Day 648/20


I woke up to a nurse practitioner’s voice saying that Benji would need a red blood transfusion today. He was still sleeping, she was examining him. I opened my eyes and nodded. “Hemoglobin?” I asked. 6.8. We were expecting this.

Benji’s other lab results were great today. His platelets are at 28,000, his sodium is still slowly increasing, and his uric acid didn’t spike after his Allopurinol was discontinued again yesterday. His absolute neutrophil count (ANC), which was a hair away from profound neutropenia yesterday, actually climbed a little to 320. I don’t expect this to continue, but it was still nice to see.

Benji and I enjoyed a peaceful morning on the seventh floor. We eased into our day, walking the halls and saving our schoolwork for the afternoon. My neuropathy concerns have abated. I think Benji’s foot was simply asleep this weekend. He has shown no signs of floppiness, or what Dr. Moore describes as “foot drop.”

We were the recipients of much kindness today. Our dear friend paid us a visit and decorated Benji’s curls with temporary hair paint. Another friend brought us balloons and tea. We received two sweet pieces of mail. A second grade class at Southside sent Benji a video of all of them dancing with signs they’d made for him. And in the early evening, just after Michael arrived, Benji’s teacher made the trip over the Skyway.

Benji’s blood transfusion began after lunch. He received 600 mL of packed red blood cells. It is always so strange to watch blood flowing into his body. Platelets don’t elicit same visceral response. I’m so grateful for the many, many people who have donated blood. I thought about the Erwinaze shortage, and how blood donation is kind of its polar opposite. They are both life saving elements for cancer patients, yes; but one costs an exorbitant amount, and its availability seems to be fueled by human greed. The other is free, and is availability is fueled by human kindness.

Benji can’t leave the room while he’s getting blood products, so our decision to do schoolwork in the afternoon was a good one. He accomplished quite a lot before his teacher arrived. It was so nice to see her. She brought letters and cards and gifts and kind words along with a special tablet for Benji’s schoolwork. She showed him how to use it and reassured me that he wasn’t behind his peers at all. We brainstormed several ways to keep Benjamin connected to his crew. I think we are both looking forward to our school time tomorrow.

Michael stayed with us until Benji’s bath time, then he went to home retrieve Banyan from Kathy and Gana. Once Benji was clean and dressed in and back in bed, we made tea, read two chapters, and I kissed him goodnight. We have our little rituals up here. We didn’t choose this, but we can make it comfortable. We can make it home for as long as we need to.

3 thoughts on “Day 648/20

  1. So happy for you that you were able to get Mrs. L. She will go above and beyond and isn’t technology a great thing! It will keep him so linked to the class.

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