Caleb update 11/14/22

It has been a long month of waiting, which is never easy. Caleb finished his 28 day infusion of Blinatumomab on November 2nd, and had his follow up bone marrow biopsy on November 7th. We are so happy to share that he is officially in remission!!! This is exactly what we were hoping for and we feel very grateful to receive this news! 

While we were riding this last month out, we were fortunate enough to be able to meet with one of the Leukemia specialists at CHOP for a second opinion. She was wonderful and walked us through a lot of the data regarding CAR-T therapy. CAR-T therapy is another type of immunotherapy that is still relatively new in the oncology world. For some kids, it is a way to treat relapsed or refractory leukemia and possibly spare some patients from going through a bone marrow transplant. Mike and I were preparing ourselves that bone marrow transplant was going to be the next step in Calebs treatment plan, but the CHOP team was able to share some numbers with us regarding outcomes and relapse rates that made us shift our thinking altogether.

Obviously our goal right now is to do everything in our power to keep Calebs leukemia in remission for the rest of his life, and we will go to any length to make that happen, but transplant also comes with many complications and toxicities that have long term implications such as cognitive impairments, infertility, growth issues and the possibility of graft versus host disease. After many discussions with the team at CHOP and our team at Dupont, we decided that pursuing CAR-T at DuPont, instead of transplant made a lot of sense and gives us the opportunity to hopefully protect Caleb from so many of the potential side effects of transplant.

So as of now, we are waiting for Calebs cells to be engineered for the CAR-T infusion. In the meantime we are doing maintenance chemotherapy every 10 days until the cells are ready. We are hoping that the cells will be ready for infusion in about a month. Once they are prepared, Caleb will have 4 back to back days of lymphodepleting chemotherapy and then the CAR-T cells will be infused. 

CAR-T overall has much fewer severe side effects than transplant, but it isn't without risk, especially in the first 8 weeks after infusion. Our team has asked that we find housing closer to the hospital in Delaware, so if we do have any complications Caleb can be quickly evaluated. So, once we find a short term housing option closer to the hospital, we will be back in DE for the 6 to 8 weeks following the infusion.

Caleb is such a trooper and we are all still adjusting to our new normal, but we feel so grateful for all the love, thoughts, prayers, meals, phone calls, texts and letters from everyone. It has made such a difference and we can't thank everyone enough!

Colleen and Mike