Day 685/57


The last day of Benjamin’s intermediate level chemotherapy has come and gone. Now, we wait.

This morning’s lab report showed a continued trend in the right direction. Benji’s white blood cell count was about 2450, and 27% of those cells were leukemia blasts. Such a palatable number compared to last week’s averages. His absolute neutrophil count is beginning to drop; he’s now mildly neutropenic at 1220. His platelets were at 7,000 this morning, proving the theory that his spleen is not allowing them to go where they need to go. We did not transfuse today. His body is covered in tiny red petichiae. One nurse practitioner called him a constellation. It was an appropriate metaphor.

Benji’s pain came and went today, but it was mild and manageable. We left only to take half a lap around the floor before his spleen brought him back to the room. He did spend most of the day on the couch, rather than the bed, working on a project for school about endangered species. It felt good to organize an academic timeline. We can easily get caught up over the next few days while we wait for our Philadelphia marching orders.

The final dose of Benji’s Etoposide was uneventful. Before his Cyclophosphamide was hung, Benji started to feel sick. He wanted Benadryl, but he didn’t want to fall asleep; Michael was here this afternoon, and Lilye came down today to attend a seminar for college students on careers in Child Life. Benji didn’t want to miss any time with either of them. We compromised on a half dose, and it worked beautifully.

Child Life is a wonderful cog in the hospital machine. Today they followed up on Benji’s first culinary episode with a plan for another. He wrote a recipe for stuffed peppers and gave them a shopping list. He’ll be cooking again in no time.

The Child Life folks also want to make sure Benji is emotionally sound with his current medical situation. One of their team members asked him today if he needed to talk to anyone, to ask any questions or process his feelings. He shot me a look as if the woman had sprouted two heads. I thanked her, and told her that we are open and honest, and that Benji is really great at asking questions when he needs to. He understands everything that is happening in his body remarkably well.

Benji isn’t the only one being approached about his feelings. People are constantly stopping me in the halls to ask how I’m really doing. So many sympathetic looks, so many open arms. I think people expect me to need to fall apart. I appreciate the kindness, truly, but that is the last thing I need right now. I am grateful that Philadelphia is in our future, and the treatment that will take place there has my singular focus. I am refusing to consider any other possibility than a smooth transfer and a successful infusion. There is zero point in doing otherwise.

So now, we wait.

7 thoughts on “Day 685/57

  1. The need to be proactive and have a plan and manage what we can far outweighs any sort of need to fall apart. Sending love and hope from Texas.
    –Alex Pomero

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