....some of you will know what I'm talking about. Tomorrow she will be off the steroids and blood pressure meds completely.

They have a specialist working with her (both physically and mentally) concerning her feeds and her NG tube. They actually have her taking 1 tsp. a day of real baby food. That doesn't sound like much, but it is real progress.

They want to run some tests and put some dye in her NG tube to determine if things are moving...and...in the right direction and they will also check for any stomach deformities. After the tests results are in and if she has no improvement, they are considering putting a Gastro tube directly into her stomach. This will require a small surgery, but may actually help her to heal the stomach problems quicker.

Well that's about all the news for now. Hopefully Gary will have the computer at home fully functional soon and they will be able to update more frequently.

Thursday, August 14, 2003 6:14 PM CDT

Hey everyone its dad here mom finally made me update this thing.... So far she is doing good, her teeth are really bothering her, she needs tylenol and orajel at least once a day. She has been having some diarrea, Sonia had it sent in for testing to see if there is any viral infection. Her weight is slowly going up...she is up to 20lbs and 24in long. If you descide to buy her some clothes start at 12 months, cause of her big enormous belly.

Kharismas' aunt Ann from Indiana came to visit for a couple days, gave sonia a chance to get out for a little and buy some much needed food for herself and Kharisma.

All-in-all she is doing wonderfull her counts are great, they are trying to get her a bigger break on her feeds to try to get her more hungry so she will eat like a normal baby.

Housing is getting better we are number one on the list but its so difficult to get hold of the lady doing our paperwork it feels like she has forgotten us... it seems like its going to take an act of god to get her to return my calls....

They did a donor test on her the other day...she is now at 100% and it is safe to say that her HLH is gone.. YEAH!!!!!!!...

Well I guess thats it for now... we will let you know more as it comes up.....

Wednesday, July 30, 2003 11:43 AM CDT

Sorry to have to start this out on such a sad note but Austin is not going to make it. He will be joining the angels in Heaven. The only good news(if you can have good news about this) is he will be going home today. There is no website for him but if any of you want to send him a card just send it here and I will make sure they get them.

PLEASE PRAY FOR HIM AND HIS FAMILY!!!!!

As for Kharisma she is doing VERY WELL. Her Nana/Papa visted this past wkend. From which Kharisma has a new trick she does. She coughs when she wants your attention. All day we here her coughing!! It started as a cute trick with her Nana. It was a wonderful visit wish they could have stayed longer. Kharisma woke up after they left and looked all around for them.

While they where here Gary and I went to Olive Garden. Stuffed our faces like we would never eat out again. It was nice to have any time alone together. Alas Gary is leaving this Sat for CA. There he can fight with housing better.

The worst thing about coming to hospital is clinic. They can be SOOOOOO SLOW even on a slow day. The day Kharisma was vomiting up old it took nearly 30 mins to get her in a room. Some nurse said she didn't need isolation. I informed her case manger and talked with the her boss.

Today we are in Day Hospital(DH). The nurse went to measure her on a special board that was balanced on the scale. It nearly tipped Kharisma on the floor. Get this the nurse measured her at 12 1/2 inches!!!! HELLO!!!! Not very bright now are we. I also complained about that. Soon nurses are going to be scared to help us cuz I will be known as the COMPLAINING MOM. Oh well I don't want to endanger my daughters life.

Other than that life is wonderful!!

Friday, July 25, 2003 12:40 AM CDT

We finally got out of the hospital on thur. The treated her for what they hope was just ulsars. Her stool is free of blood and so is her vomit. Steriod use typically causes ulsars so it is nothing unusual.

Now she also takes an ulsar med. Just once a day but it adds to the list.

We went in today for a chech up and all is well again.

Her counts are still doing very well. Her platlets are 300k.

It was funny in rounds normaly just the attending and resident go in the room to check on the patient. When it came to Kharisma every doctor out there came in. The counselor/Nutri./Pharmacy and many others. One doc. even noted that they all come in the see her.

Wish I had more but shorter means nothing new which is VERY good for me.

About Austin, He should be coming down to the BMT Unit today. The other day he eat a burger/fries. The doc. still say he will not make it but it's a MIRACLE he has servived this long.

Tuesday, July 22, 2003 2:19 PM CDT

My it has been awhile.

On sun Garys' cousin Jennifer and family came to visit. It was very nice of her to watch Kharisma for us so we could have alittle alone time.

Early mon morning Kharsima was vomiting up some old . NOT MUCH!!! She was doing small amounts for most of the day. We had to admit her to the hospital. Thought she would be coming home today at 3pm but started vomiting up dry/fresh (in VERY small amounts) half an hour before discharge. It is looking like another night here.

They did an ultrasound of her abdoman and found nothing. They are just guessing really. A dentist is coming to look at her mouth cuz we think she has sores again. Soon I could have that information.

As for her overall health she is perfectly happy and healthy. She can sit up on her own for almost 2 min. Her two lower front teeth should be out anyday now. She is FINALLY growing long not just wide. At last measurement she was almost 23 1/2 in. weighting 18.8lbs.

She will be out and well intime to visit with her Nana and Papa who should be arriving this wkend.

Austin is still with us although the doctors still say nomatter what he will not live. They got him off the vent a day or so ago and are working on getting back on the floor. As Gary said just getting off the vent is 100% improved. Please countinue to pray for them.

God bless you all and I shall try and update tomorrow.

Wednesday, July 9, 2003 7:50 PM CDT

Hello again to all....Thank you for coming!!!

We finally got word on EFMP. From 1-4(4 being highest) she is 5. Which means we are homestead so we will be living in CA for the next 8 yrs till Gary retires. Good side is we have a home for the next 8 yrs no moving every 3 yrs.

The doctor moved us from 3 times a week to every wed. We will be in the hospital all day cuz she will be getting her ambisome and cytogame in the same day. We are making progress. Dr. Filipovich said we will only be here till sep. We are getting very excited.

Gary is currently talking to housing trying to get us on the list. They say we can only get a 2 bedrm and that is farther from the hospital.

For daily care she will be seen by Dr. Lande but for a rash or complications she will have to go to childrens in L.A. Every 3mths come to cinn. for a check up.

Will write more later.

MAY GOD BLESS AND KEEP YOU ALL!!!!

Monday, July 7, 2003 9:01 AM CDT

Sorry it has been so long since my last update. Not much has changed.

The worst thing that happened is last mon after her med. she had a fever of 101. We had to stay in hospital for 2 days got out wed. They wanted to make sure it was just a fever from her med and nothing else.

She is fine and healthy otherwise. As for feeding we are going to try giving her those teething biscuits. She chew on those and maybe get stimulated to eat.

On a sadder note. Yet another child is going to pass. His name is Austin and he is 1yr passed transplant. He came in with minor symptoms. Now is in ICU with FUNGUS in his BRAIN. He seized on wed and was not expected to live this long. PLEASE PRAY FOR THE WRIGHTS.

It is getting SOOOO hard to talk to other familys with sick kids cuz so many don't make it. Its great for the support and friendship you get from it but hard when the child doesn't make it.

I am sure Christy agrees that everytime I hear or know of a child dieing it brings thoughts of my own flooding back.

Gary will be leaving for CA beginning of Aug. We still have not heard from EFMP about our paperwork. I have called just about everyday and left a message. Hopefully we the news before he leaves so he can get things together.

