Katia Solomon: Acroustic poem dedicated to Katia Solomon by Gerald C. Rinks.
Knights in white cotton armor Attend the needs of the princess. Together, they supplicate their knowledge, Integrate mighty silver weapons, mighty powders and the Awesome powers of God.
Sweetness plays the face. Ordinary becomes extraordinary to Leave all plainness in her life to wither. Over the curly hair the spirits of Many angels attend her tiny soul. Oh Master and Lord of all, create New love and hope in your servant, Katia.
This is and Acrostic Poem. The first letter of each line spells out Katia's name.
Diagnosed leukemia AML M4 April 15, 2002 Remission May 2002 Finished first protocol of treatments September 11, 2002 Relapsed in Spinal Fluid, Bone Marrow, and Blood August 26, 2003 Admit back to hospital August 27, 2003 Cord Blood Transplant February 5, 2004 HOME (after 336 days away)JULY 27, 2004
- Our daughter Katia, was born in January 2000. We thought she would be a millennium baby but she was born on the 26th! We were so happy and she was just a joy for our family. We have 2 older daughters, Sharayah and Tatiana so we were all excited to have a little baby in the house.
When Katia was 3 months old, she stopped breathing for a couple minutes. We called 911 and when the paramedics arrived a few minutes later, Katia was fine. There was no sign of any problems at her next doctor visit. That scare brought all of us closer to her and we basically spoiled her (but that was okay by all of us - she was our baby).
All was fine until right before Katia's 2nd birthday. We were getting ready for church and Katia was walking into our bedroom and fell and hit her head on our bed frame. It was a VERY hard hit but it didn't seem to really swell too bad as we put ice on it. We went to church and over the next few days we were pleased that her head healed up so quickly! Her birthday was 11 days after the hit and she appeared normal.
About a week after her birthday (18 days after the fall) we noticed some swelling around her right eye. Since the fall had not caused problems we didn't associate it with the fall. We took her to the doctor and she was treated for allergies.
A few days later the eye was twice as bad. We took her back and also showed the doctor some bruising on Katia's legs. The doctor said the bruising went with her age but decided the eye needed antibiotic ointment. Again, a couple of days passed and the eye was not only swelling worse but seemed to be protruding outward so we took her back. This visit she also had more bruising and some unexplainable sores on her back. The pediatrician wanted us to see an optometrist and had no explanations for the bruising or sores. She said maybe it was bugs. I was concerned, very concerned by now. I knew Katia wasn't around bugs and her activity level didn't explain the bruising.
I called the optometrist and after being told the next appointment was a few weeks away, I took Katia to the ER. I asked them to do a CT Scan of her head because I felt something was wrong. Five hours later the ER doctor came out and said the scans were clear. I called back the optometrist and explained all this in detail to her and she agreed to see her the next day. Katia went to her office and was immediately sent to get an MRI STAT. This doctor showed urgency finally!!! She sent someone to bring the scans back to her office.
That afternoon she called saying Katia had a large mass behind her right eye and she was sending us to another specialist. We had 4 or 5 appointments a week for a few weeks. Everyone was trying to come to an agreement of what this mass was and how to treat it. Finally it was decided to do plastic surgery and remove the tumor but before that could be done, she needed an embolism to cut off the blood circulation to lessen bleeding during surgery.
After the embolism, Katia came down very sick and was diagnosed with meningitis. She was hospitalized in isolation. Three days later, we were told she had leukemia and sent to All Children's Hospital, St. Pete via ambulance.
We were told a day later, that she had the worse of the leukemias... Acute Myelogenous leukemia. Katia went through 5 months of extensive chemo, had about 7 or 8 serious infections, a LOT of pain over this time and finally finished chemo in September of 2002.
In October and November of 2002, she was hospitalized for 2 more serious infections. The last one she had caused her to stop breathing and have a temperature of 107.8! I think back on that now and can't believe she is running around and currently remains in remission. It is a miracle! She was home for Thanksgiving and Christmas and celebrated the New Years at home. We pray she has a great year and can live a long, happy, and healthy life!
This is when we started this Caringbridge Page. Katia's Full Medical History, through her first treatments, can be found on a seperate site. I kept it, hoping it would be of help to someone else but also so I could keep up with ALL the information coming at us in just a short amount of time!
