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  #1  
Old Mon Sep 20, 2010, 03:46 PM
Candy S Candy S is offline
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Join Date: May 2009
Location: Newbury Park, California, USA
Posts: 8
17 year old Daughter with SAA - STILL FIGHTING

In the fall of 2008, Mia started having some "staring" seizures. She started taking some anti-elliptic drugs (AED's) more commonly knows as seizure medicines. Lots of seizure medicines have side effects of blood count reductions.

Mia's energy level started to decline in December. After Christmas one morning, she could not get up on her own and was completely white. She needed to be hospitalized immediately. In January, a Hematologist started monitoring her blood counts weekly and did a bone marrow biopsy and aspiration. He then transferred her to UCLA Hospital.

On January 27, 2009, the doctor at UCLA did another bone marrow biopsy and aspiration - and she was officially diagnosed with Severe Aplastic Anemia (SAA). Aplastic Anemia means that your bone marrow does not produce enough red blood cells, white blood cells or platelets. As a result, Mia gets weekly red blood cell and platelet transfusions. We are so grateful for blood and platelet donors!

Mia went through her frist round of Immunosuppressive Therapy (IST) on March 9, 2009. She had ATG (Rabbit) and started on cyclosporine. The ATG knocked her counts out but they never rebounded. At the end of the 1st round (6 months) she still did not have a response.

We started talking about a Bone Marrow Transplant (BMT) and found a doctor in Wisconsin, Dr. David Margolis, who specializes in pediatric aplastic anemia BMT's. We have spoken with him on the phone, via email, and met with him personally (toured his hospital, met his staff and Mia had ANOTHER bone marrow aspiration and biopsy) July 29-31, 2009. We found out that their were five potential 10/10 donor matches. The first donor turned out to be a 9/10 match; the next three were "unavailable" on the registry. We were notified on October 6, 2009, that the fifth potential 10/10 donor match asked to be taken off the registry. That was devastating news to Mia and our family. We are currently having bone marrow drives and raising awareness about the "Be The Match" (bethematch.org) National Marrow Donor Registry, in hopes that we will find another match and Mia can have an "unrelated" Bone Marrow Transplant. (Her sister Carly was not a match).

When we locate a match for Mia, we plan on moving (temporarily) to Milwaukee, Wisconsin (and would be there for, at the very least, 4 months).

In the meantime, Mia started her second round of Immunosuppressive Therapy (IST) (this time Horse ATG) on October 19, 2009, at the National Institute of Health (NIH) in Bethesda, Maryland - under the care of Dr. Neil Young. As of March 2010, Mia has shown a partial response to this round of IST. Our prayers are that we can put her Aplastic Anemia into remission (indefinitely or until a donor can be found).

Mia's blog can be found at CaringBridge.org/visit/mias
Mom's Email: candidas@verizon.net

The Stoutenborough Family
Doug, Candy, Carly and Mia (our Warrior)
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Candy, mother of Mia age 17, diagnosed SAA January 2009; treated with ATG (Rabbit) in 3/2009; treated with ATG (Horse) in 10/2009; Finished a fast taper of cyclosporine (recommended by NIH on 9/7/2010). So far, partial response.
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Old Sat Sep 25, 2010, 03:18 AM
Ruth Cuadra Ruth Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 611
Hi, Candy.

Thank you for sharing the details of Mia's story. For those of you who need inspiration to keep fighting the beast of aplastic anemia, I encourage you to read the Stoutenboroughs story. They have been through a lot to help Mia get back to school for her senior year in high school. We wish her every success.

You can support Mia and thousands like her by volunteering for the Be the Match Registry (formerly the National Marrow Donor Program). Someone joined and saved my life. You might be the one (or know someone) who will help Mia conquer her aplastic anemia.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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