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May 7, 2009 10:30 AM
The endocronology appointment went well. We went over a lot of things with the doctor and he will be getting a lot of information regarding Katia's transplant, the radiation used, her medications used prior and post transplant and see what can possibly be done. He went over our family histories and of course looked at our heights:)
He explained the risks of growth hormones and will have to look at all the gathered information to know the hopes of growth possibilites.
All in all we were very impressed. Our next appointment with him is in 3 months or so.
Between now and then we have labs to do and some other tests. And depending on those results, he may order more.
So, we don't really know what can be done but we feel confident he is the right person looking into what can be done.
On to the "How is Katia?"
Katia is having quite a few tummy issues right now with cramps and nausea so we handed some "stool" yesterday to see if anything grows. Her little munchy appetite hasn't been too great lately due to nausea. So, hopefully they can find some answers in her poopies.
Until later....
Lots of love, Tracy
May 2, 2009
Counts from 4/29
WBC 4.19
HGB 14.0
PLT 386
FK506 5.3
Creatinine 0.31
Infusion IVIG and Pentamindine
DEXA Scan Results from April 2009
Whole Body -3.5
Lumber Spine -2.7
Left Hip -2.9
So, there are the numbers.... basically the labs look pretty good. The Dexa Scan results do not. Anything more <-2.5 is osteoporosis and we had hoped for some improvements as we have gone down some on the steroids and Katia is bit more active. She isn't able to run around but she is more up and down around the house. Her "Whole body" number went all the way from -3.1 to -3.5 so that wasn't good.
She has had a cold that is really bugging her for the last few weeks and has been having issues with nausea and a sore stomach so she isn't wanting to eat... She kind of goes through these times it seems.
On a new note, she is going to see a Pediatric Endocronolgist this Monday so we will see what they say as far as any growth hormones and a few other questions we have. Katia has been the same size for years which in many ways hasn't been an issue due to so many other concerns for us nor Katia. It is actually kind of a concern for Katia if she grows. I think she is used to being the size she is.
Her eyes have really been giving her grief these days as the Florida sun does its thing... you know, coming up in the morning and shining. So, she has been pretty attached to her sunglasses, THE sunglasses. I had to work on those the other day. They are really quite a special pair because they seem to fit her perfectly and are really dark which seem to be hard to find. She gets a lot of compliments on them and they were just a pair I picked up quite a long time ago, didn't pay much for them as I have a bad habit for leaving things laying some place and walking
away.
So, that is kind of what is going on here:)
I will update (hopefully) after the endocrology appointment. If I forget, someone on Facebook remind me please...
or someone send me an email, "Tracy, you are forgetting something!"
I tell you, the closer I get to 40 (just a few months now), the more I need reminders and then reminders to check
the reminders...
Lots of love, Tracy
April 3, 2009
Katia as of recently has been reviewing for her classes and doing testing with her teacher. She gets nervous mainly because she expects a lot out of herself and she stresses over anything coming up whether it has to do with school, clinic or having something done at the hospital. She has always been that way. So, on Wednesday she finished up testing with some Math tests and she was done! Spring Break;)
As you know, not too far back, Katia was having many months of issues with choking on pills at first, then solid food and finally almost anything. It took a while to figure out what to do after not really finding out the cause of all of this. She had her throat dialated during an endoscopy. The biopsies and procedure really did not show a cause only that the esophagus was very much tightened and her esaphagus was dilated at that time. After some time to heal, her throat has been a LOT better. She is so happy about this and so are we and her doctors. The biopsies did not show anything.
Her issue right now has been her "bottom end" and "poops" again. This has been such an issue for Katia since her diagnosis. She gets really upset when it comes back because it really causes her a lot of pain when she tries to use the bathroom and cramping when she is not trying to go. The reasoning is that she seems to not only have hemrohoids (I usually mispell that word) but she is also positive for C-Diff again. It has been while since she has had this actually. So, she is on a 10 day course of antibiotics which she is happily taking and hoping she will feel better soon. She has about 3 to 4 BM's a day and each one really hurts so she hopes this will clear up soon.
I always wonder what she will think when she reads this journal one day.... (OMG what was my Mom thinking???? Poop talk!)
So, basically her eyes actually still remain the same and we have settled on the fact they will remain so until her body fully accepts the transplant. Katia understands what that means. She gets eye drops to help keep them moist which she helps and I am kind of a sucker for her whining about them. I realize her eye problems before diagnosis. Her eye issues started January 2002 and her diagnosis April 15, 2002 (we are coming up to the 7 year mark not too many days from now - tax day). She hated eye drops long before cancer entered our lives.
Her mouth is showing a bit of signs of either flaring up or something again so we are working on getting the mouthwash that worked before. There is an insurance issue right now though. We will try to get it worked out though but it is a special mix so it becomes an issue. It shouldn't have to be.
On a very good note, Katia's reading has continued to show slow but steady signs of improvement and not only are we proud but so is she. There is a bit of twinkle in her eye. I am waiting for that voluntarily picking up of a book to sit down and read but I know her eyes are an issue also.
If I haven't said so lately, she is my hero!!
Love, Tracy
PS The picture at the top just captures Katia and her full personality on a daily basis! That is her day to day:)
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April 2, 2009 12:36 AM (yep it is late...)
I will work on getting an update on here and the last counts. There is actually a couple of things to update about. I keep in touch with quite a few of Caringbridge people via Facebook but I need to get on here and actually do a real update. So, that is my task for tomorrow or at least by Friday PLUS I have a cute new picture for the top.
There are some pics I can add from the recent modeling show with the Pediactric Cancer Foundation's "Fashion Funds the Cure" as well. I didn't do too well taking pics this year but I have a few. Katia still has very sensitive eyes so expect sunglasses still...
My health has still been yuck so I am not as on the ball as I used to be but I can catch up here and I should update my blog as well at some point...I already know the title:)
So, check back:)
Love, Tracy
March 16, 2009 6:15PM
The Fashion Funds the Cure Modeling Show went well. Katia's teeth (or the lack thereof) healed up pretty quickly. They are still sore on and off but she deals with it well. We haven't scheduled when the next two up top will come out.
She has testing coming up this week in school so she has been doing quite a bit of review work and saying her brain is "juiced"!
Hopefully Spring comes in for everyone because we keep up with everyone's weather and I know I am beginning to feel guilty for Florida's weather...
Sending Sunshine where it is needed. Well I know some places have sunshine but it is still cold so we will sending some warm sunny weather:)
Love, Tracy
March 10, 2009 9:00 AM
Time for an update:)
Katia's throat has improved and although some things are still out such as some pills, Katia is able to take her codeine pills (which are small) and she is able to EAT!!! She still chews her food up quite a bit and for a while BUT there has been absolutely no choking episodes!!! That is wonderful and we are all so happy and thrilled. Katia is just happy to be able to eat regular foods again. So, she has had her McDonalds, KFC and Subway again. She of course is still a big fan of mashed potatoes though as well:)
So we will leave well enough alone and stick to her liquid medicines and the fact that Katia can enjoy her foods.
Hopefully what was done will keep her esophagus open. Still no real idea on what caused this.
The other thing that has gone on is Katia had 2 teeth pulled yesterday from the bottom, These just would never loosen up. These are the 3rd and 4th baby teeth she has now lost. When they were pulled out, they still had the long roots on them so we were able to see why they weren't going anywhere. We also found out she will be right back to have 2 more pulled out on the top right next to her two top teeth. She of course handled this like a champ and had a Frosty on the way home. She was planning around the Tooth Fairy's visit and figuring out what she could eat when she was able to eat. She did end up with some stitches and some packing due to the roots and some bleeding but this morning she is just fine.
Tonight is the Fashion Funds the Cure Modeling Show with the Pediatric Cancer Foundation at Saks of Fifth Avenue and Katia is really looking forward to going. She will be in the Alumni walk which is with the group of girls that closes the show. She always likes getting her makeup and nails done:) It is a really great evening and a lot of clapping when each girl has their moment on the runway. SAKS completely shuts down for this event and the store is just packed for this fundraiser. It is sad to see new girls because it means new diagnosed girls, it is comforting to see returning girls because we are all in this fight together and we know how important each day, month and year is and the hope for new treatments and a cure is. It is heartbreaking to know some of the girls who have once participated are no longer with us and our hearts are with these girls and thier families and part of the show is in memory/honor of them. Not just the previous girls but many patients who are no longer with us. Cancer is such a horrible disease and the fight to beat it is a daily fight for so many. When someone passes, their family is still in that fight, their loved one is never forgotten. Their heart will go on, their cancer died.
Love, Tracy
February 27, 2009 2:33 PM
Hi there:)
Okay, so how is Ms. Katia today?????
Well, her throat is feeling better:)
Yesterday it was feeling sore and bumpy and she wasn't very happy. Today she had some Mac and Cheese (yeh, she has been missing that stuff a LOT!)
And she looked quite happy eating it.
When she was done she told me that she had 3 noodles in her mouth at once. She still chews and chews and chews, but that is a good habit anyway. But, she was so happy she could eat it and not worry about choking. So, not only was she not choking but she wasn't even worried about choking. She trust her throat.
She says she isn't ready for anything crunch yet but she has a lot of stuff she has been missing. She had some chocolate cake last night. She doesn't have a huge appetite but she likes food so she likes to be able to eat what she wants to eat. She has missed McDonalds and used to love the drive through on the way back from clinic as well as KFC. That used to be a big thing after a long day. She has been pretty stressed for a long time.
What she had done will hopefully do the trick (I think it will). It isn't a permanent fix but there isn't anything that says it won't last. We still don't know what caused the issue so there is nothing saying it will or it won't happen again. We just hope it won't. Right now, the little Ladybug is pretty happy and it's today that counts:)
Love, Tracy
February 26, 2009
Katia's procedure went well. They were able to do but the upper endoscopy did show quite a bit of tightening of her esophagus in one area so they were able to dialate that area. We aren't really sure what that will accomplish yet due to soreness and swelling which should subside by Saturday or so. Katia is still quite sore this morning and tired. She didn't sleep the night before as she was anxious knowing they were going to do "something" to her throat. She normally isn't anxious before procedures because she knows she will be asleep even though she may wake up sore. Her throat is her area that has been giving her issues. She is VERY hopefully this will allow to eat normal again so she was looking forward to the procedure at the same time.
Thank you for your prayers so much!
She did get down some of a toddler meal last night and some cold drinks. She was going to try an Italian Ice.
If need be here throat can be dialated some more BUT we are hopeful this will be enough:)
Tracy
PS I will add her counts later...
February 22, 2009
Katia's appt. has been changed to Wednesday sometime. Well, should be for Wednesday. I will update when I know for sure. Tracy
February 20, 2009
Wow, am I getting late at updating.
First the counts from the 9th.
2/9/09
WBC 2.68
HGB 14.1
PLT 375
Creatinine 0.33
IGG 590
Really, those are good. WBC is low but the rest look good. As far as the results from the swallow tests that were done that day, it did show narrowing or obstruction of some type in the esophagus. She has an appointment for Monday with a GI on Monday for an upper endoscopy which will look in there and see what they find. If possible, they can maybe do something corrective while they are looking as far as dilating that area or if there is something there that needs to be biopsied or sampled, then they will do that. If not anything else, then they will just get another view. Hopefully, the problem is fixable from there because it is getting more and more bothersome to Katia. She just doesn't like to complain really. She has done her best to work around the situation but really, she loves food. Surprisingly she hasn't lost weight. That is a good thing.
So, Monday she will have that done. I don't know the time yet. We just found out the day today. She'll also have her regular clinic visit and Pentamindine infusion on that day as well. You know, that same thing I am just know posting the counts from the last one?? Aside from that, Katia has been having some up days and down days. She has had some long nights of not sleeping and just staying up somewhat due to her eyes but also she is just a bit stir crazy sometimes (well more than sometimes). She is nine now. That is a big age. She has a few favorite things she likes to do and most really have to do with what her counts are. She is a girl and she is 9 so she likes to shop... Her counts don't agree with that. We have figured out a few safe ways to that at certain times but also we have to work that in with our own abilities. She also likes to get Fozzy out. We all do!!! He is family:) He is not very well behaved though. We took him to the park and have been working with him a bit on heel, sit and stay. Well to be fair I don't work with him as often as I should. Anway back to his faults... So, we take him off the leash for a couple of seconds and what does he do???? He takes off like a jack rabbit after a bird!! This field is huge! Around the house, this dog is a pampered lap dog and quiet. He plays when he is played with, rarely barks and never ever acts like he knows he is a dog. Suddenly he is acting like a hunting hound and we all darted after him. Well, Katia was swinging on a swing totally oblivious to what was going on. So, the lesson learned is Fozzy is waiting for a moment to escape and we are totally out of shape. There is also a leash law for a reason. Lack of self-discipline in the K9 community! (Sorry Fozzy but you and your leash are buddies)
So, that is a catch up on events:)
We have the upcoming Fashion Funds the Cure Modeling Show at Saks of Fifth Avenue. I think it is March 10th. Katia will be with the Alumni Girls this year. She is really looking forward to it. She loves the makeup people and seeing the other girls and people. The past years have been really fun. No matter how she is feeling, she is eager to go. Last year she was going through quite a lot of pain before and during the Fashion Show and after but the event is such a nice thing for everyone involved and is really for such a great cause. This year, Katia's GVH has stayed much more stable and has improved on some areas of her body so that is a great plus. We have weaned some medicines and are going down on others. Being homebound, this event is a great thing to look forward to. Plus, it is at Saks so it is a beautiful set up! The walk down the runway is always fun and everyone makes the girls feel very special and gorgeous when they cheer and clap (of course the parents feel very good as well).
The event is also remembers those who are no longer with us and the search for a cure can never get here to quickly. Everyday people are diagnosed and everyday families are facing these tragedies. For us, we live each day with a miracle in Katia. It is both humbling and at the same time something that reminds us each day to join in helping any way we can. If you haven't dropped by the Katia Solomon Foundation Website lately, you can see what has been going on recently. A new program started up which is under Current events. Hopefully we can keep it going as it has been something that had a great response and has definitely filled needs for many people. It definitely can continue to do so.
Have a really good weekend. We are planning on a quiet weekend (those are the best kind) and hopefully Monday brings some good results. Oh, it has been great having some of you drop over on Facebook:)
Love, Tracy
February 4, 2009
Updating from one birthday to the next for Katia!
So, tomorrow will be another big day for Katia. Tomorrow will be 5 years since Katia's Cord Blood Transplant. Yep, it has been 5 years! Without that transplant we wouldn't have just celebrated her 9th birthday nor her 5th, 6th, 7th or 8th.
We know how blessed we were were with that match being found in the Cord Blood Bank. Katia knows what a miracle that was! It has been a blessing to be able to share with others her story and also the need to help that registry to grow.
Katia has battled Graft vs. Host disease which is rejection of her transplant. Her transplant wasn't a perfect match but it was as close as we could find at the time and we were at a point we had to go forward with the transplant right away. Katia is here and cancer free.
Katia progresses as each year goes by. She is slowly progressing in her reading which has always been a big goal. She is much more active which we notice especially around the holidays because we always think back to how she was able to participate the previous year. Anytime we think of what Katia's issues are, we also think of the MIRACLE she IS.
Our hope always is that her body will fully accept the transplant, her eyes will become pain free and her site will be clear and non-sensative to light, her skin will clear up and her bones will become strong. Right now, she is to go in and have some more tests done for her her choking issue on February 9th. so please keep her in your prayers. She really wants to find out what is wrong so she can go back to normal and eat what she wants. She has had a few tests run and it appears there is something blocking the esophagus.
So, tomorrow I am not sure what we will do but I am sure they will be cake involved:) Like Donkey said in Shrek, "Everybody loves CAKE!!!"
Love, Tracy
January 26, 2009
Happy 9th Birthday Katia
We love you!!!!
January 22, 2009
So, guess what is right around the corner!!!!
Katia turns NINE!! Can you believe it??
When I started this site, she was 2 years old! Yep, 2!
On the 26th, she will be 9!!
