Day 646/18

A nightmare woke Benji up today before his nurses did this morning. He was scared and didn’t want to go back to sleep. He returned to reality, nestled into me and said, “I’m glad you’re with me.” Me too, kid. Benji’s platelets were at 16,000 this morning, so a transfusion was ordered. Otherwise we expected… Continue Reading Day 646/18

Day 645/17

Benjamin was super tired this morning. He slept in later than he has since we’ve been here. I figured after yesterday’s diuretic episode he was probably pretty depleted and needed the rest. Benji was still sleeping and I was making my second cup of coffee when the Child Life Specialist came by. She said she’d… Continue Reading Day 645/17

Day 643/15

Benjamin’s sleepiness continues as his counts keep dropping. He didn’t wake up until morning rounds, when he heard me talking with Dr. Moore and our nursing team. There were no changes to report, just a plan for the day that would accommodate Benji’s Dasatanib, Vincristine, Dexrazoxane, Daunorubicin, and final Erwinia shots. Aunt Sarah brought Benji… Continue Reading Day 643/15

Day 641/13

Benjamin had another sleepy day. His counts continue to drop, and his ability to fight infection is waning. After he woke up, ate breakfast, and took his morning medicine, we did schoolwork for three hours straight. He was exhausted. He fell asleep with numbing cream on his legs while he was waiting for his fifth… Continue Reading Day 641/13

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 638/10

Benjamin’s tiredness continued today. He slept until 10am. Our nurse was wonderful and flexible and let him sleep, holding his morning medicine an hour to accommodate. It sounds minor, but not everyone would have done so, and I appreciated it. Benji’s numbers continue to move in a therapeutic direction: his platelets are suppressed back down… Continue Reading Day 638/10