Day 384

day 384

Benjamin stayed home from school today. He never reached fever status and I didn’t have to call the clinic, but he was still super congested and he just didn’t feel well. And he looked sick. His face was pale and he had dark red triangle patches under his eyes. He needed a day off. So we took a day off. And it was so nice.

Turns out, I needed the down time too. My throat started raging as the afternoon wore on. I am hopeful that I can fight this infection with my arsenal of tricks, so that we can all head north tomorrow night to visit my daddy. But we are open to making that a game time decision.

Benji and I played games, watched a movie, made a meal together, created art, exchanged riddles, and took a color walk, something we haven’t done in years. At one point, he shocked me with a memory. His face showed me that he shocked himself too. He remembered being really little, I’m guessing from his context clues a young two, and trying out one of his new words at the side of our bed. “Puke,” was the word, and he’d draw it out slowly…”peeeeeee-yuke.” He said he remembered standing near the side of my bed saying “puke,” over and over, and I said, “Come on sweetie, let’s go get you a diaper.”

I don’t know why some of the things that become imprinted in our brains decide to take residence there. Some of them are obvious, yet some are seemingly insignificant details that just seem to stick. I don’t remember the memory Benjamin conjured today. Perhaps he’d had had a tummy virus then, hence the new word, and feeling yucky today near mom and dad’s bed triggered the memory. I don’t know. But I was beaming at him with pride, and in awe. I am so relieved that a year of cell-destroying chemotherapy has spared his cognitive function. In fact, he’s as sharp as he’s ever been, if not sharper.

In between activities with Benjamin, this morning I enjoyed a conversation with a bestselling author. She was introduced to me by a dear mutual friend, and I am currently eight chapters in to her wonderful book, The 13th Gift. Our friend introduced us because he felt that she could help guide me as I germinate the seed this blog has planted. I know that when Benjamin was diagnosed, I was starving for two things: information that would help me gain control, and a place to put it all (hence, The Binder). I pieced together what I was looking for over many months, with help from many sources. I wonder now if I can transform what I’ve learned into one companion piece for a mother whose child has been recently diagnosed. Of course, we are very much still in this, and I’m not ready to go full force into any new project just yet. I doubt I will be for quite a while. I am just feeling a little pull. Hearing a little voice.

We set a date today for our private meeting with a few select folks at All Children’s. We have a couple of weeks to breathe first. I’m grateful it has been set, and I’ll be grateful when it’s behind us.

Finally, tonight, I can’t say enough about the value of a good and kind pharmacist. It’s a profession that kind of gets a bad reputation these days, with big pharmaceutical companies corrupting the market so frequently, and the public confusing the disciplines. I have a favorite pharmacist at All Children’s and a favorite pharmacist at my local drugstore, both with whom I’m on a first name basis. They go to bat for Benjamin often, with insurance companies, or calling other pharmacies, or doing the leg work of “prior auth” red tape for me. Today, I went to pick up Benjamin’s Leucovorin, which he has to take tomorrow at a precise time to provide a rescue in case of Methotrexate toxicity after yesterday’s lumbar puncture. My local pharmacy had no idea what I was talking about, even though the prescription was supposed to have been sent there yesterday. I kind of panicked. I told my local favorite that I’d call All Children’s first thing in the morning, and asked her to please to the same. We parted agreeing to check in with each other around 9 or 10 tomorrow. Instead, my phone rang at 8:30pm tonight. This angel didn’t stop making after hours phone calls until she had Benjamin’s prescription ready to fill. She didn’t have to do it. But she listened to the drive for healing that probably led her into the profession in the first place. I recognize it, and I am grateful.

There is no rasp in Benjamin’s breath when I listen to him sleeping at his door. I have hot tea, a warm bed, and a new chapter waiting for me.

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