Right now, she is gleefully around here in that famous ladybug dress that everyone has seen so often since she was 3 years old and very very excited about her big birthday, the last of the single digits. She has gone through a LOT of changes. Her big "like" right now? HELLO KITTY and the singing group, "McFly". If you haven't heard of them, they are a band out of the UK. Tatiana got her into them and trust me, I think I know every word of every song.
So, in 4 days, she will be 9 years old.
Here is a fresh picture from today of her and her teacher she has had for the last few years, Ms. Michelle!!! Note the dress Katia picked for today, that Ladybug Dress. It definitely has held up over the years because she picks it a LOT! It is soft, has ladybugs, and she just loves it! It also has a matching hat:)
Katia and Ms. Michelle 1/22/09
Katia has been very excited with her cards coming in the mail (thank you!) and is very eager make her wish and blow out her candles come Monday:)
As we were watching American Idol last night and she was commenting on each contestant, I told her, "You definitely sound like a 9 year old." She ask, "Is that a good thing?" I told her, "Yeh, as long as you sound like a nice 9 year old." She was sitting there all propped up on the sofa with pillows and toys kind of glancing now and again but mainly just listening due to her eyes but she was definitely multi-tasking and she is right there as one of the judges. She has a great ear for music! She doesn't like it when someone is treated unfairly but when the cut has to be made, it might as well be done early on than dragging it out... She is funny:)
Well, since I updated last time, Katia had an issue with her foot that she just suddenly had the ball of her foot start bruising and swelling? We went in and had x-rays done and had it looked at, did labs and none of the tests or x-rays showed what happened. A few days later, the foot started going back to normal and now looks back to normal. So, all in all it worked out but none of us know what happened.
Okay, I guess I should post the counts from last clinic visit since we go again in two days. I may have already posted these but I didn't look so this may be a repeat.
1/08/09
WBC 3.49
HGB 15.1
PLT 401
Creatinine 0.20
Today was a cold cold day for Florida so this is a picture of Katia outside! 1/22/09
Love, Tracy
PS If you haven't visited www.ladybugkatia.com and www.katiasolomonfoundation.org lately, drop by for a visit. The Foundation has had quite a few things going on which can be found under Past KSF Events and Current Events. The www.ladybugkatia.com page has links to other sites to visit and a link to a Playpage for kids:)
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December 31, 2008
WBC 3.66
HGB 14.5
PLT 379
Creatinine 0.28
So, the last entry for 2008... WOW!
This year has not seen Katia admitted at all and Katia has gained more and more energy. Katia is learning to read
more and more and is enjoying her classes with Ms. Michelle. In a few weeks, this little girl who has beat so many
odds will be turning 9 years old and she has really been through quite a lot in those 9 years. However she is
still, in many ways, a typical 9 year old. In quite a few other ways, Katia is not typical at all. She is Katia the
Ladybug:)
Throughout the last 7 years, so many of you have shared the ups and downs with Katia and the laughter and tears
(more laughs). You have seen tons of photos and heard so many stories of what was going on, decisions being made,
day to day things and even sentences she was learning to read or you have even seen pictures she was drawing. A
great many of you are in the "Ladybug Club"! Someday we will add more members.
In many ways it is as though Katia doesn't change and in other ways she changes rapidly. She is like 9 going on 30!
We are just so blessed and grateful for every miracle Katia has been blessed with, our family has been blessed
with. Through difficult times, it is hard to stay down long when we focus on blessings.
As 2009 is fast approaching (now just hours away), I am sure there will be days of blessings and days of trials.
Throughout past trials, I have learned to never lose hope and to always rely on God.
I have had quite a bit going on recently with my own health so I have slacked a lot with updates and posting some
of Katia's recent labs. I have tried to start blogging (link is at the bottom of this site). I was sending out the
updates also to a list of email addresses which I haven't done for months so if you were on that list, I am sorry.
I appreciate everyone that stops by and continues to keep the little Ladybug in their prayers. Katia should be
going in for a barium swallow test to find out why she is choking with her food which I will update on (sooner than later I hope).
Much love to you.
Tracy Solomon
www.tracysolomon.blogspot.com
December 24, 2008 8:45 PM
Merry Christmas Eve, almost Christmas:)
Katia is very very eager for an hour to go by so she can go to bed and Santa can come. This really has to be one of her favorite bedtimes of the year! The next would be her birthday when she wakes up a year older. She is actually only a day older but you know how kids are:)
Her clinic appointment was changed to Friday instead of today so today was kind of spent catching up and we actually watched a Christmas movie. For me to sit through an entire movie is not an easy thing. I have a really short attention span, really short. We watched Santa Clause 2. The last 2 days, we have watched Tinker Bell twice! Two full times. Katia has been in shock. It really is a cute movie though.
Katia has really changed so much since last Christmas, especially in her vocabulary and her desire for independence. She is learning to do things on her own. Seeing her growth is quite behind her abilities, we have made changes in the kitchen for her to be able to get to things on her own that she likes to get to. She likes to make her own snacks and such. She used to try to climb up on things but she definitely understands the danger behind doing that. Even with a stool, her arms are short so she can't reach things on the counters, so she has managed figuring out ways of reaching things and her favorite words are, "I can do it."
Along with the "I can do it" attitude comes frusteration when she can't. Sometimes she is unable to and other times she is not allowed to. She has a real "talent" for making her point (notice I left out the word "arguing"-oh, I guess I just stuck it in there!).
Throughout the day though, if you have kept up with Katia throughout her first treatments, relapse, transplant and since, you will know what I mean by this. I think about how thankful and I am to just have her home and into a "normal" routine of doing things in the kitchen, telling her to pick up her room, giving her baths, helping her with school work, and now waiting for Santa to come.
The little things really do matter:)
Please remember all of those that are fighting these diseases, are hospitalized during the holidays, the families of those that have passed on and always please pray for cures.
Love, Tracy (and Ladybug Katia!)
December 22, 2008
It has been a little while since I updated on Katia. She actually has a clinic appointment coming up for Pentamindine on Christmas Eve but I wanted to go ahead and update anyway. We hope everyone is having a good holiday season so far (and a safe one).
Watching the news, those of you who live up north are having some pretty rough weather in some areas and very cold. Makes me glad we in Florida. Don't get me wrong, snow is very pretty but I personally get cold in the freezer section of a grocery store. I can't imagine being in cold weather on a daily basis.
We do all watch the movies and think building a snowman looks fun or having a snowball fight looks exciting though. Katia is very eager for Christmas. She fell asleep under the Christmas tree a few days back while I was typing something. I guess my typing was boring or made a soothing sound:) It pretty well zonked her and Fozzy out on some pillows and a blanket Katia had under there.
Katia is doing pretty well. We have all had a cold in this house. Mine turned into a horrible cough and then ended up causing breathing issues which I am just getting over. I still have issues here and there. We were very grateful Katia seemed to be avoiding everything. About a week ago, she came down with "gunk" as she calls it in her throat and nose. But decongestants seem to be keeping her clear. So far so good. She will have the "gunk" sampled at clinic just to make sure it isn't an infection.
It's been nice connecting with a few of you over on Facebook or in the blogging world. Both are linked here on the site. Facebook is my email address. tmsol87@aol.com and the blog is at the bottom of the site.
Katia has received a lot of Christmas cards. I am amazed at some of the cards people can make by hand and some of the art kids can draw! Such sweet cards and thoughtfulness in sending them. Thank you so much:)
Our family wants to wish everyone a very blessed and Merry Christmas.
Love, The Solomon Family
December 4, 2008 8:45 AM
WBC 2.37 LOW
HGB 14.1
PLT 363
Creatinine 0.29
IGG
Yesterday I took Katia in for a video swallow study. She has been having more and more choking spells. First it started with certain pills and then one by one we switched her medicines to liquids. Then she started choking on foods, not all of the sudden but one food at a time. Same thing, just started not being able to tolerate this food and then that food. Katia loves to eat so she wasn't willing to start crossing foods off the list. She just would try to chew and chew but that wasn't sufficient so certain foods she just won't eat.
This choking was getting bad enough that it was making her feel as though she would lose her breath. So, the swallow study was lined up.
They said to bring in some things that would cause her to choke her to choke which of course had Katia upset so I let her pick. One thing was corn. That doesn't always make her choke because she has learn to chew it to a liquid practically. The other was a pill. She used to take 12-15 pills in the morning and same in the evening. Some were big capsules.
She was very nervous going in. When we got there, they had a big barium (sp) pill for her to take so they could watch it go down but Katia freaked over that. It was like 5 times that size of the pill we brought. It was the size of a Tums. So, they cut that in half for her to take. They mixed barium powder in the corn, some pudding, some strawberry milk and Teddy Graham cookies. The idea is for her to chew this stuff and eat it and we are able to watch all of this and see how it goes from her mouth, down her throat and down, either to her windpipe or through her esophagus. So, being the child Katia is, she wanted to get the hard-to-do stuff out of the way first. So, she wanted to do the big pill first. She did and we saw that it didn't go into her windpipe but it went into her esophagus and to a certain point and got stuck. She started choking and coughing and crying like she does at home and we were able to see the pill sitting there (which was quite a way down) and then somehow, Katia is able to get the pill up and back out. Remember this pill is about half the size of a Tums. So, we ask if she is willing to try something else with this pill. She hesitantly agrees. She wants to find out the problem so she can stop choking also. The next thing is to take the pill with pudding. We try this and the pudding goes through but the pill doesn't. But what we notice is even when the pudding is going through, there is an area in the esophagus where the pudding seems to thin way down.
The cookies were next, Katia chewed them down to nothing and swallowed them fine. The corn, we gave her three kernels and she chewed them again much longer than most people and then swallowed them one at a time.
Lastly, we gave her the strawberry drink and everytime she swallowed, we noticed the area where the pills got stuck which we ended up having things get stuck a total of 3 times, the drink would thin out nearly to nothing and then expand back out. So, this test shows us where the problem is but was not the correct test since the issue is actually not choking in the windpipe.
So, Katia will be referred for another test. It does show us there is an actual issue and it isn't that Katia is nervous or panicking or not chewing her food properly or anything of that sort. The liquid is having a hard time going through. I was amazed at Katia's willingness to repeat the choking to give us a better look at the problem. Even knowing what the outcome would be doing it over. She is willing to try. She is always willing to go through the testing she has had to endure through all of this since she was 2 years old and as she gets older, she understands more of the necessity of things. She can also be more detailed in her explinations of the problems and even give an idea of what she thinks needs to be done.
I am so proud of her:)
Love, Tracy
November 27, 2008 10:30 PM
Wishing everyone a very Happy Thanksgiving:)
Katia is busy watching the Macy's Thanksgiving Parade. She had a pretty late start this morning but she is ready for her Macaroni and Cheese and Mashed Patatoes! A little turkey on the side. Not much meat for her tummy right now.
Fozzy is ready for his turkey too!!
Katia is just eager to see Santa roll in on the parade and mark the beginning of the Christmas season so she can officially listen to nothing but Christmas music 24 hours a day:)
I am not sure if I updated after last clinic visit, I will have to check and I still have to figure out if we are going to do clinic Monday or Tuesday. My own doctor appointments are conflicting with Katia's so we are having to schedule things around eachother. Katia is needing to get a swallow study done as she is still choking on a lot of things even more than just a month ago so the problem is worsening and recently the problem of getting lightheaded during these episodes is causing more concerns so we are hoping to do this study at her next clinic appointment this coming week.
Other than that, she seems to be about the same, counts about the same, energy about the same, appetite, etc.
We have much to be thankful for today on Thanksgiving and always we keep many in prayer.
Thank you for checking in and keeping Katia in your prayers.
God bless, Tracy (and Katia who is now right here watching what I am doing!)
*******************************
November 11, 2008 10:30 AM
Happy Veteran's Day to all Veterans.
Also remembering those families who have lost a loved one while serving in the military.
So many of our soldiers have not only gone to war but have been sent numerous times. Military families serve alongside their soldier by enduring this hardship not knowing whether their loved one (husband, wife, Mommy, Daddy, son, daughter,sister, brother, best friend) will return, running a home without the other parent, answering the many questions children ask that know more than they are sometimes given credit for knowing...
Having been a military wife, having my soldier go off to war, I was so grateful to have him return home. Coming home can be different for every soldier.
God bless our military and each soldier and their family.
Happy Veteran's Day.
((((((((((((((HUG)))))))))))))))
November 8, 2008 12:50 AM
Wow, I still haven't taken the pictures off the camera from Halloween... There has really been quite a bit going on but it will happen. I actually plan to just put the Halloween picture down here and put a really nice picture from the beach (yes the BEACH!) up at the top of the page since it will probably sit up there for a while. I know for a lot of you it is getting cold but here in Florida, we had a few nippy days but it is warm again now. We went out to the walk on the beach October 8th and Katia took her trick or treating pumpkin out there with her. They are cute pictures. Now that trick or treating is done, she is just talking about Christmas.
I have had quite a few doctor visits going on recently and more coming up. The details have been on the Message Board but I decided to try to get back to posting them on the blog I had started which I just couldn't seem to get the hang of figuring out how to work so I changed over to a google blog (much easier). So, here is the link, Tracy's Blog which is also can be found on the www.ladybugkatia.com and on the bottom of this site. I will really try to keep it updated. I like to keep Katia's site about Katia as much as possible.
Her guestbook is down right now due to spam but I am going to get it back on and hope it stays good. Please email me if you see any spam.
Lots of love and I will tie a string on my finger about getting the pics on. My goal is by Sunday:)
Katia scored good for Halloween, had fun as a mummy! Her eyes are really bugging her though so we are doing antibiotic drops right now. Her belly isn't her buddy right now either but she is moving along. Hopefully she will feel well for Thanksgiving. She doesn't eat much right now again. She is pretty puffy looking though.
Fozzy is hpyer these days as well and has Katia pretty bruised up so we have him on some "calm down" rules.
Thank you for stopping by and checking in:)
Love, Tracy
Halloween 2008 Pics
October 29, 2008 11:45 AM
WBC 3.03
HGB 15.4
PLT 364
Creatine 0.40
Height 97cm (3' 2")
Weight 18.6 kg (41)
It has been a bit since I have updated actually. I don't think I actually posted Katia's last counts on here from her previous appointment. Myron took her as I was on bedrest. I am feeling quite a bit better now. Katia received her Pentamindine infusion yesterday as well as her IVIG. Everytime Katia gets IVIG, we are so grateful for the many blood donors it has taken to achieve the IVIG she is recieving. Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors). IVIG's effects last between 2 weeks and 3 months. Katia usually receives this every 6 weeks or so depending on her IGG levels.
Katia has been very excited for Halloween to get here! Very very excited!!!! She decided a while back she was going to be a mummy:) We have been on the countdown to Halloween since around day 45... Two days to go. Usually she gets in about 20 minutes or so of trick or treating and that is about all she is up to and ready to check out her candy stash.
October has been a full month for us and there are still a few appointments to get through. Thank you so much for your continued prayers.
We had a very nice day this past Sunday. Although it is getting really cold up north (actually here in Florida yesterday and today also), we went out to Clearwater Beach and walked along the shore so Katia could collect some shells and chase a few Seagulls. It was really nice. I will post some pictures. I will probably get the Halloween pictures up first though and then the Beach ones. She is eager to get all wrapped in gauze. She picked something comfy, non-itchy and easy to get in and out of. Really thought this year's costume through:)
Hope everyone has a fun and safe Halloween weekend. I will hopefully add the picture on here for Halloween night as soon as she is all "wrapped up".
Love, Tracy
**********
October 21, 2008 6:45 PM
10/22 Update: Concerning the request below for the family needing help to get to New York, the surgery date has been postponed. Thank you for your prayers and inquiries. Please keep this family in your prayers as they continue to face many upcoming challenges. Love, Tracy
**This is concerning help for another family which needs immediate attention. If you can possibly help, please email me. tmsol87@aol.com
This is for a 2 1/2 year old needing to travel from Tampa to New York's Sloan Kettering to have surgical resection of his tumor. They have to be there by this Thursday and does not qualify for Angel Flights. Seeing as the time is now limited, we are trying to pull something together along with others that are trying to help. The baby would be traveling with his Mom and grandmother if possible for this surgery. This is all the details I can go into. Please email me if you can help. Please keep this in your prayers.
