At 4:40 PM, Ezra Jordan Fineman received a second chance for a long, healthy life. It came in the form of 10 MLs of yellowish liquid in a large syringe. That is what life-saving cells look like. Incredible to comprehend. Ezra slept surrounded by his mommy and daddy while the doctor slowly pushed the cells into his central line. To us, it felt like the moment when everything changes. In those cells, we saw playdates, birthday parties, school and family gatherings. And now the stem cells are inside his body traveling to where they need to be.
Shortly before the transplant, Ezra's primary doctor came to tell us that the cell dose is huge - so big that they are saving some cells and freezing it in case Ezra should need them in the future. They said that if they could choose a graft, it would look like this one. Tears of gratitude for his incredible donor upon hearing this news.
Now we wait. The next milestone is neutrophil engraftment. Neutrophils are the first cell to grow back. Engraftment is when the neutrophils reach over 500 for 3 consecutive days. This is expected to take on average 12 days for this type of transplant.
This is a frightening time period until the neutrophils start to come in. The things we are praying for are 1) speedy donor cell engraftment; 2) no infections; and 3) no graft versus host disease (GVHD).
Ezra is really suffering the effects of the chemo. He is also puffy from all the fluids he has been getting and the steroids. The steroids have stopped thankfully and the fluids will go down a bit now. Despite how miserable he feels, Ezra spent Day Zero doing two of his favorite things - demolishing block buildings and creating a new volcano.
We are also struck by how dependent Ezra's life has been on the generosity of strangers. Our hero of a donor. All the family, friends and strangers lining up to donate platelets and blood. The people who donate plasma to make the immunoglobulin therapy that Ezra has received every 4 weeks since he was 4 months old. All the people around the world who swabbed their cheeks or gave blood to join the bone marrow registry to see if they are a match for Ezra. It feels like there is a little piece of so many others inside our son. How lucky we are to receive such love and support.
We are doing all we can to make Ezra comfortable and happy during this time. It breaks our hearts to see him suffer so much. All we can do is to keep the goal of a cure front and center. If this transplant works it will be nothing short of a miracle. A miracle that Ezra has fought long and hard to obtain.