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Welcome

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To Katelyn Rose Hubbell's
Aplastic Anemia Website!

Katy Rose

Katy Rose in January 2002...looking pretty good!

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(New pic added 01/10/02)!!

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Katy's Story

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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 stem cells are damaged and unable to produce enough blood cells to keep the patient alive.

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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.

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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. We were devastated, and her therapy needed to be stopped right away to 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.

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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. Her kidneys have been damaged, which in turn causes fatigue and high blood pressure which was controlled with medication. She suffered some permanent neurological damage, which may take years to fully reveal itself. Despite these new challenges, Katy continues to amaze us, and every day with our smiling little girl is a gift.

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My BMT Doctor

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Katy with Dr. Heslop

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!

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Relapse Scare

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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.

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Recent Update!

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Updated 11/26/2001

Katy continues to blossom and grow since her transplant. Just this evening, she wrapped herself up in her blanket and told me that she was a "butterfly comin' out of it's cocoon." I'd say that's pretty accurate. Katy is very active, outgoing and compassionate. She is having a few difficulties concentrating in school, but we are addressing those problems with her neurologist and hopefully, she'll be back on the right track soon. It's been a WHOLE YEAR since Katy was hospitalized for anything, and healthwise, we have a lot to be thankful for this holiday season. Best wishes to all of you!

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My BMT Buddy

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Kay-ci!Kay-ci & Katy!

This is my "BMT Buddy" Kay-ci. Kay-ci was my "bestest friend" on the BMT ward. Oh...and that's her grandma behind her. Everyone calls Kay-ci's grandma "Grandma". Even MY mom! The second picture is me & Kay-ci sharing a big bear hug. Kayci earned her Angel Wings on August 30th 1999. She was a very special friend to me, but now she lives with Jesus and looks down on me from heaven. She is my very special Guardian Angel. Click here to see a special Memorial Page for Kay-ci.

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E-mail me!

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E-mail Icon

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! KATYHUBBELL@aol.com

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Katy's Links

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StockingClick the stocking to see my Xmas 2001 Picture!

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

Current StatusKaty's Current StatusUPDATEDOn 11/30/2001

TexasSee Pictures from my trip to Texas for my 2 year check-up.(June 2001)

Meet Katy's DonorMeet my Donor and Lifesaving "Angel" Ernie!

First meetingSee pictures of our first meeting on 6/9/01.NEW!

Our AngelsMeet my "Angels on Earth"

Graphics IconSee other sites that Feature Katy

School IconSee my NEW! School Picture!

(Added 11/14/01!)

Journal IconRead My Treatment Journal Diagnosis thru 1/19/99

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

 Post BMT Journal IconRead My Post BMT Journal--New update added 12/29/2001

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

TCH LogoGo here to meet all of my AWESOME BMT Docs and Nurses at TCH!

Doc & NursesMeet Katy's Amazing "Illinois" Medical Team

Sarah IconMeet my big sister Sarah

Seth IconMeet my big brother Seth

Daddy IconMeet my Daddy

Mommy IconMeet my Mommy

Graphics IconFind out where I got my graphics

Check Out my WebringsWebrings Icon

Graphics IconSee my Awards page

GuestbookMy Guestbook Please!

GuestbookMy Guestbook

Plus 43,800 people have visited my site!

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Angel Bear

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!

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AA-MDS-TALK Logo

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

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