Saturday, September 7, 2013

Days +12 to +15: New Year, New Life

First piece of good news: Ezra officially engrafted as of Thursday. The first day of neutrophils over .5 is considered to be the day of engraftment, so Ezra engrafted on Day +11, which happens to be the exact day the doctors predicted based on the size of his graft. Amazing. Ezra's first failed transplant took about 35 days to engraft. A world of difference this time around.

Second glorious piece of news: the new cells are 100% donor! 100, 100, 100! The chimerism test results came back quicker than expected. Tremendous relief and tears of joy. A moment we will always remember. Let it blot out the memory from last year of devastating news. New year, new life. Welcome donor cells. Please don't ever leave!

We wish we could thank Ezra's miracle donor - the reason this is all happening. The rules require that we wait one year before contact and then only if both donor and recipient mutually agree. What a gift she has given us. The gift of hope; the gift of life for Ezra and for us all. For now, we will just have to send our gratitude out into the world and hope she somehow hears us.

We know that there is so much left to this journey. The most important type of cell for Ezra's condition are T cells, and those cells won't begin to make an appearance until 4 to 6 months from now. Those are the cells that need to be donor cells in order for Ezra to be cured. Even though he is all donor now, the T cells could still possibly be mixed between Ezra and donor, so that is something that will continue to worry us. Ultimately, Ezra's immune system has to completely reconstitute and have the ability to make antibodies, which could take a year or more.

This process feels like a marathon with hurdles every few miles that need to be overcome to reach that far off finish line. For now, we rejoice in the hurdles that Ezra has soared over in this race for a cure.

Best of all, we are finally starting to see some small improvements in how Ezra feels. The holiday began with a fever scare. Ezra's fever was not going away and the doctors were getting very concerned. Ezra was sent off for a CT scan to check for pneumonia and other signs of infection. The next step if things didn't improve was to pull out his central line in case that was the cause of infection. Panic time. Thankfully, his fever started to go down and he has been fever free for three days now. 

We have also seen glimpses of his personality coming back. It's like watching your child be reborn. The little chatterbox is slowly appearing again. Yesterday, he wouldn't let the doctor leave the room until he told him about every rocket ever created. And after his CT scan, the doctor came in to ask if Ezra was smiling during the scan because it looked that way in that results. No, he wasn't smiling - he was pretending to snore because the technician had told him to close his eyes. This child never ceases to amaze.

The focus right now is getting Ezra to a place of better health. Intense stomach and bone pain are his biggest issues right now. He needs to do a lot of healing, but we're confident that we will get him there soon enough.

So wherever you may be tonight, raise a glass and toast to Ezra's good news and join us in hoping for better days ahead in the new year and years to come.