Love, Tracy
tmsol87@aol.com
October 9, 2008
Counts from clinic visit
WBC 3.15
HGB 15.1
PLT 326
Creatinine 0.32
IGG 530
October 7, 2008 1:50 PM
Well, I was doing really good with updates and then it seems I stopped.
It is actually due to the fact I ended up in surgery to remove a stone that had been blocking my right kidney. The details are over on the Message Board under a Post title "Prayers-Updates-Details".
So, right now I am recovering which is seeming to be a slower process than I thought it would be but in the long run this will hopefully be taking care of a problem that has been going on for a very very long time that only became an urgent problem on September 18th.
How is Ms. Katia? Well other than being my shadow more so than normal and the best nurse EVER, she is also doing quite a bit of coloring for me, getting me many glasses of water and asking me if I am okay every few minutes. We are watching the Discovery Channel, Disney Channel, Goosebumps Marathons (she loves Goosebumps!), Cartoon Network, reading books, and listening to her Halloween plans and every now and then she lets me get my fill of CNN.
My family has taken VERY VERY good care of me and making sure that I am following the orders to take it easy.
I haven't been physically able to get out of bed so I really can't break that rule of "taking it easy".
The details pretty much spell all of that out. I usually have a very very high pain tolerance. I really hope they didn't remove THAT from me because right now I feel like I fought with an elephant and then somehow I ate him alive so he kicked my insides all around. I had the surgery on Friday and it didn't include incisions. They did put a stent in though.
Anyway, enough about that.
Katia has very much enjoyed her mail coming in and was able to send some out. She is enjoying being back in her classes with Ms. Michelle which is going very well. She hasn't really made up her mind for Halloween but right now we are thinking MUMMY since it is soft and breathable. Her skin has just been very itchy and she gets hot very quickly. She is most comfortable in T-Shirts or cotton dresses and some days she is more puffy than others so a Mummy costume we can use her regular T-Shirts and these leggings we found that aren't the regular tight ones and then just wrap her up in light gauzing. She wants to carry a black cat or bat or something and maybe wear a Halloween headband. Easy enough:)
Lots of love, Tracy
September 19, 2008 5:20 PM
WBC 2.67 (low)
HGB 15.0
PLT 407
IGG 642
FK506 ?
Creatinine 0.30
First, thank you so much for your birthday wishes for Tatiana yesterday:)
They were very sweet!
Katia's clinic went well yesterday for her labs and Pentamindine infusion so we were out of there and back across the bridge right before traffic time to have some cake and icecream.
Believe it or not, Katia only wanted a wee piece of cake and no icecream. Her belly is still giving her issues but that is just something for now we are going to have to deal with since there doesn't seem to be a reason why. Zofran helps to ease it up some. She isn't losing weight at all but her appetite has gone down. Her drinking has remained to be enough and mainly she sticks to drinking water. Definitely she has changed over to soy milk for now. But any other dairy products are fine?
She is happy to have Ms. Michelle back for her classes, very happy!! She did very well with her first bit of testing on showing how well her understanding of words and sounds are as well as her ability to read certain words. Katia is very very much getting into books! She likes little "tales" and anything that has a little bit of scariness in it but not too much. She also likes "Chapter Books" but with pictures but her reading level scored around the beginning of a first grader. That is an improvement and she works hard:)
Her eyes are still her biggest issue when it comes to pain. Her "tush" is improving which she is very very thankful for so I am thinking the FK506 level may be a bit higher this time. The steroid cream also seems to help in that area.
Katia was talking about something she was watching on TV about kids with different diseases and how they wanted to just be "normal" or like other kids. Katia has never really seen herself as different because she hasn't been around other kids for the most part. Before she was diagnosed, she was only 2 and home all the time around her sisters and parents. Since her transplant, she has been homebound due to counts.
So, when she brought up the idea of "normal" I was curious what she would say. She said if she could have something changed she would want to have tears when she cried because she doesn't make any tears. That is true, no tears come out when she cries. Her eyes are constantly dry so we are always using eye drops to add moisture. Her reasoning was because she says it makes it look like she is just having a temper tantrum (sometimes that is what she is having) when she is really not.
Katia has been okay with being shorter and with having to wear a mask. She has adapted to dealing with a lot of things and since it has just been a part of her life, she has never really thought of it as being different or even having to adjust. We have never really treated her differently. She knows about her illness and she knows how miraculous everything is that she has been through. She also knows how amazing her doctors and nurses are.
I am always with Katia, 24 hours a day, 365 days a year but I am still caught off guard sometimes when she says certain things and I think about what is going through her mind sometimes. She is definitely not your typical 8 year old but she is also not a victim of cancer. She is a survivor and a symbol of hope. She is a hero and a reminder a lot of times to me especially to slow down.
There are a lot of things that we could change that are big but sometimes the little things that can be changed would make the biggest difference.
Lots of love, Tracy (and Katia!)
September 18, 2008 7:30 AM
Happy Birthay, Tatiana. Sweet 16:)
We are off to clinic this morning so I will update later. I wanted to jump on here and wish Tatiana a happy happy 16th birthday:)
She has been a great big sister to Katia and an awesome playmate endlessly to Katia so many times. It is hard to believe she is 16 today, WOW!
Happy birthday Tatiana:)
I will update with counts later today.
Love, Tracy
September 9, 2008 7:50 PM
I have actually update 3 times in a few days... wow!
This evening, I actually sat down at the computer to do some Foundation work as we are working with 2 families right now but I checked some messages and wanted to update with a quote on my Facebook page.
Well, in looking up a quote, I came across something.
When I was growing up, we would memorize different verses in Sunday School and get little things out of gift box when we completed one. I remember a bookmark I received with a poem that I loved! I still remember this poem (well not all of it) but I really loved the words to it and even through a lot of situations today, these words come to mind. It is amazing how different verses, poems or even comforting talks someone may have had with us as children will stay with us through our adult years. So, I wanted to share this. I came across it again today.
*****************
Don't Quit
When things go wrong as they sometimes will;
When the road you're trudging seems all uphill;
When the funds are low, and the debts are high
And you want to smile, but have to sigh;
When care is pressing you down a bit-
Rest if you must, but do not quit.
Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are
It may be near when it seems so far;
So stick to the fight when you're hardest hit-
It's when things go wrong that you must not quit.
"Don't Quit," Author Unknown
********************
I just always really liked that poem and really I used to be able to recite it to myself and feel better. Right now I can probably only get a few lines down but I am going to try to memorize it again. I am sure my Neurologist would be happy to hear my recite it. In reading it over again today, it really does seemed to have transitioned right into adult life. I remember I almost used to have a tune I would recite it to.
Just recently I promised myself I was going to get back into writing poetry and Katia and I are planning on a little project of our own together as well. She has something she wants my help with putting onto paper.
By the way, classes with Ms. Michelle (Katia's Homebound Teacher) will actually start on Thursday. So, two "sleep sleeps" as she puts it:)
Lots of love, Tracy
September 7, 2008 12:00 PM
Our prayers are with everyone in the path of yet another Hurricane that seems to be headed, again, in the same path as Gustav or nearby. This also is a very dangerous storm! Hurricane season is so unpredictable other than the fact we know it is unpredictable.
I do have a prayer request to post for Katia. Katia's GVH in some areas seems to be in "flare mode" so I ask you keep that in your prayers. Her "tush" these days is quite uncomfortable. She is beyond the ability of being distracted. We aren't changing any levels of her medications as we have been trying to wean one and going up on any others would be hard on her kidneys so we are using a cream (Triamcinolone) in the area which hopefully will bring some relief, it has in the past.
The other area of course that worsens when GVH seems to flare is her eye sensitivity. There is really nothing that can be done to ease this so she either naps more, takes her pain medication more often (codeine) or uses mind over matter.
Katia believes in prayer. Katia is not one to really get up and let something ruin her whole day so she figures out a way to do something around what is bothering her.
I have to really say Katia is my hero in the way she handles herself. She can be snippy and in a bad mood but then she can also turn right around and bring me a picture she has drawn and explain that she really just doesn't feel good and wants to cozy up or go take a nap for a bit. If she sees someone else isn't feeling good in the house, she is pretty quick to ask what is wrong or make a little picture for them, bring them a glass of water (she is especially protective over me) and bring out her little Doctor Kit.
At 8 years old, she in many ways acts like a typical eight year old but a lot of the times she is such an example of not letting things get the best of you, turning to God and being there for others. WOW!
Hope everyone has a good week. Lots of love, Tracy
September 5, 2008 1:40 PM
WBC 2.22 (low)
HGB 14.1
PLT 404
Creatine 0.29
FK506 3.9
IGG 628
Katia had clinic yesterday for labs and her Pentamindine infusion. I don't have all of her counts back yet so I will add the rest later today or tomorrow. (I updated it 9/7)
Thanks for checking in. Her WBC (white blood cells continue to be low. Not sure yet what her IGG level is but if it is low enough than we will plan an IVIG infusion for next visit.
Her biggest issues lately has been her eyes (that continues) but also her bottom has really been giving her more and more problems which is not an area she likes to have causing her more problems with. So we are going to go back to using the steroid creams there as well. One thing that has changed over the years is Katia has gotten very good at being able to describe what the problem is so the guessing game is not so much an issue except when it comes to her eyes and that isn't really because she can't describe the problem.
Hopefully with the steroid creams, her "tush" can get to feeling somewhat better. GVH is just something that doesn't give much room for relief. A lot has to do with her counts and when her counts go down, a lot of times, the GVH seems to improve and when her counts get better, the GVH gets worse.
Okay, onto the school news. Katia will start back her classes this week with Ms. Michelle!!! Yeah:)
Katia is so happy. She heard me on the phone talking to Ms. Michelle and she was just all smiles!!! She can't wait to show her the reading she has been working on over the summer. She has learned new words and she is ready to show her teacher. Also, Ms. Michelle is funner than Mommy when it comes to school work...
I said I would be off the computer quick so Katia could do her reading with me and then she gets to play on the computer (see work before play). If you haven't gone by that Playpage lately Katia's Playpage, Katia still gets by there quite a bit to Pop the Virtual Bubbles, do the color pages, and play the different games. She likes the Noggin, PlayHouse Disney, and Cartoon Network sites as well. She is quite savvy on the computer. She learned quite a bit about the computer through using the Jumpstart Learning Games and also by hanging on me while I was on the computer:)
I will update the rest of the counts when I get them.
Keeping an eye on Tropical Storm Hanna and keeping everyone in prayer that is in its path.
Lots of love, Tracy (and Katia)
August 31, 2008 12:15 PM
Praying for everyone in the path of Hurricane Gustav. Praying for safe travels for so many evacuating those areas. I know there are alot of people who have family in the path of this Hurricane as well and family in areas that have already been devastated by this Hurricane. Our prayers are with you that you are able to communicate with your family members and with them as well as they try to recover and rebuild. This is proving to be a very powerful Hurricane. Our prayer is that this does not do the amount of damage as Hurricane Katrina did and that it will somehow lose some of its strength before it gets to the Gulf Coast.
Love, Tracy
August 21, 2008
Counts 8/18/08
WBC 3.52
HGB 13.9
PLT 427
Creatinine 0.26
Bun/Cre 46
FK506 7.7
Katia had her regular clinic visit for her Pentamindine Infusion and labs. Her labs looked better than last time although her WBC are still below normal but up over the last two visits so that is better.
Overall she is just itchy but not "pink" on her skin and her skin patches on her hips, knees and chin are better than they were a year ago. Katia's GVH is just kind of hanging around but not getting any worse at this point and seems to slowly be improving with the medications she is currently on. At one point we had thought about starting her on a new treatment when we stopped the Pentostatin but we have no plans of doing that at this time. She just continues on the steroids and her other immunosuppression medications and little by little we are going to try to wean the steroids and see how the GVH responds to weaning.
Still, Katia's biggest issue is definitely her little eyes. They are so uncomfortable all the time and really there are no answers on how to deal with them. We are always looking into different treatments and by we, that includes different studies in different hospitals. Her doctors follow different studies. There is actually another study going on that we may look into. It doesn't have anything directly to do with the eyes, just GVH but it may not hurt to look into it at least. The problem is always whether or not she qualifies due to what treatments and studies she has already participated in, her age, what stage GVH she has, and many other qualifications they look at. Also, we have to look at the added risk involved in trying (especially if it involves any added medications). Katia's body has been on so many very strong medications for a very long time and by God's grace she has been able to continue them.
So many have prayed for Katia throughout the years, left so many words of encouragement, and just always been there through the hard times and the good times.
Katia is learning to read and enjoying books more and more. We knew she would love the ability to read. She is learning math more and more, learning to tell time and learning to count money. For so long, this has been a struggle for her but she has worked very hard and, as she puts it, "things are clicking together".
Through everything, it is always better to focus on the positives.
I love quotes so of course my kids get to hear a LOT of them and one of them that I found lately is:
"If we all did the things we are capable of, we would astound ourselves." Thomas Edison
Very true.
We have always really tried to instill the joy of reading with our children and Katia is catching onto this little by little. Tatiana likes Jane Austin right now. Sharayah has always enjoyed books even though college has kept her busy with classes and reading is hard to squeeze in sometimes. I have always enjoyed autobiographies. Katia loves little story books and "different kind of books". Both Tatiana and Katia are schooled at home so they get a lot of time to enjoy reading which is nice and I think very important.
Tatiana has her upcoming follow up visit with her doctor to go over all her scans for her back, brain, shoulder and neck on the 19th of September and to come up with either more ideas or some sort of therapy or something to help give her some sort of relief. Thank you for keeping her in your prayers.
Although I don't update often (I am not sure really who checks this site anymore) I have given a lengthy update:)
I will try to work on changing the picture. I will have to get creative as Katia doesn't take pictures without her sunglasses and we really haven't been taking much pictures lately.
Also, if you have a Facebook, you can find me over there by my email address tmsol87@aol.com. Please attach a little message letting me know who you are:)
I keep up with that daily.
Hopefully things will stay steady with Katia or get better and this page will never have to be used urgently or for daily updates or multiple daily updates again.
That is our prayer daily.
Thankyou for checking in:)
Love, Tracy
*******************
August 7, 2008 3:00 PM
Counts from August 4, 2008
WBC 2.91 (low)
HGB 15.2
PLT 432
Creatinine 0.24
FK506 7.7
Normal blood counts are listed above.
Katia went in for her regular Pentamindine Infustion and IVIG infusion (thankyou blood donors!!)
All went well with her clinic visit.
She has been having belly and eye issues but that has been an on and off thing for quite some time it seems. The belly problems seem to happen nearly anytime she eats but we are changing her over to lactose free milk to see if that helps at all. We did that as off Monday, so far no change but we will just stay on that track.
The eye issues... this has just been so ongoing for so so long and has actually caused her to get up during these last two nights which is kind of odd. It has happened in the past but two nights in a row? It ends up turning into a headache and with her pain medication it does go away after a while.
We had quite a bit of rainy days in a row which she loves because they aren't sunny days.
Around the house, Fozzy has been a very good playmate to Katia and is getting better and better with time. He has so much patience with her and just sits with her or follows her around. It is like he understands what she wants him to do. Dogs are just awesome! He is the perfect puppy for her. Fore the Children really brought Katia a lot of happiness with Fozzy back in May 2007 and Fozzy continues to bring her happiness each day! Thank you, Mark and Dana.
Please continue to keep Katia in your prayers. Although I don't update as often, mainly due to the fact things don't so much change with her but seem to remain the same, hopefully someday her body will fully accept her transplant. Katia is very eager to do many things but is also very patient to get well enough to do those things. God has been so good in blessing Katia with both patience and understanding but also the many prayers being said for Katia throughout the years.
God bless each of you.
Love, Tracy
July 24, 2008 10:15 AM
Counts from 7/22/08
WBC 2.83
HGB 15.0
PLT 372
FK506 7.7
IGG 572
Normal blood counts are listed above.
Counts look okay, WBC is low and IVIG will be done during next visit. Overall things just remain the same with Katia. Which, seeing we took her off of her Cellcept finally is a good thing. Getting her off of one medication after weaning little by little is a positive move in the right direction.
