The greatest joy in my life as a mom so far may just have happened a short while ago. After putting my phone down following a conversation with the clinic, Akiva and I walked into the living room to find Idan reading a book sweetly to himself. We shared with him the good news that his donor cells have continued to grow and now he has ***even more*** healthy cells than he did before. 96% donor T-cells (up from 92%), 100% donor myeloid cells, and 95% donor NK cells (up from 89%), to be exact. His facial expression went from “why are my parents acting like fools” to comprehending that he is one step closer to his dreams coming true.
At the ripe old age of 4, Idan knows what it means to have Hyper IgM. He hides behind us if we are outside and children walk by. He sits down on chairs with his hands on his lap at all times so as not to touch anything. He dislikes watching videos of concerts and other activities where there are large crowds. He looks sadly at children playing – in the sand, on the grass, on the playground, in a swimming pool. He quietly asks if he’ll ever be able to go to a real school. Today, we got to tell him that, one day in the not so distant future, that will all change, and we get to really believe it.
We still have a long and treacherous road ahead to make sure that Idan stays healthy and that GVHD does not develop, and we will not know for certain whether Idan is cured until we can put his new donor cells to the test. But we do know one thing that we did not know the first time around – Idan has a great graft, and his chances at a cure are looking better every single day.