Day 756/128

The construction crew of the new hospital research building worked all night long last night, pouring the concrete slab on the top floor. Every time Benjamin woke up to urinate, or something beeped, or someone came in to check vitals, I’d glance outside and see men in hardhats dangling from harnesses or climbing up ladders,… Continue Reading Day 756/128

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 752/124

and everything seems to have gone terribly wrong that can but one breath at a time is an acceptable plan she tells herself and the air is still there  ~ani difranco   It seems that as soon as we have a moment to exhale, it’s time to take another deep breath. This morning Benjamin felt… Continue Reading Day 752/124

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 739/111

Benji is sleeping next to me. He is pleasantly exhausted from a long, busy day that went very well. Benji was a little nervous this morning and his tummy hurt. He didn’t want any breakfast. We gave him some Kytril just before we put the numbing cream on his chest. We all took Banyan to… Continue Reading Day 739/111

Day 737/109

It sure was nice to make breakfast in my own kitchen this morning. Benjamin woke up feeling strong. He was hungry and ready for action. He was excited to eat, but midway through his meal, his stomach pain brought him to tears. Michael and I thought we had noticed a pattern forming; the same thing happened… Continue Reading Day 737/109