Caleb Update 9/25/22

Last Wednesday, Caleb finished his re-induction protocol and had a bone marrow biopsy to see if there was any cancer left in his bone marrow.  Unfortunately, he still has 0.7% Leukemia cells in his marrow, so he is not in remission yet.  This was definitely not the result that we had hoped for.  What this means now is that the doctors are recommending we move toward bone marrow transplant at this point. 

In order to get there, we still need to get him into full remission. In order to do that now, they are going to use a new immunotherapy called Blinatumomab.  This therapy is a 28 day continuous infusion. Hopefully we will be able to be home for some of it with a backpack of the medicine, and just come in twice a week to swap out the backpack.  Caleb is still dealing with a bunch of GI issues and having trouble eating, so as long as that gets better, we can be home.  

Ideally he is in full remission (0% Leukemia) at day 29 after the blinatumomab.  If that is the case, they would probably do one more 28 day infusion to make sure they got everything, and then we would move to transplant.  

Transplant is a lot.  The prep for it includes a heavy chemo regimen as well as 3 days of total body radiation, and then transplant. The initial recovery will be 4-6 weeks in isolation as his immune system recovers and the new marrow takes hold.  Then, it take about 6-12 months for his immune system to fully recover.  

We are starting to wrap our brains around all of this, but it has been very tough. Once we meet with the transplant team this week, I think we will have more of our questions answered and info about donors, etc. We feel so much support coming from our incredible family, friends and community, and we are so grateful.  We are also very fortunate to live in a time where these new immunotherapy treatments are available, some of which were not even available (outside of clinical trials) when he was diagnosed in 2019.  Thanks for all the love. 

Mike and Colleen