Day 631/3


Our night nurse was wonderful. Perfectly stealthy, kind, gentle and more than competent. She drew labs at 6:30am, and the numbers came back during shift change. They made me a little nervous. Benji’s white blood cell count, which had been decreasing with his leukemia blasts, went up slightly. His blasts only decreased by a few percentage points. I want them gone.

Dr. Grana told me not to put too much weight on the blast percentage in the peripheral blood right now. Samples vary so much, and the number is most definitely heading in the right direction. She also reassured me on the white blood cell count, attributing it to the steroids.

Our daytime nurse didn’t quite make me feel as confident as her nighttime predecessor. She was sweet but quite stressed out, a floater from neurosurgery who was helping out the maximum capacity oncology unit today. Fortunately, Benjamin’s day was pretty straightforward. His only medicines were Dexamethasone, Allopurinol and Kytril. He had one blood draw in the afternoon. Aside from routine vitals, that was it.

Aunt Sarah came to visit today. She brought some super fun art and science projects to do with Benji. He was hungry for sushi and engaged in activity, so I ran out to grab his lunch. It was hard to leave but I pushed against the discomfort. It felt good to drive, good to get fresh air, good to buy Benji’s favorite bagels for a surprise breakfast tomorrow.

When I returned, Dr. Grana had received the results of the biopsies of Benjamin’s polyps. She said they were not malignant, and not premalignant. I felt my whole body relax. I was so relieved. Because of Benjamin’s CMMRD diagnosis, the polyps will need to be closely monitored for changes, so the plan is to check them again in three months or so, when his treatment schedule allows.

Today was the first time I really felt the blessing in having unearthed this genetic predisposition. It is highly possible that through increased surveillance, we could prevent a cancerous situation from escalating in Benji’s colon. It felt pretty big. It felt, at least for today, manageable. For now we can focus only on leukemia again, and put all of our efforts into this new treatment plan.

2 thoughts on “Day 631/3

  1. I breathed a sigh of relief with you to hear the good news about the polyps. Whew!

    A good nurse or not so great nurse can really affect the whole mood of the room. Hoping you get scheduled with the best!!

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