It looks like they might keep us here until Oct. She is doing well its just we live so far away and she still has CMV(cytomegleovirus) to deal with. That can shorter or longer depending on how she is doing. Plus they see her 3 times a week and until they don't need to see her but 1 every couple of weeks we stay. If anyone feels like a visit after aug feel free to come over.

Thats all the news worthy to print.

GOD BLESS YOU ALL!!!!

Sunday, June 29, 2003 10:10 AM CDT

Hi its me again...Sonia.

THANK YOU CHRISTY!!!!!!!! You are such a HUGE help to me and THANK YOU for those kind words. You have been such help and support for me thru it all.

Kharisma is still doing VERY well. She does vomit from time to time. They started her on octagal. It is to help move the sludge in her Galblader(sorry can't spell). They did an abdominal ultrasound on fri. and saw a stone in her Galbladder. They think that blockage may be whats slower her desire to eat and also causing her to vomit. The stone SHOULD work its way out over time. She had the same problem when she went in to the transplant.

She is still not eating but we work with her everyday. I am blessed if that is my biggest complaint. As for her milestones she is just a little behind. She doesn't lift her head anymore and has yet to roll over. Yet again things I am HAPPY to live with.

She has some break down on her bottom that has not cleared in about a month. We have tried everything. Even mixing Milanta(ant-acid)w/butt creme.

We took her for a drive the other for just 40 min. Had to get out of the room more than just going to the hospital. She seemed to enjoy it.

Her counts are looking WONDERFUL. Her platlets have come back fantasticaly on ther own at 207k.

She is a FAT little girl. We had to buy 9mth clothes to fit around her belly. She weights 18lbs and at least 2lbs of that is steroids.

Just 1 1/2 mths to go and we should be returning to CA. It will be REAL nice to have a whole house to live in. More than one room to take Kharisma in.

I just got word that the 15yr old with HLH died just 4 days ago in ICU. She fought very hard. I ask for prayers for IVY and her family.

Myself or Christy will update as news appears. Thank you all for coming and prayer for us.

Thursday, June 19, 2003 10:14 PM CDT

Hello, this is Christy and I talked to Sonia today and she asked me to update!

GREAT NEWS!!!! Kharisma is OUT OF THE HOSPITAL!! She was released on Monday about 4 pm, but they had to return aprox 30 minutes later, because Kharisma decided she did not need her Gtube! She did NOT pull it all the way out, and where gone from the hospital with in a half hour! They are staying at the Ronald McDonald House and Kharisma even has her own room! Sonia has a cold right now, so when she's around Kharisma she must wear a mask, so it's def. nice that Kharisma has her own room so Sonia can sleep without the mask, but she's right next to them..the rooms are connected I believe so it's kind of like 2 small apartments! :)

Right now Kharisma is off of her feeds for 4 hour stretches! She is currently getting 40 CC's and if they can get her up to 45 CC's then she'll be off the feedings for 8 hours straight! She only has to go to the hospital for check ups on Monday, Wednesdays, and Fridays and has the weekends off! Of course they can't go anywhere..but that's just fine with Mom and Dad! :) She's also not vommitting as much so they believe her tummy is healing and that's just one more GREAT sign!

Sonia sounded really GREAT! I and I'm sure all of you are just so happy for all of them.

I am going to throw in something personal (hope you don't mind Sonia!)...Sonia and Gary are VERY special people to my family. They asked me to be with them at the hospital when Christopher went to Heaven and I felt such emotions to be able to be with them in the most precious and hardest day of their lives. For any of you who were NOT honored enough to meet this precious little boy...he was just that: precious. These 2 people have so much love for both of their children and to see the pain they went through and to be able to relate to that pain because of the loss of my daughter and have them be there for our family during their own grief..well all I can say is they are gifts from God to our family. Kharisma is a VERY lucky girl to have them as her parents and I know they feel blessed to have her as their daughter. I've come across a lot of people who've lost their children to cancer and other blood diseases and my heart always aches for those who've lost their child, but when I look at what Gary and Sonia have went through not only with Christopher but to once again face this hell again all I can say is if ANYONE deserves good news and blessings it's this family.

Also, Sonia shared with me on Sunday about a young woman who's 15 yrs old and was dx with HLH and being treated at Cincy. When she was dx she had multiple organ failure, her parents were told to say their goodbyes..amazingly this young woman pulled through. She got healthy enough for the bone marrow transplant and had that aprox 15 days ago. Sadly she's once again in organ failure. Any of you that know the lack of immune system and strength in post BMT patients understand this is probably some of the worst news this family could recieve. With very little doubt this young woman will not be gracing our world much longer. Please keep her and her family in your prayers. I do not know her name, just her age and dx of HLH.

Well that's it for now. I maybe doing quite a bit of the updating as of right now, because the RMH only has 1 computer and Sonia said that her best chance of getting online is at 2 am!

They do have a direct phone line in their room and she asked me to share it: 513-636-2096

God Bless

Sunday, June 15, 2003 3:17 PM CDT

It has been a LONG TIME since I last had the chance to update her site.

She is doing SOOOOO WELL. We SHOULD be out of the hospital Mon afternoon. She is no longer on that nasty TPN and only has two meds IV(cyclosporin/gancilover). She started vomiting this morning at 4 and did so every hour till 915am. As of recent no vomiting. Her feeds are at 35cc/hr and she should be at 45cc/hr by mon. If they can't get her too at least 40cc/hr we may have to stay a few more days.

When she gets out of the hospital she will still be feed thru the tube in her nose. We have to teacher to eat again. Either from a bottle or solids but she WILL have to take in a normal amount for an infant her age to get the tube taken out. We hope this can be done before leaving for San Diego.

She will be on 4 oral meds and 2 IV(thru the line in her chest) meds. Before we leave they should have her off most of her oral meds. By day 100 they will taper the cyclosporin.

We have been lucky no GVHD. It can still show up a 1 1/2 yrs from now. At 2yrs post transplant she will beable to start her vaccines and after that we can start seeing a regular ped. doc.

Over all she is 98% donor which is a VERY good thing. We will have to stay her till day 100 which is around aug. 13. Then after being back in San Diego for 3mths make my way back for a check up. We will have to do so at 6mhts, 1yr, 18mths and 2yrs. By the 1yr mark they can decide to remove the line from her chest.

For those of you who remember me talking about a boy named Dayle sad to say he passed yesterday morning. His family is having him cremated then flying to bermuda for ceremonies. Cause was the GVHD 4th stage. Please say a few prayers for the family.

Thank you all....Thank you all for the E-cards.

Thursday, June 5, 2003 1:40 PM CDT

She is doing much better now. Each day brings us something new. Her counts are higher ANC 5200 WBC 6.7 :)

She is started back on feeds. Tomorrow they hope to increase her dose to 15cc/1/2 oz. an hour. Switching the formula and raising the tube in her stomach helped. They WERE going to place an NJ(nose jajuno). They placed it the first time and she got sick right after as she vomited the tube came out of her intestine. The doc. came back and tried again. Yet she got sick again and out the tube came. We had scheduled an app. the next day but the docs. decided the old tube in its new place was working fine.

As for that pesky CMV it has doubled again from 317 to 645. They are hopfull the Gancyclover will work with time. From what I was last told that wouldn't keep us in the hospital longer.

