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!
