Day 768/140

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” ~Thich Nhat Hanh Benjamin had such a beautiful window of clarity before we went to sleep last night that Michael and I decided in whispers to approach… Continue Reading Day 768/140

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 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 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 734/106

We are still waiting for some critical information, but we also have some answers. A path is forming and it includes time at home. The biggest blessing that has come from today is the knowledge that Benjamin’s cells have enough of the CD22 protein to pursue enrollment in a clinical trial. Now we just need… Continue Reading Day 734/106

Day 692/64

Benjamin woke up early this morning with a high fever and tummy pain. He vomited during shift change a few minutes later. It was a strange, dark, pungent liquid. There were many hands here to keep him as comfortable as possible. He begged for a bath, so the nurses unhooked him from his fluids. I… Continue Reading Day 692/64