Sunday, May 15, 2016

Finding His Voice

We know that it has been quite a long time since our last update, but it It has been for good reason - we are happy to report that Ezra is doing very well! He made it through the cold and flu winter season - with his share of infections - and his immune system is a bit stronger for it. Ezra’s new immune system is doing well with fighting off infections, but it is still new and with no prior exposures, infections tend to be a bit worse and take a bit longer for him to completely fight off. That should change with time. All measures of his immune system function are good, and, even better, he has responded to all vaccines he has received so far! The last check of his donor chimerism showed that he remains 100% donor in all cell lines. His doctor is quite happy with his immune system and so are we.   

In fact, Ezra’s doctor is so happy with how he is doing that he is scheduled to have his port removed possibly this week or in a few weeks if his current illness doesn't clear in time. Ezra was scheduled to have it removed last month, but the surgery had to be postponed because we found out that Ezra is once again iron deficient. After running some tests to make sure there is no hidden reason for the recurring iron deficiency, Ezra’s doctor thinks that his total body iron stores continue to be depleted from all that he has been through with transplant and the complications following transplant, along with the continuing need for blood draws. He has received treatment with IV iron and we started an oral iron supplement with the hope that we can boost him to a higher level and then keep him there without relying on IV iron going forward. Removing his port will be another huge milestone, although no doubt about it - that port has been a lifesaver for the past four years and we are letting it go with some trepidation. 

Ezra knows that his port is coming out and he is processing the news day by day. We typically have not shared medical news like this with Ezra far in advance because it caused too much anxiety and he did not have a good handle on the passage of time. But he is older now and his understanding of his world is constantly maturing. He was initially upset about the surgery, but is now excited that his port is coming out. Most interesting of all, for the first time, he has told HIS story to HIS friends. Ezra has never really wanted to talk much about transplant and all he has been through. He came home from school the other day and said that he told his friend at lunch all about his port and “the whole story.” I asked him to tell me what he said and after some coaxing, he started with, “well, I said that when I was born I had a little bit of a problem with my cells..."and he continued to tell his story in his words. It was amazing to hear him find his voice. We can’t wait to see how his story and his understanding of this journey changes and shapes him as he grows.

The surgery will only go forward if Ezra is in good health. We warned Ezra that the surgery may get postponed again and he interrupted to say, “I know, I know, life is unpredictable. Life is like a pop up show. You never know what’s going to pop up.” And with that, he summed up the lessons we have learned over the past 7 years. The surgery will be difficult for Ezra and difficult for us. The surgeries have always been the most difficult for us. But we will keep our eyes on what it represents - another sign of life and good health. 

With our joy in how well Ezra is doing comes sadness in the suffering of other children we have met during this journey. We recently lost two beautiful young boys who had become our friends during the challenges of the past years. And there are others who are fighting for their lives right now. We share in their parents' anguish. Every moment that Ezra lives is all the more precious knowing how terribly difficult the quest for good health is for these boys. 

We are finally daring to look forward (although not too far) to a summer full of "normal" seven year old activities planned for Ezra. First grade is coming to an end (what? how?) and our little man is loving exploring the world bit by bit. He is our miracle and we are filled with ever constant gratitude that we are his parents.