Day 307

This was an emotionally intense day from start to finish. Benjamin was out of sorts when he woke up, and he said his tummy hurt. I noticed sweat on his upper lip and I took his blood pressure–all was well. My instincts told me that he just went to bed too late last night, and was probably… Continue Reading Day 307

Day 287

According to our night nurse, Benji “slept through the night.” That’s not quite accurate, but we definitely got more sleep than we have in many days. It was like a delicious sleep appetizer. I woke up wanting more. I walked groggily to the community kitchenette before sunrise to get Benji some ice, and another mom… Continue Reading Day 287

Day 286

Benji’s lips hurt again last night, and he just couldn’t leave them alone. We didn’t get much sleep up here on the seventh floor. Sarah spent the night with us while her kids stayed with our dad (Paw Paw) in a hotel down the road. I was glad to have her here. The morning rounds… Continue Reading Day 286

Day 285

Benjamin is no longer in isolation. He has been fever free for well over 24 hours, and his latest swab came back negative for rhinovirus–he doesn’t even have a common cold. This news brought a light and lively mood to morning rounds. Benji’s creatinine level continues to decline; today it was 0.75. His kidneys have… Continue Reading Day 285

Day 283

“Mucosal desquamation.” That’s the name for what is happening inside Benjamin’s body due to Methotrexate-induced Stevens Johnson Syndrome. His lips, mouth, tongue, throat and belly are all sloughing internally and he is working hard to rid his body of its former lining. It’s making him very uncomfortable, but we are using his outer skin as… Continue Reading Day 283