Day 739/111

Benji is sleeping next to me. He is pleasantly exhausted from a long, busy day that went very well. Benji was a little nervous this morning and his tummy hurt. He didn’t want any breakfast. We gave him some Kytril just before we put the numbing cream on his chest. We all took Banyan to… Continue Reading Day 739/111

Day 716/88

I didn’t want to look at this morning’s numbers. I tried so hard last night to focus on Benji’s slow and steadily declining leukemia blasts, but this morning I was afraid of what I would see. I listened to the whispers of shift change. I didn’t get up. I just asked, “Platelets today?” They said… Continue Reading Day 716/88

Day 714/86

Benjamin’s fever took a while to come down last night. He was burning up. When it finally came down we were able to catch a few hours of sleep. His port culture remains negative. Everyone agreed that the fever was a result of the Inotuzumab. I heard that the other child who received a dose… Continue Reading Day 714/86

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 503

Today felt a lot more manageable than yesterday did. I spoke with the clinic nurse this morning about Benjamin’s toe, and she asked a lot of thoughtful questions. She feels we are taking the proper precautions and doesn’t think antibiotics are necessary. I agree. It was nice to get the validation though. And Benji’s steroid “afterglow” is… Continue Reading Day 503