Journal

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LADYBUG CLUB BRACELETS-FEW AVAILABLE


Well, quite a few have been asking about "Ladybug Club Bracelets" and we have some beads finally and a few more coming in so for now, I have them:)

The link is over on www.ladybugkatia.com near the bottom if you are interested.
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June 24, 2009


Okay, well so far summer has started off for Katia without a "Bang"! She is bored to say the least. She is having to do schoolwork throughout the summer but not a lot. Mainly working on reading and writing to move ahead. She is progressing very slowly in those areas, as well as math but right now, we are concentrating in reading and writing, forming sentence structure and spelling. She is basically still at a first grade level. So, she needs to continuously work on this throughout the summer. Again though, she is doing just a little each day, but the SIGH that goes along with it is teenage level! I have to jump in for her though. Once she gets started, she does put her full effort into her work. Her handwriting is very nice. Things just really do not seem to be retained well. Letter recognition, writing letters correctly, spelling and phonics, etc. Her reading is ahead of her spelling. Katia is frustrated with this.

We think a good part of this has to do with her eyes being so effected by the Graft vs. Host Disease but also some of this has to do with her treatments and the fact her attention span is small and she still has many days of not feeling well so she isn't on a schedule of every day having a portion spent on education like most children would typically be. So, this means her progression is much slower and therefore, she does school work at odd times and during the summer. Her school work consist of some 1st and 2nd grade work. Her school level isn't looked at like most children's.

So, how is Katia feeling these days? Well, as mentioned her eyes are causing her a great deal of pain and discomfort right now. Two different types of issues bother Katia's eyes. One is discomfort in the way of irritation like the eyelids and the actual eyeball are messed up from Graft vs. Host. Eye drops used to offer some relief here and still do offer some. She has been on so many different types, both prescription like different steroid drops, restasis drops, over-the-counter drops, many times a day, lesser times a day, etc. She has done cloth compresses and creams and ointments. She has had cornea surgery which worked giving some relief as it scraped off the damage but the damage came right back within a couple of weeks since the Graft vs. Host Disease is still active. So, that part of the eye problem is still ongoing and something Katia is used to dealing with, sad I know.

The other eye problem is light. Light causes a great deal of problems and pain for Katia. She wears sunglasses all the time. Unless she is sleeping, she is wearing sunglasses. She will often fall asleep with them on. She will have them on to take a bath until it is time for me to wash her hair. This issue has gotten worse and worse. She is very light sensitive. We blocked off one of the windows in our house last summer, the one in our living room so it would be more comfortable. This keeps out some of the natural light and that does offer some help to Katia. She is home most all the time due to her immune system. We have always tried to work around her while also trying to keep things as "normal" as possible.

Katia has seen eye specialist, cornea specialist, gone to specialized eye centers and really what everything boils down to is the Graft vs. Host Disease. It keeps coming back to that. Her body needs to accept the marrow. When this will fully happen is unknown. Until that happens, her medicines continue, her immune system will be compromised, she will have to be restricted in what she is able to do and places she can go, etc.

Her other issue that has been caused by the Graft vs. Host it seems is her mouth. Her mouth has had numerous lesions throughout the past few years on her cheeks and tongue and now has an ongoing burning issue and pain which is effecting her eating ability causing her to lose weight. In the past 2 months she has lost about 5 pounds. Katia typically loves to eat and right before this really got to be a problem, her esophagus was an issue. That seemed to be resolved with surgery and this has become a problem, her mouth.

Katia was 2 when she was diagnosed and really didn't know what was going on. She knew her parents loved her and just wanted her family with her and as long as we were there and we seemed okay, the world was good and everything would be okay.

She was 3 1/2 when she relapsed, she was scared and she knew she would lose her hair (she was okay with that), she knew she would get more medicines that would make her sick (she was not okay with all of that!), she knew she was going back into the hospital (didn't like that) and she knew her doctors would do everything to make her better (she loved her doctors and nurses!).

During her time of treatments when she was 3 1/2 and while we were looking for a bone marrow match, Katia turned 4. Not only did she turn 4, she was learning a LOT about what was going on and what the world of cancer meant and just so much more than a 4 year old should have to know. Her world still revolved around her family but she was growing much more compassionate for others and their pain.

She has remained that way and she struggles right now with the fact she too wants to feel better. She just wants to simply feel good especially her eyes, now her mouth. She doesn't so much complain as you can see it simply wears on her. She wants to be a kid, feel good, go places, do things.

Katia has been able to do very fun things along the way like meet the Disney Princesses at Disney, a day at Seaworld, meet Ronald McDonald!, meet some other great fighters of cancer, Disney on Ice, have her Playhouse Wish fulfilled and along the way we have all met some of the most incredible people doing some amazing research that have dedicated their lives to finding better treatments and cures to cancer and other blood related diseases.

