Cancer kids get all the good stuff

If you’re gonna have cancer, then you definitely want to have it as a kid. You get SO many perks.

Multiple toys every time you go to the hospital? Done. People whose entire job it is to make you feel happy and comfortable, to play with you, and do art projects with you? (Even ones who make house calls, as shown below?) Absolutely! Books, crayons, markers, stickers? Just say when! Free trips to Disney World? Yours.

I mean, seriously, it’s enough to make a kid want to fake cancer, just for the loot.

I am joking, of course. (Of course!!) But it really is amazing just how much effort is made to make this whole stupid cancer thing a little less miserable and a little more fun — I know that sounds weird, but it’s true — for kids.

Before Clio’s illness, I had no idea that there was such a thing as a Child Life Specialist — someone whose job is specifically to work with pediatric patients (and their families) to help them cope with their illness or disability. And in the case of young kids like Clio, “helping them cope” frequently means providing fun activities and generally kid-friendly companionship, so they feel less anxious, less bored, and more at home in a hospital or clinic setting.

Clio always perks up when the child life folks come around. OK; that’s not 100% true. Sometimes she would just as soon watch a

Clio paints with Gail from Our Space, which does art projects with kids with cancer. Click to visit their website.

video or, if she’s feeling really lousy or cranky, ignore them altogether. But most of the time, even though she may not immediately grin and say “sure! I’d love to paint!” (that just wouldn’t be her style — more like Elsa’s) there’s a good chance she’ll nod, and then gradually warm up to one-word answers and a few smiles. And once she really gets going, she’ll actually engage in something like conversation. And she is cheerful and more at ease for a good couple of hours afterward. Which puts me at ease, too: my daughter isn’t miserable. This is a good thing.

Because being at the clinic or the hospital really does put a damper on her spirits. And, guess what, she got to go again last weekend!! Lucky gal! (And lucky Alastair, who was there with her all three nights, since I was up in New Hampshire with Elsa.)

Yeah. So, she was having some really weird — and scary — side effects to one of her chemo meds, most likely the Methotrexate, which is administered intrathecally (that is, into the spinal fluid, via spinal tap). She had four distinct incidents of something clearly neurological in nature (although the first couple of times it happened we weren’t sure).

It started with her acting kooky and almost drunk-ish, then stumbly and slurry and talking in baby-talk, and then she started flailing and moving her arms and legs around and wanting to be on the floor. And while it was going on, she seemed to be having trouble getting her words out to explain what was happening. All we could get out of her (after the fact) was that her legs felt “funny” and that she felt like they were moving without her doing anything.

Yeah. So, scary. And for the umteenth time throughout this process found myself thinking, good God, what are we putting into our little girl’s body? What if this is permanently damaging her brain or nervous system? What if she has an actual seizure?

Ugh. The good news is that none of the tests they ran while she was in the hospital — MRI, EEG, test of the Spinal fluid, Blood tests galore — turned up anything. And there are apparently “rescue” drugs that can be administered after Methotrexate to prevent adverse reactions. So, I guess they’ll try that next time.

But I am getting off track. Let’s get back to how awesome it is to be a kid with cancer.

Heh.

It really does give you the opportunity to see how kind and how giving people can be. And not just to kids; we’ve been absolutely floored by the generosity and thoughtfulness of family, friends and acquaintances near and far — even friends of friends we’ve never met, fans of Alastair’s music, and readers of my blog and of Double Time.

Clio’s free hat from “Hats Off For Cancer” They sent one for Elsa, too! (Click to visit their website).

They’ve sent activity books and markers and craft kits and hospital-friendly toys; hand-knit hats and socks; gift cards for groceries, etc. (which truly make a difference, given how little I have been and will be able to work over the next six months) and lots of heartfelt greetings — both to Alastair and me and to the girls. We’ve had home-cooked meals delivered to us at the hospital and home, and a “cleaning party” at our house. And then there are the countless good vibes and quick notes that have been sent to us via Facebook, Twitter, email and comments here.

Sometimes I seriously feel like George Bailey at the end of It’s a Wonderful Life.

It warms the cockles of my heart (ha ha, I said “cockles”) to know that so many folks are thinking about us and wish us well. And it gives me faith that as much as there is to be angry and dispirited about in our world (election season and all its attendant b.s. and sniping is currently at the top of my list) there are a lot of wonderful people out there.

Meanwhile, it’s sunny and breezy and 70something here in Boston-land, and I’m gonna go eat a big ole juicy peach.