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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
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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
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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
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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.
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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.'
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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
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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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