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 hundreds, if not thousands of 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!
During 2005 and 2006, Katia's body rejected her marrow and caused a lot of Graft vs. Host Disease. She underwent many many treatments. She also had a lot of problems with her eyes, her bones, her back and developed osteoporosis throughout her body due to the continued usage and need for steroids. But, she learned to walk again and got stronger each day. She started Home Bound Kindergarten with an amazing teacher. Katia is a happy little girl!! She is LITTLE. She hasn't grown since transplant due to steroids and treatments. She has been on many different trials with hopes that something would help the GVHD to go away and her body to finally accept the new marrow. Her GVHD is mainly in her eyes, mouth, knees, skin, hips quite badly. On the skin it is like sceloderma which is a hardening and thickening in the top few layers of your skin. This is worse on hips than anywhere else.
UPDATE APRIL 2007
Katia's main ongoing issue at this time is GVHD which is Graft vs. Host Disease. This is where her body tries to reject the donated marrow and this has been going on with Katia (at different levels) since transplant in February 2004. So, to best describe how GVHD affects Katia, here is a pretty detailed description at this point.
So, here is where she stands right now and what our long term "idea" is.
First her GVHD is painful in certain areas and not so much in others. Due to the GVHD, she has very thickened, hardened skin in her hips which becomes painful as it isn't able to stretch so it hurts as it is unflexible with hip movement. She has lotion she uses to keep it from scaling and peeling but the hardening is permanent and effects 3 to 4 layers of her skin in that area on both hips.
Her knees have the same thing but the skin is just thickened and hard but not as stretched so they look painful and irritated at times but she doesn't complain they hurt.
Her mouth gets a lot of mouth sores and has one permanent enlarged area in her cheek. Her mouth improves and gets worse with no real explination and she has learned to eat without biting the enlarged area but somedays are worse than others with pain.
Her eyes are the most ongoing and painful issues that more effect her quality of life, school, sleep, going outside, riding in the car or even having houselights on. That is what causes her the most ongoing pain and what causes us the most grief as we know it effects her comfort and happiness and is effecting her schooling.
For all of this she remains on immune suppressing medications for an unknown amount of time. Maybe one day her body will just stop rejecting her marrow. Maybe she will be on her medicines for a long long time. Maybe a new treatment will come along or a trial drug that will work. The steroids seem to be the one thing that keeps the GVHD from taking over her. She has been on them since transplant in February 2004 and they are stunting her growth completely, hard on her bones having caused severe osteoporosis in her hips and spine and just aren't really holding the GVHD back the way they used to BUT we can't seem to wean them down all the way or she flares up with such severe GVHD, it could be fatal so for now, we just keep her on the same drugs as long as need be or until her body accepts the marrow or a new treatment comes along.
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.
UPDATE APRIL 2008
Things pretty much have remained much of the same over the past year. Katia continues with chronic GVHD. Her mouth has cleared up from the GVH however which has been great so her eating has been able to improve. She remains Homebound due to the fact she is still very immunosuppressed. She still does her schooling twice a week with Ms. Michelle (who she adores!). Katia is learning to read! She is around a 1st grade level. She likes to work with her reading although she does still have a lot of eye pain and sensitivity due to cornea damage from Graft vs. Host Disease but prefers that the Math portion of school stay short and sweet... The eye situation is something that has really been put to the side for now for the reasons that anything that is done is to relieve Katia's eye pain or damage done GVH is quickly undone due to the fact the GVH is still very much ongoing. Her eyes are extremely sensitive to the sun and even indoor lighting at times. Over the past few months we have seen some degree of improvement in the areas of her hips however. Our prayer is that Katia's body will someday just accept the marrow from the transplant that took place in February 2004 and the rejection issue will slowly resolve on its own. Everything we have done medically has worked to keep the GVHD at bay from flare ups but nothing is able to stop it and it has continued to go from one area to the next. However, there is always a bit of positivity with Katia... that is just the way it is. Katia is a very caring person and pretty well has her mind set right now that someday she is going to be an "animal doctor" so she can help animals that feel bad. She is growing up before our eyes. She hasn't grown in height at all, still right around 3ft tall but she is growing as a person. She has been through so much yet she is just an amazing little girl who likes to have fun, play games and be happy. She doesn't complain about her clinic visits or what she has to go through. She just does that because she is used to those things. She is just Katia:) Ladybug Katia.
Katia's Interest:
This should be intesting...kids' 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, 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. 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). Throughout the years of being listed on MACS, they have very much appreciated the cards and gifts sent and their little sister being loved and thought of by so many. This has truly been a blessing. Both girls very much enjoy reading and music.
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
Katia had her regular clinic visit for her Pentamindine Infusion and labs. Her labs looked better than last time although her WBC are still below normal but up over the last two visits so that is better.
Overall she is just itchy but not "pink" on her skin and her skin patches on her hips, knees and chin are better than they were a year ago. Katia's GVH is just kind of hanging around but not getting any worse at this point and seems to slowly be improving with the medications she is currently on. At one point we had thought about starting her on a new treatment when we stopped the Pentostatin but we have no plans of doing that at this time. She just continues on the steroids and her other immunosuppression medications and little by little we are going to try to wean the steroids and see how the GVH responds to weaning.
Still, Katia's biggest issue is definitely her little eyes. They are so uncomfortable all the time and really there are no answers on how to deal with them. We are always looking into different treatments and by we, that includes different studies in different hospitals. Her doctors follow different studies. There is actually another study going on that we may look into. It doesn't have anything directly to do with the eyes, just GVH but it may not hurt to look into it at least. The problem is always whether or not she qualifies due to what treatments and studies she has already participated in, her age, what stage GVH she has, and many other qualifications they look at. Also, we have to look at the added risk involved in trying (especially if it involves any added medications). Katia's body has been on so many very strong medications for a very long time and by God's grace she has been able to continue them.
So many have prayed for Katia throughout the years, left so many words of encouragement, and just always been there through the hard times and the good times.
Katia is learning to read and enjoying books more and more. We knew she would love the ability to read. She is learning math more and more, learning to tell time and learning to count money. For so long, this has been a struggle for her but she has worked very hard and, as she puts it, "things are clicking together".
Through everything, it is always better to focus on the positives.
I love quotes so of course my kids get to hear a LOT of them and one of them that I found lately is:
"If we all did the things we are capable of, we would astound ourselves." Thomas Edison
Very true.
We have always really tried to instill the joy of reading with our children and Katia is catching onto this little by little. Tatiana likes Jane Austin right now. Sharayah has always enjoyed books even though college has kept her busy with classes and reading is hard to squeeze in sometimes. I have always enjoyed autobiographies. Katia loves little story books and "different kind of books". Both Tatiana and Katia are schooled at home so they get a lot of time to enjoy reading which is nice and I think very important.
Tatiana has her upcoming follow up visit with her doctor to go over all her scans for her back, brain, shoulder and neck on the 19th of September and to come up with either more ideas or some sort of therapy or something to help give her some sort of relief. Thank you for keeping her in your prayers.
Although I don't update often (I am not sure really who checks this site anymore) I have given a lengthy update:)
I will try to work on changing the picture. I will have to get creative as Katia doesn't take pictures without her sunglasses and we really haven't been taking much pictures lately.
Also, if you have a Facebook, you can find me over there by my email address tmsol87@aol.com
I keep up with that daily.
Hopefully things will stay steady with Katia or get better and this page will never have to be used urgently or for daily updates or multiple daily updates again.
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