Day 737/109

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It sure was nice to make breakfast in my own kitchen this morning. Benjamin woke up feeling strong. He was hungry and ready for action. He was excited to eat, but midway through his meal, his stomach pain brought him to tears. Michael and I thought we had noticed a pattern forming; the same thing happened with last night’s ice cream cone. But when he ate lunch, he was completely fine. I am still trying to find rhyme or reason with his tummy trouble.

Last night’s cleaning frenzy led to late night researching. I actually found a physician in California who has had pretty significant experience with both CD22 CAR-T treatment and PD1 inhibitors in children with CMMRD. I couldn’t believe it. I emailed her and cc’d Dr. Oshrine immediately, asking her for her advice as we move forward. This afternoon she wrote back and was very kind. She said she would recommend the CD22 CAR-T trial if it is at all possible. She said if it isn’t possible–if Monday’s peripheral sample shows diminished CD22, or if the timeline is just too long–it may be reasonable to consider a trial of Nivolumab, a PD1 inhibitor which is approved for adults but not yet approved for children. This is in line with what Dr. Tabori has said in the past. I thanked her for her insight and told her that Dr. Oshrine has strongly encouraged the CAR-T trial as well, should Benjamin continue to be eligible. I am grateful to have this woman on our team now.

Benjamin felt really good for most of the day today. He was ready to get out and have some fun. Michael took the boys to spend some of their Christmas gift cards at some of their favorite places, while I continued Project Deep Clean at home. It felt so good to take care of our space, and to know that Benjamin was having a great time. When they returned, they played outside together in the chilly air, Benjamin on his scooter and Banyan playing football. I want to freeze those moments. In those moments, everything is exactly as it should be.

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