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 715/87

It’s 3:45am. Benjamin just vomited every bit of last night’s nourishment from his body. He has abdominal pain he can’t describe. I don’t know anymore if it’s a result of the medicine or if there is fluid trapped in his belly or if something else is wrong, like maybe those polyps have developed and we… Continue Reading Day 715/87

Day 692/64

Benjamin woke up early this morning with a high fever and tummy pain. He vomited during shift change a few minutes later. It was a strange, dark, pungent liquid. There were many hands here to keep him as comfortable as possible. He begged for a bath, so the nurses unhooked him from his fluids. I… Continue Reading Day 692/64

Day 687/59

It was a very busy day up here on 7 South. I was pouring my first cup of coffee when the phone rang. It was the nurse navigator for the CAR-T trial at the Children’s Hospital of Philadelphia. Benjamin had just woken up, and nurse after nurse was coming in to say hello to him.… Continue Reading Day 687/59

Day 680/52

Benjamin’s path has been made clear, and it leads to Philadelphia. Our morning began with an encouraging lab report. Benjamin’s platelets would need transfusion, but his white blood cell count came down also, and his blasts decreased to 48%. I thought it was probably just sample bias, but it was still refreshing. Yesterday’s number (80%)… Continue Reading Day 680/52