After the past week, we can finally say that the real Ezra is back, albeit not 100%, but most definitely back! Since we started the transplant process and in particular the past month at home, Ezra has been totally consumed by the fog of pain and dulled by pain medications. He was shut down and not interested in anything except sitting on the couch and watching movies or reading books. We sat by him with broken hearts feeling helpless and unable to alleviate his pain. But over the past two weeks, we've watched the real Ezra breaking through the fog and returning to us. It is as if he is rediscovering himself - what it feels like to laugh, to be silly, to be mischievous. His inquisitive mind is back to cranking away, mostly about all things space. It is a blessing to see and we are rejoicing with both laughter and tears.
All this being said, Ezra is still struggling with pain. The pain is slowly lessening, and now it is the real Ezra working through it and not the miserable post-transplant Ezra. He is still taking pain medication, but it is basically on an as needed basis and the need is less frequent. We know there may be setbacks, and we also know this is a very long journey. As long as the path is towards improvement, then that is what matters.
Last week, we were sad because Ezra's hair was not yet growing back and his old hair was falling out. This week, we are happy to say that new little hairs have started to pop out. We can't wait for that curly mop head to be back (although we know that hair sometimes grows back differently post-transplant)!
Ezra's counts have been steadily improving. His platelets have actually been in the normal range for the past few weeks. This is incredible because after the first transplant, Ezra's platelets remained low and never returned to normal. His neutrophils have been solid and B and NK cells have been increasing.
So what's missing? Just the most important type of cell - T cells. With the type of transplant that Ezra had (T Cell Depleted), it takes on average 4 to 6 months for T cells to appear. We may start seeing some T cells around 3 months post-transplant. He's not quite there yet, but those T cells can't show up soon enough for us. Without T cells, Ezra remains highly susceptible to serious
All this being said, Ezra is still struggling with pain. The pain is slowly lessening, and now it is the real Ezra working through it and not the miserable post-transplant Ezra. He is still taking pain medication, but it is basically on an as needed basis and the need is less frequent. We know there may be setbacks, and we also know this is a very long journey. As long as the path is towards improvement, then that is what matters.
Last week, we were sad because Ezra's hair was not yet growing back and his old hair was falling out. This week, we are happy to say that new little hairs have started to pop out. We can't wait for that curly mop head to be back (although we know that hair sometimes grows back differently post-transplant)!
Ezra's counts have been steadily improving. His platelets have actually been in the normal range for the past few weeks. This is incredible because after the first transplant, Ezra's platelets remained low and never returned to normal. His neutrophils have been solid and B and NK cells have been increasing.
So what's missing? Just the most important type of cell - T cells. With the type of transplant that Ezra had (T Cell Depleted), it takes on average 4 to 6 months for T cells to appear. We may start seeing some T cells around 3 months post-transplant. He's not quite there yet, but those T cells can't show up soon enough for us. Without T cells, Ezra remains highly susceptible to serious
infection and will not survive in the long run without them. In a non T Cell Depleted transplant, the recipient receives some T cells with the graft at the time of transplant. These T cells give some protection while the new immune system grows and starts to make new T cells. Ezra does not have the benefit of the protection of those donor T cells in this interim period. So grow T cells, grow, and fast.
Another round of chimerism tests will be sent out this week. And another round of extra anxiety for us waiting for word that those donor cells are still hopefully ruling Ezra's immune system.
Another round of chimerism tests will be sent out this week. And another round of extra anxiety for us waiting for word that those donor cells are still hopefully ruling Ezra's immune system.
