Saturday, October 5, 2013

Days +38 to +43: No Improvement

Unfortunately, Ezra has not improved as we had hoped. In fact, his pain is worse. It has been a very difficult week. Ezra has spent much of the days screaming and crying in pain from his stomach and legs. It is devastating to watch him suffer. His sweet face is twisted and contorted in pain. There are very few glimmers of our fun-loving, spirited, sweet boy. We keep hoping he will wake up one day feeling better. It has yet to happen. His doctors at Sloan have now realized how severe his pain is and have been running more tests and making adjustments with his meds. 

Yesterday was a particularly difficult day. We were at clinic and the doctor saw the intensity of Ezra's pain, and was concerned. We finally got home after a long day when the the phone rang and it was the doctor saying they wanted some more labs drawn ASAP. They had all conferred and were concerned that Ezra may have an infection in his blood, even though he is fever free and otherwise shows no sign of infection. Instead of having us drive back to the city, it was decided that we would go to our local hospital for the labs. Many, many hours later we finally arrived back home at 11:30 at night with an unhappy Ezra. The tests for blood infection take several days to be final. So far, nothing has showed up. A blood infection would be very bad. We are praying that is not the cause of his pain.

It may be that the pain is from his continuing engraftment. And that we are seeing the cumulative effects of two transplants. We will continue to investigate and hope that the changes in his medications will make a difference. 

On a positive note, his counts have remained steady. Chimerism tests were sent yesterday and we should have the results by the end of this week. Prayers that the suffering is not all for nothing and that growing donor cells are the ones causing the pain.

The overwhelming showing of support for Ezra for tomorrow's Gift of Life Walk for Life has been a bright light in these dark days. The two teams walking and running for Ezra are 60 people strong and over $22,000 has been raised for Gift of Life. We feel so honored and privileged that Ezra's story continues to inspire people to support the need to process more donor test kits so that more children and adults can have a second chance at life. 

We are also so grateful for the gifts that have continued to arrive at our doorstep for Ezra. Lately, they are the only things that bring a fleeting smile to Ezra's face. We received some gifts at the Ronald McDonald House that didn't say who sent them. If you haven't heard from us, please send us an email at so we can thank you appropriately! 

We are keeping up the fight to get our Ezra back - and hopefully, it will be a new and improved Ezra with a healthy immune system.