The results of one of the repeat engraftment studies are in and the donor cells have dropped to only 8%. The doctors are saying that the percentage might still go up and that it is too early to rely on these results. They will repeat the tests in a few weeks. This gives us little comfort. The doctors here are saying that we need to wait and they wouldn't do another transplant until he is 6 months post-transplant because of the toxicity from the chemo conditioning.
The thought of going through another transplant after we just got discharged is unbearable. And Ezra's back-up transplant options are not good. We are going to start talking to the other transplant centers that we had previously considered, gather opinions and go from there. In the meantime, we can only hope that next month's testing will show more donor cells.
For now, this is our burden to bear. Ezra is so happy to be home. He doesn't stay still for a moment and runs from toy to toy all day. He is being really good about getting up early to travel back to the hospital on clinic days. We are struggling to get used to the new "norm" of chasing him around with meds, drinks and food all day long. He also has to take meds during the night, so none of us are getting enough rest. We are still happy to take this crazy schedule over being inpatient, but the latest bad news changes everything.
Some of you have asked if Ezra still needs blood and platelets. Yes, he is still requiring platelets on a regular basis. You can be any blood type to donate platelets. He is starting to hold blood a bit longer, but is still transfusion dependent. He is still O+ blood type. Please contact Mary Thomas at 212-639-3335 to schedule an appointment.
Last, this latest news renews the need for Ezra to find a better source of stem cells if he needs another transplant. If he were to find a perfect bone marrow match, it would be a miracle. We spent two years searching for a match for him to no avail. But there's always the chance for a miracle match to appear. Please register as a donor, encourage your friends to become donors or make a donation to cover the cost of processing a donor test kit so someone else can be a donor at www.giftoflife.org/help4ezra.
Thank you all for the love and support.
just saw your post and called Mary and will be there aug 6th to donate platelets..I too am O+..I hope I can do anything to help out..
ReplyDeleteMy thoughts and prayers are with your family..
Sorry to hear this difficult news. Sending the most positive possible wishes your way. Teisha
ReplyDeleteI hope this may help if Ezra needs a second transplant. My adult son had Acute Lymphoblastic Leukemia and needed a transplant. The team at Jefferson University Medical Center in Philadelphia recommended a Haplo-identical transplant using the stem cells of one biological parent. Don't know the science of this, so it may not be applicable to Ezra's condition. Worth a mention to Ezra's medical team. I am following Ezra and hope amd pray for the best for him and his entire family.
ReplyDeleteRobin is there any way to donate from afar and have the blood or platelets shipped overnight? I work with so many people from UCSF medical school. Maybe there's a way to get a shipment from there? I'll be in Boston this week. Could Children's hospital ship? Let me know. Love Jenn.
ReplyDeleteLittle Ezra has been through so much already. I am so sorry to hear about the possibility of a second one. That must be heart breaking. I do know a boy who had to do that here. Same thing. He lost the transplant, recovered really quickly and had another one six months later. He breezed through the second transplant and is doing really well. I pray that Ezra does not have to go through this again, but if so, I believe he is strong and will bounce back like he did this time. Always thinking of you guys.
ReplyDeleteWe'll journey onward with you. Sending love and support through warm wishes and a healthy dose of hope.
ReplyDeletetoxicity (neuro and nefro mainly) can be alleviated with beef broth coocked in enameled pot!
ReplyDeleteUse the 6 months to prepare Ezra for hard time of the next chemo which is probable.
So sorry to hear this news. Sending love and hope always. xoxo
ReplyDelete