Day 662/34

We. Are. HOME.  I hardly slept last night. I’m not sure why. Every creak of the door sounded more amplified, every beep more pronounced. I sat up to watch the screen at every blood pressure reading. I was unsettled. It was my sleeplessness that found me awake when our sweet night nurse drew Benjamin’s labs… Continue Reading Day 662/34

Day 658/30

It doesn’t look like we’ll be going home any time soon. Benji was pleased to wake up unhooked from his fluids again. He usually gets up to empty his bladder right away, especially after a night with no bathroom breaks. But this morning the urgency wasn’t there. I asked him if he needed to go,… Continue Reading Day 658/30

Day 650/22

So much information to process, constantly. So many opportunities to wander down dangerous roads, mentally. The rewards are great when the mind is quiet and presence comes easy. Benjamin and I tried to sleep as best we could, but last night’s dose of lasix woke us up hourly for urine collection. It was effective, however.… Continue Reading Day 650/22

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 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