Day 677/49

Benjamin’s day began at 5:30am, when our night nurse came to deaccess his port. He was sleepy but kind, and understood the plan. The nurse used a fast acting numbing cream and gave him fifteen minutes before coming back in to access. With the cream and dressing on his port, he went back to sleep.… Continue Reading Day 677/49

Day 676/48

I was hopeful this morning’s labs would show some reverse in yesterday’s trend, but they¬†did not. The blasts in Benji’s blood increased a little more. His platelet transfusion was completely absorbed, and he will likely need another one tomorrow. His bladder issues continue. I sat with my coffee and listened to my boy sleep while… Continue Reading Day 676/48

Day 671/43

Benji’s Blinatumomab began its slow drip at 5:12 this morning. Twenty hours in, and so far, so good. It seems like such a mundane phrase for such a big day. Mundane is just fine with me. Our sweet nurse woke me up, per request, before she hung the medicine. I put my hand on Benji’s… Continue Reading Day 671/43

Day 640/12

Benjamin has had what his nurses described as an “eventful day.” This morning seems like ages ago. Once again I let Benjamin sleep as late as possible. When he woke up he was super hungry. He wanted to go down to the cafeteria and use the bagel toaster for the sesame bagel his Grammy left… Continue Reading Day 640/12

Day 630/2

Benjamin and I enjoyed a much more relaxing day today. He slept well; I did not, because a floating nurse from PICU kept trying to give Benjamin oxygen. I assured her he didn’t need it. He was sleeping deeply, and I knew those tubes would do more harm than good to his rest. I asked… Continue Reading Day 630/2

Day 629/1

Benjamin slept soundly. He received a platelet transfusion in the night, and another one when he woke up, elevating his platelet level to 47,000–just below the threshold required for his colonoscopy and endoscopy. The team was satisfied with this number, so we moved forward. Day One. Michael and Banyan arrived just before the doctors made… Continue Reading Day 629/1