UPDATE ON 2003
After her inital treatments, Katia stayed in remission until August 2003. Near the beginning of August 2003, Katia was tested and totally found to be in remission. But, in late August 2003 due to some concerns I was having she was retested and found to have aggressively relapsed with up to 93 percent of her being leukemia. She had leukemia in her blood, marrow, central nervous system and brain. Katia was immediately admitted, started back on high dose radiation hoping she would reach remission. She started this going through alot of pain due to side effects and damage being done to her body. She also received direct radiation to her brain and the orginal tumor site in her right eye. At the same time, her family was tested to see if any of us were a marrow match. None of us were close. Seeing Katia has such a mix of culture in our families, we knew finding a marrow match would be nearly impossible but after sharing her story on the news, radio and papers, we found a lot of support and eager people willing to be tested. Hundreds were being tested in different drives, not only in Tampa but also in other parts of the nation. When a person registers anywhere, it goes on the NATIONAL MARROW DONOR REGISTRY and even if you aren't a match for the particular person who lead you to be tested you could be a match for anyone and your name stays on the registry until the age of 61 or you ask to be removed due to health changes that would make you non-qualified to be a marrow donor. A lot of drives were held for blood, platelet and many different types of blood products that people learned could be donated on a regular basis and without these blood product donations, patients cannot fight cancer as chemo and radiation wipes out ALL BLOOD CELLS leaving the patient in desperate need for blood products weekly, daily and even multiple times daily.
After 9 months of searching and many many many people being registered, a match was found. The match was an umbilical cord blood that had been donated during the time of the search. Umbilical cord blood is typically thrown away but this cord blood gave Katia a chance at living!! Please donate your baby's cord blood!! Katia is living proof as to why to donate and register as a marrow donor.
Katia has received many many pints of donated blood and blood products thanks to those precious people donating on a regular basis. If your health doesn't permit you to do this or register as a marrow donor, you can pass on the word to your family and coworkers and remind them regularly of the need. Out of the billions of people in the world, 6.5 million are registerd marrow donors. As a marrow donor you are agreeing that you will be willing to donate to anyone in need that you are a match for. If a person backs down because they wanted to donate just to a child or a woman or man or any particular person, a family is devastated knowing there WAS someone but that person changed their mind. If the person is found to have a health disorder at the time of the need, the family is notified the potential match was willing but unable to donate. A family understands this.
Transplant was scheduled for January 2004 but suddenly it was discovered Katia had a possibly fatal fungus growing in her lungs. If she went into transplant with this fungus (aspergillus), she would have no chance of getting through transplant as it would be fatal. So, she had surgery to have a partial lung removal. She recovered in ICU and prayers were answered.
Katia had her transplant on February 5th, 2004. This is a 2nd birthday for her and a day that we treasure each year!! Katia had her 4th birthday just days before receiving her transplant.
After 336 days away from home, Katia returned home under strict health requirements, very immunosuppressed, unable to walk and had a long road of recovery ahead of her to gain her strength back BUT each glance at Katia was a glance at a living miracle in our house!
2005-2008 Since Katia's transplant, her body has continuously shown signs of rejecting the transplant. This is called Graft vs Host Disease (GVHD). Primarily this GVHD has effected her skin, eyes, mouth and other outside areas of her body. To keep the GVHD from overtaking other areas of her body like her organs, she stays on medications causing her body to stay very immune surpressed. She remains homebound, not attending school but having a Homebound teacher come to the house. She goes to clinic to have labs done and receive different treatments one of which is an antibody infusion (IVIG) which is possible due to blood donors. This gives Katia's system a boost in her antibodies to allow her body to fight off infections. She wears a mask anytime she is out in public so she isn't exposed to anything that may get her sick.
Katia's biggest discomfort has been her eyes which have been very much affected by GVHD. The corneas stay very irritated and her eyes are very sensitive to light as well. Anyone who does see her usually sees her with big sunglasses:) Hopefully someday, her body will accept her bone marrow transplant and her eyes will become comfortable again and she will be able to fully open them, they won't be red and irrited but they will be bright and shining.
