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 753/125

It was still dark this morning when Benjamin woke up wincing. He said he’d had a bad dream. I asked him to tell me about it, he said he forgot, and went right back to sleep. I looked at the foggy sky, barely pink with the sunrise, and told myself if I could make out the Skyway,… Continue Reading Day 753/125

Day 748/120

Benjamin and I woke up during the morning blood draw. It was still dark. Our nurse had to do a cap change on Benjamin’s IV line because he got transfusions yesterday. The process is slightly more invasive than a normal draw; we both have to wear hats and masks, and we are a little out… Continue Reading Day 748/120

Day 747/119

We’re back on the seventh floor. It’s where we need to be right now. I’ve felt terrified, angry, guilty, relieved, and grateful today. Sitting here to write this feels exhausting, but these are just words. Benjamin has shown me what true resilience is. The sky was cotton candy pink this morning as we left for… Continue Reading Day 747/119

Day 746/118

This has been our longest stretch away from the hospital since October. It’s been sweet, nourishing, comforting, and necessary. And I am so ready for it to end. Benjamin needs treatment. He is in pain more frequently and for longer periods of time now, and it is all stemming from his spleen. Tonight he said… Continue Reading Day 746/118

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