She is teething again so that is causing some discomfort. At night we are going to try Benadryl to help her sleep.

Over all she is doing VERY well.

Tuesday, June 3, 2003 2:17 PM CDT

We have had a minor set back. Looks more like 2 weeks till we get her out of the hospital.

She was having wonderful days. Got her off the pain med. Started her feeds and lowered her TPN(gives the body all the nutriants it needs through her veins).

She has been throwing up at least 3 times a day. Can't give her anything by mouth. Not even 2 drops of anything cuz she will throw up. Cuz of that we had to lower her food level and increase her TPN again. We thought we had solved the problem by switching her formula. You see the NUTRITIONIST wasn't giving her lactose free formula. Unfortunatly she continues to vomit. Some of the meds they had switched to oral had to be changed back to IV.

Today she got 3 x-rays. 2 of her chest and 1 of her abdomin. The chest x-rays show she has fluid in her lungs. They are testing a sample of her nose goo to see if it is the CMV she had when she went to transplant. Her abdomine showed the NG tube was TOO low in her stomach resting againest her stomach wall. They raised that although they have her set to get an NJ tube. It will replace the NG tube and it goes all the way into her intestine. That should allow her stomach time to heal.

As for the CMV. I guess almost everyone is positive for CMV but we have the amuine system to fight it. Kharisma doesn't so it is causing some problems. Her CMV total was 134 just a day ago and now it is 317. They are going to switch her off Foscarnet and on to Gancyclover. The Gan. is better but can hurt her counts. The doc. assure me that her counts are doing so well it shouldn't do much to lower them.

Also cuz of this discomfort and the vomiting she gets small doses of her pain med as needed.

She got a dose this morning and it was TOO HIGH. She looked stoned. She was grunting and couldn't focus barely keep her eyes open. Luckly that wore off quickly and she is doing fine.

I will try to update again tomorrow after her procedure.

Keep the prayers coming they are working.

Also another child went to ICU the other day. He is 6 years old with a rare blood disorder. He was just a week from getting out of the hospital when they discoved her was in the 4th stage of GVHD. To let you know there are only 5 stages the 5th one you DON'T recover from. His family is from Burmuda. They could use your prayers as they have stopped saving the room. I will see if I can get any info on how he is doing and let you all know.

THANKS AND GOD BLESS!!!

Thursday, May 29, 2003 2:32 PM CDT

Her counts vary day to day. Yesterdays were ANC 4210 down today at 3080. This is happining cuz they stopped the GCSF. We wait to see how well the counts come up on there own. They are running a test to see what percentage of the cells are hers vis the donors. We are obviously looking for majority to be donor. I just found out is a female.

A few improvements since I last updated. She is feeding throw an NG tube in her nose. She still gets TPN but is slowing getting off of that. When her feeds are at 30cc an hour they can stop the TPN. That SHOULD only take a few more days.

Her pain meds have been reduced from 90mg to 40mg. They will go down 10mg each day as tolerated. We hope to be out of her in 2 weeks or mid june. Then just 4-6 weeks after that on a plan to San Diego.

No sign of GVHD nock on wood.

To see her you not think she just underwent a BMT. She is laughing, playing and just acting a goof.

I will update more as it comes in.

Friday, May 23, 2003 1:01 PM CDT

This will probably be my last updage til mon. unless something happens.

Her counts just keep doubling. Her ANC 2,158---WBC 2.6...
The doc. thinks this is it the new cells have taken and they SHOULD only go up from here.

Cross your fingers no GVHD :) They are going to start tapering her off her pain med. Tonight instead of going up they will leave it the same level. If she tolerates that well then we will slowly decrease her steady flow during the day. They will decrease it 10% each time.

Her mouth sores are gone it looks as though they are healing all the way down. She is spitting up A LOT of mucous(can't spell) that is a good thing as long as it stays clear.

She pop positive for CMV again so they put her back on the dose she had.

For us to be released from the hospital a few thing need to happen.

1--She needs to be on less/no pain meds.

2--Off her TPN and eating by mouth/NG tub.

3--Taking meds by mouth/NG tub.

After the weekend they will most likely replace her NG tub. It is a step in the right direction. We hope in 2 wks she can be out patient.

Gary just called his detailer and we will be doing another 3 yrs in San Diego. His next station is across from the boat so not a far drive. He figures Kharisma will still need to be near a large hospital just incase.

As far as Cole and his family go. I have not spoken to them since they left. I sent a card out but the Child life people are the ones who mailed. I do not know there address. All I know is they are the Alcorns in Louiseville, KY. If they write me back and say it is okay I will let you all know where to send a card.

For those of you who do not know he was transplanted on April 30 and passed on his 1 year birthday May 16, 2003. It is always comforting to see he touched so many lives.

We have changed rooms the new info is

room: 21 #1-800-344-2462 ext.6-2502

It is sad to say another child lost his/her life last night. Didn't get to talk to the family but it always hurts to see a parent cry due to the lose of a child.

Please pray for the Alcorn and the Eagen family as well as for Kharisma. Thank you and God bless.

One more thing Kharisma will be baptised on thurs. We found a Catholic witness. YEAH!!!!!!

Also if you go to this website:www.cincinnatichildrens.org
You can email a card to Kharisma and we can put it on her wall to show her all the people praying for her.

Thanks again@

Wednesday, May 21, 2003 12:18 AM CDT

Hello again, I am here now to update you on the fact that she has counts.

ANC of 130 yesterday and today 280. Now norm is 1,500 so we have a long ways to go but it is a start. Now her counts will drop and rise until they fully take hold.

What we have to look out for now is GVH(graft verses host). It is normal for it to happen. We just have watch out for the severity. They rate them 1-5 5 being sickest.

Again just a quick note cuz thats all I have time for.

Monday, May 19, 2003 4:44 PM CDT

Hi long time since I last updated my daughters page. YES IT IS I SONIA!!!!

Just a quick note about Kharisma. On Saturday she had a very rough day and night. Starting at 1am she was up in PAIN all day. They kept uping her pain dose and giving high extra doses but it didn't seem to help.

She had to be put on oxygen and had her NG removed. After MUCH MUCH MUCH doses of pain meds she finaly settled and fell asleep. Her steady dose is 80micrograms and 7omicrograms for a bust. The day she was in she got 2 boosts at 100mg/85mg. Later that day she got 2 boosts at 130mg.

She is happy with her meds level now. We think the mouth sores just killed and she swallowed blood so that didn't sit well in her stomach. She had a few tar diapers afterwards.

Still no counts but we are hopfull they will come in SOON.

Take care...until next time....

Friday, May 16, 2003 10:23 AM CDT

Hi, Sonia called me just a moment ago, with a prayer request. Little Cole's coming to his last hours in this life. Sonia and Gary just spoke with Cole's father and the drs have said that it looks like today is his last day here with them. He is still on the vent, retaining a lot of fluids, etc. Sonia said it sounds like the last day Christopher was here with us. My heart is so heavy, as I was allowed to be with Sonia and Gary when Christopher died and had my own daughter die...it's not easy or kind, it hurts and hurts tremendously.

Please pray that Cole's precious life is lead very gently into death, that his parents feel him close to them for the rest of their lives, that they are surrounded by caring, loving people that see that grief has no rules or time limits and that no one and nothing can or could EVER possibly replace Cole.

