Update 10/23/23

It has been an insane couple of months! Caleb received his second CAR-T infusion on September 6th and overall did really well. His 28 day, post CAR-T bone marrow biopsy showed that he was back in remission, which we were so happy about! Unfortunately, about a week after that biopsy, his CD19 cells started to show some recovery and without going into all the nitty gritty details, we have hit a few speed bumps over the last week or so. But, at the end of the day, after some additional immunotherapy and another bone marrow biopsy, Caleb still looks like he is in remission thankfully, which means we are officially heading into transplant.

Although, Caleb had "many" matched unrelated donors both in the U.S. and internationally, none of the donors/donor centers were able to line up on our timeline of the end of October. And as we have learned, timelines mean everything when it comes to transplant. So both Mike and I got tested to be Calebs donor, and Michael ended up being the best overall match. So Mike will be Calebs donor. We both really struggled with this at first, worrying that somehow this was an inferior option, but there is a lot of good evidence to support using a parent as a donor, both in terms of safety and outcomes, and I think for Mike, it gives him a tiny sense of control in this cyclone of chaos we have been flying around in for the last 14 months. 

Caleb, Mike and I will be admitted to Dupont tomorrow, October 24th. Felix will stay at home with our amazing parents and our incredible nanny Kirsten, rotating through Felix duty. Caleb starts total body radiation on Wednesday. He will have 3 days of radiation (two sessions each day) followed by two days of chemotherapy. on Monday October 30th, mike will have surgery to have his bone marrow harvested, and on October 31st, Caleb will have those cells transfused into his body. We initially weren't sure how we felt about having Halloween be our transplant day, but overall we're going to take it as a good thing. The spirits of family, friends and loved ones will be with us, looking over Caleb and hopefully allowing his body to accept Mikes marrow, in what we hope will be the last major step in this devastating leukemia journey. 

Thank you to everyone for your continued support, thoughts, prayers, and energy for Caleb and our entire family. We feel it every day. And if you can, just send some extra love to Mike as he donates a piece of himself to Caleb next week. I'm not sure he could have risen any higher in the amazing dad category, but this one really takes the cake! 

With gratitude,
Colleen (and Mike)