Make A Child Smile

Katia's Story
written by mom Tracy

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 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. She was home for Thanksgiving and Christmas and celebrated the New Years at home.

Katia was home until August 2003 and very much enjoyed participating in daily activities and playing around the house and in her new backyard (WE MOVED TO A HOUSE!).

On August 26th, 2003 we found out Katia relapsed 93% in her spinal fluid, 28% in her bone marrow and also in her blood. She was hospitalized August 27th to prepare for a Bone Marrow Transplant but we couldn't find her a bone marrow match. We stayed in the hospital dealing with numerous infections, aspergillus in her lungs and waiting for a match. Finally in late December 2003, she found a 5/6 cord match.

Katia finally had her transplant on February 5, 2004!!! What a wonderful day. She responded well to the transplant and didn't get horribly sick from it. The lungs were our biggest concern and until now, she hasn't had any lung problems.

After 336 days away from home, Katia returned home on July 27, 2004. On February 5, 2007, Katia celebrated her 3 year post transplant anniversary just days after turning 7 years old. Back when she was diagnosed we were told her chances of reaching her 3rd birthday were very very slim. HERE SHE IS TODAY!!!

Katia adores her mail. She loves to set up her cards and has learned to make them into art projects like little gift boxes.

Katia's main struggles now are with Graft vs. Host Disease. Her eyes are extremely sore and sensitive especially to light. She has been on high to medium dose steroids now for over 3 years. She has severe osteoporosis in her spine and hips. She hasn't grown since she was 3 years old. That is kind of a blessing as the added size and weight would put more pressure on her hips and spine.

She is currently still in Homebound Schooling and has learning disabilities. She has a wonderful and patient teacher and Katia is trying to learn to read, count to 100, and recognize numbers and letters. Her big goal is reading!!! She just got her first BIG GIRL bike and is eager to learn to ride (without training wheels).

Katia is a brave, sweet, SPUNKY, and funny little girl. We are proud and happy to be her family and we thank each of you for opening your hearts to Katia and her battle to BEAT leukemia and face the side effects of treatments.

Abilities:

See: Yes, but her eyes are very sensitive and irritated 99 percent of the time.
Hear: Yes.
Talk: Yes, Oh, my gosh yes!!!
Walk: Yes, but GVHD effects her hips which effects her ability to run at all but she can walk and not fall down now.
Read: Not yet.
Use hands: Yes, but GVHD which effects her hands and nails causing pain.

Siblings:
sister Sharayah, age 19
sister Tatiana, age 15

Child's Interests:
Katia's interest change all the time but she is mainly into playing (of course). She loves LADYBUGS, Backyardigans, Barney, The Wiggles, Disney Princesses (especially Ariel), Easy-to-Read books, and enjoys very much using my computer. She wants her own and her favorite sites are PlayHouse Disney, Noggin, PBS, Cosmeo.com, CBH Ministries-Children's Stories, and AOL for Kids. She is quite good on the computer actually. She is not one to play by herself. She loves to help Mommy in the kitchen, play with her big sisters, or play on the computer or Playstation. She also enjoys her Leapster (a great learning tool) and VSmile (another great learning tool!!). Katia loves to learn and is eager to please and get good grades. She loves her HomeBound School Teacher!!

Sibling's Interests:
Sharayah loves books, mainly Biographies, travel (France especially), and books on growth, daily devotionals and journaling. Audio books (MP3) are also great!

Tatiana enjoys reading but prefers Audio books and music. She enjoys Harry Potter, Sisterhood of the Traveling Pants series which she doesn't own. She also enjoys greatly playing with Katia. Tatiana has her own medical issues which cause her ongoing back pain and overall issues so she is more of an indoor person. She enjoys Board Games, Playstation 2 and GameBoy Games. She adores animal posters and is "Katia's Best Friend!"

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