I got a very quick update on Kharisma. She's doing well still. She's once again off food, and back onto TPN because she has mouth sores and they believe sores in her throat and stomach....they put her on the TPN so her stomach does not have to work and hopefully will allow her body internally to heal. The outside of her body is doing great!

Continue prayers for Kharisma, Sonia, and Gary and please keep Cole's family in your prayers...there's nothing more difficult than watching your child die and having to say "good-bye".

God Bless

Tuesday, May 13, 2003 10:15 PM CDT

Hi, it's Christy again. It's really hard for Sonia to get to a computer or even find the time so at least once a week until life there gets and/or stays calmer and she has time for herself I'll update all of you!

Well 1st for Kharisma. She's doing really good! The dr says she's doing just as she should be. She is on Day +11, still no counts, but they should be showing up here anyday now..so keep that in your prayers as she needs those counts to be released from the hospital and go stay with Mommy and Daddy at the Ronald McDonald House (RMH). The rash is now gone, the blisters have all healed and now her skin is pealing which is something that can be expecting. She's not able to nurse directly from Sonia at the time, but hopefully here very very soon she will be able to again. We all know that Breast milk is best and it will truly help her in her recovery! I'm personally so very proud of Sonia for continueing in the effort of making sure Kharisma is able to get some of Mommy's milk...she's getting a lot of support from Gary, the nursing staff, and drs. Pray Kharisma can start nursing again, because any woman who's ever breastfed and pumped can attest that you produce MUCH more if the baby is actually nursing too, vs pumping only!

As for Cole. He is still in ICU. They had been talking about moving him back up to the BMT ward, until last night when he crashed, his blood pressure bottomed out. He is still hanging in there, and they were hoping to wean him from the vent, and as of right now he has no counts still. The drs told his family that they have done all they could medically it's all up to Cole. He's hung on this long so please keep him in your prayers and his family. He had a perfect sibling match..so this was honestly the best that anyone could ask for as far as getting a donor....so lets pray that Cole continues to fight and comes back to his family.

Well that's about it for now. I'll call Sonia later in the week to get an update. For now if any of you need to get ahold of them, there is a toll-free number that she asked me to share with you.
1-800-344-CMHC ext. 61523

God Bless and keep the prayers and thoughts coming for Miss Kharisma

Thursday, May 8, 2003 10:36 PM CDT

Hello this is Christy again. Sonia called me today..first off Kharisma is doing well..keep those prayers going for her. Gary got there Monday afternoon and Sonia's mom left Tuesday.

The reason Sonia called was for a prayer request...so please send this out to everyone you know. There is an 11 month old little boy, Cole who had a BMT 8 or 9 days ago because of ALL leukemia. His sister was his donor. Sadly, he is in ICU because of pnuemonia in both lungs. He has an extra line in his growing and also an atery aka A-line in. He is not doing well right now and he and his family need EVERYONE's prayers.

Please have everyone you know praying for this little boy. I will be in contact with Sonia over the weekend and will update as soon as I can.

Lets give Praise and Thanks to God that Gary was able to get to Ohio safely and that Sonia will be able to get a few more breaks in during the day.

God Bless and Thank you

Saturday, May 3, 2003 10:57 PM CDT

Hi, this is Christy, Gary and Sonia's friend. I spoke with Sonia this afternoon and she just does not have the time to update the webpage and it's very difficult for her to get to the computer on a normal day.

Well here's the update.
1. and MOST important Kharisma is doing well and really doing just as she should be doing now. She's not feeling the best, I think Mommy's a little tired, but over-all this is what is and should be expected for a BMT!

Kharisma's sodium levels had been off a little, but they are back to normal..so that's a great big YEAH!. Her Potassium levels were low and they gave her some Potasium Bolice (I believe) and her levels are back up!
They think she may have an infection, they drew blood to run cultures, but it takes days to get them to come back...so for now she's on antibiotics that covers EVERYTHING. She had a fever of 101.5 and that's what made them think she may have an infection. The fever is gone, so that's good!
They also believe she has mucusites in her esphogus, so she's on morphine right now. They are giving her a dose every 4 hours right now, but if she seems to be in pain they can give her smaller doses more often. As of right now she's doing well and seems to be pretty comfy.

She also has a rash all over her body. Sonia had washed her clothes in Tide and they believe that's what has caused the rash. Sonia needed to run out to the store and get some Dreft to wash her clothes in, so she had a patient attendant site with Kharisma (this was today). The nurse was in there and told Sonia she would probably be in there the whole time Sonia was gone. The attendant came in and Sonia left for the store, when Sonia returned she told her she could leave, because of the fever she would not be leaving Kharisma's side at all for the rest of the day/evening. The girl left, but came back because no one else needed her...she was sitting a little aways from Sonia when Sonia thought she heard her cough! Then after a minute or so, she heard her sniffle. Sonia asked her if she was sick and the girl said, no. Then she did it again..so once again Sonia asked her if she had a cold, the girl said she didn't have a cold..she was "sure of it", that she had woke up just not feeling all that good but was sure she was fine! Well the nurse even politely hinted around along with Sonia...finally Sonia had to tell the girl to LEAVE, that Kharisma has NO IMMUNE system and has no way of fighting off things.
The supervisor is being advised of what happened today, these are people who are paid to sit with patients...bone marrow kids, hem/onc kids...if they are sick they NEED to stay home! Anyways..that's probably the worst news of everything.

Gary has left California and is on his way to Ohio. He should be in Kansas tonight sometime and he's predicting to be with Kharisma and Sonia by Tuesday or Wed, he has to take their animals to Sonia's mom's so that will probably take up a day. Let's keep Gary in our prayers that he has a safe trip and arrives tired, but ready to help out and just enjoy seeing his wife and little girl!

Today is Day +1...she has MANY more to come. Please keep Kharisma, Sonia, and Gary in your prayers. Things are going really well and let's hope they stay that way.

God Bless each of you who come and check on Kharisma and Sonia and are keeping them in your prayers. Please start those prayer chains if you have not already.

Wednesday, April 30, 2003 3:47 PM CDT

Yesterday was quit a day. At 7pm I came back from being gone since 1530. As soon as I picked her up I know she put on a LOT of weight. Her eyes were almost swollen shut. To give you an idea of how much weight she gained at 9am she weight 6.14kg by 7pm she was 6.7kg. Nearly a POUND of fluid gain.

The dr. comes in and tells me there is nothing I can say that will make him lower her IV fluid. Lucky for us he was just a resident. After her confirned with the Attending her IV fluids were lowered from 38cc/hour to 5cc/hour.

The resident ordered a sodium level on her. It was ONLY 118 when the norm is 130. She could of had a siezure. By 4am her sodium level was back to normal.

Turns out they weren't taking into count how much fluid she took just from eating. She was getting twice the amount of fluids with doing both IV and feeding. Now they just have her on maintence fluids(10cc/hour) and feeds of 2oz/every 2 hours. Her swelling has gone down she weight in at 6.2kg this morning.

The chemo has her so tired all shes been doing is sleeping. Now she is done with her chemos. Tomorrow she gets her IVIG then fri. her bone marrow.

My mom will be coming down for the weekend to keep me company.

If anyone is tring to get a hold of and can't call me at the hospital in her room.

513-636-1523...I am there all day and night except between the hours of 3-7pm.

