Back in December, Nora’s prognosis was looking bleak she wasn’t responding to her treatment and she didn’t have a donor match.
We knew if we didn’t find Nora a match, her days would be numbered as she has started getting frequent nose bleeds. So we made a plea to friends and family across the country to have bone marrow donor drives until we found Nora her match. Everyone came together and we had bone marrow drives and fundraisers in Maine, Connectiut, Massachussetts, Rhode Island, Washington DC, New York City, Long Island, New Jersey, Oregon, California, Florida and online so anyone, anywhere, could have a swab test sent to them. We also had the press on Nora’s story. She was in Newsday, News12 LI, CT and NJ, New Haven Register, the Irish Voice, all over Facebook and on Howard Stern Sirius Radio. With our dedicated volunteers we were able to swab over 3000 people in the months of January and February.
On February 10th (Nora’s brother Arik’s birthday) we found out that NORA HAS FOUND A PERFECT MATCH!!! Actually Nora has 32 perfect matches! 10 of them are women and under 40 years old (which increases Nora’s chances for successful transplant). Arik said in true awesome big brother fashion, “My birthday wish has come true!” We were ecstatic!
We had crossed one MAJOR hurdle but it wasn’t yet time to celebrate. We want Nora to go to Memorial Sloan Kettering and have her transplant with Dr. Farid Boulad. He specialized in non-cancer-blood-disorder-bone marrow-transplants and has come up with a protocol that reduces the amount of chemotherapy Nora will need for transplant, and does not use radiation. Which means her fertility will remain intact and her chromosomes will not break or mutate her disease into leukemia.
Unfortunately Memorial Sloan Kettering is not “in-network.”
Our insurance told us to go to one of the other hospitals ‘in-network’. We had problems with this. One hospital did not do non-sibling bone marrow transplants so they were out, Nora hated another and the third the transplant-er never did a child with Aplastic Anemia before. All three were unacceptable for us to send Nora to undergo the most painful and grueling experience he would probably have in her life.
We applied for ‘out-of-network’ approval but Nora was denied. Unbelievably frustrated and stressed, we called Kate Browning’s office to help expedite the appeal at 4pm on Thursday, February 16th. That day her office called the Governor’s office and by 9am Friday, February 17th an advocate at the Health Department was helping us put together an appeal. By 4pm on Friday, February 17th (24 hours after our initial call) we had approval in writing that NORA IS GOING TO SLOAN KETTERING and the insurance is paying for her entire treatment! At 4:30pm I had a call from the Governors office letting me know that Kate made a compelling case for Nora and let him know that our entire community is banding together to pray for her healing. He told us he is so impressed with our community and our little Nora. THANK YOU LEG. BROWNING’S AND GOV. CUOMO’S OFFICES!!!!
Now, Nora will begin preparing for her transplant at Sloan Kettering. The donors will be contacted this week and the screening process will begin. They need physicals and hi-resolution blood typing. Once one is picked, they will have to take shots for a week to stimulate marrow growth. This will happen as Nora gets chemotherapy. The donor will go to the hospital and his/her marrow will be harvested from his/her hip bone. The marrow will be flown directly to Sloan where it will be translated through her central-line in Nora’s chest (same as when she gets a transfusion).
Nora will be at Sloan in complete isolation for a month. She will not be allowed visitors except for immediate family and we will have to be outfitted in masks, booties, hairnets and gowns to keep her from getting germs. We ask that you hope and pray during that month that the transplant is successful. When she successfully en-grafts, she will begin to make blood again.
She will be in partial isolation for 100 days. During that time we will be staying at the Ronald McDonald House and/or shuttling between NYC and Mastic Beach 3-4 days a week. When her blood count numbers come up, and her neutrofils are stable, she will be able to come out of isolation and go out in public. With God’s help and Nora’s strength, she will be back to school in January of 2013.
Please continue to pray for her healing. So far our persistence has been paying off!