Day 769/141

Since Benjamin’s diagnosis, we have asked for guidance to make decisions for his highest good. Today we were guided in a direction we did not expect, but one that could not have been more clear. We are staying on the seventh floor. Last night, Benjamin had a high fever and rapid pulse, and he was… Continue Reading Day 769/141

Day 761/133

We are settled into our new room on the fifth floor, the Pediatric Intensive Care Unit. It was scary to come here. But this is where we needed to be tonight, and after one of the longest days in recorded history, I feel like I can finally take a breath. Benjamin and I got very… Continue Reading Day 761/133

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 711/83

Hope is such a strange and morphing creature. This morning, the fog was so thick outside our window that it masked the world below. Nothing else was visible. With the ethereal backdrop and the paper snowflakes hanging from our ceiling it felt like a true winter dawn in a much more northern place. When I… Continue Reading Day 711/83