Day 669/41


Michael woke us all up this morning to watch the sun rise over the Atlantic Ocean. I’m so thankful he did. I have tried for 669 days to put into words what this experience feels like. I don’t have the words to describe how much I wanted that sunrise to last.

We loaded up Benjamin’s camper and drove westward toward home. I gave Benji his final dose of Dasatanib with lunch. It was the last dose of oral chemo I will give him to treat his leukemia. Most moms in my moms’ group post celebratory pictures of this moment, with their kids holding posters or wearing t-shirts that say “LAST 6MP” or “NO MO CHEMO.” This dose did not feel celebratory at all. I wish I was still giving him 6MP each night. Something that once seemed so daunting and scary now seems like a dream, one from which you’ve just awoken and are trying desperately to return to, even though you know that never works.

On the way home, Benji thoughtfully said he’d like his peripheral line to be placed on his right arm, because his left arm hurts all of a sudden. Michael and I looked at each other, wondering if it was bone pain. I can’t even know what that would feel like. His bruises have increased significantly. His leukemia is spreading and tomorrow’s admission can’t come soon enough for me, as nervous as I am of what it might bring, and as much as I wanted this day–this weekend–to last.

We pulled in just in time to get the boys cleaned up and haphazardly costumed for two respective Halloween parties they wanted to attend. They were so happy to have a night with their friends before returning to school and to hospital tomorrow. Kathy and Gana brought us pizzas and saw the boys off, then sat with us to eat, catch up, and talk about Benji’s upcoming phase of treatment. In going over things with them, Michael and I were able to articulate some apprehension about the protocols in the hospital, should a cytokine release happen immediately, or on night shift. It prompted a quick email to Dr. Oshrine. I was pleased–but not surprised–to see a reply come in just an hour or so later. There are management guidelines for every possible reaction to the Blinatumomab, and everyone on the 7th floor is on board. It gave me a bit of relief.

So, tomorrow we return to the hospital for at least 28 days. Benji will be admitted in the afternoon. I don’t believe the Blinatumomab will begin until Wednesday. Michael asked me if I was emotionally ready; I think I answered, not at all. Benji was down the street at a Halloween party with his buddies, riding on hay rides and trick or treating and playing at full speed. It just doesn’t make sense. But that was the moment we were in when Michael asked the question. In the moments of tomorrow and the days that follow, I will be ready. I know Benji will be ready. He doesn’t complain. He just does what he needs to do. I follow his lead.

Tomorrow we begin a new path. We will put our entire faith in this new medicine, and in the body it will help to heal.

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