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Katelyn Rose Hubbell turned four years old on June 26th 1997, and had a big party at her home in Fisher, Illinois. She was a happy, healthy little girl, until July 11, 1997 when she was diagnosed with a life threatening bone marrow failure disease called Severe Aplastic Anemia. In case you didn't know, bone marrow is the soft spongy material inside your bones that is home to stem cells. Stem Cells are the little factories that produce the three types of blood cells, that along with a liquid called plasma, makes up your blood. In people with Aplastic Anemia, the workers in the "factory" go on strike. They do not produce enough blood cells to keep the patient alive.
There are three main types of blood cells. White blood cells fight infection by "eating" bacteria and viruses that enter the body. Red blood cells are responsible for carrying oxygen to organs and tissues throughout the body. Platelets are yellow, sticky cells that help the blood to clot. People with Aplastic Anemia are always at risk for serious infections because they don't have enough white cells to fight them. They are also prone to fatigue from a low red cell count, and life-threatening episodes of bleeding because their stem cells don't make enough platelets. Many Aplastic Anemia patients are dependent upon transfusions of donor blood and platelets to keep them alive. Katelyn was kept alive by generous blood and platelet donors from all over Central Illinois. We are very grateful to these kind and giving people. Her case is being managed by doctors at Carle Foundation Hospital in Urbana, Illinois and at The Children's Memorial Hospital in Chicago. Her bone marrow transplant was performed at Texas Children's Hospital in Houston, Texas.
The first line treatment for children with AA is a bone marrow transplant from a sibling donor, so just a few days after her diagnosis, our other two children gave blood samples to determine if either of them was a suitable donor for Katy. After 10 heart-wrenching days of waiting, we were crushed to receive the news that Katy's brother Seth and sister Sarah matched each other perfectly, but didn't match Katy. Katy was given the second line treatment for Aplastic Anemia, called ATG therapy. It is an immunosuppressive regimen that has been successful at inducing remission in about 85% of cases. Then, we hit our second brick wall. In October, Katy developed a very rare side effect of her ATG therapy, a reactive cancer called Lymphoproliferative Disease. The lymphoma was found in her tonsils and adenoids, and she had the tumors surgically resected right away. Although doctors were successful in removing the cancer in her tonsils, because she was prone to bleeding, they had to leave the adenoids alone. We were devastated, and her therapy needed to be stopped right away to formulate a treatment plan and give her immune system enough time to eradicate the cancer. Luckily, the cancer went in to remission, but our options for treating her Aplastic Anemia then became very limited.
On June 17th of 1998, Katy underwent a second round of immunosuppressive therapy, only this time with a much stronger drug, Cytoxan. Cytoxan (a.k.a. Cyclophosphamide) is a chemotherapy drug often used to treat cancer patients. It is a powerful immunosuppressant, "wiping the slate clean" so to speak, as it kills off peripheral blood cells in an attempt to stop Katy's t-cells from attacking her stem cells. Nearly 10 months post her Cytoxan therapy, it became clear that Katy was not responding. Her blood counts were still slipping daily, she was still dependent upon twice-monthly platelet transfusions, and required daily Epogen and Neupogen injections to stimulate her red and white blood cells. As a result, Katy's doctors planned a Bone Marrow Transplant for Katy on May 7th, 1999, at Texas Children's Hospital in Houston.
We are happy to report that Katy's bone marrow transplant was a success, and her new marrow is working beautifully! We thank God, and her hero bone marrow donor, Ernie, every day for this miracle of new life. Katy still suffers some side effects from the toxicity of the chemo/radiation therapy that she received before her transplant. She suffered some permanent neurological damage, which may take years to fully reveal itself. She is growth hormone deficient, and requires nightly HGH injections in order to grow and feel good. Radiation to her eyes has caused cataracts to form which will eventually require surgery. Despite these new challenges, Katy continues to amaze us, and every day with our smiling little girl is a gift.
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Read My Treatment Journal Diagnosis through 1/19/99
Read My BMT Journal!1/99 through 08/19/99
Read My Post BMT Journal--Last Update: Feb. 2005
Meet my Donor and Lifesaving "Angel" Ernie!
Click HERE to see the special gift that I sent to my donor Ernie. I love him!
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