Day 759/131

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 short, staccato, labored. He has a fever and his resting heart rate is entirely too high. He got a chest x-ray just before midnight, and… Continue Reading Day 759/131

Day 731/103

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. His appetite continues to increase and he is slowly gaining weight again. His lab numbers are holding very steady, including his blast percentage (12), and… Continue Reading Day 731/103

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