Saturday, August 23, 2014

Day +365: One Year - A Celebration of Life

One year. A year like no other. Looking back on the past year, it feels like it can be divided by all the challenges Ezra has faced. First, round two of high dose chemo, transplant, engraftment and the unspeakable suffering of that time. Next, home and the horrific pain that Ezra suffered, which made him cry all day, as he sat covered in hot packs in a fog from pain medication. Then, just as the pain resolved, came skin GVHD and the round of immune-suppressing steroids used to stop it. Next up, parainfluenza virus and liver issues. And just when he had gotten over the virus and stopped the steroids, the auto-antibodies against his red blood cells, platelets and neutrophils started their vicious attack. Back in the hospital for the month of March with this frightening turn of events, a problem that continues to plague him and drugs that continue to prevent his new immune system from growing.

We still do not know how we ever mustered the strength to walk our baby back into the hospital and subject him once again to the nightmare of transplant. It was solely our belief that transplant was his best chance at a long, healthy life. And that we owed it to him to try and give him that life.

While there is much of transplant that we try not to remember, there is too much that we will never forget. The moment of transplant. Eyeing that impossibly small syringe and not believing that small amount of cells could save our son's life and grow into a new immune system. Everything - all of our lives - hanging on a minuscule amount of cells. At that moment, remembering how hard it was to breathe behind those masks - they make you feel like you're hyperventilating. And maybe we were. But the mask did not stop us from covering Ezra's chemo-soured head with kisses and wondering when he would once again smell like baby shampoo.

We have never gone into great detail as to the horrors chemo and the transplant process inflicted on Ezra's little body, especially the second time around. Suffice to say that it was horrible. But what is amazing, is the way that his body has healed and dealt with all the changes in the past two and a half years of two transplant journeys. From pre-transplant to the horrors of transplant to post-transplant weight loss and hair loss to the bloating of steroids to the still puffy, but not as puffy of today - it is breathtaking to see how his body has changed. We have been trying to teach Ezra to appreciate the way his body can heal and to take comfort in his body's incredible ability to heal.

Our hope that Ezra will someday be cured would be impossible without Ezra's miracle needle-in-a-haystack donor. Our hope when we had none. We owe everything to her and we hope she knows how much she means to us. We feel so much gratitude that a cure even exists, as difficult as it may be, and that Ezra's doctors have gotten him this far.

In celebration of Ezra's life, we are forming Team Ezra for the Gift of Life Bone Marrow Foundation Walk for Life taking place on Sunday, October 26 in Paramus, New Jersey. The event is a 5K walk or run and includes a donor-recipient meeting, kids area and entertainment. All net proceeds from the walk go to adding more donors to the registry. Please join us in honoring Ezra and helping others have a second chance at life. Register for Team Ezra at If you can't make the walk please consider donating to Team Ezra or to our family fundraising page 

We are also in the process of designing an awesome Team Ezra shirt - stay tuned!

We celebrated the one year transplant anniversary over the past few days with cake and balloons and a special shirt for Ezra that says "I survived TWO stem cell transplants" (who knew they made such shirts? And in kid sizes?). Our journey for a cure is sadly nowhere near over. We enter year two post-transplant with a certain amount of fear of what may come, but mainly we are hopeful. Hopeful that this year may be the year that Ezra is cured. 

Ezra has a daily calendar that he fills out each day with his teacher. It has a spot for feelings. Everyday Ezra chooses "Happy" because, as he says, "I am always happy." This is what we hang onto more than anything - our happy little boy who leads us through the darkest of days so that all we see is light.