The next step is the one making us very nervous because it is when everything went downhill last time - chimerism. Once Ezra achieves engraftment, a blood test will be done to see whether the cells growing are Ezra's cells or the donor's cells. Last year at this stage, Ezra's chimerism showed only 20% donor cells and they continued to diminish as the months went on. If the neutrophils continue to grow in the right direction, then we are hoping this test will be sent out by the end of the week, and then we anxiously await the results.
This next phase also brings the possibility of Graft Versus Host Disease and continued risk of infection both from outside and from latent viruses that can be passed from the donor through the graft. These viruses can activate once inside of the immune compromised recipient and cause big problems.
Unfortunately, the appearance of the neutrophils has not yet improved how Ezra feels. Yesterday was the worst day he has had so far - intense pain all throughout his body. This afternoon was a little better. He also has been dealing with a fever for the past two days. It may just be part of engraftment, but the doctors are treating it as an infection. We are waiting for cultures to come back and hoping he clears it soon.
With Rosh Hashanah upon us, we are praying that this year will bring Ezra's cure and an end to his life of seclusion and hospital visits. For each of the four past Rosh Hashanahs since Ezra's diagnosis at five months old, we wondered would this be a year of good health? Of illness? Of life or of death? Each year we have prayed that the coming year would bring life and health for our baby boy. But never have the prayers that he be inscribed and sealed in the book of life felt so imminent and critical. Please let this be the year of the cure. Of health and of life.
This will likely be our last post until after Saturday night when the holiday is over. We hope our next post will have good news of engraftment and better days for Ezra. We wish you all a l'shana tova!
Can't wait to hear the good news that will await us Saturday. Go neutrophils!!!! And go away pain!!! I love to see that he still has his curls.
ReplyDeleteHopefully the pain is a good sign, as his body is literally consumed with those new cells. We are all praying along with you for your precious little man who has brought so much encouragement to so many. It's going to be good.
ReplyDeletewe will be praying for ezra and for strength for his amazing parents who have given it their all and then some. Hopefully by next Rosh Hashanah we can sit in shul and discuss the medical issues as being in the past and our healthy children as part of our present and future. Shana Tova u'metukah
ReplyDeleteHope the good news continues and multiplies!
ReplyDeleteWishing you a Shana Tovah! A year of health and happiness . . . inscribed in the book of life ... of watching Ezra grow and learn.
ReplyDeleteYocheved Berger
GOL Volunteer and Stem Cell Donor
Shana Tovah! Let it be the last difficult days for Ezra and the very happy year after!
ReplyDeleteWe all here in Warsaw want to see Ezra recovering and becoming a strong and wise man!
Wishing Ezra an abundance of good health and recovery in the new year. We are all praying and we know he can win this battle! -Aviva & Yitzi
ReplyDeleteShana Tovah to your entire family. Wishing you an easy holiday with rest and excellent results. We hope to hear good news in the New Year.
ReplyDeleteShanah tovah - will be thinking of you all a lot over the holiday. Hoping for good news.
ReplyDeleteShana tovah Ezra. Hoping for relief from the pain, good news on the neutrophils and a healthy New Year.
ReplyDeleteAnxiously awaiting to hear what the New Year brings! Only good thoughts and well wishes to you all! Susie Welling
ReplyDelete