Rhythm. A word and an idea I’ve always loved. Tonight, our rhythms feel very off. I’m listening to Benjamin breathe through an oxygen mask while he sleeps. His breaths are… Continue Reading Day 759/131
Day 759/131
on Tag: transfusion
on Day 738/110
on On the coldest morning of the year, by far, Benjamin begged his daddy to take him fishing. So that’s what they did. We layered him up nice and snug, I kissed… Continue Reading Day 738/110
Day 731/103
on Benjamin began this New Year with a strong and happy day. He got plenty of sleep last night. He only complained of tummy pain a couple of times, and mildly.… Continue Reading Day 731/103
Day 729/101
on We are still waiting for the final word from CHOP. I checked my email about a hundred thousand times today. Now that the work week has passed, we are prepared… Continue Reading Day 729/101
Day 721/93
on 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… Continue Reading Day 721/93
Day 719/91
on 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… Continue Reading Day 719/91