Day 208

Benjamin slept soundly all night. He didn’t wake from hunger or night sweats or bad dreams. I, on the other hand, couldn’t sleep.

When I returned from my sunrise bridge walk, Benjamin woke up. He had a sore throat and a cough. We laid low throughout the morning, making several breakfasts. As the day progressed, Benjamin started to feel better. I was thrilled when Michael surprised us with twenty minutes between meetings for lunch at home. I took the opportunity for a power nap that changed my whole day.

In the afternoon, Benjamin felt well enough to play outside with friends at a healthy distance. I worked a little while, then took some time to sort through The Binder. I’ve been wanting to put all of Benjamin’s blood count numbers together in a spreadsheet so I could see his trends through the different phases of treatment. There is much tweaking left to be done on the graphs, but it was gratifying to begin this project.

Going through The Binder also reminded me that we never got an answer on some genetic testing Dr. Oshrine had ordered back in February. I called the clinic, and the results had just come back a couple of weeks ago. All tests were negative, showing no abnormalities. This is a relief, but it doesn’t give our oncologists any clues as to the origin of Benji’s leukemia. The origin wouldn’t change his course of treatment. But it might help their research. It’s  likely we’ll never know.

My stepsister Alaire came to visit on her way back to Alabama from a south Florida wedding. Benji adores her. We missed our annual January visit up north because of Benji’s diagnosis, so her visit tonight was a special treat.

We ate dinner, and Benji enjoyed three helpings of chicken. We are careful not to make him feel self-conscious about his need to eat, or about his puffy face and belly; we just insist on healthy choices. He knows his steroid-induced appetite is out of the ordinary.  Perhaps that’s why, when he was showing Alaire photos on my phone after dinner, he looked for what he called the “most disgusting” picture of himself–and scrolled back to a shot of him at his very puffiest, in February, right after taking 28 days of steroids during Induction.

When I looked at the picture, I felt so sad. It was a picture of Benjamin on the beach with his brother and his friend, and he was so happy. He looked absolutely beautiful. As we snuggled up in bed tonight, I reminded him of that day, and of how good he’d felt to be there. I want him to remember the happiness. I told him that puffiness is temporary, and while it may be uncomfortable, it’s another of his many signs of bravery. This kid has absolutely nothing to be ashamed of.

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