Again I THANK YOU FOR YOUR PRAYERS. They power of prayer was shown last night when a disaster was averted.

Sunday, April 27, 2003 3:45 PM CDT

This weekend Dr. Filipovich was the attending on call. She says Kharisma is text book. Everything they expect to see is there nothing out of the ordenary.

It is nice that Dr. Filipovich doesn't think to medicate first. Kharismas blood pressure is still high instead of adding to her many meds she is reducing the fluid input amount. Kharisma is retaining fluid in her legs and feet, although she is peeing quit a bit.

I am having a massage therapist come by tomorrow to help eleviate the fluid and loosen her muscles. Dr. Filipovich said that would a good idea.

She is on her last day for ATG and bulsafan(chemos). Tomorrow she gets VP16(chemo) and on tues/weds Cytoxan(chemo). Thurs is a day of rest but she will be getting her IVIG. She gets that once a month for a year I believe.

She is doing so well with it all. Today is very tired but who can blame her with all the meds she is on.

Gary says he is ALMOST done packing up the house. Finally got help from a friend on the ship. He expects to leave before May 1.

That is the news worthy to report.

Please keep your prayers coming remember the toughest time is the 2 weeks after the transplant. Thats when the chemos catch up to her body.

Friday, April 25, 2003 3:15 PM CDT

Okay I have more time to gather my thoughts. A Patient Attendent is with Kharisma and they have been a GOD SEND. They will sit with her as long as I need them. They where very helpful when I had to check out of the hotel, return the rental and check in to Ronald McDonald house.

She is doing very well. She has had to fed through her NG cuz she can't really feed with the NG in her nose. Its like having a nose clogged and us trying to eat. They gave her formula dripped in over night. During the day she still feeds from me but is helped out with some of my expressed milk also. They NG should come out in 2 days as long as she feeds well. It was only placed to give her chemo Busalfan. She would have had to swallow like 5 mls of that stuff twice a day. I think once its gone she should return to feeding as normal. Unless the mouth sores show up.

They have her on SOOOOOO many meds right now I couldn't begin to name them. I do know it is like 3 different anit-biotics and her normal meds. Plus she is now on meds to bring down her pressure.

She does have a bit of a rash on her tummy but they don't know yet why. Her diaper rash looks like it is trying to make a come back.

Yesterday she did receive s already. It isn't that her red count was that LOW just cuz they know it will only get lower.

I am working on getting her Baptised around the time Gary comes here. The priest will be in touch this weekend. Her GodParents are my sister Ann and Matt.

Still do not have info on the donor if I remember tomorrow morning to ask I will let you all know.

Again I will update as I find things out.

OH a little funny thing with numbers. My room at the RMDH is 23, her number on the ward is 23 and she was checked in on the 23rd.

GOD BLESS AND KEEP THOSE PRAYERS COMING CUZ THEY ARE WORKING!!!!!!!!

Wednesday, April 23, 2003 4:42 PM CDT

Thank you VERY MUCH Christy for doing the update. It was better than what I write.

This will have to be short and quick.

Her second Kidney test still read at lower than normal. This is not a problem cuz it is caused by the cyclosporine she is on. Her lungs where clear and healthy.

She checked in today to start the work up for transplant. YES TRANSPLANT!!!!! She startes all the chemos tomorrow and they go till the end of Apr. It is a combo of many different chemo therapies. On may 1 she rests and just receives her regular meds. On may 2 she gets her new BONE MARROW.

They say the toughest time is the 2 weeks following the new marrow. All I know about the donor is it is a perfect match, healthy and a good age. The bonus is the donor is already cmv immune so when the new marrow takes effect she will already be able to fight it off.

An NG tub will be placed tomorrow morning down her nose. They plan to give her oral meds that way. They don't want to risk her spitting any of it up cuz you can't give it again.

Also if at any point she stops feeding from me they can administer my milk that way. She most likely will have formula also and TPN(liquid food). I will give has much as I can.

We are doing well so far. Occupational/Physical therapy will work with her mon-fri till she discharged to keep her on her milestones. If you feel like sending a gift PLEASE let be a toy to help her with her milestones.

I will update when I can or ask Christy to do it for me.

As for Gary he should hopfully get her may 6. I know he is trying his hardest there is just so much to be done.

I updated the hospital address. I believe if you visit the hospital website you can email cards to her. They are printed up twice a day and delivered to her door.

PLEASE CONTINUE TO PRAY FOR KHARISMA AND FOR THE DOCTORS TO HAVE THE WISDOM TO KNOW WHAT TO DO.

Thank you all.....

Monday, April 21, 2003 11:26 AM CDT

Hi, this is Sonia and Gary's friend Christy Fitzpatrick. I spoke with Sonia on Friday and she had a lot of news that she needs to update everyone on..unfortunately finding a computer and the time is very difficult...that's why I'm here! :)

Sonia and Kharisma are in Ohio still and will be STAYING! Not only have they found a suitable and wonderful donor...they have found one that is ready and able to donate as soon as possible. The donor actually wanted to donate this week, but because of a couple bumps in the road and just the way a BMT must go that can not happen quite as quickly as the donor wanted!

Ok, so here is what is going on. Kharisma has an infection called CMV...from what I remember from my daughter's BMT when they explained CMV...it's an infection in the lungs. Kharisma is being treated and they hope she will be healed soon. They also did a kidney function test on her, and that came back low...so they have to wait and retest her to see if her functions are back up.

Sonia was in GREAT spirits and I think was pretty shocked that everything is happening so quickly and seems to be going fairly smoothly!

Kharisma starts chemo for her BMT on April 24...yes in just 3 short days! Her bone marrow transplant will be on May 2. For those who have never experienced a BMT or know anyone..this has happened VERY quickly!! They have also only found the disease in her liver..which is really good. It's not in her bone marrow, CNS, blood, or any other vital organs.

Let all of us keep Sweet Kharisma in your prayers as well as Sonia and Gary.

As far as Gary goes...he now has to pack up their apartment in California and then talk to his company about getting out to Ohio. Please pray over this that it all happens quickly and smoothly. Sonia needs Gary's support and I can only imagine he wants desperately to be with his wife and baby girl.

If I hear from Sonia I'll update this for her otherwise just pray that everything is going smoothly.

Sonia also wanted anyone who wants to have her cell phone number: 619-249-7941

She had to move to another hotel, but I do not think they have a lot of time there...so the cell phone will be the best way to get ahold of her.

Friday, April 11, 2003 8:51 PM CDT

Hello everyone!! Yes it has been along time. This is the first chance I have had at a puter. Sofar she has had a number of things done.

We flew out to Cinn. on Tues morning. Nothing was done that day. Wed she had GFR(test her kidney functions)/chest x-ray and then an Echo/EKG to test her heart.

Thurs. LOTS of blood work to test for all types of infections. They even took some samples from her nose and stool. They tried for urine but she wasn't haven it. They will try again on Mon.

Right now we are in Michgan City visiting family. She has the weekend off and they are only 5 hrs north. I am surprising my grandmother. We will be leaving sunday afternoon.

On mon she has more blood/physical exam to be drawn and her CT and MRI. The CT will scan her whole tiny body and the MRI will take pics. of her brain. All just make sure she is healthy.

Tues MORE blood work!!!!

