Day 752/124

and everything seems to have gone terribly wrong that can but one breath at a time is an acceptable plan she tells herself and the air is still thereĀ  ~ani difranco   It seems that as soon as we have a moment to exhale, it’s time to take another deep breath. This morning Benjamin felt… Continue Reading Day 752/124

Day 750/122

The goal for the day was to help Benjamin feel comfortable. I believe we are getting there. As the day comes to a close, I’m grateful that he feels better now than he did this morning. I am hopeful we are entering a healing, peaceful weekend. The pattern of the last few days repeated itself,… Continue Reading Day 750/122

Day 721/93

Today was Benjamin Wilson Gilkey’s 9th birthday. There have been so many emotions flowing through this room today. I’m exhausted and I’m grateful. Next to me is a boy who feels much better than he did this morning. Better than he has in days. At midnight, as eight year old Benjamin was turning nine, he… Continue Reading Day 721/93

Day 719/91

Benji and I were up before shift change again. He was in great discomfort. He begged our night nurse not to draw morning labs–a daily procedure that has never bothered him–because he couldn’t stand the idea of saline flushes. He was so nauseous and in so much pain he couldn’t tolerate anything, no mention of… Continue Reading Day 719/91

Day 718/90

Benjamin and I slept well last night and were both awake at shift change. His numbers are holding steady. Saturday’s increase may have been sample bias, I don’t know; but since then we’ve seen the slow decline we’re used to from Inotuzumab. Each time I walk to the computer and look at the blasts category,… Continue Reading Day 718/90