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.
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.
Today is a day honoring Mothers and my day started with Tatiana and Katia whipping up some pancakes for me:)
For many reasons Mother's Day is a very special day for me. God has blessed me with 3 beautful daughters, my own Mom has become closer to me over the past few years and Myron's Mom has been such an important part of my life over the past 22 years that some sort of a title for what is to me wouldn't sum up what she is to me.
She is very special and has always been like a Mom to me.
I received a poem (well kind of like a poem) via email earlier from someone who has not only herself been a very important part of my life but her family was also very important in my life.
This is about Mother's Day but I think it is about Mother's everyday.
***************************************
Mother's Day.
This is for the mothers who have sat up all night with sick toddlers in their arms, wiping up puke laced with Oscar Mayer wieners and cherry Kool-Aid saying, 'It's okay honey, Mommy's here'.
Who have sat in rocking chairs for hours on end soothing crying babies who can't be comforted. This is for all the mothers who show up at work with spit-up in their hair and milk stains on their blouses and diapers in their purse.
For all the mothers who run carpools and make cookies and sew Halloween costumes. And all the mothers who DON'T.
This is for the mothers who gave birth to babies they'll never see. And the mothers who took those babies and gave them homes.
This is for the mothers whose priceless art collections are hanging on their refrigerator doors.
And for all the mothers who froze their buns on metal bleachers at football, hockey or soccer games instead of watching from the warmth of their cars, so that when their kids asked, 'Did you see me, Mom?' they could say, 'Of course, I wouldn't have missed it for the world,' and mean it.
This is for all the mothers who yell at their kids in the grocery store and swat them in despair when they stomp their feet and scream for ice cream before dinner. And for all the mothers who count to ten instead, but realize how child abuse happens.
This is for all the mothers who sat down with their children and explained all about making babies. And for all the (grand) mothers who wanted to, but just couldn't find the words.
This is for all the mothers who go hungry, so their children can eat.
For all the mothers who read 'Goodnight, Moon' twice a night for a year. And then read it again. ‘Just one more time.'
This is for all the mothers who taught their children to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead.
This is for all the mothers who teach their sons to cook and their daughters to sink a jump shot.
This is for every mother whose head turns automatically when a little voice calls 'Mom?' in a crowd, even though they know their own offspring are at home -- or even away at college.
This is for all the mothers who sent their kids to school with stomach aches, assuring them they'd be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.
This is for mothers whose children have gone astray, who can't find the words to reach them.
For all the mothers who bite their lips until they bleed when their 14 year olds dye their hair green.
For all the mothers of the victims of recent school shootings, and the mothers of those who did the shooting.
For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely.
This is for all the mothers who taught their children to be peaceful, and now pray they come home safely from a war.
What makes a good Mother anyway? Is it patience? Compassion? Broad hips?
The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time?
Or is it in her heart?
Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time? The jolt that takes you from sleep to dread, from bed to crib at 2 A.M. to put your hand on the back of a sleeping baby? The panic, years later, that comes again at 2 A.M. when you just want to hear their key in the door and know they are safe again in your home?
Or the need to flee from wherever you are and hug your child when you hear news of a fire, a car accident, a child dying?
The emotions of motherhood are universal and so our thoughts are for young mothers stumbling through diaper changes and sleep deprivation...
And mature mothers learning to let go.
For working mothers and stay-at-home mothers.
Single mothers and married mothers.
Mothers with money, mothers without.
This is for you all. For all of us.
Hang in there. In the end we can only do the best we can. Tell them every day that we love them. And pray.
Please pass along to all the Moms in your life.
'Home is what catches you when you fall - and we all fall.'