She is free of leukemia. She does stay pretty happy, does't complain much and accepts her life as a way of life. She smiles and laughs a LOT. She is very loving and a joy to be around. She is always full of hugs and kisses for me. Sometimes she is very very moody but that is due to steroids and not feeling well.
Katia's Interest:
This should be intesting...her intests change so often but some of Katia's have stayed the same for quite some time. She has loved ladybugs for a lonnnnng time so she wears them on her clothes and has little nick nacks and such all over the place from all over the world! She loves video games but her eyes are very sensative. She is learning to read and she REALLY wants to conquer reading!! She is still very much into her VSmile and Leapster as her eyes allow. She likes the Littlelist Petshop Animals, Polly Pocket, Neopets and Sailor Moon. She is getting the "itch" for the Wii and the Wii Fit... She is Mommy's helper and isn't one to ever be by herself so she is pretty well attached at the hip to one of us at all times. Katia doesn't go outside much due to her eyes being so sensitive to the sun even with her BIG and dark shades. She is however much more active inside the house. She loves her Homebound teacher, Ms. Michelle. She has had her since 2005. She adores her doctor! Katia either wants to be a doctor or veternarian when she grows up. RIGHT NOW (this often changes) her favorite shows come on Disney channel and her music taste is forever changing:) She loves to dress in pretty spring dresses (she is all girl in that department!) and at the same time she loves to be all comfy around the house in soft pants (5) and soft t-shirts(7/8) because of her itchy skin and GVH. She is quite puffy in appearance due to steroids and having been on the constantly since 2004 following her transplant. This has also caused her to have osteoporosis so keeping her active in some way is very important. Katia is great company and makes us laugh and always shows others about the appreciation of life. Through all, she smiles (most of the time). Her main thing she likes to do.... PLAY-PLAY-PLAY!
For those of you coming from MACS (www.makeachildsmile.org) Katia's Siblings: Katia has 2 older sisters (Sharayah-19, Tatiana-16). Both girls have played a HUGE role in Katia's care and keeping Katia happy which has been so much a part of her ongoing care with her having been homebound for so long. Along with being typical teenagers, they also very much enjoy reading fiction books and listening to music.
Katia Solomon PO BOX 22375 Tampa, FL 33622
TO READ THE REST OF KATIA'S STORY YOU CAN START BACK AT THE JOURNAL HISTORY PAGE.
YOU'RE A SPECIAL PERSON IN GOD'S EYES
One the day you were born... God held the stars Within His hands And watched as they twinkled and shined. He tried to find two of the best He observed, But He couldn't quite make up His mind. Then suddenly two of them danced in the air, And the rest of them took to the skies. On the day you were born, You were blessed with the stars that were chosen To shine in your eyes.
Written by Desiree Derosier-Kaczor--
"When a door closes, another door opens.
**If you would like to post a Katia Solomon Foundation banner to put on your site (there are a few to chose from), Click Here. I will send you the link and it would not take up any of your site's bandwith space. This would help us to reach more people.**
Mommy and Daughter March 2007 Thankyou, Pepito:)
Mommy Makes it Better
The times you have a boo boo On your arm or leg or toe, Mommy makes it better, And off to play you go.
If someone takes your toy Or gives you a mean look. Mommy makes it better, Reading a story from a book.
When you go off to the doctor And something has to hurt, Mommy makes it better, by calling you her "SQUIRT".
As you roll off of the sofa And fall onto the floor Mommy makes it better, By kissing what is sore.
If Mommy has to go bye bye, And she tells you that you can't, Mommy makes it better, By putting "Kissies" on your hand.
Now Mommy has a question, If there's cancer in your blood, Can Mommy make it better With her kisses and her love?
Written for Katia by Tracy Solomon (Mommy) * April 6, 2003
This is written, with those in mind, that have lost loved ones, today, yesterday or over the years.
ALONE ANOTHER STANDS
As each day we go through life, like a forever winding road, we never know what lies ahead or what tomorrow holds.
One thing we know for certain is the love we share inside. Through sickness and in health Our love is their to shine.
Some people just shine brighter Some people plant more seeds Some people are the givers While others have more needs.
Of course none of this is easy As our minds cannot explain Why some of those with so much love Must go through so much pain.