Wed Meet with Dr. Filipovich and nutrition counselor. Possibly chemo cuz she will be do for her next dose on wed.

We are doing fine. The plain ride over her was not too horrible. It was a 5 hr flight. They change in altitude did not seem to bother her at all. We had the row to ourselves.

I will update more as I get word. Also she may be starting anew med. Fluconazol an anti-fungal med. She will take that once a day. Just more for me to try and remember.

Take care!!!@

Friday, April 4, 2003 11:42 PM CST

For now tomorrow she will get the chemo she missed on wed. Her counts are back up ANC 1,100.

I plan on flying out to cinn on tues till the 18 then coming home to get ready. Gary will be home on leave getting the house ready.

I will most likely stay at Ronald McDonald house. It will be just across the street so I won't rent a car. Although I will have nearly 4 days to see the town.

I should have more news on Mon. Travel still has not approved this YET! I will update again then and while away I will try to keep you all informed.

GOD BLESS!!!!!

Thursday, April 3, 2003 3:33 PM CST

Hello again...

I just heard from Amy Baker the transplant coordinator. They are sending out a request to a donor match to donate. That means she maybe getting the transplant next month. We are fly out to Cinn. next week for the work up I spoke of. The work up consists of CAT scan, kidney function test and test for any illness she could have like a cold. Then we will fly back to basically pack up.

I will mostlikely live in Michigan City again cuz they will be needing to do follow up visits for at least 3 months after. We could do them in San Diego at Balboa but we would still have to fly to cinn. every so often for them to see her. With us staying closer they can help her much more quickly.

I am so scared and nervous. She will be just 4 months old when she has her BMT.

I guess the added rush is her ANC dropping and her Feritin(fighten cells) increasing. Those are signs the illness maybe coming back and they want to do this before she gets sick again.

She rubs her feet together now and plays with her hair in the back of her head. Soon she will be crawling and rolling over. She has grown so quickly in just 3 mths.

Wednesday, April 2, 2003 9:01 PM CST

This will have to be quick she is waking up from a nap.

The ultrasound came back fine. Her liver measured normal and all looked fine.

She did not get chemo today. Her ANC 400 TOO low for chemo. We are going to try again next week. Also her baby wellness check up is on Mon. I think we visit that hospital at least twice a week.

She is doing very well everyone who sees her first thing they say is look at those cheeks. They have gone down a little due to the lessening of decadron.

I am trying out clothe diapers. I only have 5 so its harder having to wash all the time. She still wears disposables to bed and on her hospital visits. Also I am making my own diaper wipes. It may seem like too much hassel but my world could use a little something to take my mind off of the hospital.

Have to go she is getting loud.

Saturday, March 29, 2003 12:56 AM CST

Her ultrasound is scheduled for tues. Then she has chemo again on wed if her counts are high enough. If not then we return the wed after. She went in yesterday for some IVIG which is antibodies. Her count was low but I do not know the number. That is a blood product full of cells that fight infection. It took 6 hours to infuse.

I must tend to my master if she allows I'll try again later.

Also, Gary won't be gone the whole month of april now just the first week. Then they are due to leave April 23-May 17. Hopefully we will be getting ready for her transplant by then.

Don't get fooled on monday!!!!

Thursday, March 27, 2003 1:49 PM CST

Yesterday was pretty uneventfull for once. Chemo went smoothly no complications. I do have to schedule an ultrasound cuz her liver measured a little large. He says it is not an exact measure thats why we need the ultrasound.

She will get her next chemo dose on wed the 2. Which means I have to reschedule her 3 mth check up. She is slowly gaining weight not even 3 mths old yet and weights 12 lbs. She is gaining a pound a week.

My mind has drawn a blank so I will end it here and update again if I remember anything.

Tuesday, March 25, 2003 11:45 AM CST

I know it is unlike me to update so quickly but I just got more info this morning.

I spoke with Amy who is the transplant coordinator. She informed me that we will have a month after they find the donor to get ready to go. Which is nice I thought we would have a day or two. Lot has changed since Christopher had his. She will have an angiotube place down her nose to feed her and administer meds. That will be good cuz they can use my milk I express to feed her still. They even have a room to express in and a fridge just for the milk. They do a complete check up on her before the transplant. It will range from an EKG to CT scan of her whole body. Not to mention the tests on her kidneys to see if they can take what is needed for the transplant. All of this I swear Christopher did not get. The same tests will be run on the potential donor.

Our stay will be for at least 100 days. If all goes well more if not. That is all I can remember right now. Angie is the search coordinator for the bone marrow.

That is all the news for now. I will update as I find things out..

Monday, March 24, 2003 3:41 PM CST

I was going to upload more pics from Linda and Mimis visit. The pics that Linda has sent the files are too big. I will see what I can do.

This wed will be her last weekly visit to the doctors. After this one she will just have to go everyother week. Her meds will go down to everyother week for only 3 days out of the week. One of her new meds is Septra which is an anti-biotic. Soon she will start taking cyclosporen A which is also an amuino suppresent. That one is so strong it can eat through plastic after awhile.

That is the protocal she will be on till her transplant. I don't want to get anyones hopes up but here is a letter from the correspondent for her BMT at cinn.

Sonia
We have one sample from the search that has arrived in our lab to perform further typing. This donor is a potential full match. Those results should be completed soon. We have requested other potential full matches and I am waiting to hear when those samples will be sent. I have an email to my search coordinator at the National Marrow Donor Program to get an update on those other samples. I will keep you posted as I get new information. Thanks for emailing me and please any time you have questions, give us a call or email.

The blood was from her diaper rash...

Friday, March 21, 2003 2:32 PM CST

No word on the blood.

Just wanted to let you all know there is one new pic.

Love you all...

Thursday, March 20, 2003 9:52 PM CST

The past two days have been quit an adventure. On tuesday she had her MRI and LP. Both came back normal nothing wrong in either place. The hardest thing about the MRI was my app. time was 0645. I show up on time and 15 past my app. time they tell me I have to go to the 4th floor to same day surgery to check in. Upset I go there just so they can weigh her fully clothed with a full diaper and ask me questions I could have anwered down there. Then after nearly an hour I carry Kharisma and push her stroller behind a nurse pushing an empty crib. By 0800 she FINALLY got the MRI.

Yesterday for her RSV and Chemo. Her app. time was 0810 I get there at 0800 just to sit and wait till 0925 for her shot. The good thing was when we showed up for her chemo they had everything set up in her room.

At 7pm time to go she had alittle bit of blood in her stool. Then we sat around while they tried to get a hold of Dr. Lande. After 9pm they decided to let us go home even though they couldn't find him. I changed her again to find blood in that one also. They took that one to run some tests. No word yet but I will call the dr tomorrow. I think is just cuz she has diaper rash again and looks pretty raw around her bum. Don't worry I am sure it is nothing. I will update you as soon as I get word.

Other than that we are fine. Gary might be gone for the whole month of April. That should be a fun month.

GOD BLESS!!!! Pray for the war to end soon and all our soldiers to come home.

Thursday, March 13, 2003 9:51 AM CST

Hello again to everyone.

Her ANC on monday was 2,600 well above the norm which is 1,500. On wed. her ANC 2,300 she got chemo and we where out of there just before 8pm.

