Day 717/89

Today was a very good day. It didn’t start that way. We were up before 5am with Benjamin in great abdominal pain. He asked for heat packs and cold packs and tried to get comfortable, but couldn’t. The episode resulted in vomiting before sunrise. We finally got back to sleep, and I slept right through… Continue Reading Day 717/89

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 710/82

It appears as though yesterday’s platelet count was a fluke. Today, the number was back down to 2,000. All day yesterday I tried to shush the voice in my head that told me this was probably the case–how could Benjamin’s platelets be 19,000 when he scratches and petichiae immediately follow?–but I wanted to believe it… Continue Reading Day 710/82

Day 708/80

There were a lot of positive things about today that I’d like to focus on. Right now I’m finding it difficult. I’m grateful for this space in which to sort it out. Benjamin is sleeping soundly now, but only after experiencing intense pain in his spleen tonight that required morphine. It hasn’t caused him this… Continue Reading Day 708/80

Day 707/79

Last night was a rough one. Benjamin woke up several times during our short sleep, unable to find comfort. His spleen hurt worse than it has in weeks. At first I wondered if this was a good sign, maybe some proof that his blood is trying to filter dying leukemia cells. Then my optimism turned… Continue Reading Day 707/79

Day 273

It was another rough night and another trying day. I am trying to be grateful for the steps Benji has made toward healing, and appreciate the slow wisdom with which his body is working. But it is honestly becoming hard not to worry. Benji slept with oxygen tubes most of the night, following his crazy… Continue Reading Day 273