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To Katelyn Rose Hubbell's
Aplastic Anemia Website!

Recent Update!

Updated 4/23/2008 - new pics coming soon!

Spring has sprung here in Central Illinois!

It's been a while since I posted a Katy update, and I'd gotten a few e-mails from folks who check in every once in a while so I thought it best to "go public" and let everyone know how Katy's coming along.

May 7th will mark the 9th anniversary of Katy's successful bone marrow transplant. Three weeks later, Katy will graduate from 8th grade and then on June 26th, she'll turn an amazing 15 years old. David and I just shake our heads in disbelief most days because it seems like just yesterday that our sweet girl was so sick, but to look at her today, you'd never suspect anything.

This is not to say that she's perfect, she still has many late effects, mostly caused by the radiation used as conditioning prior to her transplant. Katy's growth has all but stopped - despite nightly injections of growth hormones it appears she has reached her full adult height at 4' 10". She still struggles with school and has trouble focusing, and more recently has developed chronic fatigue. She seems to need so much more sleep than other kids her age and most days can't make it through without a nap. All this aside, she's such a happy & loving child it's really hard not to smile when you're around her.

Katy's really looking forward to summer because she knows that she can be free to sleep in as late as she needs to, and also because her favorite week of the year happens during the summer - Camp Coco. She told me last week as we were filling out her camp paperwork that Camp Coco is really the only place she feels like she fits in and the people around her can truly understand her. So many of those kids have been through similar experiences of life threatening illness, losing friends to cancer, etc. and she just looks forward to that week all year!

Recently, Katy was interviewed by our local news channel for a story they produce called "Angels Among Us". This particular edition profiled Katy's daddy for being an apheresis donor. They followed him to his last appointment at the blood bank and filmed him donating platelets. They then came out to the house to ask both Katy and David some questions. It should be interesting - I can't wait to see how it turns out. If they post it to their website, I'll place the link up for everyone to see.

CLICK HERE to see the news story about Katy's Dad David!

Well - that's it! Thanks so much to all of you for stopping by and checking in on our precious Katybug. She continues to bring us joy and keep our daily lives in perspective. She's truly a gift.

I noticed recently that Katy's site is receiving about 800 hits per month. If you landed here after doing a search for information about Aplastic Anemia, please don't hesitate to email me at MSHUBB2@aol.com if I can help you in any way by sharing our experiences with you.

Thanks for visiting Katy's site and I'll try to update again soon!

Katy's Story

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.

My BMT Doctor

This is me with Dr. Helen Heslop. (Click her name to read more about her.) Dr. Heslop is so smart that she developed a special way to treat my disease that saved my life. She was born in New Zealand, but now she lives in Houston, Texas.....lucky for me!

Relapse Scare

One year after her BMT, Katy Rose experienced some unexpected complications. On May 20th, 2000 she had a terrible nosebleed, and an emergency CBC showed that her platelets had plummeted to only 14,000. We rushed back to Houston, and a bone marrow biopsy confirmed that her graft was solid, but somehow her platelets and red blood cells were being destroyed once they entered her peripheral bloodstream. She was treated with high dose steroids, and over a period of 6 weeks, her counts normalized, and she was back on track to recovery from her transplant.

E-mail me!

If you have any questions about me or my treatment...you can e-mail my mommy at MSHUBB2@aol.com, or feel free to AOL IM her at screenname MSHUBB2. Thanks for visiting my special homepage!!

OR..you can e-mail ME and Mom will read them to me! KatysMiracle@aol.com

Katy's Links

How you can help:
Click here to learn about how YOU can make a difference!

Read My Treatment Journal Diagnosis thru 1/19/99

Read My BMT Journal!1/99 thru 08/19/99

Read My Post BMT Journal--New update added Feb. 2005

Click here to check out these awesome pictures of my new Bone Marrow!

Meet my Donor and Lifesaving "Angel" Ernie!

See pictures of our first meeting on 6/9/01.

Pictures from my Hearts of Gold Cruise (with donor Ernie on 10/12/01)

Click HERE to see the special gift that I sent to my donor Ernie. I love him!

Click here to see photos from my trip to Texas for my 3 year check-up.(June 2002)

My Guestbook Please! My Guestbook Powered by E-Guestbooks Server.

Plus 43,800 people have visited my site!

This is my special Guardian Angel Bear. I named her Alyssa after my best friend at school. You can adopt your very own Angel Bear by just clicking on Alyssa!

If you'd like to learn more about my illness, click on the logo above.