Day 698/70

It’s our first night in a new room up here on the seventh floor. Tomorrow will be the 30th day of this admission, when we are required to switch rooms, but we decided to move early. There is a lot happening over the next few days that will require our full attention. Last night, our… Continue Reading Day 698/70

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 688/60

Benjamin didn’t sleep very well last night. His side was hurting intensely after yesterday’s platelet transfusion. I woke up before he did, when our day shift nurse came in to tell me he’d be getting a red blood cell transfusion today. I had a sinking feeling about his labs. I hate that feeling. His hemoglobin… Continue Reading Day 688/60

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 683/55

When Benjamin is in pain, everything seems so much harder. His spleen continued to agonize him throughout the night. It woke him up and made his eyes wide with fear. We both caught patches of sleep between low doses of oral morphine and hot bath after hot bath. The pain radiated into his left shoulder… Continue Reading Day 683/55