Day 767/139

Benjamin continues to do his brave work, and we continue to make the best decisions we can for him. This has always been true, of course, but we are accustomed to being informed by evidence. Now we are being informed by instinct and love alone. I was woken in the middle of the night when… Continue Reading Day 767/139

Day 686/58

Benji slept for twelve hours last night. I could tell it would be a long rest when he fell asleep. He needed it. The round of chemotherapy Benji finished yesterday is working quickly to suppress his marrow. All of his counts are dropping. His white blood cell count this morning was just over a thousand,… Continue Reading Day 686/58

Day 648/20

I woke up to a nurse practitioner’s voice saying that Benji would need a red blood transfusion today. He was still sleeping, she was examining him. I opened my eyes and nodded. “Hemoglobin?” I asked. 6.8. We were expecting this. Benji’s other lab results were great today. His platelets are at 28,000, his sodium is… Continue Reading Day 648/20

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 48

Week 2 of Consolidation. 3 trips over the bridge down, 1 to go. Benjamin’s clinic visit today was relatively uneventful (as uneventful as an appointment to inject chemotherapy into your child’s body can be). We didn’t even meet with a physician or PA today–a first, though the nurse did consult them to make sure a blood draw… Continue Reading Day 48

Day 47

Tuesday mornings are bridge walking mornings. I was grateful for the sunrise, the early start, and the clarity it provided. I felt prepared for the day as Benjamin and I sent Michael off to work, Banyan off to school, and headed north for our clinic visit. As we waited for our meeting with the oncologist and… Continue Reading Day 47