When I was 8 years old, my sister had cancer.

“This is the kind of thing that could be in my biography: When I was 8 years old, my sister had cancer.”

I guess we are still struggling, all of us, but this is the way Quinn expressed it. It’s big, what is happening here. And even though we have gotten used to some aspects of it, we still are overwhelmed by the enormity of it, and by the fact that its course seems to lead as far as the eye can see. If you are 8 years old and hear that the treatment for your sister’s cancer is going to last more than 2 years, I guess that must seem like forever. How can he imagine this being over when he is 10 ½? He can hardly project himself to the end of the school year in a few weeks, or comprehend the stretch of time until his next birthday in October.

I wish he could tell me what that chapter of his biography would say. What details he would include. What themes he would elaborate. Reading it would reveal so much about how he is feeling.

What I know is that he’s weary of the whole thing. He misses playdates at our house and the surety of knowing I will be the one taking him to school and picking him up. He misses some of the structure and rules that often fall by the wayside these days, when they are meant to scaffold his day-to-day life.

I think I know how he feels. I’ve been thinking about why I look forward to clinic days. Like Hope, I like the routine of it, the vitals and lab work, the regular faces and inside jokes. And the feeling that we are doing something to rid her of this invisible menace. On the other days, Hope and I entertain ourselves at home, try to figure out what food will go down easy today, and watch the inevitable Barney episode du jour. And I find myself missing our old routines – school drop-off and pick-up, the grocery store, the library, preschool, the playground, speech clinic – and dwelling on the enormity of it all.

When I was 41, my sweet baby girl had leukemia. I hate writing this chapter and can’t wait to reach its final page.

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Hope Update:

Hope finished her second big round of cytarabine on Monday. It was two four-day stints and it’s supposed to make you really sick. It pummeled her blood counts to their lowest levels yet, but she miraculously had loads of energy despite being profoundly anemic. And though she had days when it was a struggle to figure out what she wanted to eat (which we usually chalk up to nausea), she never vomited or seemed uncomfortable. With low counts, we’ve been inside a lot lately – with lots of stuffed animal bowling, Nerf soccer, giant block tower building, and dancing to pop radio. All that energy and activity plus low platelets equals lots of bruises! Yesterday she spent the day at clinic getting tanked up on red blood and platelets, to give her a little bump before Friday’s chemo (PEG-asparaginase and vincristine, in case you’re following along at home!).