On wed she had 2 new visitors besides her Nana and Papa. It was Linda and Mimi. As soon as we can get a photo to disk I will post a pick of them. They where all nice enough to stay the afternoon with us in the hospital. Despite the fact that we where left in the lounge the whole night. Yes the lounge! All the rooms where full so we got the lounge. It had a larger tv anyway.

Mimi and Linda bought her some very beautiful outfits. One outfit we will be taking propics in. Another outfit her Nana bought her is this wite dress with blue ribbon and flowers again we will take propics. I will see if I can get those on disc also to post.

On tues Kharisma, myself, Nana(Yvonne) and Papa(Chuck) went to the zoo. We walked what must have been every inch of that place. I am just surprised I am not sore. It was great we saw all the animals all though most where asleep cuz of the time of day. It was a nice way to spend the day.

On sat we are all going to seaworld(Kharisma, Gary, Myself, Nana, Papa and Linda. I think we may have to rent a mini-van so we can park for free together. We will see how it works out.

We are all doing well. On tues. she gets her MRI and LP. Then on wed. her chemo again. That will week 7 of treatment. Starting weeks 9-52 she will get chemo every other week, her steroid 3 times a week everyother week and a new med called Cyclosporin A. I believe it also weakens the immune system. This stuff is so potent that you have to use a glass syrieng cuz it will eat through plastic eventually.

Thank you all for your powerfull prayers. GOD BLESS!!!

Thursday, March 6, 2003 8:13 PM CST

Her ANC 644 made it possible for chemo yesterday. With the first hydration(of 2 hrs) didn't start till 1pm so it took till 10pm that is with us able to skip 2 hrs of post hydration. That was a LONG day. Gary was out on the ship so it was just me.

To keep an eye on her ANC she has to go back on mon for a cbc. It is hard to beleive this will be her 6th week of chemo. Just 2 weeks left in the initial protocal. I am not sure what happens after that. If my memory serves me right she should stop all treatment to see if the disease comes back or if it is undercontrol. Don't take that to be what will happen I have to check with the dr who will check with Dr. Filipovich.

GOD BLESS!!!!

Saturday, March 1, 2003 4:14 PM CST

Still no luck with getting chemo. Her ANC 125 so we are to try again on wed. They say it has to be at least 500..750 would ideal. I signed permission for the search to start so with in 2-4 mths we should have an answer. As excited as I am about her getting this done it scares the s**t out of me.

Not sure if I previously informed everyone about Garys command they are going to work with us on getting him to cinn. That takes stress off of us also.

The dexs. is making her such a crab. It is few and far between that she can just sit contently. She still smiles occasionally.

We have so many wonderful people coming to visit us in cinn. Christy Fitzpatrick, my sister Linda McCrindel, Nicole Hardaway and more.

Not much I can think of right now to share my mind is empty.

Oh we should be Baptising her soon. I want it done before she leaves for her BMT.

GOD BLESS AND PRAY FOR US!!!!

Wednesday, February 26, 2003 11:13 PM CST

No chemo today. Here anc was 100 but her platelets where an amazing 418. She could almost donate. Her spinal went smoothly we should have some word on fri when we return to try again for the chemo.

On fri we will do her counts again and then if her anc is high enough she will get chemo. If not we will try again on sun or mon. Tomorrow I might speak with someone from cinn about the BMT. She left a msg stating that they started looking cuz we having given consent yet. We where under the impression the search had began.

Also I will get a better idea of when we will move to cinn. Hopefully we will get enough notice to pack up the house.

We are all doing well. Not much sleep at night with her waking up every 2 hours. The steroid has increased her appetite. Which leaves little rest for me but she is worth it. I try and take naps during the day when she does.

I have new pics.

Monday, February 24, 2003 4:48 PM CST

Sorry it me longer to update. Kharisma really needs her mommy right now.

As I said earlier Seaworld was fun. We plan to go again with Garys parents. Hopefully before we leave we will go to the zoo and animal park.

They are currently looking for a donor. When they find one we should be leaving. It can take up to 3 mths. Once they find a match then they have find the person, see if they still wish to donate and make sure they are in good health. With Christopher they found his match in Germany.
Tri care is paying for me to fly with her, my hotel and perdiem(money for food). To save money and pay off bills we are getting rid of this place, giving our animals to my mom and placing our furniture in storage.

We figure after she gets out from her BMT she will heal better without the animals fur on everything. We will rent an apartment.

This wed she will be getting her 3 spinal tap. It doesn't show much of her illness but they need good samples to compare. Here they put them to sleep for the procedure. They toughest part is not feeding her for the day.

Because her anc(absolute nutrifill count)is only 85(1,500 is norm). Before they start they chemo they will check her count again and if it is still very low she won't chemo wed. They will just check her count again on fri and then if it is high enough they will give chemo then.

We will have to update a picture of her. She has her dex checks. You will see what I mean later when we get the pics.

Saturday, February 22, 2003 9:33 PM CST

Seaworld was wonderful. We didn't spend muchtime there it was closing in 2 hrs. Kharisma didn't like how dark the rooms were where you view the fish. We saw this cute viser hate that would fit her but didn't get it.

We plan on going back when his parents come down.

I have to go she is hungery update more tomorrow.

Thursday, February 20, 2003 6:29 PM CST

Forgive any mispelling I have Kharisma sleeping in my arms. Due to nagging from my mom I broke down and gave her some formula. The bad part about that is it was regular not soy so she is gasy and craby. I have quickly decided to stop the formula.

As for the chemo. Let me start with sat's dose. She did wonderful as all ways. The nurse she had that night was awful tell you about him near the end. The protocal she is on calls for 2 hours pre-hydration then 3 hours of chemo then 6 hours post hydration. That day she got nearly 4 hours of prehydration then the chemo then full 6 of post. The pre-hydration is to make sure her kidneys are working properly. Usually after the 2 they give the chemo. Dr. Lande decided that the 6 post is not set in stone and after 4(if she is peeing sufficiently) she can be released. This nurse for fear of his job made us stay the full 6. That wouldn't be so bad but he didn't collect any diapers to check her urine out put. Then at 10(after we called for him) he just released us.

On wed she has David and Bob who are wonderful. They are funny and talkative. We should have them from now on. Her chemo treatments are just on wed now. With them we don't stay the full 6 post and chemo is started after the 2 pre hydration.

Tomorrow she goes for a cbc(blood count). Her platelets have gone up on there own since she was released. The count now is 245 well with in norms. The rest are a bit low but not enough to need blood. To help you understand just how much they have gone up when she was released they were just at 64.

Tomorrow we are taking her to Sea World. I know she should live in a cacoon but she should still LIVE.

As for when we are going to Cinn that is left up to the doctors. I have been approved for Tri care to pay for my flight, hotel and food. We should be getting rid of this place and hopefull save money.

Just yesterday she laughed for the first time. It is a goofy laugh you would have to hear to understand. She smiles all the time except now since she is craby. According to my mom and Gary when she crys she says "mom".

GOD BLESS AND THANKS FOR THE PRAYERS

Friday, February 14, 2003 5:19 PM CST

Sorry its been a few days but not much has changed. I would have written sooner.

Her chemo treatment went well. We where able to come home the same night. Granted it was 9pm but we where in our own bed. Which is perfect cuz she has stopped sleeping for hours at night. She is back to the every 2 hour wake up. I don't know if she is getting enough food or just sleeping too much during the day. Her next chemo day is tomorrow then it will be once a week on wed.

