Day 743/115

Our path looks much more clear today. The National Institutes of Health considers Benjamin a viable candidate for their CAR-T clinical trial targeting the CD22 protein. It’s such a relief to write these words. I feel like I can exhale for a minute. Benjamin woke up at 4:30am in pain and needed a hot bath. The relief… Continue Reading Day 743/115

Day 742/114

Our intention was unmistakable. A clear path toward Benjamin’s perfect healing. Today we heard the words “no clear path,” and “imperfect options.” I realized today that we aren’t waiting for a path to appear before us. We are already on it. With every decision, every appointment, every blood draw, every heat pack, every vomit and every bath in the… Continue Reading Day 742/114

Day 740/112

High highs and low lows today. Sunrises and sunsets. The comforts of home and the realities of leukemia. For the first time in far too long, my day began on the Ringling Bridge with my dear friend. It felt so good to walk with her again, to watch the sky turn orange over the bay, to… Continue Reading Day 740/112

Day 739/111

Benji is sleeping next to me. He is pleasantly exhausted from a long, busy day that went very well. Benji was a little nervous this morning and his tummy hurt. He didn’t want any breakfast. We gave him some Kytril just before we put the numbing cream on his chest. We all took Banyan to… Continue Reading Day 739/111

Day 735/107

We are home. Everything feels pretty overwhelming right now. So many emotions today and so much uncertainty ahead. Home is the word and the feeling and the place I am grateful to return to. When I saw Benjamin’s lab numbers this morning I wasn’t sure we’d be discharged. His white cell count and number of… Continue Reading Day 735/107

Day 728/100

We received the results of Benjamin’s bone marrow aspirate today. We don’t have the complete analysis, and a clear path has not yet been laid in front of us. But the news we learned feels like good news, and until we have more information, we choose to accept this as a positive first step. I… Continue Reading Day 728/100