Day 216

Benjamin woke up in a fantastic mood. He was calm, sweet, and optimistic. He was not upset about another trip to the hospital. His tummy was tender, so I gave him Kytril. He still has the Scopolomine patch on as well. He ate a full breakfast with no trouble. It was a perfectly clear blue morning as we traveled over the Skyway.

Today’s visit was a quick one. Benjamin’s nurse and I talked about yesterday’s nausea, and I asked her to check his dressing. We reminded her about the freshly drawn saline flushes and he used his oils very effectively. His line was cleared and his Cytarabine was hung to drip over fifteen minutes. He used the oils again at the end, when the line was flushed again and heparin was inserted to prevent clotting. Dr. Grana came in to see us briefly, and we went over tomorrow’s orders. It was time to go home.

I did learn something rather interesting in today’s brief encounter. There was a physician shadowing our nurse today. She was a doctor in training to become a specialist. When she and our nurse were leaving, Benji thanked our nurse, and said “Nice to meet you” to the trainee. She said, “Actually, we’ve met before. I sat in with Dr. Moore on one of your LP’s (lumbar punctures).” I was immediately attentive. She said it was a month or so ago. The lumbar puncture that left Benji in such debilitating pain was more like three months ago. I asked if he was punctured twice in the procedure she witnessed. “No,” she said, “but I think it may have been the one right after that. Usually we (trainees) do the punctures. I remember Dr. Moore saying that this case was special, and he’d do it himself.”

This was enlightening information. I will admit that my immediate reaction was that I’d been deceived. I have developed trust in this handful of people who enter my son’s body with needles and syringes. I like to look into the eyes of the person doing the procedure and say thank you before it is done. I felt betrayed that there were people involved that I hadn’t met. It’s not about you. Once I released this ego-driven reaction, I had a bit more of a pragmatic realization that this is how doctors learn. Of course a physician in training would learn to remove spinal fluid and insert chemotherapy by practicing it under the supervision of a more experienced doctor. I expect as much is written in the fine print of the consent forms I sign each time Benji goes into the operating room. Finally, the core reaction I was left with was gratitude. Dr. Moore listened to me, truly. When Benji had such a horrible reaction back in May, he listened, he took ownership, and invested himself personally in the situation. Benji hasn’t had a painful LP since. When I told Michael about the revelation when I came home, gratitude for Dr. Moore was his takeaway as well. It feels good to be grateful.

By the time we got to the car to head home today, Benjamin felt nauseous. He used his oils, and they worked beautifully. He took a nice long rest. I wasn’t sure if we’d be joining Michael and our office team for a birthday lunch we’d been invited to, but when Benji woke up he was willing to give it a try. By the time we got to the office, his appetite had returned and he was very happy to be there with everyone. He enjoyed an entire meatball sub, and didn’t feel sick again for the rest of the day.

This afternoon, Benji was gifted a fresh loaf of Hawaiian bread from one of our favorite people. When we came home, he wanted to work in the kitchen. Quite by accident, he was looking up “fun and exciting things to do in the kitchen” and came across this recipe. He was so excited to make a loaf, all by himself. It’s cooling now, waiting for him to enjoy for breakfast in the morning.

Tomorrow will be Benji’s last day at All Children’s this week. He’ll receive a fourth dose of Cytarabine. He’ll get a complete blood count, so we can see where his numbers are as we head into the weekend. And he’ll be deaccessed to enjoy a few days of freedom before another four day stint next week. When we come home, we’ll enjoy our last evening as a trio; Michael leaves Friday morning to go and retrieve Banyan from the north woods of Wisconsin. I can’t wait to see his face again. Both of my sons have made me so very proud this summer.

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