Why must some say goodbye to those they hold so dear? Sometimes over and over in just one passing year?
It's something unexplainable That I can not pretend to even know the answer for a broken heart to mend.
But know my prayers are always there, Like a beacon in the night That through the clouds, someday Again, will shine some light.
My prayer is for tomorrow to be brighter than today. For those to find the faith to get from day to day.
I pray that through the sufferings God will hold each hand. For as one must leave this earth, Alone another stands.
By: Tracy Solomon *September 20, 2004
If Only for a Moment
If only for a moment, I want to hold you tight, I want to see your pretty face, Treasure your very sight!
If only for a moment, I wish to see you play, Smile, laugh and run, On a beautiful Spring day.
If only for a moment, I will watch you as you sleep, Eat a sugar cookie, Or just play hide and seek.
If only for a moment, I want to hear you sing, See you learn to ride a bike, Or soar high in a swing.
If only for a moment, Let's do all we can do, Cause here now and forever, My sweet baby, I LOVE YOU!
Written for Katia by Tracy Solomon (Mommy) * April 6, 2003
Click to play on my playpage!!
In My Daughter's Eyes
by: Martina McBride
In my daughter's eyes I am a hero I am strong and wise and I know no fear But the truth is plain to see She was sent to rescue me I see who I wanna be In my daughter's eyes
In my daughter's eyes everyone is equal Darkness turns to light and the world is at peace This miracle God gave to me gives me strength when I am weak I find reason to believe In my daughter's eyes
And when she wraps her hand around my finger Oh it puts a smile in my heart Everything becomes a little clearer I realize what life is all about It's hangin' on when your heart has had enough It's giving more when you feel like giving up I've seen the light It's in my daugter's eyes
In my daughter's eyes I can see the future A reflection of who I am and what will be Though she'll grow and someday leave Maybe raise a family When I'm gone I hope you see how happy she made me For I'll be there In my daughter's eyes
CLICK HERE if you are looking for information on leukemia, lymphoma, blood cancer and/or many other cancerous and non-cancerous diseases and helpful links.
If a link doesn't work, please Contact Me so I can update it.
Normal Blood Counts *These numbers can vary
White Blood Cell 4.50 to 10.0 cells/mcL Red Blood Cell Male: 4.7 to 6.1cells/mcL Female: 4.2 to 5.4cells/mcL Hematocrit (varies with altitude) Male: 40.7 to 50.3% Female: 36.1 to 44.3% Hemoglobin (varies with altitude) Male: 13.8 to 17.2gm/dL Female: 12.1 to 15.1gm/dL MCV: 80 to 95 femtoliter MCH: 27 to 31 pg/cell MCHC: 32 to 36 gm/dL ANC: 2000-7800 Neutrophils 57-67% BUN 7-18mg/dL Creatinine 0.6-1.2mg/dL
This song is dedicated to the many who have gone before us and to their families who face this loss each and every day.
Journal
*****************
December 31, 2008
WBC 3.66 HGB 14.5 PLT 379 Creatinine 0.28
So, the last entry for 2008... WOW!
This year has not seen Katia admitted at all and Katia has gained more and more energy. Katia is learning to read
more and more and is enjoying her classes with Ms. Michelle. In a few weeks, this little girl who has beat so many
odds will be turning 9 years old and she has really been through quite a lot in those 9 years. However she is
still, in many ways, a typical 9 year old. In quite a few other ways, Katia is not typical at all. She is Katia the
Ladybug:)
Throughout the last 7 years, so many of you have shared the ups and downs with Katia and the laughter and tears
(more laughs). You have seen tons of photos and heard so many stories of what was going on, decisions being made,
day to day things and even sentences she was learning to read or you have even seen pictures she was drawing. A
great many of you are in the "Ladybug Club"! Someday we will add more members.
In many ways it is as though Katia doesn't change and in other ways she changes rapidly. She is like 9 going on 30!
We are just so blessed and grateful for every miracle Katia has been blessed with, our family has been blessed
with. Through difficult times, it is hard to stay down long when we focus on blessings.
As 2009 is fast approaching (now just hours away), I am sure there will be days of blessings and days of trials.
Throughout past trials, I have learned to never lose hope and to always rely on God.
