Day 702/74


Benjamin had another great day today. We deeply missed the other half of our foursome, but we enjoyed our hospital family, and soaked up a bit of Saturday sunshine in the process.

Michael and Banyan stayed in Sarasota today. Banyan woke up with swollen lymph nodes and a slight cough. No fever, no cold, but we can’t take any chances. The boys were both understandably upset. As much as we enjoy our weekends together, we didn’t really have a choice. I don’t know if a fever would preclude Benji from proceeding with his procedure on Monday.

For the second day in a row, I waited to look at Benji’s lab numbers until much of the morning had passed. He needed another platelet transfusion today. His white blood cell and leukemia counts continue to rise. Incredibly, it doesn’t seem to dampen the way he feels, or the strength of his spirit.

We met another doctor at rounds today. He’s the new director of the Cancer and Blood Disorders Institute here at All Children’s. I liked him immediately. He told me that the rising white count and corresponding blast number, in his estimation, was not endangering Benjamin in any way. The numbers would have to get extremely high to put his organs in peril. He agreed wholeheartedly with the advice Dr. Oshrine had given to look at the boy, not at the screen. Still, he seemed surprised by the level of energy this patient exhibited. He had never met Benjamin before. I caught a glimpse of awe. It seems probable now that we could make it to apheresis, and quite possibly to Inotuzumab, without intervention.

One of Benji’s favorite nurses offered to walk downstairs with us so Benji could grab a bite to eat. Benjamin was proud to walk with his buddy, unhooked from his IV pole. We sat outside. It was unbelievably gorgeous. Benji chose a spot right in the sunshine, which was a tonic for both of us. We talked about what we might do if we were home today. I felt a lump in my throat I’m sure he shared, but it was important that we hold these visions, that we keep that reality close.

If we were home today, we would be at the beach, paddling, fishing, braving the chilly water. We would come home and get cleaned up, then Michael and the boys would watch football and I would catch the annual performance of Handel’s Messiah. Afterward we’d probably meet up with our family downtown to watch the Christmas parade. We’d return to the house and be greeted by the lights on our tree through the window.

We sat outside of the cafeteria and felt the sun on our skin. The bells at the church across the street started chiming, playing a medley of carols. We watched football, we FaceTimed with Michael and Banyan, we looked at pictures of the parade on the computer. Snowflakes hang from our window, and we could see the lights twinkling outside. It’s all okay. This is where we need to be.

8 thoughts on “Day 702/74

  1. Benji is clearly very special – i would assume it has a lot to do with his special parents. Today is a long day for me but i will live it easier thinking of what every day is like for Benji. I am still praying.

  2. I\’m so proud of your new approach to waiting on looking at the numbers. This is so wise and obviously serving you well. <3

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