Before she gets her chemo on wed she has to get a shot for RSV. The doctor assured me it will not harm her. The shot gives it to her like an antibody so she won't have to fight it off.

Now finally for some really good news. WE GOT CINN. AND DR. FILIPOVICH!!!!! For those of you who do not know her she one of the leading experts on this illness. From what I have heard she has never lost a patient. That diffently has taken a lot off my shoulders.

Also on wed we are to meet with a financial counciler to help fund the move. From what I know we should still be here for at least 7 more weeks. To get the offical word I will have to speak with Dr. Lande her hemonc doc.

I would have to say your and our prayers are being answered. I might have more to report till wed.

GOD BLESS AND KEEP THE PRAYERS COMING!!!!!!!!!

Monday, February 10, 2003 8:43 PM CST

Guess where I am writing from....HOME. YES folks we have just been discharged. The only down fall is we have to return wed. and stay the night. Then do the same on sat for chemo. After that it will be once a week.

I am so tired and glad to be home. I kharisma feels the same way. She is asleep now and soon so will I be.

As for the BMT we are awaiting Tricare approval still. As soon as we get the hospital that will do the BMT they can start the search for a donor. We pray they approve Cinn. We will be at Balboa for the next 7 weeks at least to complete the initial work up/treatment.

Dr. Filipovich has asked for Kharismas blood to start the BMT work-up before we have approval. Also they will be taking more blood from us for what I am not sure. I am sure that it will help Kharisma.

Her diaper rash is all but cleared. The only problem we have with her is her line is bleeding at the entry site. Now docs have looked at several times and say it is just her platelet count or cloting ability that is the cause. She received more vitamin K which should help. All we can do now is change her bandage everyday.

She is doing wonderful now. As we used to say about Christopher...perfectly healthy minus this.

Kharisma sends her love and thanks for the prayers and well wishes.

Saturday, February 8, 2003 8:29 PM CST

Well it seems the docs all need to get together and have one story. She won't be home this weekend but soon. Her counts are all looking good it has been a whole day since she needed any transfusions.

Her main problem now is this yeasty diaper rash. She has yet to sleep in her crib. Still prefers to be held 24/7. I love that but doesn't let you take any breaks.

My mother is here now so if kharisma is not released by mon. I will leave her here and go to the movies. It will be nice to stretch my legs and more than the hospital.

Her chemo went smoothly no reactions.

Take care and God bless.

Friday, February 7, 2003 5:48 PM CST

I just want to start off giving many thanks to all of you for your prayers and well wishes. Looks like they are paying off. A special thanks to two familys who have been overwhelming support to us. First the Vega family: Wendy, Scott, Joyce and Higinio. Also the Fitzpatrick family: Christy, Chad, Jordyn, Jacob and the new baby. You have brought so much support our way. I know there is no way to give back what you have given to us.

GOD BLESS YOU ALL!!!!

Good news she may be released tomorrow. She has her second dose of chemo tomorrow then she might beable to leave. Her blood counts have stabilized and fevers have stopped. I was wrong when I said she would have chemo on thurs.

Today she has been a CRAB. I can't blame her she has mager diaper rash. They gave her tylenol a few mins ago so I finaly got a brake to leave. Last night she was in her hold me phase. I don't mind I am glade she wants and needs me its that I was exhausted.

We sent of permission for them to do a study on her. That way they can find out how she got it and them maybe find out how we have it. The doctor believes we have a mutation they haven't discovered yet. Again I was asked if Gary and I were related in someway.

As for the photo album we are having difficulty in uploading pics but as soon as we can we will put pics up. On last tuesday the Padres came for a visit. She got 3 autographs: Jarvis, Walker and Picciulo. To prove it we have a pic of her and Jarvis/Walker. Who knows what team she might meet in Cinn. Her brother met a player from the Washington Red Skins and got an autographed penant.

Wednesday, February 5, 2003 11:41 PM CST

Okay where to begin. Yesterday we got the MRI, Spinal and Bone Marrow. All came back clear no trace of the disease. The doctors is not directly saying it but it looks as though she has a better chance than Christopher cuz we found it earlier.

The big thing now is we are tring to go to Cinn. Ohio for the BMT. That is where all the experts are. The paperwork has been started now Tricare has to approve. If not we will be going to UCLA a fine BMT place just not with the experts.

I am already thinking ahead as to what will I do with animals, where will we live and who will take care of the house hold goods.

She has received her first dose of Chemo and will be getting another at 0230. So far no problems with it. The only bad thing is the steroid and zantac are pushed through her line. She will not swallow any of the meds.

To help find out how she got the illness from us we each gave 5 tubes(47cc) of blood. The results won't help us but it could help other familys.

Right now the social worker is tring to get Garys ship to let him go. They are being such pains. Keep asking how serious the illness is even after Gary told them she could die and they already know of Christopher. This will be a fight!!

Monday, February 3, 2003 10:12 PM CST

Well plans changed again. I would go over it step by step but I would lose you all. It made my head spin how much the plans kept changing.

They decided that the risk was higher with placing a pic-line so she go the broviac. They gave her platelets before, during and after surgery. There was a little bit of bleeding but she did wonderfuly.

Now she will be getting her MRI, Spinal tap and take some Bone Marrow. Here they like them asleep for these things. The hope is to start chemo tomorrow night.

Dr. Lande(hemonc) is going to ask Dr. Filipovich if there is anything she needs from us or Kharisma to find out how she got it. It seems we carry it in away they haven't found yet. You could say we hit the lotto in finding a partner who carries and having 2 babys affected with the illness.

Monday, February 3, 2003 11:55 AM CST

A change of plans slightly. We are not getting the broviac today as planed. Instead we are getting a pick-line which is like a broviac but it goes in the arm. If the vein is good enough they should beable to draw bloods also but the main thing is to give chemo.

Yes they are starting chemo and steroids. That should help keep her platelet count high enough to place the broviac later. Another suggestion they had was giving her platelets as they place the line.

Since she will be a sleep when they place the line they are also going to do the spinal tap. The hard thing is she has not fed since 240am.

Right now Gary is informing his ship and trying to escape(the ship) to come back here. We are doing as well as can be expected. Tired not getting much sleep, having difficulty eating. I should lose some weight with this:)

Thanks to all of you for your prayers and for signing the guestbook. Your words of encouragement are helping. I feel so stressed I can't think straight. Just walking around in a daze hoping this all to be a dream.

Her Hemonc doctor is Dr. Lande. Actually the only hemonc doctor here. He too is very nice.

If plans change again I will be sure to update.

GOD BLESS

Sunday, February 2, 2003 5:33 PM CST

As most of you already know she is in Balboa NMCSD. We got here late friday through the ER. She presented with a fever and with us thats all it took.

I quickly informed the drs. about Christopher and that got the ball rollen. They gave us our own room with is wonderful. I plan to stay here till she can come home.

Tomorrow if her platelets are high enough she will get her broviac. If she can then no food after 3am. That will be tough with me breastfeeding. They say they have a pump I can use to ease the pain.

As for tonight she has to get a chest x-ray. I was informed she will not get bloods drawn tonight but tomorrow morning.

We know you all where hoping, like us, that this baby would be healthy. Now we just prayers that she will beat this. Her brother is looking over her from up above.

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