I have had quite a bit going on recently with my own health so I have slacked a lot with updates and posting some
of Katia's recent labs. I have tried to start blogging (link is at the bottom of this site). I was sending out the
updates also to a list of email addresses which I haven't done for months so if you were on that list, I am sorry.
I appreciate everyone that stops by and continues to keep the little Ladybug in their prayers. Katia should be
going in for a barium swallow test to find out why she is choking with her food which I will update on (sooner than later I hope).
Much love to you.
Tracy Solomon www.tracysolomon.blogspot.com
December 24, 2008 8:45 PM
Merry Christmas Eve, almost Christmas:)
Katia is very very eager for an hour to go by so she can go to bed and Santa can come. This really has to be one of her favorite bedtimes of the year! The next would be her birthday when she wakes up a year older. She is actually only a day older but you know how kids are:)
Her clinic appointment was changed to Friday instead of today so today was kind of spent catching up and we actually watched a Christmas movie. For me to sit through an entire movie is not an easy thing. I have a really short attention span, really short. We watched Santa Clause 2. The last 2 days, we have watched Tinker Bell twice! Two full times. Katia has been in shock. It really is a cute movie though.
Katia has really changed so much since last Christmas, especially in her vocabulary and her desire for independence. She is learning to do things on her own. Seeing her growth is quite behind her abilities, we have made changes in the kitchen for her to be able to get to things on her own that she likes to get to. She likes to make her own snacks and such. She used to try to climb up on things but she definitely understands the danger behind doing that. Even with a stool, her arms are short so she can't reach things on the counters, so she has managed figuring out ways of reaching things and her favorite words are, "I can do it."
Along with the "I can do it" attitude comes frusteration when she can't. Sometimes she is unable to and other times she is not allowed to. She has a real "talent" for making her point (notice I left out the word "arguing"-oh, I guess I just stuck it in there!).
Throughout the day though, if you have kept up with Katia throughout her first treatments, relapse, transplant and since, you will know what I mean by this. I think about how thankful and I am to just have her home and into a "normal" routine of doing things in the kitchen, telling her to pick up her room, giving her baths, helping her with school work, and now waiting for Santa to come.
The little things really do matter:)
Please remember all of those that are fighting these diseases, are hospitalized during the holidays, the families of those that have passed on and always please pray for cures.
Love, Tracy (and Ladybug Katia!)
December 22, 2008
It has been a little while since I updated on Katia. She actually has a clinic appointment coming up for Pentamindine on Christmas Eve but I wanted to go ahead and update anyway. We hope everyone is having a good holiday season so far (and a safe one).
Watching the news, those of you who live up north are having some pretty rough weather in some areas and very cold. Makes me glad we in Florida. Don't get me wrong, snow is very pretty but I personally get cold in the freezer section of a grocery store. I can't imagine being in cold weather on a daily basis.
We do all watch the movies and think building a snowman looks fun or having a snowball fight looks exciting though. Katia is very eager for Christmas. She fell asleep under the Christmas tree a few days back while I was typing something. I guess my typing was boring or made a soothing sound:) It pretty well zonked her and Fozzy out on some pillows and a blanket Katia had under there.
Katia is doing pretty well. We have all had a cold in this house. Mine turned into a horrible cough and then ended up causing breathing issues which I am just getting over. I still have issues here and there. We were very grateful Katia seemed to be avoiding everything. About a week ago, she came down with "gunk" as she calls it in her throat and nose. But decongestants seem to be keeping her clear. So far so good. She will have the "gunk" sampled at clinic just to make sure it isn't an infection.
It's been nice connecting with a few of you over on Facebook or in the blogging world. Both are linked here on the site. Facebook is my email address. tmsol87@aol.com and the blog is at the bottom of the site.
Katia has received a lot of Christmas cards. I am amazed at some of the cards people can make by hand and some of the art kids can draw! Such sweet cards and thoughtfulness in sending them. Thank you so much:)
Our family wants to wish everyone a very blessed and Merry Christmas.
