Day 616


Sometimes people just wake up on the wrong side of the bed. Today, it was Benjamin. As with everything “off,” I wondered if it was cancer-related–or if it just was. Is his body detoxifying and making him feel extra crappy? Is he more tired than usual? Is he in pain? Or is he just an eight-year-old who has been plucked from sleep to go and sit in a classroom all day? I don’t know. But at day’s end, he remembered his morning grumpiness, and of his own volition, he apologized so sincerely. His heart holds so many big things.

I dropped the boys off at school, and included a run-down of the latest events in my morning conversation with Benjamin’s teacher. She was totally accommodating about the three unexpected absences this week and next. He’ll be able to make up testing online, and not miss a beat with the classroom assignments. I love our school family.

I worked as much as I could today. I also fielded a few important calls and emails to further the process of screening, for all of us. We received a rather extensive medical history questionnaire that Michael and I will complete before our initial appointment next week, with help from our families. And I got a call from Toronto, from the office of the physician we found who specializes in CMMRD, to make sure I understood every page of the thick stack of consent forms we received. They were very thorough. We will turn those in to Dr. Oshrine on Monday, and he will send them northward. In turn, our team will receive collection vials to fill with blood samples and send back to Canada. Then Benjamin’s blood, DNA, tissue and genetics, along with ours, will be added to the only consortium that exists in the world on this genetic disorder. It will be studied and analyzed and preserved for future clinical trials. It’s kind of amazing, really, and I feel grateful to have found this practice.

After school, homework, and guitar lessons, I left the boys with Michael to attend an open house at Banyan’s middle school. I was at the hospital last year with Benjamin and couldn’t attend this event, so I was grateful to be there. It was an interesting and satisfying experience to walk through our older son’s day. He is juggling so many things at this place, and learning so many lessons. It can be painful to watch sometimes. But ultimately, he always finds a way to infuse joy into this house, into this world. His light shines so brightly and it is my fervent hope that it always will. His is the only piece of this crazy genetic puzzle for which I have no answer yet. We are still waiting for insurance authorization to be able to proceed with his screening. I’m ready for that to happen, and ready to see clear and normal results.

Benjamin has not had chemotherapy in nine days. He hasn’t had steroids in four. His cells are in recovery mode, a rest they clearly needed; but I feel myself inching toward readiness for the chemo to resume. Veering off course is mentally disconcerting, no matter the reason. We’ll set our sights on Monday. In the meantime, Friday approaches. We are all grateful and ready for the weekend.

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