Nora 14

Happy New Year!

As you all know, we have been looking for a better match for Nora’s bone marrow transplant. I have been speaking to doctors all over the country and the three hospitals we have narrowed it down to are:
1. Memorial Sloan Kettering Cancer Center
2. Morgan Stanley children’s hospital of New York (Part of NY Presbyterian Columbia /Cornell)
3. Steven & Alexandra Cohen Children’s Medical Center part of (North Shore Long Island Jewish)

We really want to make sure we find a bone marrow transplant center that understands that Nora has Aplastic Anemia NOT leukemia. Seems to be an issue. Many of the doctors we talk to don’t really know the protocol for Aplastic Anemia and behave like just because she is a kid, and just because she needs a bone marrow transplant what they do for pediatric leukemia bone marrow transplants are ‘good enough’ for Nora’s bone marrow transplant. And when I ask how they would feel about following the European Aplastic Anemia pediatric bone marrow transplant protocol (they have significant studies showing that radiation isn’t necessary for children under 14—without radiation she won’t have fertility issues when she grows up.) and I hear, “I am not familiar with that”

Lets just say they have not been inspiring confidence.

Good news is that her chromosomes have not mutated. They are perfect! Thank God! We also have a LOT of partial matches. When we pick the center for the transplant (In the next few weeks) they will run another search and hopefully in the bunch of people who have swabbed for Nora this month there will be a perfect match! Other good news is, she is not neutrapenic so we don’t have to rush.

So if you know of anyone who hasn’t swabbed, PLEASE get them to rub that little q-tip on the inside of their cheek! AND KEEP PRAYING!!!!

FUNDRAISERS AND SWABBING:
VIRTUAL DRIVE:
We’re up to 40 APPROVED marrow donors in the virtual drive (this does not include people who tried to get kits and didn’t qualify.) THANK YOU ALL WHO ENTERED THE REGISTRY! If you haven’t swabbed and can’t make a drive do it online! Please go to the “Be the Match Foundation” web site to register at http://marrow.org/Join/Join_Now/Join_Now.aspx. Once you have registered, enter the PROMO CODE: NG2012 (Only good until Feb. 1st)

BROOKLYN:
Where: Harry O’s 120 Lawrence Street Brooklyn, NY
When Friday January 6th
Time: 5:30pm until 11:00pm
$20.00 donation – Food, Raffle, 50/50, & Cash Bar.
There will be a Technician on-hand to perform a simple and painless swab for bone marrow match that Nora needs desperately!!!! For more information on bone marrow donation please visit:www.marrow.org. Any donation is greatly appreciated!!!

SHIRLEY, LONG ISLAND:
Applebees pancake breakfast and SWABBING on January 28th at the Shirley Applebees on Montauk Highway and William Floyd Parkway from 8am – 10am. We will be having recording artist “Jonni” singing and Rodney Pete Watson, a retired NFL player for the Cincinnati Bengals is hosting the event! Thank you again for all your help spreading the word. Tickets can be purchased at www.wantickets.com.

NEW JERSEY:
Blood and marrow drive at the Boonton Fire Department on
1/28.

MAINE
February 4th
Blood and bone marrow drive in Maine
At Maranacook Community High School in the Music Room, 2250 Millard Harrison Drive, Readfield, Maine. 04355

We have a bunch of drives coming up… Di is doing one at her home! Lauren has the one in Jersey. Cheryl is running the Applebees breakfast. Cousin Maureen got the whole Brooklyn thing done. In D.C. Tanya is all over it. In Oregon my BFF Stacy and cousin Lani are working on it. In LA it’s cousin Tashi. In Boston my cousin Maggs. In Maine, thanks to Shawn’s sisters Kim and Dulcey and friends Angela, Jen and Mike are coordinating. AND in Florida my brother Jim and his wife Belle are getting the word out! THANK YOU SO MUCH!!!!!!

Please tell a friend to get swabbed.

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