Love, The Solomon Family
December 4, 2008 8:45 AM
WBC 2.37 LOW HGB 14.1 PLT 363 Creatinine 0.29 IGG
Yesterday I took Katia in for a video swallow study. She has been having more and more choking spells. First it started with certain pills and then one by one we switched her medicines to liquids. Then she started choking on foods, not all of the sudden but one food at a time. Same thing, just started not being able to tolerate this food and then that food. Katia loves to eat so she wasn't willing to start crossing foods off the list. She just would try to chew and chew but that wasn't sufficient so certain foods she just won't eat.
This choking was getting bad enough that it was making her feel as though she would lose her breath. So, the swallow study was lined up.
They said to bring in some things that would cause her to choke her to choke which of course had Katia upset so I let her pick. One thing was corn. That doesn't always make her choke because she has learn to chew it to a liquid practically. The other was a pill. She used to take 12-15 pills in the morning and same in the evening. Some were big capsules.
She was very nervous going in. When we got there, they had a big barium (sp) pill for her to take so they could watch it go down but Katia freaked over that. It was like 5 times that size of the pill we brought. It was the size of a Tums. So, they cut that in half for her to take. They mixed barium powder in the corn, some pudding, some strawberry milk and Teddy Graham cookies. The idea is for her to chew this stuff and eat it and we are able to watch all of this and see how it goes from her mouth, down her throat and down, either to her windpipe or through her esophagus. So, being the child Katia is, she wanted to get the hard-to-do stuff out of the way first. So, she wanted to do the big pill first. She did and we saw that it didn't go into her windpipe but it went into her esophagus and to a certain point and got stuck. She started choking and coughing and crying like she does at home and we were able to see the pill sitting there (which was quite a way down) and then somehow, Katia is able to get the pill up and back out. Remember this pill is about half the size of a Tums. So, we ask if she is willing to try something else with this pill. She hesitantly agrees. She wants to find out the problem so she can stop choking also. The next thing is to take the pill with pudding. We try this and the pudding goes through but the pill doesn't. But what we notice is even when the pudding is going through, there is an area in the esophagus where the pudding seems to thin way down.
The cookies were next, Katia chewed them down to nothing and swallowed them fine. The corn, we gave her three kernels and she chewed them again much longer than most people and then swallowed them one at a time.
Lastly, we gave her the strawberry drink and everytime she swallowed, we noticed the area where the pills got stuck which we ended up having things get stuck a total of 3 times, the drink would thin out nearly to nothing and then expand back out. So, this test shows us where the problem is but was not the correct test since the issue is actually not choking in the windpipe.
So, Katia will be referred for another test. It does show us there is an actual issue and it isn't that Katia is nervous or panicking or not chewing her food properly or anything of that sort. The liquid is having a hard time going through. I was amazed at Katia's willingness to repeat the choking to give us a better look at the problem. Even knowing what the outcome would be doing it over. She is willing to try. She is always willing to go through the testing she has had to endure through all of this since she was 2 years old and as she gets older, she understands more of the necessity of things. She can also be more detailed in her explinations of the problems and even give an idea of what she thinks needs to be done.
I am so proud of her:)
Love, Tracy
November 27, 2008 10:30 PM
Wishing everyone a very Happy Thanksgiving:)
Katia is busy watching the Macy's Thanksgiving Parade. She had a pretty late start this morning but she is ready for her Macaroni and Cheese and Mashed Patatoes! A little turkey on the side. Not much meat for her tummy right now.
Fozzy is ready for his turkey too!!
Katia is just eager to see Santa roll in on the parade and mark the beginning of the Christmas season so she can officially listen to nothing but Christmas music 24 hours a day:)
I am not sure if I updated after last clinic visit, I will have to check and I still have to figure out if we are going to do clinic Monday or Tuesday. My own doctor appointments are conflicting with Katia's so we are having to schedule things around eachother. Katia is needing to get a swallow study done as she is still choking on a lot of things even more than just a month ago so the problem is worsening and recently the problem of getting lightheaded during these episodes is causing more concerns so we are hoping to do this study at her next clinic appointment this coming week.
Other than that, she seems to be about the same, counts about the same, energy about the same, appetite, etc.
We have much to be thankful for today on Thanksgiving and always we keep many in prayer.
Thank you for checking in and keeping Katia in your prayers.
God bless, Tracy (and Katia who is now right here watching what I am doing!)
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