Friday, November 27, 2015


Thanksgiving 2015 and we are blessed to have so many reasons to be thankful. The past 8 months since we found out that Ezra's new immune system is functioning have been full of miraculous moments of normalcy. Ezra is not just surviving, but thriving. In what now feels like the blink of an eye, he is a happy first grader surrounded by adorable friends and classmates. We are often left shaking our heads in wonder, thinking "how did this happen? 

Since our last blog post, Ezra has entered first grade and has adjusted better than any of us ever expected. He marches into school every morning - first with a stop for lots of kisses - and then without a single glance back. He now understands what it means to learn with a class; to raise his hand; to eat lunch on his own; to play at recess; and all the other small wonders that come with going to school.  From the start, Ezra seemed to have no issue joining his classmates in games at recess and chatting at lunch. He loves having play dates and sharing his toys with his friends. We were so scared that we had ruined other kids for Ezra with our germaphobic fears. All the times when we were at the park and another child would come near us and we herded Ezra away or when we ran in the other direction when we heard a cough remarkably seem to have had no effect him. It is as if the connection to other kids has been in him all along - he just needed permission to let it out. Yes, there are some experiences that he may not be ready for, but that list seems to dwindle each day. There is nothing that makes our hearts soar like when we see him playing with his friends.

Health-wise, school has been challenging. Ezra has gotten cold after cold since starting school. Unfortunately, this is a necessary part of having a brand new immune system. What other kids go through as babies and toddlers with coming down with illness after illness, Ezra now has to go through as a six year old. Thankfully, with the help of regular hand washing, he has not yet had any serious infections and has required antibiotics only once so far. We still go to clinic once a month for labs, vaccines and a check up. The fantastic news is that Ezra has responded to additional vaccines. He has one rocking immune system! We are getting close to being done with catching him up on his vaccines, which will be very welcome news for Ezra. Aside from a few minor issues, he is doing very, very well. He still has his mediport, which means he remains on a fever alert, and we remain cautious about infection. The more time we spend away from the hospital, the more difficult it is to deal with an emergency trip back, so we continue to do what we can to keep him safe. We are hoping that the port comes out in the upcoming months, but there's no set time frame at this point. 

Fitting for the holiday, we spent today at the place we are most thankful for and with some of the people who gave us all the reasons to be grateful - Sloan-Kettering. Admittedly, we didn't always feel so grateful for this place, as it's often hard to see the positive when everything is so scary and uncertain. But we have always been thankful that the chance for a cure for such a rare disease even exists and that medicine and science have figured it out - as imperfect and difficult as that cure may be. 

We don't need a holiday to feel gratitude for Ezra's donor. We thank her every time Ezra fights off a cold, when we find out that he has made antibodies, and each morning when he opens his eyes. We send her constant love and gratitude wherever she may be. 

The other day, Ezra heard the word "resilient" in a video and asked what it meant. I told him that resilient means that you can go through something very hard and get through it and keep on going with good spirits. He said, "oh, like the kid at the park who fell off the swing and then got right up?" I said "yes, exactly, but there is someone else I know who is very resilient." I told him that he is resilient and he had no idea why. When I said that going through two transplants is a very hard thing to do, his response was "I guess so." And that is exactly the kind of response we always hoped for - that his memories of how much he suffered during transplant would be vague or non-existent. May the memories of beeping machines and isolation gear forever be replaced with moments of laughter and love shared with friends and family. And today at clinic, Ezra said, "I'm very resilient, aren't I?" Yes, Ezra, you are.