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 690/62

Benji asked for pain medication last night. His side started hurting too badly to sleep. So for the first time in a week, he took a low dose of oral morphine for his spleen. I turned on the television to distract him until it kicked in. The Wizard of Oz was on. The cowardly lion… Continue Reading Day 690/62

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 686/58

Benji slept for twelve hours last night. I could tell it would be a long rest when he fell asleep. He needed it. The round of chemotherapy Benji finished yesterday is working quickly to suppress his marrow. All of his counts are dropping. His white blood cell count this morning was just over a thousand,… Continue Reading Day 686/58

Day 685/57

The last day of Benjamin’s intermediate level chemotherapy has come and gone. Now, we wait. This morning’s lab report showed a continued trend in the right direction. Benji’s white blood cell count was about 2450, and 27% of those cells were leukemia blasts. Such a palatable number compared to last week’s averages. His absolute neutrophil… Continue Reading Day 685/57

Day 665/37

At the end of days like this, when I come to this space, I find an exhaustion that permeates everything. I want to collapse but I need to sort things out. I can’t imagine how Benjamin feels. He continues to teach me how to handle this–with patience, bravery, humor and grace. Banyan was up and dressed… Continue Reading Day 665/37