Katia's eyes are her big issue still at this time. The white area of her eyes look better some days than others but eye pain is an issue for her most of the time.
She has had a sore throat so they did a throat culture which so far has grown nothing:) I was surprised she admitted to the fact her throat was hurting (usually I have to be the one to say her throat or something that will require a throat or nose culture) has been bothering her since she hates those things but she did. Maybe she forgot about the cultures or is just deciding to get it done and over with... Anyway so far the culture is negative.
On a very sad note, for those of you who have followed Angel Jimmy Reichert page, please keep his family in your prayers. Jimmy passed away yesterday and will be greatly missed.
Thank you for your continued prayers for Katia. Summer is quickly going by. There has been a LOT of rain so far. Nothing like what Texas got yesterday. We were keeping a close eye on the news yesterday and praying for everyone's safety there.
Love, Tracy
*******************
July 14, 2008 11:44 AM
Counts from 7/7/08
WBC 5.46
HGB 14.2
PLT 321
Creatinine 0.23
I have been meaning to jump on here and update actually change the pictures out but things have been a little hectic.
Katia hasn't been feeling good. With summer here, our hopes is that she will feel good and enjoy summer.
The colonoscopy and endoscopy really didn't give us anything conclusive so we really aren't sure what the problems are coming from. Right now, her main issues are still that she has quite a lot of eye pain, "female" pain, and a sore bottom. Bathtime helps this some but there have been a lot of late nights, early mornings and long in betweens. Katia pretty well knows what will work to make her feel better and when she just needs help being distracted.
I think back over the last 6 1/2 years and really far Katia has come and I am truly amazed and grateful. I think grateful is the first word that usually comes to mind. Grateful to God. Grateful to Katia's doctors and healthcare team. Grateful to family and friends. Just grateful.
Do we get worried? Yes. We have seen so many families around us lose their loved ones either due to the cancer or side effects of treatments early on or years later. We try to focus on hope and the continuous search for a cure and better treatments. Katia's battle with GVHD have shown us really how much goes into research and how much really is needed toward finding better treatments for many different diseases.
The other day I was going through and backing up pictures and although Katia's appearance changes through treatments, her smile stays the same. Different people she has met have commented on the fact she always seems like everything is fine even when she isn't feeling well. Although she can get moody, bossy and have a bad day, the fact is no matter what Katia's focus is she just wants to feel good so she can play and be happy and she loves her family:)
Thank you for your continued prayers for Katia. Please keep all of those in prayers that are fighting many diseases. Hopefully one day soon, there will be cures.
Love, Tracy
PS I will get the pics changed out, soon:)
June 30, 2008 11:26 AM
Hello:)
Results from the biopsies taken during the endoscopy and colonoscopy came back all negative.
Katia has actually been feeling better also since her dose of FK506 has been increased so next counts should show a higher level of this in her system. Her last few count levels have been really low.
Her eyes?? Well they are still very sensative but at least her belly has been feeling better.
Thank you very much for your prayers.
Love, Tracy
June 24, 2008 3:50 PM
WBC 3.67
HGB 14.6
PLT 200
FK506 2.6 (low low)
So, no real results or anything but I just wanted to post her lab results. Katia did sleep a lot after we got home and through the night. Her FK506 level was really low again... we like it to be around 7 ( I prefer around 8). This is one of her anti-rejection medications. The lower the number the worse the GVHD usually gets. Katia's GVH is really responsive to the steroids and her Prograf (FK506)
So, some of her feeling bad can have something to do with the fact that count has been low but when that level gets where we need it, her kidneys have a hard time handling the dose (remember that?)
It is just a balancing act since her GVH has gone on this long and her body has just had to deal with the medicines BUT really with the amount of medicines Katia has taken for the 6 1/2 years, her body and organs have done quite well so we just have to find a way to balance this out.
Hopefully we will get some results from these last tests over the next few days and from the eye doctor. The MRI looked good though of the ORBITS of her eyes.
Thank you for your prayers.
Love, Tracy
June 19, 2008 7:00 PM
COUNTS FROM 6/17
WBC 4.62
HGB 14.3
PLT 319
FK506 3.7 (low)
IGG 577
FIRST, THANKYOU FOR YOUR PRAYERS AND SECOND, PLEASE CONTINUE. WE FEEL SO BAD FOR KATIA RIGHT NOW. SHE DID HAVE HER REGULAR CLINIC VISIT ON TUESDAY FOR HER IV PENTAMINDINE AND LABS. THINGS OTHER THAN THAT WERE JUST NOT ABLE TO BE WORKED OUT WITH THE GASTRO,OPTOMOLOGIST, ANAESTHESIOLOGIST, MRI AND IS NOW LINED UP FOR MONDAY AT 8:00 AM. SO THAT IS GOOD:)
THE WHOLE THING IS TRYING TO ONLY SEDATE HER ONCE AND BEING ABLE TO REALLY DO A GOOD EYE EXAM AFTER THE MRI OF HER ORBITS AND SEE HOW HER CORNEAS AND INNER LIDS LOOK AND JUST SEE ALL WE CAN.
RIGHT NOW KATIA GETS NAUSEATED WITH ANY FOOD AND HER STOMACH PHYSICALLY HURTS MOST OF THE TIME. SHE HAS HAD ALL HER MEDS SWITCHED TO LIQUIDS BUT WILL CHOKE ON FOOD AS WELL. THE UPPER GI MAY SHOW WHY?
HER EYES ARE IRRITATED ALL THE TIME AND IN PAIN MORE AND MORE.
HOPEFULLY WE CAN FIND OUT WHY THIS IS ALL GOING ON AND GET HER FEELING BETTER.
KATIA REALLY WANTS TO FEEL GOOD.
SHE ENJOYED OUR GETTING AWAY TO ORLANDO TO GO SPEAK AND WAS HAPPY TO SWIM. (I NEED TO POST THOSE PICS!) SHE FELT BAD BUT SAID SHE HAD FUN ANYWAY AND WAS HAPPY TO DO SOMETHING DIFFERENT. SHE WAS TEARING UP WHEN MYRON WAS SHARING HER STORY AND SINGING.
WE HAVE ANOTHER SPEAKING ENGAGEMENT AS WELL SOON.
GOD HAS BLESSED US WITH KATIA AND HAS BROUGHT HER THROUGH SO MUCH AND PRAYERS HAVE BEEN SO MUCH A PART OF THAT. SHE KNOWS THIS. WE KNOW THIS. THANK YOU:)
LOVE, TRACY
****************
June 11, 2008 7:15 PM
ADD ON 3PM 6/12: Katia's clinic date will move to Tuesday instead of this Friday which is okay. It is better that things can all be done at the same time so scheduling is important.
Small prayer request.
Katia goes to clinic on Friday for her regular Pentamindine treatment and hopefully the rest of these this can be lined up (it should be).
She has been really having a lot of eye pain and bottom pain so she is just really hoping something can get figured out. She has a lot of faith in her doctors and the tests that can be ran but she is really praying and praying also.
The plan is to do an MRI to see the orbits of her eyes (remember this all started with a tumor behind her right eye) and also while she is asleep to do a full eye exam and get a good look at her corneas and the under parts of her eye lids. Also to do a full exam and have a GI doctor come in and have a look.
She has needed quite a bit of extra pain medicine and her baths as well as cold cloths for her eyes and just having to deal with the pain also. It is hard to watch her deal with this. We all understand things could always be worse. We also just want to see Katia feel better.
Thank you for your prayers always.
Love, Tracy
PS I will work on getting some of those pics up from the convention, I really have been meaning to.
June 8, 2008 9:00 AM
Hello, just a quick update. Promise to keep it short:)
First, please keep Myron's Mom in your prayers. I don't really know much details but she has been having some medical issues and had to rush to the doctor on the mainland and have some testing done and now they need to go see another doctor as well. Something about a type of fluid sac of sorts behind her knee that has suddenly enlarged which needs to be drained and sent off? Please just keep this in your prayers that she will be in the right hands and the right tests will be done and the results will be okay. This all has come up suddenly in the last 48 hours. They live in Honduras.
During the end of last week, Myron was the Key Note Speaker for the Florida Association of Blood Banks Convention held in Orlando so we went for 2 days. Katia was definitely happy for the little get-a-way. We all were. The hotel was very nice. The convention was very nice. Part way through the 1st part of the Day One, we realized our camera wasn't saving any pictures we were taking..... so that wasn't good but we decided to not let that get in our way. We got to go out on a paddle boat, swim and take part in an awards banquet. In between Katia had a few issues and we spent some time in the room, but it was a nice room with a view of the Disney Parks and fireworks. Myron's speaking for this was about an hour and shared Katia's story as well as the important part the Florida Association of Blood Banks plays in saving lives. This is a wonderful, amazing group of people!!!!
Florida Association of Blood Banks
I have a few pictures I will try to post today or tomorrow that were able to save. I normally could have take a hundred or hundreds:)
Love, Tracy
June 2, 2008 5:20 PM
Labs from Friday 5/30/08
WBC 4.81
HGB 12.7
PLT 348
FK506 1.5 (that isn't a typo)
Creatinine 0.32
So, I am getting a little slow at these updates after clinic...
Katia wasn't feeling too well from her eyes, hips, underarms and just anything that could itch or hurt was doing just that. Her eyes are really giving her a lot of grief both from the sun and sudden pain that requires codeine and cold cloths with pressure.
Well part of this was definitely explained with the FK506 level being 1.5. Usually that is around 8 or 10. Since Katia's kidneys were taking such a hit not too far back due to the C-Diff, the level of Prograf (FK506) medicine she could take had to be reduced to give her kidneys a break but also because her body wasn't even absorbing the medication so her level was really high well now the level is all the way down to 1.5!
So now we have gone up a bit, not a lot or we will be right back to a high level and kidneys unable to handle anything. Her creatinine count is already creeping up a bit so she needs to drink more water as we go up on the FK506 right now. Katia is already showing some improvement in regards to her skin especially around her hips and the itching on her skin. Her armpits aren't so messed up either and her eyes aren't so irritated. She is still having the sudden eye pain that just comes out of nowhere.
We are lining up an MRI of her orbits as well as a full eye exam within the next 2 weeks hopefully. The eye causing the issue right now is not the same eye that she initially had the tumor in. The hard part is getting Katia to have an eye exam, the full exam that is necessary. This would include not only the eye exam that involves all the dilation drops and the eye exam most of us are used to but also a good look of the eyelids and corneas and the under part of eyelids as well as maybe putting some punctal plugs where they weren't put before if they see this is necessary so right now the idea is to do the eye exam while she is sedated for the MRI.
When we are lining up one thing that requires sedation, the idea is to line up anything else that would require sedation at the same time.
Other than that, Katia is eating good right now, quite well actually. Drinking could improve although she is drinking quite a bit of milk which is always good. Fozzy is doing his job with keeping her entertained and active. For the summer she is supposed to be working on some reading books Ms. Michelle left her as well as we have a goal for her to learn the Days of the week by heart and be able to read the calendar (or at least understand it).
Over the summer, please remember how important it is to donate blood. Many people rely on blood products year round. Over the summer, many people spend more time out on the road or out at the beach causing more people to possibly end up in emergency rooms. Emergencies can never be planned on by anyone. Blood supplies of all blood types are low all over the country. If you can donate once, twice or become a regular blood donor, you are saving lives. By saving one life, you could be saving a whole family.
Lots of love, Tracy
May 28, 2008
Just a small bit of an update but some good news.
C-Diff seems to be all cleared up:)
Katia is happy about that. She stopped taking the antibiotics a few days back. She returns to clinic on Friday.
Today was her last day of class with Ms. Michelle for this school year. Not so happy about that. In some ways yes but she likes Ms. Michelle a lot!
We went to the park for a bit today and Katia played a bit with her sand bucket and shovel. Of course the sun makes those little outings short but it is nice to get out for a bit.
I hope everyone is having a nice week.
Katia has been decorating her little "Pet Rocks". Some went out and have already been received and some are about to go out the end of this week. It has been a fun project. Katia is quite good and has a very steady hand. I remember when her hands were so shaky.
She has some new design ideas so we will try those out when we get more rocks and supplies. Right now, we have been having a lot of eyeballs looking at us from the dining room table:)
I will update after clinic. I should take a picture of Katia before clinic. She is into wearing all pink, all the time right now.
Love, Tracy
May 17, 2008 8:31 AM
Counts from 5/15/08
WBC 3.75
HGB 13.8
PLT 365
Creatinine 0.18
FK506 3.6
Clinic went well. We were there for the full day but we got everything done. Pentamindine and IVIG. Katia really started not feeling well near the end with stomach cramps and the drive home ended up in 5:00 traffic. Her belly is really cramping up quite a bit as she remains C-Diff positive. She did start Vancomycin when she got home from clinic for the C-Diff. Hopefully this will things up for her. Friday she still had a very sore belly as well as some runny stools so she pretty well stuck to laying low and eating some light foods and drinking just water. She is drinking good at least.
Yesterday she sat at the table and did some drawing while I boxed some stuff to mail (the Pet Rocks that had been ordered) and played in her room for a bit so she is getting up which her doctor is always happy to hear. Katia is not a very "high energy" person.
Well, that is about all that is going on around here. Not sure what is going on today. I know what she wants to do today. She wants to do some painting but I just got the dining room table all cleared off when I boxed everything up yesterday so we will see...
Please pray the Vancomycin clears up the C-Diff.
Lots of love, Tracy (and Katia)
May 14, 2005 12:05 PM
Hello there:)
Spring is really in the air here. It has been hot the last few days but that is okay. It has been nice weather.
Of course Katia is not a fan of the sun due to her eyes which have really been bothering her both indoors and outdoors a lot lately especially last night. She couldn't even open her left eye so she basically was just holding a cold cloth on it the whole evening and until she fell asleep. Not sure what the problem is and really nobody is sure. Eye tests never really determine much but the fact there is a lot of damage to the corneas due to GVH and other than scraping the corneas, there isn't much we can do. Scraping the corneas gives relief for a week or so until the damage gets done again since the GVH is still an ongoing issue. So, please just keep this in your prayers.
Her "tushy" issue seems to have resolved some so thank you for your prayers:) It seemed to have been a fissure (tear of sorts) and it healed thank goodness.
She is still C-Diff positive so she will be starting Vancomycin this afternoon. She isn't happy about that. She wanted to not be contagious anymore. By that she mainly means she doesn't want to take anymore yucky medicines. But, at least she really doesn't have any bad symptoms right now so hopefully we can get this C-Diff cleared up. In the past when she has had it, it has taken a while to get it cleared up. She has had some issues with her bowel movements throughout the weekend so I was waiting for a call saying the stool we handed in grew something or showed something and the call came in... I wasn't too surprised.
We have clinic on Thursday for Pentamindine and IVIG. So, it will be a long day. I promised Katia we will take some movies she is wanting me to watch with her. She mainly lays there and listens to them and I watch. Her eyes have really been bugging her. She is okay for just talking or something but watching TV or playing a video game is really hard on her eyes. Going outside, really bad! She always has her big sunglasses on at least which helps but even so, her eyes are usually closed even under those.
She is definitely having a lot of fun painting her rocks though. She doesn't even get paint anywhere. She is very neat with paint. All the orders that have come in are about to get mailed out, probably by Friday or Saturday. If you are interested, please just email me. The link I had up kept giving me problems so I need to figure something out. I will post a picture though of the different rocks back on here in a bit.
Lots of love, Tracy
**************
May 11, 2008 "Mother's Day"
Today is a day honoring Mothers and my day started with Tatiana and Katia whipping up some pancakes for me:)
For many reasons Mother's Day is a very special day for me. God has blessed me with 3 beautful daughters, my own Mom has become closer to me over the past few years and Myron's Mom has been such an important part of my life over the past 22 years that some sort of a title for what is to me wouldn't sum up what she is to me.
She is very special and has always been like a Mom to me.
I received a poem (well kind of like a poem) via email earlier from someone who has not only herself been a very important part of my life but her family was also very important in my life.
This is about Mother's Day but I think it is about Mother's everyday.
***************************************
Mother's Day.
This is for the mothers who have sat up all night with sick toddlers in their arms, wiping up puke laced with Oscar Mayer wieners and cherry Kool-Aid saying, 'It's okay honey, Mommy's here'.
