Day 728/100

We received the results of Benjamin’s bone marrow aspirate today. We don’t have the complete analysis, and a clear path has not yet been laid in front of us. But the news we learned feels like good news, and until we have more information, we choose to accept this as a positive first step. I… Continue Reading Day 728/100

Day 694/66

We had a rough night up here on 7 South. Benjamin woke up many times coughing, and with each episode he cried in pain. He couldn’t pinpoint where the pain was, just that drinking cool water helped. His sweat filled the bed and his face looked pale. This morning the attending doctor said his lungs… Continue Reading Day 694/66

Day 690/62

Benji asked for pain medication last night. His side started hurting too badly to sleep. So for the first time in a week, he took a low dose of oral morphine for his spleen. I turned on the television to distract him until it kicked in. The Wizard of Oz was on. The cowardly lion… Continue Reading Day 690/62

Day 639/11

Benjamin slept quite late this morning. I was relieved when he woke up, went to the bathroom, and balanced his input and output. He won’t need lasix tonight. He is still puffy and his weight is still fluctuating but I’m confident Dexamethasone is to blame, and the nurses seem to agree. For the first hour… Continue Reading Day 639/11

Day 276

The morning was so uplifting. The afternoon was so dizzying. Now, as I settle in for another night up here on the seventh floor, I am going inward. I am trying to regroup. We have work to do. We slept well last night, and woke up to happy news. Benji’s Methotrexate levels decreased from 0.22… Continue Reading Day 276

Day 227

Benji’s counts continue to drop. There are more bruises today, and he’s still quite pale, but he feels terrific. He played with friends nearly all morning. He splashed and swam at full speed in his Grammy’s pool when we went to have dinner with Michael’s mother and sister. He and Banyan are playing and laughing… Continue Reading Day 227