Day 755/127

Benjamin’s procedures have all been completed safely. He slept comfortably through almost everything. Now, we wait, as we have done so many times before. I stayed awake through Benjamin’s first platelet transfusion at 2am, then we both slept as late as we possibly could. I peeked at his labs during shift change. They held steady with… Continue Reading Day 755/127

Day 749/121

Today was like one long roller coaster. My stomach hasn’t quite recovered. Things are quiet and peaceful now, and Benjamin is soundly sleeping. For that I am grateful. We woke up at 6am again this morning and Benjamin got straight into the tub, then back to bed for a couple of hours. The morning lab… Continue Reading Day 749/121

Day 743/115

Our path looks much more clear today. The National Institutes of Health considers Benjamin a viable candidate for their CAR-T clinical trial targeting the CD22 protein. It’s such a relief to write these words. I feel like I can exhale for a minute. Benjamin woke up at 4:30am in pain and needed a hot bath. The relief… Continue Reading Day 743/115

Day 629/1

Benjamin slept soundly. He received a platelet transfusion in the night, and another one when he woke up, elevating his platelet level to 47,000–just below the threshold required for his colonoscopy and endoscopy. The team was satisfied with this number, so we moved forward. Day One. Michael and Banyan arrived just before the doctors made… Continue Reading Day 629/1

Day 550

Today, July 4th, we rested, relaxed, feasted with family, enjoyed the water, and shot a few fireworks in the street as night fell. Tomorrow, July 5th, we return to All Children’s to begin Benjamin’s fourth 84 day cycle of long term maintenance. He’ll have his port accessed, his blood drawn, an appointment with the oncologist,… Continue Reading Day 550

Day 411

There was a lightning storm last night, and our power went out. As a result, our huge scaredy-dogs kept me awake much of the night, shaking at my side, needing reassuring. I canceled my morning bridge walk due to rain and sleep deprivation. I was grateful to have had what little rest I achieved. Banyan walked down… Continue Reading Day 411