Tuesday, October 30, 2012

Safe and Sound

Thank you to everyone for all the messages checking in. We are all fine. We miraculously have power, which is fantastic for many reasons, but most importantly because Ezra takes several medications that require refrigeration. We have some down trees and our street is blocked in both directions (the town told us our street is a "proverbial war zone.") Ezra is on a medical priority list for the town. They checked in on us and said they will work on access to the street for ambulances in case of an emergency.

The biggest issue we've had so far is that our little nature lover started sobbing when he saw the broken trees. Not sure how we're going to get the trees cleared without breaking his heart.

We hope everyone is safe!

Saturday, October 13, 2012

Day +151: One Point Higher

The latest chimerism results are in and the percentage of donor cells has increased from 5% to 6%. We are disappointed that the increase was not greater. His doctors are also disappointed and were hoping for a number closer to 10%. We were just hoping for something that would make us feel that Ezra is in a safer place. But we are grateful that there was any increase, no matter how small, because a decrease would put us in a very bad situation. And two months ago, we thought the transplant was definitely failing, so a small increase puts us in a better place than the alternative. So, what do we do now? Wait until the next round of tests and hope that the donor cells continue to grow. We are continuing with the slow immunosuppressant taper. His counts continue to be low, but stable. And his activity is still limited to home, the hospital and the outdoors. There is nothing for us to do except to hope that the graft sticks around and continues to grow, and to keep Ezra infection-free in the meantime.

Ezra continues to make the most out of his limited world and is a constant trooper. When we go to Sloan for his clinic visits, we park in the garage and walk through the tunnels to get to clinic. We pass by a hallway where there is always the smell of woodworking and Ezra asks us each time what they are building. The other day we were with Ezra's pal Jessica from Childlife and we bumped into a Sloan carpenter. She knew about Ezra's woodworking curiosity and we stopped the carpenter to ask about his work. He invited Ezra to come see their woodworking shop. Ezra had a great time checking out the carpentry equipment and talking shop with the carpenters who started calling him their "new employee." And here he is with the plants by the garage that he loves because he thinks they are banana trees. Ezra has a knack for finding fun everywhere - even the bowels of Sloan-Kettering.