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 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 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 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 714/86

Benjamin’s fever took a while to come down last night. He was burning up. When it finally came down we were able to catch a few hours of sleep. His port culture remains negative. Everyone agreed that the fever was a result of the Inotuzumab. I heard that the other child who received a dose… Continue Reading Day 714/86

Day 713/85

Benjamin has received his second dose of Inotuzumab, and everything went smoothly. The morning report revealed more of the same: a slow and steady decline of leukemia cells. Benji’s total white cell count is still decreasing, and his platelets continue to disappear. He would need a transfusion today. His tummy is still causing him pretty… Continue Reading Day 713/85