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AA Aplastic anemia

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  #1  
Old Sun Sep 19, 2010, 10:14 PM
Cindy O Cindy O is offline
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Location: MA
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SAA Relapse

My 5yr old daughter was first diagnosed with SAA just after turning 3. She was treated via ATG/Cyclosporine and had a partial recovery. She went without transfusions for 2 yrs. She weened off of Cyclosporine in June 2010 and had a BoneMarrow Biopsy done in August. It appears that her BM is at 30% capacity. Her numbers are beginning to drop - ANC around 1000, RBC 10.5 (from a steady 12.0) and platelets around 140 (from 200ish). Her doctors are beginning to discuss proceeding with an unrelated BMT if her numbers continue to drop. We are looking into a second opionion and wanted to know if anyone has any suggestions on which hospital is the best choice. Thank you.
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Cindy, mother of Samantha age 5, dx SAA June 2008, treated with ATG/Cyclosporine, weened off by June 2010, partial response.
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Old Sun Sep 19, 2010, 11:43 PM
Jen B Jen B is offline
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Hi Cindy,
My son Ethan was diagnosed December of 08 when he was 3. He is 5 now too and had his transplant at City of Hope in Duarte, CA just this last November.

We talked with a few doctors, but the most easily accessible and pleasant was Dr. David Margolis of Children's Wisconsin. Link attached:
http://www.chw.org/display/PPF/DocID...v/1/router.asp

Also - I remember picking the brain of a David Loeb at Johns Hopkins where they have a different High Cytoxan regimen that they follow before they decide to go to transplant.

We already knew the standard protocol for transplant from the doctors we had talked to in our area (Los Angeles). These two doctors had a different take on what that protocol should be.

Please feel free to contact me (jen.barrios@sbcglobal.net). I know I looked high and low for kids who were going through this at such a young age. There aren't a ton, but we are out here.
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Mother of Ethan, diagnosed with SAA at age 3-1/2 Dec. 2008; Treated with ATG(h) Dec 2008 and ongoing Cyclosporine. MUD BMT 11/10/2009, 10/10 match
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  #3  
Old Mon Sep 20, 2010, 01:06 AM
Neil Cuadra Neil Cuadra is offline
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Cindy,

Are you hoping to stay close to home?

If you are near Boston, the Dana-Farber Cancer Institute has a good reputation for pediatric transplants and is known for expertise with bone marrow failure diseases.

Also well-regarded for expertise (although I don't know about their pediatric programs): the Brigham and Women's Hospital, and the Tufts University School of Medicine, in Boston, and the University of Massachusetts Memorial Medical Center, in Worcester.
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Old Tue Sep 21, 2010, 09:58 PM
Cindy O Cindy O is offline
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Join Date: Sep 2010
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Thank you for your response to locations for BMTs

We are looking at Dana Farber, but would like a second opinion elsewhere. We were considering St. Jude's in Memphis
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Cindy, mother of Samantha age 5, dx SAA June 2008, treated with ATG/Cyclosporine, weened off by June 2010, partial response.
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Old Tue Sep 21, 2010, 11:07 PM
evansmom evansmom is offline
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Location: Ontario, Canada
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Hi Cindy,

Please consider Dr. David Margolis at Children's Hospital of Wisconsin as Jen said. He's wonderful and VERY experienced with pediatric AA and unrelated transplants.

Best wishes,
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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