Day 760/132

“Stand up straight and realize who you are, that you tower over your circumstances. You are a child of God. Stand up straight.” ~Maya Angelou These words saved me today. When I felt myself start to crumble, instead I stood a little straighter. Now is not the time. There is work to be done. Benjamin’s… Continue Reading Day 760/132

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 742/114

Our intention was unmistakable. A clear path toward Benjamin’s perfect healing. Today we heard the words “no clear path,” and “imperfect options.” I realized today that we aren’t waiting for a path to appear before us. We are already on it. With every decision, every appointment, every blood draw, every heat pack, every vomit and every bath in the… Continue Reading Day 742/114

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

Day 735/107

We are home. Everything feels pretty overwhelming right now. So many emotions today and so much uncertainty ahead. Home is the word and the feeling and the place I am grateful to return to. When I saw Benjamin’s lab numbers this morning I wasn’t sure we’d be discharged. His white cell count and number of… Continue Reading Day 735/107