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.
Robin, Evan, Ezra, what can we say? That perfect match will be there one day soon, I just know it. You guys are the best. We are here for you for whatever you guys need. Love you guys!
ReplyDeleteWords cannot express how sorry I am. I have been following your beautiful family's journey for so long now and have always been, and will continue to, root for Ezra. Thanks to you, I learned about and joined Be the Match, with the tiny hope that I might be Ezra's much-needed match. I will continue praying and hoping for you that 2013 will be a better year and that Ezra's match will soon be found. You are all an inspiration. Mandy Rosenfeld, Burlington, VT
ReplyDeletedo you guys have a backyard at home with a playground, so as not to have to "worry" about crowding?
ReplyDeleteI am so sorry that you guys are back to square one. But you have a great attitude as does Ezra. Hoping that perfect match comes soon and until then, he can live life.
ReplyDeleteRobin & Evan - our hearts are breaking for you now. We will keep praying for Ezra and Anny's whole class is praying for him as well. Please let us know if there is anything we can do for you - another meal?
ReplyDeleteRobyn Jeff Justin & Anny
whats his hebrew name so that i can pray for him?
ReplyDeleteEzra Aviel Ben Hertzelia Shandel. Thank you.
DeleteWe don't know one another, but we are new-ish members (a year now) of your shul. We will keep your family and Ezra in our tefillot for a perfect match and a much smoother path ahead.
ReplyDeleteSincerely,
Margo Heda
Robin and Evan, we are thinking of you and will continue to daaven for Ezra's perfect match. Much love from LA...Gabe and Jackie
ReplyDeleteWe are thinking of you, we love you. Suzanne and Scott
ReplyDeletePraying for ezra,
ReplyDeleteThinking of you and praying for you all. Will continue to raise awareness to add more and more people to the bone marrow registry to find Ezra's perfect match. So glad that Ezra can enjoy the park a bit more now and that he is feeling well and happy.
ReplyDeleteOh, no. Oh, no. I am so, so sorry to read this. I've never met you, but we'll be keeping you in our thoughts and tefillot. And please do keep updating this blog.
ReplyDeleteWith our prayers for that perfect match and good news.
Hey guys, this is Hindy's mom. I have read this again, many times. Your pain is felt with every letter you have typed- but I can also feel your warm smiles- and your calm and patient demeanor- as you felt to me as parents and as individuals. I am sending you love, strength and hope.
ReplyDeleteBirthright season is here, and my friends and I have been registering hundreds of potential donors here in Israel. Hopefully their kits can be processed quickly and one of them can be Ezra's match!
ReplyDelete