Day 293

Benji will be entering long term maintenance on Tuesday. I need to just let that sink in for a moment. Regardless of how he got here,¬†Benji’s¬†frontline treatment is over. No more long days in the Infusion Center. No more shots in his legs. No more bright red or neon green liquid flowing through his veins.… Continue Reading Day 293

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 284

Benji’s little wet cough persisted in the night. He complied with my requests to inhale deeply and get his coughs out, and by the morning his chest sounded completely clear, according to his nurses’ stethoscopes. It was another night with little sleep; Benji had the cough, a fever that required Tylenol, and twice, he woke… Continue Reading Day 284

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

Day 281

We had a very sleepy morning here on the seventh floor. We both slept well last night but woke up frequently. Our night nurse was less experienced than her colleagues, and Benji’s morning blood draw took longer than usual. By the time we woke up for the day and completed Benji’s skin, mouth, and eye… Continue Reading Day 281

Day 277

We slept well last night. For the first time in many days, Benji needed no oxygen or Tylenol during his sleeping hours. Sarah and I took this as a very good sign. When Benji woke up and got out of bed for his morning bath, it was clear how much pain he is really in.… Continue Reading Day 277