Sunday, August 11, 2013

Transplant Take Two

On Wednesday, Ezra will be re-admitted to Memorial Sloan-Kettering for a second attempt at transplant. The good news is that several months ago, a partially matched donor for Ezra showed up in the registry. The bad news is that the donor is only an 8/10 match. When looking for a donor, the doctors look at 10 antigens. A perfect match is a 10/10. Any mismatch away from that perfect 10 brings significant risks for the patient. However, this is the first time that any donor that the doctors would even consider using for a transplant for Ezra has appeared in the registry and that is a big deal.

Due to the degree and type of mismatch, the doctors will use a method called T-cell depletion. The cells will be collected from the donor, and then the lab will process them through a machine that removes the T cells. The T cells are the cells that cause Graft Versus Host Disease ("GVHD"). If Ezra was to receive the cells from the donor without the T cells being removed, he would almost certainly develop GVHD and it would be severe. T cell depletion significantly decreases the risk of GVHD, but it comes with a cost. The T cells that usually come in with a graft provide protection from infection during the period when the patient's new immune system is growing back. Ezra won't have that protection. It will take 4-6 months for new T cells to appear and during that time period Ezra will be at an even greater risk for infection than he would be typically post-transplant. Sloan-Kettering has more experience with T-cell depletion than any other center in the U.S., so Sloan is the best place for this type of transplant.

Whether to proceed with a second, risky transplant has been a devastating decision and one that we have made with heavy hearts. Ezra is automatically at higher risk because this will be his second transplant and his second exposure to high dose chemotherapy. In the middle of our decision making, Ezra's primary doctor at Sloan since he was an infant suddenly passed away, which threw us for a loop. The chair of the department has taken over Ezra's care and we have gained comfort with him. In the end, transplant is the only path that may lead to a long, healthy life without - as one doctor told us - a sword hanging over his head.

If the transplant works, the sword will disappear and Ezra can lead a normal life. He can no longer live this life of seclusion. It is time for Ezra to be able to go to school, play dates, birthday parties - all the normal experiences a child shouldn't think twice about. Enough is enough of this limited life and it is time to make Hyper IgM a thing of the past.

Thanks to the hard work of special friends of ours, Ezra had some very special opportunities over the past months to break out of his limited world. In addition to the NY Hall of Science, Ezra had the chance to visit Liberty Science Center, the Cradle of Aviation and the Museum of Natural History - all after hours (think Night at the Museum). Two weeks ago, Ezra had the incredible opportunity to have a private tour of the Intrepid and the space shuttle Enterprise. To say he was thrilled is an understatement. We are so grateful to all of these institutions for making Ezra's dreams come true and for providing our family with special memories that will carry us through the hard times.

We are so, so grateful that after all these years of searching, a donor has appeared. All we know is that the donor is a female and she is around 20 years old. And that she has been very cooperative with all that has been asked of her so far. We love her already.

We are mustering up all our strength in order to march our son back into the gray prison of the hospital. It was with  indescribable sadness that we broke the news to Ezra. The hardest part, as we suspected, was the news that he will need a central line again. The line caused him a lot of pain last time and dressing changes were traumatic. The surgery for the line will be the first thing to happen on Wednesday. Chemo starts the next day.

Through the months of isolation last year what kept us going were the messages of support, the hundreds of people who donated blood and platelets for Ezra, the meals and treats that were sent with love, the generous friends who paid for our room at the Ronald McDonald house, the gifts sent to occupy Ezra, and the prayers and kind thoughts from people all over the world. They were all reminders that we aren't so alone in this journey. One thing we know this time is that we will not be marching into the hospital alone.

We will update this blog and Ezra's Facebook page ( Please feel free to share Ezra's story. He needs as many prayers as he can get. His Hebrew name is Ezra Aviel ben Hertzelia Shandel. Please keep him in your prayers and thoughts.

With love,
Robin, Evan and Ezra