Nora is now at day 65 post transplant. She is coming along. She hasn’t needed whole blood or platelets. She is still getting IVIG which are antibodies from donors. Her neutrophils are a little above normal but thankfully her lymphocytes are low. Her hemoglobin is in the normal range and that makes us very happy.
She is weaning off of the steroids which is really helping her mood. Her cyclosporine level continues to fluctuate so she still has to go in and out of the hospital two to three days a week to check its toxicity. Besides her occasional high BUN the rest of her numbers look good.
Nora has been walking a little each day which is making her stronger and stronger. She is not 100% but she is getting there slowly but surely. She begins occupational and physical therapy in the next week which should really help. She is also seeing the psychiatrist to help her deal with her anger and sadness. As she weans off the steroids, she should see an improvement but I want to make sure the stress of the bone marrow failure, as well as the loss of a few good friends isn’t overwhelming her emotionally. She is the toughest kid I know, but she certainly has every reason to be pissed, I’d just like her to do it in constructive ways.
We did sneak out of the Ronald McDonald house for Thanksgiving and Nora saw her dog Nugget for the first time since July 4th. They were both so completely happy to see each other. They just laid down together and snuggled for hours. He also slept in her room and wouldn’t leave her side for the two and a half days we were home.
We are still at the Ronald McDonald house and will be here well into January. We thank you all, especially the team at Memorial Sloan Kettering, the Ronald McDonald house, Brookville Country Club, the Frances Pope Foundation, the Mastic Beach Property Owners Association, many chapters of the Knights of Columbus our churches the Shrine of St. Jude Roman Catholic Church and United Methodist of Readfield, and especially, our friends, and our families for their financial, emotional and spiritual support through this whole stressful chapter in our lives. We certainly wouldn’t be able to survive without you and thank you all from the bottom of our hearts.
Many of you have asked if you can get Nora a gift for Christmas this year. We certainly appreciate your kind a loving sentiment. We ask that you instead make a donation to any of the above mentioned charities or your local church. The work they do on a local level is extraordinary and until you see it for yourself, is incomprehensible.
We wish you all a Merry Christmas and a Happy New Year. May 2014 be the year Nora is healed.
With all our love,
Shawn, Maureen Arik, Nora and Nugget