Sunday, December 23, 2012

Day +222: And Then There Were None

The transplant has failed. Ezra has only 1% donor cells left. There is nothing left to do except start the dismal process of talking to the doctors about how just how bad are our bad options. It took us nearly 3 years and countless consultations with doctors across the world to decide to move forward with a less than ideal transplant and now we are back to square one, but with worse options and with the scars of the transplant process fresh on his skin and fresh in our minds and hearts. It may be that the right decision is to not do anything. To let him be. To let him live. And to hope that someday soon that long sought after match appears.

We take comfort in the fact that Ezra is happy and doing well. He has been spending time recently jamming with his beloved music teacher Sean from Music for Aardvarks (a song about pooping on the potty is the new favorite). And we've been taking advantage of his recently granted permission to go to the park when not crowded. We're the crazy ones playing in the freezing cold -- but that also means the park is empty, so perfect playing conditions for us. Ezra has been passing the time at clinic hanging out with his pals Bert and Ernie. Bert "helps" de-access Ezra's port, but Ernie isn't allowed to help because Ezra says he's too much of a troublemaker to be trusted.

We will continue to update this blog with Ezra's progress. Thank you all for your support during these past 7 months, and thank you to those of you who continue to reach out in different ways to bring a smile to Ezra's face. Happy holidays and happy new year.

Thursday, December 13, 2012

Day +211: Hoping for a Hanukkah Miracle

This past month has been spent waiting for the immunosuppressants to make their way out of Ezra's system so that we can test the donor chimerism again, which will be done soon.  Now that he has been off the immunosuppressants for about one month, the hope is that the donor cells have been able to grow. If not, then this is probably the end of the road for this transplant, and we will start discussing our options for next steps.

This week we have been joyfully celebrating Hanukkah. Last Hanukkah, we joined up with The Maccabeats, actress Mayim Bialik and Gift of Life to try and find Ezra's miracle bone marrow match. No miracles happened last year for Ezra, although matches for many other patients were found. This year, we are still hoping for a miracle match for Ezra, but first we are hoping that he won't need a match for second transplant and instead his donor cells will grow, grow, grow. That is the Hanukkah miracle we are praying for.

In the meantime, we are spoiling Ezra with Hanukkah fun as much as possible and loving every minute of it. And this year we are celebrating in a big way with a huge menorah on our front lawn. A rabbi from the local Chabad (Jewish outreach organization) randomly stopped by our house and asked if we would be willing to let them place one of their super sized menorahs on our front lawn. We said sure - we could use some extra light in our lives this year. It has been a huge hit with Ezra and the whole neighborhood. We're soaking up the light while we can.