Katia does understand, as do we, that it could be worse, much worse. She has remained in remission since transplant. She is 5 years out of transplant. She has remained on medications for a long time that could be extremely hard on her body's organs and yet she is still able to take them. Katia has osteoporosis and yet has not had any fractures. She has a great team of doctors and a great hospital! On days when she seems really down or just doesn't feel good, it isn't as easy to distract her or give her the speech "it could be worse". I don't really think that speech is so much mine to give really. But, I can see that she must kind of give it to herself or something close to it. All in all, she is still that innocent child that has the mind to focus on the more positive things at hand and not the focusing on every negative thing going wrong at one time. It isn't so much a lesson learned but a lesson often forgot with age as we leave childhood behind it seems. They depend on the fact they will feel better and just leave it at that. As a parent, I find it hard to just leave it at that but I do put my faith in God and I leave it to Him.

The other night I was making dinner (something I should do more often I suppose) and Katia was sitting at the counter and we were actually talking about attitudes because she had just snapped at me after being called down about snapping at the dog for not wanting to be attached at the hip with her. I told her being rude was no way to talk to anyone, not a person, a family member, the dog, anyone. Don't make it a habit. She hadn't been feeling good and had been having a generally bad day anyway so I had said all I was going to say on the matter and she just put her head down on the counter. I thought either the light from the kitchen was bothering her eyes, she was pouting, or crying. So I asked, "What are you doing?" No answer.... So I asked her again, "What are you doing?" She looks up with the calmest look and answers, "Praying."


Katia has always found peace in praying and turning to God and she has always felt comfort in God answering her prayers. She doesn't go to Him for only big things but for anything, no matter how "small" it may seem to someone else.

She later said she was praying about "everything" so that pretty well summed it up for me.

Faith like a child:)

Love, Tracy






June 20, 2009



This was something I recently typed as a summary of Katia's Journey. I wanted to share it on here.




LADYBUG KATIA



At the age of 2, our daughter Katia had started having swelling around and under her right eye. This was getting larger and significantly changing in appearance over a couple of months.

Following surgery to embolize the blood vessles (cut off the circulation to the tumor), Katia suddenly became very ill with fevers and just seemed out of energy. In the ER, they tested her blood and spinal fluid and admitted her telling us they were concerned for meningitis.

Two days later, we were told our little two year old had leukemia AML. She went through 5 months of intensive chemotherapy which both got her very ill but also brought her into remission which was our prayer.

For months we went for blood work which showed she remained in remission. She would get admitted for fevers or infections but she did stay cancer free.

However in August 2003, she became ill and the cancer was back, very suddenly and very aggressively. We were told she would need to again reach remission and only a bone marrow transplant would be her chance of a cure.

Our family was tested and nobody matched her so we looked to the registry. Katia is multi-cultural. We had been getting very educated since she had been diagnosed and knew the chances of finding a match were very slim so we worked with our local blood centers and the National Marrow Donor Program to put together Blood/Marrow Drives.

We went to the Media to share Katia's story and let people know there were many people in need of a match every day. A lot of people came forward.

For months, no matches were found and Katia remained in the hospital on treatment.

Near the end of December 2003, a match was found in a 5/6 cord blood. Katia was scheduled for transplant to take place in January 2004. She would be just turning 4 years old then.

However, a fungus turned up in her lungs which needed to clear up before transplant could take place. A delay. Katia under went a lobectomy to remove the area where the fungus was located and the transplant was rescheduled for February 5, 2004.

The time of transplant was so long awaited and anticipated and the process is yet not much more than what seems like a blood transfusion it seems but the overall feeling is much like watching your baby be born again. It is seeing them have a new chance at life and the wonderful gift of someone donating that cord or their marrow.

Katia had issues pretty quickly with rejection of her transplant so she was put on antirejection medications.

After 248 days in the hospital, she was allowed to leave the hospital and go to the Ronald McDonald House behind the hospital!! It was our practice area before being released to go home home.

Throughout all of this I journaled through an online journal and everyone who read that was just as happy as we were that we were finally released:) Katia would go back and forth to clinic everyday to get her blood counts checked and it was a good thing because some days her antirejection medicine counts were totally off and could have become dangerously unlevel had not been checked. She was still in need of blood and platelet infusions at this time as well daily at times or every other day to three days so checking often was much needed. However, Katia was very happy to be outdoors and being free. After 336 days of being away from home. We returned home!! That was when Katia was 4 years old.

Katia is now 9 years old, 5 years post transplant. She has rejection issues still, mainly on her skin and with her eyes. Her corneas have quite a bit of "wear" on them which cause a lot of sensitivity to light. Katia's growth has been very stunted since her relapse at age 3. She is 3'3". She received quite a lot of radiation to her spine and brain as well as the orbit of her eye. She has been on steroids since early 2004 for rejection issues. She has osteoporosis due to treatments and steroids. She is slowly being weaned from the steroids and at this time is on the lowest dose ever and her rejection is showing the best progress ever. She has a Home Bound school teacher as she has a very surpressed immune system still.

Katia is a very caring and compassionate 9 year old. She loves her family, adores her doctors, her teacher and like all kids her age, she loves to play. She has a little 2 year old puppy, Fozzy that makes her very happy. Katia has always been known as, "Ladybug Katia" and she says when she grows up she was to be a Veterinarian.

Katia has been a symbol of hope to many, but to me (her Mom), she is my HERO!

Tracy Solomon (Mom!)

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Hospital Information:

KATIA SOLOMON
PO BOX 22375
TAMPA, FL 33622

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