Sunday, August 10, 2014

Days + 342 to +353: The Revolving Door of Issues

Last week, Ezra's platelet count had dropped again. Just as the red blood cells had come under control, of course his platelets needed to take their turn again and cause problems. The doctor was planning to see his counts this week and then give another round of high dose IVIG. We were feeling frustrated at how difficult it has been to get these auto-antibodies under control. 

Then we showed up to clinic on Friday and his platelets had bounced up nicely and are back in the normal range! A pleasant surprise that we will gladly accept. The doctor wanted to do another check of the platelet antibodies, which we haven't done for a while because it requires a tremendous amount of blood. It will be interesting to see what this test shows. 

Because there always has to be something, over the weekend, one of Ezra's big toes developed redness around the toe nail. It seems to be infected. He started antibiotics and foot soaks. We will be watching it closely. We are hoping the infection clears up quickly and doesn't cause problems with his counts, which it may do. Here we go yet again.

The doctor also sent out another T cell count check on Friday (yeah, we're not sure how he has any blood left). Ezra's total lymphocyte count, which includes T cells and other types of cells, has been low, so we have no expectations of what this month's T cell count will show. Please prayers for a T cell increase!

As we approach the one year anniversary of Ezra's transplant on August 23, there are a lot of intense memories for us associated with the month of August.  This week marks one year from when Ezra was re-admitted to start high dose chemotherapy for the second transplant. Five years ago this past week, a 5 month old Ezra was admitted to our local hospital with labored breathing and would soon be escalated to intensive care. For the first time five years ago, we heard the name "Hyper IgM Syndrome," and life forever changed. August may always be a difficult month for us, but we have plans to change it into a month when we will also always celebrate life and hope.