Who have sat in rocking chairs for hours on end soothing crying babies who can't be comforted. This is for all the mothers who show up at work with spit-up in their hair and milk stains on their blouses and diapers in their purse.
For all the mothers who run carpools and make cookies and sew Halloween costumes. And all the mothers who DON'T.
This is for the mothers who gave birth to babies they'll never see. And the mothers who took those babies and gave them homes.
This is for the mothers whose priceless art collections are hanging on their refrigerator doors.
And for all the mothers who froze their buns on metal bleachers at football, hockey or soccer games instead of watching from the warmth of their cars, so that when their kids asked, 'Did you see me, Mom?' they could say, 'Of course, I wouldn't have missed it for the world,' and mean it.
This is for all the mothers who yell at their kids in the grocery store and swat them in despair when they stomp their feet and scream for ice cream before dinner. And for all the mothers who count to ten instead, but realize how child abuse happens.
This is for all the mothers who sat down with their children and explained all about making babies. And for all the (grand) mothers who wanted to, but just couldn't find the words.
This is for all the mothers who go hungry, so their children can eat.
For all the mothers who read 'Goodnight, Moon' twice a night for a year. And then read it again. ‘Just one more time.'
This is for all the mothers who taught their children to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead.
This is for all the mothers who teach their sons to cook and their daughters to sink a jump shot.
This is for every mother whose head turns automatically when a little voice calls 'Mom?' in a crowd, even though they know their own offspring are at home -- or even away at college.
This is for all the mothers who sent their kids to school with stomach aches, assuring them they'd be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.
This is for mothers whose children have gone astray, who can't find the words to reach them.
For all the mothers who bite their lips until they bleed when their 14 year olds dye their hair green.
For all the mothers of the victims of recent school shootings, and the mothers of those who did the shooting.
For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely.
This is for all the mothers who taught their children to be peaceful, and now pray they come home safely from a war.
What makes a good Mother anyway? Is it patience? Compassion? Broad hips?
The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time?
Or is it in her heart?
Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time? The jolt that takes you from sleep to dread, from bed to crib at 2 A.M. to put your hand on the back of a sleeping baby?
The panic, years later, that comes again at 2 A.M. when you just want to hear their key in the door and know they are safe again in your home?
Or the need to flee from wherever you are and hug your child when you hear news of a fire, a car accident, a child dying?
The emotions of motherhood are universal and so our thoughts are for young mothers stumbling through diaper changes and sleep deprivation...
And mature mothers learning to let go.
For working mothers and stay-at-home mothers.
Single mothers and married mothers.
Mothers with money, mothers without.
This is for you all. For all of us.
Hang in there. In the end we can only do the best we can. Tell them every day that we love them. And pray.
Please pass along to all the Moms in your life.
'Home is what catches you when you fall - and we all fall.'
***************************************
Love, Tracy
May 9, 2008 4:06 PM
So, I added a few new pics. I added some "Relay for Life" pics on the Photo page. I really love the "Survivor" one. That word means so much and the American Cancer Society, Leukemia and Lymphoma Society, Pediatric Cancer Foundation, Childrens Cancer Center, National Marrow Donor Program, Florida Blood Services and yes, the Katia Solomon Foundation, everyone working together to not only help find a cure but also help with treatments and during treatments really mean so much to patients and their families. We have had the opportunity to be on both sides as a family with someone going through cancer and also as a Foundation helping families go through treatment. Katia walked that track slowly but if you remember, walking hasn't always been something she could do and not long ago, walking distance wasn't something she could do. So, we are always grateful for advances she does make and those advances are made possible by God,medical advances, her doctors, and so many of your continued prayers and support.
Love, Tracy
May 9, 2008 12:43 PM
WBC 3.3
HGB 13.2
PLT 463
FK506 3.1
Hello. Katia had clinic yesterday so those are the counts (well preliminary counts). We actually were there just briefly, didn't even get plugged in for anything:)
That is a rare thing.
We go back next week for Pentamindine and IVIG. The visit yesterday was mainly due to the fact her WBC had been dropping and we needed to make sure it wasn't going down more or she may have need GCSF. But, the clinic counts show it went up to 3.3.
Katia has been having difficulty having bowel movements. When she would go she was in a lot of pain. Mineral oil always solves the problem if she is constipated. Usually within a few hours of the first dose she starts getting some sort of relief and gets back on track but the pain wasn't going away. Well, she has a little rectal fissure (tear). She hasn't had one for quite some time. They really do hurt. The mineral oil helps as well as soaking in the tub and good 'ole Butt Paste (that stuff is really good!)
I just feel bad for her. She has a lot of patience though so she is laying low today but pretty attached at the hip to me and if she has to make a trip to the bathroom, I must go with her.
I am glad her counts came up so hopefully this can heal up. Since she is is so immunosuppressed it takes a while for things to go away.
She is happy about her Pet Rocks being liked:)
It isn't noted on the page but the shipping and handling is the same no matter if a person orders one Pet Rock or ten of them. I should have noted that. I need to make that clear.
She has quite a few of them done and more ready to stick the eyes on and decorate.
She hasn't had school this week due to an added doctor visit and her teacher has been sick. However, Katia has been practicing her reading and is moving along with that pretty well I think.
She is munching Cheerios as I type (we support the Cheerio company!) and wondering why I didn't change the pictures on the site yet?????
Good question.
I will.
I need to downsize them and get them on here. She is really on top of things, you think?
Love, Tracy
May 7, 2008 10: 25 AM
Well, there were 3 things I was supposed to get posted. The craft project of Katia's....
Done:)
The "Disney on Ice" pictures. I have uploaded them and I am nearly done with those. They came out really dark which isn't surprising seeing the place was really dark. I will post a few of those today (or tomorrow) though.
And then we were invited to speak at a Relay for Life event last weekend so I have some pictures from that as well.
So, I guess I will just make some photo collages(sp).
You know how you get started on something and then you get started on something else and then something else. Well that is me lately. It isn't like me to be that way. So, stick with me. Even Katia wants me to change that picture of the bike off of here.
But, she is happy her rocks are done. I wouldn't let her use the glue by herself for the eyeballs on the rocks. I was stalling her project. The glue wasn't as sticky as I thought it would be.
We have clinic tomorrow mainly because her ANC has steadily been going down and also we have to hand in some poopies. She is off the yucky medicine since Monday so we are praying and praying the C-Diff will be gone and stay away. It is kind of known for coming back with Katia (and other people) so we don't want that to happen. She really was excited when I said she was taking her last dose of Flagyl and I hope that was really right.
She is still run down quite a bit and nauseated but not nauseated as much or as often so that is good. No runny stools. No fevers. She takes naps quite a bit. That can always be due to eye pain though. Her appetite??? Well, kind sorta maybe?? Not great but enough. Her drinking? Better.
Labs will say a lot.
I will update after clinic with her labs.
Katia is anxious to see how you like her Rocks and hopefully some of them can find some new friends and good homes. She has been a good Mommy to a few of her own that she received over the year. She has hauled them around back and forth to Miami, to clinic, to the hospital, to wherever:)
Lots of love, Tracy
******************************
May 5, 2008
Please keep the family of Angel Sierra K. in your prayers. She passed away and she will be dearly missed by so many. Service information is on her website.
Love, Tracy
May 2, 2008
WBC 2.40
HGB 14.2
PLT 413
Creatinine 0.29
We are back from clinic. Katia has a few more days of the Flagyl, then we will check her stool again next Friday to see how things are looking with the C-Diff. She is still nauseated a lot but that may not have anything or little to do with the C-Diff. Still has a lot to improve on with her drinking BUT she is doing better:)
She is sleeping quite a bit and tired when she isn't sleeping. Obviously her body is trying to help her get better.
She had a very nice surpise last night! "Disney on Ice"!!! Thank you Pediatric Cancer Foundation:) The show was wonderful and the timing of going to the show was really perfect. Katia got sick near the end so we left a little early but it ended up being really right at the end. Her belly was getting pretty nauseated and she was afraid it wasn't going to hold.
I had been sick as well but mainly with some really bad headaches and nausea going together but I was really happy for Katia and Tatiana was really enjoying it and as parents that just warms your heart. Disney is just amazing at anything they do and they just put on a spectacular show!!!
I will post some pictures. I had promised to lay low for the weekend. We have Relay for Life event to go out to tomorrow and speak at and after that, laying low. Katia finishes her Flagyl on Monday so you will probably hear a scream of happiness no matter where you live! She is eager for Monday. I am praying her stool is negative for C-Diff.
So, that is what is up here. Please keep Sierra and Peyton in your prayers and the many others in-patient at this time or fighting their fight. So many families could really use prayers for loss of loved ones or are in the the days and months of their journey here on earth. And always, pray for a cure, soon.
Love, Tracy
April 29, 2008 12:20 PM
Counts for 4/28/08
WBC 3.24
HGB 14.9
PLT 273
Creatinine 0.21
FK506
Katia is getting better:)
Yep, she is feeling a little bit better day by day. Still nauseated but not as bad. That is her words. She still needs to drink about twice as much as she is drinking so she still needs IV fluids. But, she is finally feeling like that yucky medicine just might be worth taking:)
One thing her doctor and I both have noticed is her skin has actually looked clearer. Maybe its the C-Diff??
Maybe its the bath soaks. Katia likes to soak in the tub when she doesn't feel good. I think she gets that from me. I am not a tub person but I like to take a shower when I don't feel good or I am stressed. Lately, I should live in the shower...
There really is no rhyme or reason why her skin seems to be showing improvement but right now, it seems to be. Her eyes sometimes look good (they eyelids more so than the corneas) and other times they really cause Katia a lot of pain. Her mouth is pretty clear inside, especially the cheeks.
The one thing that changed recently for Katia that may have something to do with these changes? We went from the pill form of steroids to the suspension form of steroids which may be that her body responds to it better.
I don't know but whatever it is seems to be beneficial for Katia.
Although Katia's skin is appearing better, she continues to have the ongoing itching especially with clothing. She basically stays in t-shirts and leggings. That is her comfort wear. She wears them out because that is all she basically wears. She likes to wear sundresses too as long as they are comfortable and don't itch or aren't tight. Pretty and comfy:)
Tatiana and I are helping Katia with a craft project. Actually we haven't been too helpful. But, as soon as it is done, it will be posted. She has kind of an idea how she wants it done and wants it to be shown. Hopefully we can get it posted within the week. So, keep an eye out.
Lots of love, Tracy (and Katia)
April 25, 2008 7:50 PM
WBC 3.26
HGB 14.6
PLT 374
Creatinine 0.34
FK506 28.7
Hello:)
So, Katia is happier today than yesterday. She is feeling a bit better but the good news is they fixed her medicine so instead of taking 9 MLs 4 times a day, she is taking 3.6 MLs 3 times a day. That is a big difference to her! She can't stand the taste but she has stopped giving me a hard time taking it. She eats a few cheerios to get the taste out and then drinks water (fluids are good!) She is just really eager for her belly to start feeling a lot better. She is looking better though. She is drinking but not enough. She got IV fluids at clinic today.
Her FK506 level went from 6.8 on 2 days ago to 28.7 so it isn't breaking down the way it is supposed to. We are going to hold the dose through the weekend. That medicine is really hard on her kidneys so hopefully this will give her kidneys a rest and she will drink and flush out her system and the Flagyl will work on the C-Diff.
So far now, fluids, fluids, fluids:)
Thank you for checking in.
Love, Tracy
April 24, 2008 10:30 AM
HOPEFULLY KATIA WILL BE FEELING BETTER SOON. I PICKED UP HER MEDICINE YESTERDAY (2 BIG BOTTLES OF FLAGYL) AFTER QUITE A BIT OF PHONE CALLS BETWEEN HER DOCTOR AND DIFFERENT PHARMACIES TRYING TO GET THE MEDICINE MIXED UP IN A LIQUID FORM. THEN TO GET INSURANCE WORKED OUT. AROUND 7:30, IT WAS WORKED OUT.
SO I COME HOME WITH THESE TWO LARGE BOTTLES. BASICALLY KATIA IS PRETTY WILLING TO DO ANYTHING TO FEEL BETTER THAN SHE DOES RIGHT NOW. HOWEVER THE SITE OF THESE BOTTLES ALMOST MADE HER PUKE!
IT IS BASICALLY MADE FROM THE CAPSULES EMPTIED AND ADDED INTO A LIQUID AND MIXED. SHE DRINKS 9mls 4 TIMES A DAY FOR 14 DAYS.
SHE FELT PRETTY GOOD AT CLINIC DURING THE IV FLUIDS AND FOR ABOUT 4 HOURS AFTER. BUT THEN SHE FEELS CRUMMY AGAIN. HOPEFULLY A FEW DAYS OF MEDS WILL GET THE C-DIFF UNDER CONTROL, AND THAT WILL PROVE TO BE THE CAUSE OF WHY SHE FEELS SO BAD.
THE MEDICINE TASTE REAL BAD AND MAKES HER GAG AND SINCE SHE TAKES IT 4 TIMES A DAY, IT MAY BE A LONG 14 DAYS BUT SHE HAS DONE IT AT LEAST 5 TO 10 BEFORE. I FEEL BAD SHE HAS HAD TO DO IT THAT MANY TIMES BEFORE.
SHE IS STILL ASLEEP RIGHT NOW BUT SHE DID HAVE A GOOD NIGHT OF SLEEP SO THAT IS GOOD. I FEEL BAD SHE HAS TO START HER DAY WITH A MEDICINE SHE HATES BUT I REALLY HOPE IT MAKES HER FEEL BETTER SO SHE CAN AT LEAST SEE IT WAS WOTH IT.
CAN YOU TELL I FEEL BAD MAKING HER TAKE IT??
LOVE, TRACY
April 23, 2008 4:30 PM
Creatinine 0.37
FK506 6.8
Katia's kidney counts showed improvement:) She however needs to keep drinking a lot and keep herself hydrated. She is positive for C-Diff in her stools so she will start on Flagyl probably for 14 to 21 days. Not sure yet. That would explain the loose stools and maybe even the bad feelings in her belly. The nausea? Maybe. She has had the nausea for quite a while and last week the stool sample was negative for c-diff.
She is drinking right now and promises to do better tonight than last night and she has eaten better today also.
She really wants to feel better. She was determined there was some monster in her belly these last few days and c-diff will make a person feel like that so hopefully once she is on the medicine, she will feel better and the "monster" feeling will go away.
Thank you so much for your prayers.
Love, Tracy (and Katia)
PS You like the gold shoes for bike riding? Katia pulled that outfit together:)
April 22, 2008 7:53 PM
WBC 4.26
HGB 14.9
PLT 386
Creatine 0.51
Hello. Well, we did get to come home but will go back in the morning to clinic but home is good:)
Katia is still nauseated but hasn't thrown up since around 8:00 this morning. Basically her stomach emptied around then. She had a bag of IV fluids at clinic and about 6-8 ounces of water and some cheerios. The decision was to let her come home and drink fluids and come back in the morning to recheck her labs.
Then the Chemistry results came in and there was concern as to how dehydrated she was due to the fact one of her medicines is also very hard on her kidneys. Her creatinine count had gone from 0.27 on Friday to 0.51 today. But, we still were able to come home under the strict instructions she has to get down at least 20 ounces of fluids and must return if she throws up at all or has any runny stools since she can't afford to lose any more fluids.
Katia is stressed over the drinking but she is trying and she is going to try to eat some alphabet soup. Right now she is laying down. She is just nervous to eat and then throw up because that means she goes in...
We were able to hand in a urine and stool sample while we were at clinic. So she had that to send to the lab and blood cultures drawn. This could just be a bug she has picked up somehow or something she ate that didn't agree with her somehow. Hopefully she gets to feeling better. Her weight went from 18.6 kg to 18.0 kg since Friday. That is 41 lb to 39 1/2 which is mainly fluid.
It has been a long night and day so hopefully she feels better tonight.
I will update if anything changes overnight or after clinic tomorrow.
Love, Tracy (and Katia!)
