Day 686/58


Benji slept for twelve hours last night. I could tell it would be a long rest when he fell asleep. He needed it.

The round of chemotherapy Benji finished yesterday is working quickly to suppress his marrow. All of his counts are dropping. His white blood cell count this morning was just over a thousand, with 12% of those cells being leukemia blasts. His platelets and his hemoglobin were both the lowest they’ve ever been this morning, at 3,000 and 5.6 respectively. He is now severely neutropenic with an absolute neutrophil count (ANC) of 500. These numbers explain his lethargy and general malaise when he woke up today. He simply did not feel well.

Once our nurse began transfusing a hefty bag of packed red blood cells, Benji started to feel much better. We played cards with the sweet volunteer that visits each Thursday. He enjoyed his new video game system. When the blood was finished transfusing, we got busy with schoolwork. He had no appetite for much of the day, but he was calm and comfortable.

Benjamin’s trajectory continued to improve into the afternoon and evening. He took a full lap around the floor when Michael arrived this afternoon. He was feeling so well that I decided to take a quick walk around the block to feel November on my skin. When I returned, Kathy, Gana and Banyan were right behind me with a wagon full of food, which Benji ate with gusto. His color improved throughout the day as well. He is still pale and covered in bruises and petichiae, but his sparkle is bright and his energy is strong.

Benji’s orders for this round of management chemo showed Neupogen on the schedule beginning tonight. Neupogen is a colony stimulating factor, meaning it helps speed up the growth of a group of cells–in this case, neutrophils. The Etoposide and Cyclophosphamide were designed to suppress Benji’s marrow for two to three weeks. He isn’t profoundly neutropenic yet, but his counts are dropping, and the Neupogen will theoretically prevent a stretch of neutropenia that could invite infection. Infection is the enemy, after all. It could really steer our northbound ship off course.

Still, I questioned the decision in rounds this morning. Neupogen is so counterintuitive to me. We’ve worked for so long now to get his white blood cell counts down, and now the plan is to stimulate them right back up? I get it, but it feels unsettling. The team checked with Dr. Oshrine to make sure this was what he intended for Benjamin, and it was. Michael reminded me to check and make sure there was no conflict with Benji’s CMMRD, and there is not (at least in published study). We trust our team. We trust that the right colony of white cells will be stimulated.

I sent my daily email to CHOP today and received an email back with the contact information for the nurse navigator there. She will be calling me tomorrow “regarding where we are with determining eligibility from a clinical standpoint.” (Gulp.) The tone of the rest of the email was promising, using words like when and not if in conjunction with travel plans.

I have to be patient. The chemotherapy vs. Neupogen balance is a good example of how tricky this timing puzzle is. Benji needs to get to Philadelphia without a high infection risk, but with enough leukemia to harvest active T-cells. I have to trust that the timing of all of these complex pieces will conspire to be absolutely optimal for Benjamin’s healing. I can trust, but I can also play a part. Human connection goes a long way.

6 thoughts on “Day 686/58

  1. The waiting is always the hardest part, but, it sounds like everything is moving in the right direction and your path to Philadelphia is definitely becoming more clear. You’ll be there before you know it! xoxo

  2. You’re doing such a stupendous job keeping all the gears in motion. Visualizing your path to Philadelphia. Love you!

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