Well, hello there! It’s been a while since I’ve posted, but everything is fine, no major dramas. (Some people have told me they get worried when I haven’t posted for a while.) Mostly I’ve just been busy as all get-out with work, working at night and other unpleasantness, plus we were away all last week at Camp Sunshine — a retreat for families whose kids have life threatening (and other) diseases.
It was oncology week at the camp last week, so we were there with 35 or so other families who were going through or had been through the same crappy little boat trip we’re on. I found this to be both a liberating and difficult thing.
On the liberating side, people just immediately “got it.” In both the formal discussion groups as well as informal conversations and even just on an unspoken level — as we did everything from taking boats out on the lake to singing karaoke at night to watching our kids play on the playground and volleyball court — there was a base level of understanding of the challenges we were all facing: the upheaval, the worry, the sibling issues, the parenting challenges, the side effects, the way cancer in a child changes your life in profound ways while leaving other aspects surprisingly normal.
At one point, I overheard another mom dropping her son off at the day camp program (the kids were in activities almost all day for 4 of the 5 days there, which nice for us, and they had a blast) saying to the head counselor, “If he needs Zofran (anti-nausea drug) just come and find me. He’s fine now, but it can come on really fast, and then he needs it, like, immediately. Also, he’s coming off steroids, so he’s kind of achey, and may need to take it easy with any walking or running around. And he also may be kind of cranky and unpredictable — just warning you.”
And I found myself nodding and smiling and thinking, yes, yes, yes!! I told the mom that it all sounded verrrry familiar, and we were able to laugh (in a “what else can you do but?” sort of way) and shake our heads at how freaking exasperating chemo and steroids can be.
On the difficult side, it was hard to know that some of the families we were with were probably going to lose their kids, to put it bluntly. Or at the very least, face much longer and more difficult battles than the one we (probably, and I hope to God) will. We met families whose children have rare brain and bone cancers that have really, really unfavorable prognoses. We met families whose kids had been through the wringer, with multiple bone marrow transplants, stints in the ICU, relapses and stumbling blocks.
We met a lovely, lovely family — they were volunteering for the week — who had first come to camp several years earlier when their oldest daughter was in treatment. She died at the age of nine. It was absolutely inspiring, and reassuring on some level, to see how this family was moving forward, enjoying their kids (one of whom was born after their daughter died), and giving back to the community that gave to them.
On the other hand, it was hard not to empathize with the unbelievable pain they’ve faced and will always continue to feel on some level.
It was hard not to fear what could be ahead for us.
Again, day to day, we just assume — we have to, for our own mental health — that once Clio’s treatment is done, that will be it, and she’ll go on to live a happy, normal life. We have statistics on our side. Then again, so have kids who have battled leukemia for years. Or who haven’t made it.
It was even hard to hear about the late effects — learning disabilities, auditory issues, etc. — and lingering emotional challenges families whose kids’ treatment is years behind still deal with.
So, honestly, by the end of the week (and even before) I was feeling ready to get outta there. On the other hand, I felt like it was healthy, on some level, to have had the opportunity to vent some of the fears and concerns we repress a lot of the time.
And, of course, we met a lot of pretty awesome people. Plus, Alastair and I got to sing a karaoke duet of “Baby, it’s Cold Outside,” I got to dance onstage with Elsa in an expressively choreographed rendition of “We Are Never Getting Back Together” by Taylor Swift, and I got to watch Alastair and Clio bring down the house singing “When I Get Bald,” complete with Clio’s debut of her smokin’ kazoo solo.
We capped off our week with a weekend at my parents’ house by the ocean in Maine, under blue skies and sea breezes, eating lobster and ice cream, watching the girls play with their cousin, and enjoying a respite from Cancerland.
And now, it’s good to be back home.