PS I also added the photo at the top today. I uploaded the pictures off my camera and this is a pretty rare picture to have one with Katia, no sunglasses and eyes open. This was March 30th in the evening. Every other picture her eyes are closed but this one, her eyes are open:)
April 22, 2008 12:02 PM
Katia had a long night of nausea which ended up in a lot of throwing up and runny stools. Not really sure what is causing all of this? Her last stools specimens did all come back negative of anything. She is feeling very puny today so her classes with Ms. Michelle has been called off. I put in a call to her to her doctor. Hopefully this doesn't end up in an admit but at this time, nothing (including fluids) is staying down so she could end up dehydrated if this keeps up. Also, the cause needs to be figured out.
So, please keep Katia in your prayers.
She is curled up on the sofa where she ahs basically been since about 6:00 yesterday evening. She did get up and get a bath this morning around 7AM. I thought that would help her feel somewhat better but she just curled right back up on the sofa. Poor baby:(
Love, Tracy
April 20, 2008 7:50 PM
Counts from Friday Clinic-April 18th
WBC 4.16
HGB 13.8
PLT 323
Creatinine 0.27
FK506 6.7
IGG 826
Height 97cm
Weight 18kg
I am kind of noticing a lack in my updating... sorry.
Sometimes with the way things go with Katia, it is a little hard to update as things go up and down with her and it is difficult to explain.
Her GVH has been responding a bit better to the liquid steroids, at least on her skin so that is a benefit to the fact we had to change from the pills to liquids recently.
We did finally get her medicines changed over as of Friday.
One difficulty Katia has been having each morning and night right night is nausea. She takes Zofran in the mornings which helps after about an hour or so and for the evening, she tries Benedryl or Ativan or, if needed, both.
She has had issues coming and going lately which is one of the reasons I actually hold off on updating. I know that sounds like a reason to update but I really feel like so many of you have followed Katia for so long that it is really as disheartening for you as it is to us when Katia is feeling bad.
She just has some puny feeling days lately.
We did have her stools (poop!) tested and there is no blood in her stools. We are waiting to see if anything else grows but no blood is good.
Her appetite is kind of coming and going. She is ALWAYS hungry but her eyes are becoming bigger than her belly. I think nausea has something to do with that also.
She has begun taking more naps than usual. I think it is due to being tired but also because her eyes bother her. She is however really doing much better with her school work as far as her attention span and she is just really putting a lot more effort into her work. She has always put effort but lately she has put some added effort.
As far as what we are going to do for her osteoporosis. The Fosamax just wasn't doing what anyone had hoped it would do. The side effects of Fosamax aren't really causing Katia any problems but with the difficulties she is having with pills and also the fact over the last 2 years, she hasn't shown the improvement hoped (mostly due to the fact she is still on the continued higher dose of steroids), we are going to go with supplements instead. What those supplements are going to be hasn't been worked out yet.
Katia has become more active over these two years. She tires easily but she is up and about around the house, she is starting to get on her bike now for 15-20 minutes at a time. Fozzy has kept her busy and she keeps him busy. He really was great timing for Katia. That little puppy has a lot of patience with Katia.
Oh, that word brings up something else, PATIENCE! Katia has none of that right now. She has been beyond moody lately. I mean, we are used to Katia being on steroids. She doesn't do cycles of steroids. She has been on them everyday since around April 2004. She has been hungry, cranky and unpredictable since then. This last few weeks, she has been building to a point of concern actually. We have to constantly remind her to stop and slow down. Anything gets her upset. Anything. She is 8 now and not a typical 8 year old so she has one minute can be totally different from the next.
Katia is still very loving and caring and always is able to be talked to and reasoned with. She is very good at telling me what is bothering her or what she is thinking. Of course as her Mommy, it really worries me and pains me to see her get so upset but at the same time, I have to think about the fact she is also getting older and she has to learn to cope with things and other people in the right way. I look at her and since she still looks the same in so many ways, same height and same look in her eyes, it is hard to sometimes remember, she is 8. But when I sit down and talk to her, she seems older than 8 a lot of times.
But when she cuddles with me and gives me a hug or falls asleep with me, she is my baby:)
Please keep her in your prayers. I can't imagine the many things that go through her mind. Sometimes I think there must be so much but other times when I am talking to her and she seems like she is pretty worry-free, I think maybe God really gives Katia a sense of peace. That would be such a blessing for her. Let her focus on clinic and medical stuff when we are there or when she is feeling bad but when it isn't necessary, let her focus on other things.
She is a fun little girl to sit and chat with and be care-free with.
Someday, maybe she can update her own website (wow, can you imagine?) She is going to read back and say, "YOU WERE TALKING ABOUT MY POOP!!!!"
Anyway, have a good night:)
Love, Tracy
April 13, 2008 8:25 AM
Hello, I figured I hadn't actually updated for a bit. I put a prayer request on the Message Board but I haven't updated here and didn't realize that until last night so I needed to jump on here and do that.
These last few weeks, Katia has been having issues with taking her pills. I am not sure I mentioned a while back about Katia throwing up blood but since that time, she has now not been being able to take her pills like she needs to. Some we have been able to change over to suspension (liquid) and others we are still working on getting changed over. The concern is why is this becoming an issue. She has taken a lot of pills, without any issues, every day, every morning and night for the the last four or five years. Before transplant most of her medicines were liquids because of her age.
The first pills we changed over were her steroids because that equals 5 to 6 pills a day and now we are working on her Voriconazole (fungal medicine) which is 3 pills per day. She keeps either throwing those right up or choking on them. It is a real necessity for her to get those down as fungal infections is something that is a great concern and something that can sneak right up on Katia with such low counts and a history aspergillosis. So, we need to make sure she gets her medicine doses down. Sometimes she is able to get the pills down but mostly not.
We are also discussing some changes regarding her treatment for her osteoporosis as the Fosomax has some very concerning side effects and hasn't really seemed to to benefit Katia. She usually starts each Friday with her dose of Fosomax but that is going to change now. I am not sure of the new plan totally but I think we are going to go more with supplements.
Over the last two nights, she is having an ongoing problem with her left shoulder and right hip but only at night and once she gets her pain meds, it goes away. During the day, she is not using that shoulder as much these last two days so I don't know if she has hurt it or something but we will see at clinic what they say.
This has been Katia's Spring Break off from school and Tatiana too:)
Both have been enjoying the "time off" although they both have little projects to do here and there. Katia has some math to work on and thought it was going to be harder than it was but she has done quite well with it. She is learning to do "Column Math". I like the look on her face when she realizes she understands something. I have found it is best to do a little work with Katia every day because time off lets things drift out of her brain. But, just a few minutes of work keep things fresh in her brain and she doesn't mind sitting down and working with me. She likes workbooks as long as the writing is big and there isn't a LOT to do:)
I am very proud of Katia.
We were watching home movies yesterday from the time Tatiana was a one year old (she was cute!!!) and it was so neat to watch Katia's reactions to "Baby Tatiana". It was like Katia was the big sister suddenly. Also, Katia was the only one of my kids that never knew my beloved doggie that I had for 19 years, Skeezer:) He passed away before she was born. So, this is her only way of seeing him. She definitely knows all about him because he gets talked about all the time still today. It is nice looking back at old home movies. We don't film much now, just little things clips I do on my digital camera here and there when we are outside but back then we used to film a LOT!!!! I think we used a whole tape in 3 days leading up to Tatiana's 3rd birthday.
Fozzy was even watching the old home movies:)
So, that kind of catches up on what is going on here.
Please keep Katia in your prayers that we can get things switches from pills to suspensions and we can find the cause to what is causing this to suddenly be a problem. Also, that her shoulder and hip will feel better. Of course, we are always concerned about her GVH and immune system. There has been quite a bit of discussion and concern lately about Katia's immune system and White Blood Cells. When her immune system does kick in and start making its own, will it be good cells or bad cells? It could be either. We pray for all good cells. But, we will pray and pray and cross that bridge when it gets here. So far it has been 4 years and her immune system has still just held back mainly due to the GVH and the fact she is on so many immune suppressing medications.
Everyday is a gift and everyday is another day that a cure can be found, new treatments can be found and a reason to hope and believe.
Lots of love, Tracy
************************
April 6, 2008
Just wanted to post this these articles.
Emily's St. Pete Times Article
"Emily's Obituary"
Missing Emily deeply. Please keep her family in your prayers. Her website is updated and will have her service information when it is available.
Angel Emily Lester
Love, Tracy
PS The photo at the top is Fozzy. Just to "lighten things up". He, Katia and Tatiana have been enjoying spring break today INDOORS with the rain coming down outside.
April 5, 2008
Katia's Labs from yesterday
WBC 3.91
HGB 14.5
PLT 349
Abs. Neut 1.9
FK506 ?
IVIG Dose Given
I am actually not going to give much of an update on Katia today. We had clinic for a dose of IVIG and Pentamindine which went well.
I ask that you keep Emily Lester
your prayers as she is in very critical condition at St. Jude at this time. Detailed information can be found on her website. Each hour is very critical and right now, Emily needs a miracle.
UPDATE: EMILY ELIZABETH LESTER PASSED AWAY AT 2:OO A.M 4/5/08
Please keep her family and friends in your prayers as well as the many many lives she has touched and will continue to touch in your prayers.
Also, Ethan Powell
is desperately in need of a miralce. He is also at St. Jude and each minute it seems things are changing and adjustments are needing to be made to keep this little boy alive. Please pray for him and his family. His website is continuously updated.
UPDATE: ETHAN POWELL PASSED AWAY AT 11:37 AM 4/5/08 Please continue to pray for his family and all of those that supported him during his very short time here on earth. Though his time was short, he touched the lives of many.
Sierra K.Sierra K. just recently relapsed and her family has some difficult decisions to make but for now the prayers are centered around Sierra getting back into remission. Sierra has leukemia ALL and Down Syndrome and had just recently, very recently finished treatment but relapsed. Please keep her in prayer.
For prayer requests like these and updates on prayer requests or to post prayer requests, you can visit the "Staying in Touch" Message Board. The link is always at the top of this site as well.
I will update more on Katia next time I do an update on here. For this week, she is "off" for Spring Break for her Homebound School BUT she is going to be doing some preparation work for some math she will be working on. We will make it fun at least:)
We are going to be working on making some jewelry also and hopefully get to the park. She has been having some added issues with bleeding in her stools which appear to have cleared up possibly but we are keeping an eye on this still.
She also has had some "swallowing" concerns where she couldn't swallow. But that seems to have cleared up as well.
Please continue to keep Katia in your prayers. Love, Tracy
*******************
March 24, 2008 5:30 PM
Hello and belated Happy Easter. The picture above is Katia's "Pink" Day. Lately she has really been into pink so each day is about picking out pink things to put together to wear. Very fun:)
This past weekend, a concern has also been the pink of her skin. We are continuing to work (very slowly) on weaning her cellcept. We keep talking about this weaning process although the weaning actually takes place only every month or so and then she stays at that level for quite some time. It takes a while to see how she will react and then we leave her at that level for a while. This weekend her skin and eyes have not done too well with the lowered dose which took place this last clinic visit BUT, no real big flare ups just quite uncomfortable mainly her skin and especially her eyes.
I really really miss seeing Katia's eyes, her full eyes. I tear up just thinking about that. You know we have gotten so used to seeing Katia squinting that it isn't until we look back at pictures that we realize she doesn't ever really open her eyes. It is almost like a kitten or puppy when they are first born. Some days, she opens them more so than others (very few) and I realize and tell her, "Wow, your eyes are kind of open!" The picture on the side of the page? We don't see those eyes. I miss those. I am the kind of person that really does try to focus on the positive a lot. If I didn't I just wouldn't be me.
My world has become much more than just our world and about Katia. Our world has become focused on so many others that we are happy to hear when people have positive tests results or are considered cured or their scans are clear and when things go bad or someone passes, things really feel like they come crashing down. Before Katia was diagnosed, the world seemed much bigger than it does now. But, really people are much more connected than we sometimes realize. We found that out when we were searching for Katia's marrow match. How a complete stranger could actually be a perfect match.
Anyway, there has just been a lot going on in the Caringbridge world, our world and it really does stir up a lot of emotions. This time 6 years ago, we were really trying to figure out what was causing Katia's right eye to be not just swelling but literally changing in formation. If you are new to her story (or haven't read it for a while), you can scroll to the top of her page and read, "Katia's Story" to see how her journey began.
I have visited a LOT of Caringbridge sites over the years and have learned so much from reading others' journaling. I have learned life can change in a moment for any of us.
You know the book about not sweating the small stuff? I have read it, well most of it but so many times that is much easier said than done. But what it really means is don't take life for granted. Don't take people for granted. Life certainly isn't a Hallmark card though is it?
As April approaches, actually April 15th (tax day) it will be 6 years since Katia was diagnosed.
As that day approaches, I think of the fact right now she is cancer free, eagerly learning to read and despite the fact she has ongoing chronic GVHD, she has a laugh that can make anyone smile, she loves to hug and cuddle and she has been granted miracle after miracle.
I asked her yesterday why she liked pink so much and she said because, "Pink is smart!"
That's my Katia:)
Love, Tracy
March 19, 2008 10:30 PM
Counts from 3/18/08
WBC 2.77 low
HGB 15.0 high
PLT 329
ANC 1300 low
IGG=543
FK506=10.1
DEXA SCAN RESULTS
(less than -2.5 is Osteoporosis)
Whole Body= -3.1
Lumbar Spine= -2.8
Left Hip= -3.0
Katia had clinic yesterday right after she had her DEXA Scan (bone density test done. The Bone Density Test results should be in over the next day or so now. Hopefully there is some improvements.
To understand the scoring for the bone density you can check out this DEXA SCAN page but basically a score less than -2.5 is osteoporosis.
FOR 2006 KATIA'S SCORES WERE;
WHOLE BODY: -2.3
LUMBAR SPINE: -2.5
LEFT HIP: -3.7
FOR JULY 2007
WHOLE BODY: -2.8
LUMBAR SPINE: -2.9
LEFT HIP: -3.4
Since then, Katia has remained on steroids which of course isn't good for her bones but the good thing is she is a bit more active (thanks to FOZZY!) so who knows, maybe that will help:)
We are eager to see. She has been taking Fosamax for over 2 years now. She eats plenty of calcium and has a very well balanced diet as well as vitamins. Please pray the numbers improve or at least don't get worse. Last year the hip number slightly improved but the other numbers worsened. Her hip is the worse area.
Let's see, how about some good news???
Katia is reading better! She is sounding out some bigger words:)
She is actually picking up some Dr. Seuss books and reading them by sounding out the words with very little help. She is beginning to take books off her bookshelf all on her own just to try out this reading stuff. She is finding it to be a good thing and not as much of a struggle:)
She is working more on a 1st grade level and moving away from that K-5 level she had seemed to be stuck on for such a long time. So, that is really a big step forward for her.
She is still having a lot of eye difficulties so the words have to be big but most of the books she owns have big words and pictures.
She has been cleaning through her room the last few days looking for some Gameboy games she can't find, they really seem to have disappeared (I think she totally lost them at clinic) and she found a purse she used to always keep little trinkets in when she would go to clinic. Inside, she found an old marble she just thought was the coolest thing and she used to treasure it so much when we were in the hospital all that time and then at the Ronald McDonald House. She was so happy to find that! I was surprised she remembered it but she did:)
Well, I will add the IGG and FK506 counts when I know them, probably tomorrow.
Please keep Emily L. in your prayers. She really really needs our prayers.
Love, Tracy
March 16, 2008 2:15 PM
So I have gotten a few emails asking, "How is Katia?" and I realized, I hadn't updated on that part of things for a bit... sorry. Katia is about the same really. We have figured out a schedule with the medicine though and baths that she stays much more comfortable which is good. Her GVH is playing a balancing act as we stopped weaning the medication and right now the thought is to maybe go back up on what we were trying to wean. Not sure yet.
On Tuesday she is scheduled for her DEXA scan to check her bone density. Last year her bone density had worsened so hopefully this year she hasn't worsened. She is more active now than she used to be (Thank you, FOZZY!) so maybe that is helping. We will see. Her main areas of osteoporosis is her neck, hips and spine.
