When It All Started
Shortly after Katy's fourth birthday, her dad and I noticed that she was bruising easily, and new bruises were showing up every day. We took her to the doctor, and she was diagnosed with a bone marrow failure disease called Aplastic Anemia. In case you didn't know, Bone Marrow is the spongy tissue inside your bones that is home to stem cells.....the little factories that produce blood cells. For some unknown reason, Katy's bone marrow had shut down. The only known cure for this disease is a bone marrow transplant. Katy's brother and sister, my husband and I were brought in to test for compatibility, only to discover that none of us matched Katy well enough to provide her with life-saving marrow donation. The second line treatment for AA patients is called ATG therapy. The basic theory is that somehow, the patient's own immune system has gone haywire and attacked their stem cells, and with ATG, the patients immune system is suppressed enough to allow that marrow to recover. Katelyn under went this treatment in August, and was discharged on an oral immunosuppressive medication called Cyclosporin. Because her immune system was compromised, Katy had to be in the hospital on IV antibiotics anytime she had a fever. Between July 1st and October 30th of 1997, Katy was in the hospital about 72 days. Then, in October, Katy's tonsils began to swell. At first, it was thought she might just have some tonsillitis, but when it didn't resolve, a tonsillectomy and biopsy revealed a reactive cancer called Lymphoproliferative Disease. In short, her immune system was suppressed so much, that cancer cells that her immune system would have naturally taken care of were allowed to root and proliferate in her lymph nodes. All Immunosuppression Therapy was stopped, and luckily, the cancer went into remission on it's own. However, we are still limited in what can be done to treat her Aplastic Anemia. To keep our family going...we rely a lot on our family, friends, and the wonderful folks at our church and in the small farming community that we live in. As any parent of a chronically ill child will tell you, it has stressed our family in every way imaginable......financially, physically, emotionally and spiritually. But, we have come to realize that we are not in control of this.....only God knows what her course and outcome will be, and we have to have the faith to accept this and forge ahead. Even little Katy seems determined not to let "sick bones" rule her life. She is one tough little cookie.
Status: May 6, 2009
"...and pray for each other so that you may be healed.
The prayer of a righteous person is powerful and effective." James 5:16. Katy had two appointments and I wanted to have all the results before I replied. Anyway, she's doing very well. We were able to stop the Growth Hormone injections altogether, which is a great thing! She has stopped growing at 4' 10" but seems to be fine with it. She finishing up her Freshman year of high school and very much looking forward to summer, she LOVES to sleep. Tomorrow, (May 7th) marks the TEN YEAR Anniversary of her successful bone marrow transplant. We can hardly believe it! Some days, it seems like just yesterday, and others it seems decades ago. Still, we're so grateful for the gift we have been given by her amazing donor Ernie. We are still in touch with him and I always send a gift on their anniversary, so I dropped a bottle of my favorite wine in the mail to him on Monday. Katy is hoping to get to see him this summer. Katy had an awesome time at her first high school dance and I posted photos on her website at www.katyhubbell.com if you'd like to take a peek. Much Love, All our best! The Hubbells If you wouldn't mind, maybe you could send her a special e-card or email message to her address at KatysMiracle@aol.com . Thanks in advance! Mary
Mom to 8 year old Katy Rose, Dx SAA 7/97
ATG/Cyclo 8/97, Secondary EBV Lymphoma 10/97
HD Cytoxan Protocol 6/98, Non-responder
MUD BMT 5/7/99: Awesome Graft, but Dx Evan's Syndrome 6/00
Mom to Sarah (10 3/4) and Seth (9) and Wife to David
Katelyn Rose Beats Aplastic Anemia
www.katyhubbell.com [Katy's Website]
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