***************************************
Love, Tracy
May 9, 2008 4:06 PM
So, I added a few new pics. I added some "Relay for Life" pics on the Photo page. I really love the "Survivor" one. That word means so much and the American Cancer Society, Leukemia and Lymphoma Society, Pediatric Cancer Foundation, Childrens Cancer Center, National Marrow Donor Program, Florida Blood Services and yes, the Katia Solomon Foundation, everyone working together to not only help find a cure but also help with treatments and during treatments really mean so much to patients and their families. We have had the opportunity to be on both sides as a family with someone going through cancer and also as a Foundation helping families go through treatment. Katia walked that track slowly but if you remember, walking hasn't always been something she could do and not long ago, walking distance wasn't something she could do. So, we are always grateful for advances she does make and those advances are made possible by God,medical advances, her doctors, and so many of your continued prayers and support.
Love, Tracy
May 9, 2008 12:43 PM
WBC 3.3 HGB 13.2 PLT 463 FK506 3.1
Hello. Katia had clinic yesterday so those are the counts (well preliminary counts). We actually were there just briefly, didn't even get plugged in for anything:)
That is a rare thing.
We go back next week for Pentamindine and IVIG. The visit yesterday was mainly due to the fact her WBC had been dropping and we needed to make sure it wasn't going down more or she may have need GCSF. But, the clinic counts show it went up to 3.3.
Katia has been having difficulty having bowel movements. When she would go she was in a lot of pain. Mineral oil always solves the problem if she is constipated. Usually within a few hours of the first dose she starts getting some sort of relief and gets back on track but the pain wasn't going away. Well, she has a little rectal fissure (tear). She hasn't had one for quite some time. They really do hurt. The mineral oil helps as well as soaking in the tub and good 'ole Butt Paste (that stuff is really good!)
I just feel bad for her. She has a lot of patience though so she is laying low today but pretty attached at the hip to me and if she has to make a trip to the bathroom, I must go with her.
I am glad her counts came up so hopefully this can heal up. Since she is is so immunosuppressed it takes a while for things to go away.
She is happy about her Pet Rocks being liked:)
It isn't noted on the page but the shipping and handling is the same no matter if a person orders one Pet Rock or ten of them. I should have noted that. I need to make that clear.
She has quite a few of them done and more ready to stick the eyes on and decorate.
She hasn't had school this week due to an added doctor visit and her teacher has been sick. However, Katia has been practicing her reading and is moving along with that pretty well I think.
She is munching Cheerios as I type (we support the Cheerio company!) and wondering why I didn't change the pictures on the site yet?????
Good question.
I will.
I need to downsize them and get them on here. She is really on top of things, you think?
Love, Tracy
May 7, 2008 10: 25 AM
Well, there were 3 things I was supposed to get posted. The craft project of Katia's....
Done:)
The "Disney on Ice" pictures. I have uploaded them and I am nearly done with those. They came out really dark which isn't surprising seeing the place was really dark. I will post a few of those today (or tomorrow) though.
And then we were invited to speak at a Relay for Life event last weekend so I have some pictures from that as well.
So, I guess I will just make some photo collages(sp).
You know how you get started on something and then you get started on something else and then something else. Well that is me lately. It isn't like me to be that way. So, stick with me. Even Katia wants me to change that picture of the bike off of here.
But, she is happy her rocks are done. I wouldn't let her use the glue by herself for the eyeballs on the rocks. I was stalling her project. The glue wasn't as sticky as I thought it would be.
We have clinic tomorrow mainly because her ANC has steadily been going down and also we have to hand in some poopies. She is off the yucky medicine since Monday so we are praying and praying the C-Diff will be gone and stay away. It is kind of known for coming back with Katia (and other people) so we don't want that to happen. She really was excited when I said she was taking her last dose of Flagyl and I hope that was really right.
She is still run down quite a bit and nauseated but not nauseated as much or as often so that is good. No runny stools. No fevers. She takes naps quite a bit. That can always be due to eye pain though. Her appetite??? Well, kind sorta maybe?? Not great but enough. Her drinking? Better.
Labs will say a lot.
I will update after clinic with her labs.
Katia is anxious to see how you like her Rocks and hopefully some of them can find some new friends and good homes. She has been a good Mommy to a few of her own that she received over the year. She has hauled them around back and forth to Miami, to clinic, to the hospital, to wherever:)
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