Other than that, she is scheduled for her regular labs, Pentamindine and IVIG on that day. We were planning to have an OBGYN visit that day under sedation but I am not sure that was able to be set up.
On another note, I just did an update on Estephany's Page for those of you that have been asking how she is doing. I have been trying to catch up on a few things.
During the end of the year, we were quite involved with KSFand now we are really picking up momentum again. Not sure I spelled that correctly. If you haven't been by the KSF site lately, drop by when you get the chance and visit the different links to see what has been going on.
Also, I would like to ask prayers for Emily L.. She has really been fighting hard lately with different infections and just so many obstacles but Emily really is a strong girl and if you haven't dropped by her site lately, please do and leave her a message. Her Mom is reading her the messages. Emily and her family have really been there for many Caringbridge Families during tough times, including Katia and now Emily could use some Ladybug Love to help her pull through this tough time.
Thanks for dropping in and checking on Ms. Katia:)
Love, Tracy
March 12, 2008 5:55 PM
More pictures from "Fashion Funds the Cure" Fashion Show.
March 12, 2008 1:15 AM
Katia had a very nice time tonight at the Fashion Funds the Cure Event tonight for the Pediatric Cancer Foundation so I wanted to go ahead and post the pictures:)
Usually I take much longer so here they are.
She was nervous but did a great job!!
Lots of love (now I am off to bed)
Love, Tracy
********************
March 7, 2008 3:30 PM
Seems things are improving:)
Katia is feeling better for longer periods of time so that is a good sign. Still relying on the vaseline and codeine and sitz baths but those three things are keeping her more on the mend. During the night is where we run into a problem because she kind of needs something every 4 hours or so.
But, Katia is one tough cookie and she really amazes me!
She has her appetite back FULL FORCE. When she is awake, her mind is definitely on food. Her nausea is gone which is a good thing.
She is really looking forward to the modeling show and I am looking forward to that for her:)
Katia doesn't get out much so these things really do become highlights and I know everyone participating (including the volunteers and the Pediatric Cancer Foundation as well as everyone from Saks) really looks forward to this event!
There is a lot involved in putting these types of things together. When we do something with The Katia Solomon Foundation, it takes a lot of planning even if the event itself is a 2 hour event.
While we are there we will be remembering some dear girls that are not able to be there because they are inpatient, recently relapsed or have passed away. Last year, that was really going through my mind as each girl walked the runway and I was really trying to just soak in every moment. These girls, their parents and siblings and families are amazing and each one has such an amazing story and journey to share. It is truly humbling to know each of them if only for a moment to share this experience with them.
Love, Tracy (and Katia)
She is right here hanging on me waiting for food....
March 5, 2008 11:15 AM
Update from last night:
CLINIC WENT OKAY.
THE "AREA" APPEARS TO BE IMPROVING WITH THE VASELINE AND FUNGAL CREAM AS WELL AS THE SOAKING IN THE TUB. THE CODEINE HELPS AS WELL. ATIVAN IS HELPING HER REST RIGHT NOW. HER BLOOD PRESSURE IS TOTALLY BACK TO NORMAL. SHE LOST SOME WEIGHT.
WE DISCUSSED THE IDEA WE HAVE BEEN WEANING HER CELLCEPT WHICH MAY HAVE SOMETHING TO DO WITH THIS SO THAT MAY BE INCREASED. THERE IS GOING TO BE SOME DISCUSSION.
ANOTHER IDEA IS JUST LIKE SHE HAS SEVERE DRYNESS IN HER EYES, THIS CAN BE THE CASE HERE NOW AS WELL ALSO?
THAT TO IS GOING TO BE DISCUSSED WITH SOME OTHER DOCTORS.
ONE THING FOR SURE, KATIA DOESN'T GO BY THE BOOKS.
SHE IS STILL STAYING NAUSEATED SO ALTHOUGH SHE HAS A BIG BIG APPETITE (STEROIDS!) SHE EATS A LITTLE AT A TIME. HER CRAVING MAINLY IS KFC OR PIZZA. GOTTA LOVE STEROIDS. I REMEMBER THE DAYS OF MACARONI AND CHEESE, DONUTS AND RICE PILAF!
SHE STILL EATS PLENTY OF GOOD STUFF THOUGH BECAUSE SHE HAS A MOM AND DAD THAT BELIEVE IN VEGGIES AND REGULAR FOOD (POOR CHILD).
Add on from this morning:
Katia has a pretty reasonable night... A few times of getting up feeling bad which including a bath and soaking for about 45 minutes, some medicine and vaseline, squirming around trying to find the right sleeping position, getting up again, walking around, quite a few tears and then finally finding some rest. That last for about 30 minutes at a time but then she would get up and be able to go without the tub baths and just do the vaseline and squirming and walking around. With all of this, she is always apologizing and hugging and no matter how much you tell Katia you don't mind staying up with her and it is okay because that is what Mommies and Daddies do, she insist on it and giving you hugs and thank yous.
One good thing is her nausea seems better. The Zofran seems to be working again and her pain doesn't seem as intense. The first night I would have given it a 9 on the pain scale. The second night about a 7 on the pain scale. Now I would say a 6 on the pain scale. It is just pretty ongoing. I can look at her and see she is just wiped out but she still lovable and thankful when she can play with Fozzy or watch a movie and relax. Her appetite is still there. Her big thing is KFC Laptops or McDonalds Happy Meals. Last night, we were up in the middle of the night and she was soaking in the tub and out of nowhere she said, "Remember when I couldn't have McDonalds? THAT was BAD!" I guess in her way, that is consoling herself.
Thank you for checking in and for your prayers.
Love, Tracy
March 3, 2008 12:30 PM
What started out as such a nice day yesterday, as you can see from the picture at the top of the page, didn't end so well last night. We ended up at the ER around 11PM till around 4AM.
Around 8PM or so, Katia didn't seem herself but wasn't saying much just seemed ready to go to bed. Around 9PM, that is what she did. Then about 30 minutes later, she came and said she couldn't pee and after getting some details it seemed she had a urinary tract infection maybe. Since she is very immunosuppressed, we can't take any chances for any infection to have a chance to brew so I called her doctor who wanted her to come right in to the ER to have a urine culture and blood test so that is what we did.
We got there about 11. Things were getting progressively worse though and in my mind I was beginning to think this wasn't a UTI maybe, maybe a bladder infection but Katia was saying her back or belly didn't hurt.
So, the ER doesn't move too quick but they got the urine and blood tests sent off and around 2PM, everything came back negative?? By this time though, Katia was in BIG BIG pain! Crying, rocking back and forth, moaning and really in pain but making it really clear, she didn't want to be admitted. She also didn't want a "full physical exam". In other words, nobody looking at the "area" that was hurting.
By this time, it was after 3 or so and now all of us are confused since everything came back negative and her WBC count was low not high which doesn't seem to point to any infection? I asked Katia some pretty detailed questions of what was hurting, when, and how.
In the back of my mind, I always have GVHD but I also know new things can always pop up since she basically has no immune system. With her answers, I took a look at the "area" and pretty well got my answer. She has a very irritated vaginal area which the ER doctors think is fungal and I as well as her transplant doctors think might also have to do with GVHD. I can definitely understand why Katia is in as much pain as she is in.
They gave her a script for a fungal med and she has codeine. We are working on some other treatments. We got home around 5 AM and she has basically been in pain since then, a lot of pain. She took a bath which gave her some relief. She has finally fallen asleep around noon but she is moving around quite a bit even so.
She is also quite nauseated with all of this and although she needs to pee, she is scared to do so or can't?
GVH has been her main ongoing chronic issue and at the time, it is mainly on her hips, knees, butt, armpits, her eyelids, corneas, slightly on her finger tips and hands, nails, in her mouth and it wouldn't be suprising to be affecting this area as well. Overall it is seen on her arms, cheeks and on other parts of her body lightly as a reddish appearance. It used to be in other areas like her scalp and cause her hair to fall out, it was much worse in her mouth and on her lips.
She has always remained on steroids (Prednisone) and has tried other medications to fight the GVH and is currently weaning off Cellcept to go onto another treatment to work along with the Prednisone. It will be quite a blessing when the day comes that the right combination is found that will cure Katia's GVH.
Thank you for your prayers.
I will post an update later.
I am praying this doesn't end up with an admit but at the same time, I want Katia to feel better and not be in so much pain and get feeling better and have this to start healing as quickly as possible so whatever is best is what we will do.
Love, Tracy
March 1, 2008 11:25 AM
Counts from 2/29/08
WBC 3.52
HGB 15.2
PLT 376
Abs. Neut 2.0
Creatinine 0.26
IGG 711
FK506 8.3
Clinic went well yesterday. It was REALLY busy when we arrived.
With Katia being sick, I almost tried to delay it till Tuesday but we went ahead and went. They did cultures since she had a cold but amazingly, she (and I) seem to basically be over the cold today!!! Thank you for your prayers!! It is amazing how you can go from feeling soooo bad one day to waking up and feeling so much better the next and the great thing is, you really realize how much better you feel:) The moment I woke up, I was like, "Wow, my cold is gone!"
Katia is quite pink this morning with GVH on her arms especially and her hips and underarms are showing GVH but her mouth, fingers and chin look pretty okay. Remember how bad her mouth was this time last year. We are still weaning her Cellcept whiich is a very slow process. She has been quite itchy through this but doesn't complain much. Her face gets quite red and rashy looking at times but for the most part stays cleared up looking as well as does her lips. She looks like she has lipstick on all the time but her lips don't looked chapped at all. Her finger nails are brittle but aren't breaking and her finger tips are peeling some but not as bad as they were. All of that appears to show the weaning process is going at just the right speed, not too fast, not too slow.
She enjoys soaking in the tub when she gets really itchy in bubble bath with Aloe Vera.
She is going to participate in the upcoming Fashion Funds the Cure Fashion Show again with the Pediatric Cancer Foundation. We kind of held off with making that decision kind of due to seeing where she would be with treatment, her counts and how she is feeling. There have been a lot of days that a T-Shirt underclothes is all Katia is going to see putting on for the day. Last year her counts were actually better than this year as far as her immune system.
But, another thing we have to consider is the fact Katia really really enjoyed participating and for the most part she really is homebound most of the time other than clinic and trips to the park. She really doesn't complain about any of that as it has become everyday to her. I didn't bring up the Fashion Show to her until we made up our mind to let her participate. She got her doctor's okay so now she is very much looking forward to it:)
For more information Click Here to attend the event, or see pictures from last year's event or even video.
So, what else?
I was going through the guestbook and Sheila (from NY) asked about the rest of the family. So, let me summarize. I appreciate always prayers for Katia and our family. As you know we have always been a very close family and with Sharayah now off to college, that has been a big change for us. She is doing well though and enjoying college. It was quite a change but we have all adapted including Sharayah. I have to say we are thankful for the age of communication:)
Myron and I are doing well. I update quite a bit about my seizures lately as that has been the ongoing issue with us. But, the good thing is I have remained seizure free since January 9th still so that is good and something we hope will continue.
Tatiana's back issues are once again being looked into as we recently changed doctors so hopefully we can get a new sense of focus maybe with a different perspective. Sometimes by getting with a different doctor or group of doctors something maybe seen that wasn't seen before. She however remains Katia's best source of entertainment right along with Mr. Fozzy!!
I can't believe March is already here as it seems 2008 just arrived. Time really does seem to fly by. Soon it will be 6 years since Katia was diagnosed. This time 6 years ago, we were seeing doctor after doctor trying to figure out what was wrong with Katia's eye (you can see Katia's story at the top of the site if you don't know what I am talking about) and about this time, we knew something was really wrong. I still, back then, never imagined we would be dealing with cancer although I think I knew we would be dealing with something serious.
Katia had a strength, even as a 2 year old though that could be seen and even though she was scared when she would go to these different eye doctors, she was just a typical baby at home even though, on the outside we could see something was wrong and a lot of days she didn't feel good.
I have learned a lot from not just Katia but a lot of kids on this journey.
Not in these exact words but definitely along this line...
Live today, laugh today, love today.
Love, Tracy
February 27, 2008 1:00 PM
KATIA HAS A REALLY YUCKY COLD RIGHT NOW WHICH SHE RARELY GETS (AT LEAST SHE RARELY GETS THEM)
SHE IS PRETTY MISERABLE. NO FEVER THOUGH. SHE FEELS CRUMMY, SORE SORE THROAT MAINLY AND STUFFY. SHE SLEEPS FOR THE MOST PART.
THIS COLD HAS GONE THROUGH THE WHOLE HOUSE THIS PAST WEEK OR SO.
THE PRAYER IS KATIA CAN GET THROUGH THIS FEVER FREE, IT DOESN'T CONGEST HER AND SHE STOPS FEELING "YUCKY" SOON. SHE ALWAYS DRAWS PICTURES FOR ALL OF US TO MAKE US HAPPY SO I DREW HER A CARD TO START HER DAY OFF
WE HAVE CLINIC FRIDAY.
SHE IS MY SWEETIE!
THANKS FOR YOUR PRAYERS.
LOVE, TRACY
February 22, 2008 5:00 PM
This is an amazing Video Lecture. It was seen by millions of viewers on Oprah. I received it via email and it really struck a chord with me and I wanted to share this. It is 12 minutes long. It is very worth the 12 minutes. I got a cup of coffee, sat down and watched it which is something I don't normally do. Getting me to sit still for 12 minutes? This was something that God definitely wanted me to watch.
"Last Lecture" by: Randy Pausch
Love, Tracy
February 17, 2008 10:00 AM
Counts from 2/15
WBC 4.27
HGB 13.7
PLT 369
IGG ?
FK506 8.1
I will fill in those ? when I get the levels.
Clinic went okay. Katia hasn't been feeling too well lately so we drew some blood cultures to see if anything grows but as of yet, no phone calls (that is good). Maybe it is just a viral bug of some sort. She has been feeling pretty nauseated and puny and getting the chills. No fevers though. Her appetite is down but she has gained weight.
We went out to the park yesterday which she has been VERY eager to do. She had an "okay" time and took some cute pictures. I will try to post a couple today. It was a nice day. Once we got out there, she was ready to get back home though. For the most part, Katia is doing reasonably well but in many ways, she is worn out. She is sore a lot especially her hips and feet tire easily and her back. She has found soaking in the bath is a very very comfortable place to be:)
She is doing better with spending more time on her school work each day. Ms. Michelle still comes out two days per week but Katia does a lot more work in between. As far as moving ahead, I think she is learning to work with math better although she would say she doesn't like math. She is learning early addition. She has learned to use blocks to make addition problems like 3 2, 2 2, 2-2, etc. In reading, she is able to phonically sound out the words, still not there yet. She is also doing much better with her writing. She practices writing the sentences from her stories using the captial and lowercase letters as well as the puctuation marks. Katia works very hard with her school work. She keeps her school supplies and books in order and is a very very good student:)
I still find it so hard to believe my little baby is now 8!!!
I am very proud of Katia because I know it isn't easy on her having had to face so much over the last 6 years and it still going on but I am grateful to see that God has given her that inner strength and that little "spunk" to deal with things day to day. Not to say she always has a great attitude.... but Katia is my baby and I am very very proud of her:)
Love, Tracy
***************
February 7, 2008 12:54
A DOG'S PURPOSE
(from a 6-year-old)
sent via email...
Being a veterinarian, I had been called to examine a ten-year-old Irish
Wolfhound named Belker. The dog's owners Ron, his wife, Lisa, and their
little boy, Shane, were all very attached to Belker, and they were hoping
for a miracle.
I examined Belker and found he was dying of cancer. I told the family we
couldn't do anything for Belker, and offered to perform the euthanasia
procedure for the old dog in their home.
As we made arrangements, Ron and Lisa told me they thought it would be good
for six-year-old Shane to observe the procedure.
They felt as though Shane might learn something from the experience.
The next day, I felt the familiar catch in my throat as Belker 's family
surrounded him. Shane seemed so calm, petting the old dog for the last
time, that I wondered if he understood wha t was going on. Within a few
minutes, Belker slipped peacefully away.
The little boy seemed to accept Belker's transition without any difficulty
or confusion. We sat together for a while after Belker's death, wondering
aloud about the sad fact that animal lives are shorter than human lives.
Shane, who had been listening quietly, piped up, "I know why."
Startled, we all turned to him. What came out of his mouth next stunned me.
I'd never heard a more comforting explanation.
He said, "People are born so that they can learn how to live a good life --
like loving everybody all the time and being nice, right?" The six-year-old
continued, "Well, dogs already know how to do that, so they don't have to
stay as long."
Remember, if a dog was the teacher you would learn things like:
When loved ones come home, always run to greet them.
Never pass up the opportunity to go for a joyride.
Allow the experience of fresh air and the wind in your face to be pure
ecstasy.
Take naps.
Stretch before rising.
Run, romp, and play daily.
Thrive on attention and let people touch you.
Avoid biting when a simple growl will do.
On warm days, stop to lie on your back on the grass.
On hot days, drink lots of water and lie under a shady tree.
When you're happy, dance around and wag your entire body.
Delight in the simple joy of a long walk.
Eat with gusto and enthusiasm. Stop when you have had enough.
Be loyal. Never pretend to be something you're not.
If what you want lies buried, dig until you find it.
When someone is having a bad day, be silent, sit close by and nuzzle them
gently.
Be always grateful for each new day.
That was sent to me via email so I just wanted to share it.
Love, Tracy
February 5, 2008 9:50 AM
So today, 4 years ago, this was the picture at All Children's Hospital, Katia getting a miracle, her 2nd chance at life due to the fact someone donated their newborn son's umbilical cord which was a 5/6 match to Katia.
When Katia relapsed in August 2003, we knew finding her marrow match would be next to impossible. But, with a lot of help from the hospital transplant cordinators, the community, and so many people we previously had not known who are now dear friends, in December, this match was found. Although it wasn't perfect, it was close enough to move forward with a match. At that time, it was found that Katia had a fungus in her lungs though which needed to first be dealt with or the transplant would make her too weak and hte fungus would take over.
Although it seemed hopeless, a lot of things had seemed that way and we had learned to focus on God and hope, we had learned her doctors did not give up and we had learned a lot of people, I mean a LOT of people were praying.
We also knew Katia was full of life and she had an extreme since of positive attitude. We were also very lucky to be so close to home because having Sharayah and Tatiana so close by and the fact Myron could bring them each day after school would lift Katia's spirits to a point of really giving her the boost she needed to get through another day.
When Katia relapsed on August 26, 2003, we didn't realize we would be returning to the hospital and not returning back home until 336 days but sometimes not knowing is better than knowing. But, we also knew that when we left home, there was a chance of Katia not returning home and that was a risk we were going to fight with all we had to overcome.
So, as we celebrate today, although Katia still battles rejecting the marrow, she is doing so from home, she is 8 years old, she is for the most part a happy 8 year old and I think she has a real sense of appreciation for life. She also has a lot of typical 8 year old ways. Hopefully someday soon, her body will accept the marrow and start making her immune system, hopefully her body will start making good cells, cancer will never return to her system and that part of her life will be behind her forever.
I woke up about 5:30 AM this morning and have been reading her journal history.
Doing so gives me such an appreciation (not that I wasn't there through it all) and I think of all of those just starting the journey or having loved ones facing relapse and transplant.
During Katia's time of relapse, the Katia Solomon Foundation was started which focuses not only on other families but also works alongside other establised organizations such as the National Marrow Donor Program and Florida Blood Serives. We receive referrals to help other families via hospitals and doctors through counseling, translation, fiancial help and other services. If you haven't visited KSF's site, please do so. We learned so much when we were faced with Katia's transplant. It isn't something we had planned for just like Katia's diagnosis with leukemia wasn't something we had planned for. It is something like just getting a hit with a brick suddenly on a sunny day. We realized any family can suddenly be affected by a loved one being diagnosed by cancer at any given time. We were one of those families that used to watch the different hospital telethons but we never imagined we would be participating speakers in one of those sharing our child's story.
So, as we celebrate today, we urge everyone reading this to please participate by visiting the KSF site, follow the different links at the top site, learn how you can become a registered marrow donor, blood donor, donate umbilical cord like the one that gave Katia a 2nd chance at life on February 5, 2004.
Thank you for following Katia's journey.
How did you first come to Katia's site? We love to hear from you:)
Love, Tracy
February 3, 2008 9 AM
WBC 2.60
HGB 14.9
PLT 376
ANC 1600
Katia had clinic Friday for her EKG/ECHO, Pentaminidine infusion and IVIG infusion. All went well, long day but went well:)
Picking up prescriptions didn't go so well but hopefully Monday that can all get worked out with some phone calls. She is out of a few but they gave her what she needs to get through the weekend for the most part.
Superbowl is today!! We are happy about that, Katia is more happy football season is coming to an end. She likes the game once it starts though. She likes the chips:)
If you a moment, please stop by the Katia Solomon Foundation Site as there have been quite a few things that have gone on over the end of 2007. I urge you to bookmark the site and drop by every so often and always, if you or someone you know aren't a registered marrow donor or a regular blood/blood product donor, please consider doing so. This is a way of saving lives. In two days Katia will be 4 years post-transplant!! Can you believe it?? FOUR years already! She still has yet to come up with her own immune system but someday she will. She is still totally reliant on the IVIG infusion every 4 to 6 weeks. So, until she starts making her own, we aren't sure what type of cells her body will make. But, we have had 4 years of many amazing milestones with Katia since that day of transplant. She is working very hard with Ms. Michelle and me on her school work, she has lost those 2 front teeth and one of her permanent teeth is now popping through up top. She is much more active around the house. Remember when she came home from transplant she couldn't walk. Now, she is pretty well on Fozzy's tail all over the house. She still is mostly locked down to the house and clinic. She has gotten to Disney and Sea World (gotta love the rainy day at SeaWorld). We didn't make it back to SeaWorld. We have gotten out to the park and Katia has gotten much more active at the park and learned to swing on her own. She is working on riding a bike-with training wheels but by herself.
Her GVHD is flaring but mainly due to the fact we are taking on her medications slowly away so we can hopefully add in the one that will be the answer to getting her GVHD under much better control all the way around. Her biggest issue is still those eyes. That is still the biggest issue that bothers her the most.
Katia biggest blessing? Her attitude. Obviously God gave her a great ability to keep that smile and positive attitude no matter what advesity she faces. Not that she is always smiling because He also gave her a really "spicey" personality to deal with all of this. We get to deal with a lot of "spice". Well her doctors get to deal with a lot of her "spice" as well. So does Ms. Michelle and quite a few other people who "cross her path" often enough like her sisters and even Fozzy.
Maybe I can catch some of that "spice" in pictures.
Katia has basically been going through all of this since January 2002 when the eye tumor was first starting to show (see the story at the top of her site) so 6 years now. So, most of her life. I guess she has a lot of reason but a lot of understanding. She watches documentaries and shows on TV and she is full of compassion for others. Her dream right now is to be a veternarian. She wants Fozzy to be her first patient. She is full of goals, like many of these kids facing cancer and other life threatenting diseases.
Katia also says thankyou for all of the cards she received and gifts for her birthday. She has gone through, organized and handled each card many many times! We read them to her over and over so we say thank you also. That was very kind. A lot of them are from kids and they are so sweet:)
It made me think about getting blank cards (totally blank) for Katia to make for others. She likes to make things but she can't really do much with scissors (how do you spell that).
Tatiana is doing homeschooling for the remainder of this school year and possibly next year. It is nice and something we have thought of doing for a while. She is doing well with it and it is actually helping her and Katia for them to both be here to school. Both of them are excelling.
Also, if you go by the KSF site, you can find out much more detailed information on what exactly it is we do with the funds we raise by visiting the link, Families Helped.
There is a current fund raiser going on which is mentioned on that link as well.
Have a good day and enjoy the Superbowl if you are a Superbowl person. Today might be one of those "SPICEY DAYS" for Ms. Katia:)
Lots of love, Tracy
Please keep Emily L. in your prayers.
**************
February 1, 2008 8:30 AM
We are off for an ECHO/EKG, IVIG infusion and Pentamindine.
Long day but needed.
Hope you each have a good day. This will be FiFi's first day to clinic:)
Love, Tracy
PS One of Katia's new teeth are peeping through her gums.
January 26, 2008 12:50 PM
Happy 8th Birthday Katia!!!!
Katia, you are such a sweet baby and we are so happy to have you in our lives!
I want to thank so many of you that have followed Katia for so long. You are such a blessing. Thankyou for your messages throughout the years and encouragment and prayers.
Quite a few are new to Katia's journey and hopefully you have been touched by her journey as we have been touched by your willingness to share your time and check on her progress. Thank you.
Katia is tickled PINK today as you can see! Pink seems to be the color of the day.
The picture above was taken last night. Hopefully we can get some good pictures throughout today although they may be with sunglasses, maybe not. We will see.
She is very excited and woke up in a fabulous mood! The doggies name in the picture above in Fifi:) SHE, (I keep saying "He" was made at Build-a-Bear and was a gift to her. They have a close bond! Fifi's birthday was yesterday:)
Today, I started out by reading the brief (although it has gotten longer than "brief" history of Katia's journey above. She really is a miracle and we are so blessed to be celebrating today. In just 10 more days we will be celebrating her 4 year post-transplant anniversary. Miracle after miracle!
Here is a pic of Katia being Katia...
This is from Katia... She is right here watching me so...
THANK YOU!!! THANK YOU!!!! THANK YOU!!!!!
I FEEL SO LOVED!!!
I GET CAKE TODAY!
I AM 8 AND I AM MISSING TWO TEETH BUT THERE IS ONE COMING BACK IN.
MY MOMMY IS ON THE COMPUTER AND SHE SAID I COULD TALK TO YOU. WELL I CAN TALK AND SHE WOULD SAY WHAT I AM SAYING.
I GOT A NEW POODLE. NOT A REAL DOG BUT ONE IN A STROLLER. HE IS STUFFED WITH FUZZY STUFF.
THERE IS A PICTURE WITH ME NEXT TO HIS FACE.
THANK YOU FOR TELLING ME HAPPY BIRTHDAY SO MUCH.
KATIA (SMILE HERE)
Lots of love, Tracy:)
January 21, 2008 4:50 PM
5 more days and counting till Katia's 8th birthday:)
Normally we are a little more set on what Katia is into for her birthday cake but this year isn't so clear. Although she is going to be 8, she isn't your typical 8 year old.
With all she has gone through AND the fact she has 2 older sisters, she is not "typical" at all.
But then sometimes she definitely "acts her age."
Today she got up and put on her shirt that says, "It isn't easy being me." So, I asked her, "Who do you think it is easy being?" You know who she said? Fozzy!
So, I told her, it can't be easy being a dog. They can't talk. They have to pretty well get it across when they are hungry, need to go pee, get what they want, etc. Anyway, she stuck to the fact, they have it made. I think Oprah's dogs may "have it made".
Katia has her days that she is like a toddler, then she is like a teenager and can suddenly be like a 30 year old and right back to being like a toddler. It is hard to tell. Since she has been around adults and teenagers so much, she blends well with us.
She is still very very much into Disney movies, playing with toddler toys, playing Playstation and dressing up as well though. She always has some little toy in her hand and a pretty little purse of some sort. She gets upset that she is still wearing 4T clothes (usually bigger shirts) but they look like baby clothes. She is 97 cm tall and weighs 18.2kg. That is 3'2" and 40 pounds. There is a lot packed into her size though:)
At the time of diagnosis (age 2 1/2), she was 2'10" and 28 pounds, 5 1/2 years ago. So, she has grown some:) 4" and 12 pounds.
Most of her stunted growth is due to some treatments prior to her bone marrow transplant but mainly to steroids which she will still be on to fight the GVHD that continues. Her eyes continue to be the main thing affected by the GVHD, especially her corneas are very sensitive some days they seem better and other days are quite miserable. Her hips are still quite bad. Her skin has seemed to be less red and itchy. Her fingers and mouth have shown improvement. Her fingernails have mostly remained the same but seem better than this time last year.
We are working on weaning her off one of her medications before we can start another treatment planned treatment for the GVHD.
The good thing is we are coming up to her 4 year post transplant anniversary on February 5th:)
She remains cancer free. She is happy. She continues her Homebound Schooling. She is still basically in a K-5/1st Grade level but in some ways she is progressing.
We look at Katia as our little miracle each day. We are grateful for so many things she has overcome and continues to overcome.
As she approaches this birthday, she is excited and we are excited for her:)
Lots of love, Tracy
***********
January 16, 2008 8:30 PM
Soon to be 8 years old:)
Counting down the days!!!
Turning 8 in 2008!!!!
Love, Katia:)
January 11, 2008
Just wanted to share something with you:)
A lot has changed since that picture posted from Christmas at the top of the page.
Love, Tracy
January 8, 2008
Finally an update of some sort:)
School is finally back in session so I should update. Katia is actually in class right now with Ms. Michelle while I do this update.
She was VERY excited to start classes again!!
Tatiana was thrilled to be back to school as well and Sharayah left back to college on Sunday.
Katia is off from clinic this week. She is actually going through a pretty yucky cold this week so she isn't too happy but she is handling it pretty well.
They took a throat and nose culture last week at clinic which hasn't grown anything (sounds nasty) so it is just something viral going on which should pass.
We are still weaning her Cellcept and staying at 12mg a Prednisone per day along with the rest of her daily meds.
She isn't due to go back until next Friday for her Pentamindine and to check her IGG levels and regular labs.
Florida has had some chilly days (at least for us Floridians) but today is nice and sunny outside.
I finally uploaded a couple of Christmas pictures and a picture of Fozzy on his 1st birthday (Christmas Day).
Hope each of you had a nice Christmas a New Year.
Lots of love, Tracy
January 1, 2008 12:27 AM
HAPPY NEW YEAR!!!
WE ARE 27 MINUTES INTO THE NEW YEAR:)
I have been meaning to update all day but what better time than the present? Now I can officially say, "Happy New Year".
There are a lot of fireworks going on around here so I couldn't be sleeping anyway.
With 2008 being here and Katia being a millenium baby, it means she will soon turn 8. It is easy to keep up with her age. She barely stayed awake to bring in the New Year but she managed and fell asleep about 15 minutes after.
Since the start of her site, we have had some great people sign the guestbook and show such great compassion and care and offer prayers and support and it is amazing how many still are stopping by along with so many new people. I read the guestbook and am truly amazed.
Remember when Katia really believed people lived in the computer? Now, she understands people throughout the states and world sign onto her page from their computers just like we sign onto other pages from our computer. I think it is amazing that she has gone from 2 years old to nearly 8 years old over the years over the course of this site so far.
This site has served as not only a way of sharing Katia's story and keeping friends and families updated but also a way of giving information to others that were going through similar treatments, patients and families being newly diagnosed and also a type of journal that someday Katia can look back on. For me, it has been a great way of expression I guess. I don't really know how else to put it. I enjoy writing and when Katia was originally diagnosed, I looked for resources of information and the best information that helped me was some Caringbridge sites that I found that I could read other Moms and Dads words expressing their own feelings. So 7 months into Katia's treatment, I decided to start this page. I wish I had earlier.
Now it is 2008. My goal for this year, my hope. Not just for Katia but for many people and families is, "2008 is going to be GREAT!" Just something, some situation, something big or something small to improve. I know things can't just happen on their own all the time so maybe it is something we have to look at that we can do to make that improvement or help it along or maybe it is something that is going to happen on its own?
2007 has had its blessings though. Katia is here. She is stable in her treatments. Her counts have remained relatively stable. Sharayah started college which is something she has worked hard toward since 6th grade.
In 2008, our hope is that we can get Katia's GVHD under better control. Get relief for her hips and eyes especially (GVHD related). Get her immune system better functioning. Find a way to wean her from steroids.
We are very thankful to continue to work with an awesome hospital, All Children's Hospital and a great team of Doctors there and at Bascom Palmer Eye Institute as well as Katia's fantastic HomeBound teacher that she has had the last 3 years.
So, with that all said (typed), I wish each of you a very happy, healthy, safe and GREAT new year. Thank you for following Katia's journey whether it be since the beginning, the middle or just recently. If you are new, you can visit www.ladybugkatia.com to see more of what we do.
Lots of love, Tracy
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