January 15th, 2014
Every three weeks, Clio starts a new treatment cycle. It’s been this way since November 2012, and will continue to be this way through July, when she’ll finish treatment.
A key ingredient in each treatment cycle is steroids. (Dexamethazone, specifically.) Last year, she got insanely high doses of it; this year she gets a third as much. And although this means she isn’t nearly as tired or uncomfortable — and doesn’t miss school, like she used to — much of our steroid routine remains the same:
1. Steroids. (Obviously). We have the medicine in liquid form, which we mix with apple cider. We put it in one of the girls’ monkey or pig cups, with a straw. It used to be an excruciating, drawn-out process to get Clio to drink it all down. For a while, I had to do a “sip for sip” thing with her. Every time I took a sip of my seltzer (or wine, depending how miserable the day had been), she had to do a sip of steroids. Now, she sucks the whole thing down like nothing doing. Amazing.
2. Pasta. This is the thing Clio craves most when she’s on steroids. Well, actually, she’d have it for dinner every night, all the time, if she had the option — which she doesn’t. But we indulge her pastaphilia during treatment weeks, because to resist is pointless. Especially now that we’ve established a precedent. Clio is a creature of habit. And while on steroids, she’s a beast of habit. You don’t fuck with her routine. And you don’t bother trying to convince a kid whose taste buds and appetite are out of whack to eat their vegetables. Because you will go stark raving mad. Read the rest of this entry »
January 10th, 2014
Trying (and failing) to startle medical personnel with a plastic bug during our last hospital stay
Yesterday I participated in a presentation and Q & A for medical students at Harvard, in which I recounted the story of Clio’s diagnosis and treatment, starting with the first symptoms she had — intermittent fevers, leg pain, belly pain — and going right through to her current treatment, and thoughts about what the future may hold.
(Last year, Alastair and I participated in the same thing in the flesh; this year I did it via Google hangout from Gloucester, where I spent the week for a DIY writing residency with a couple of friends.)
A good friend of ours, who’s a doctor, is one of the faculty members who runs the thing, and Clio’s oncologist, Lewis Silverman, was also there. And I have to say: it’s kinda trippy to be in a situation where your doctor is there, but you’re the one with the floor; you’re the one giving the case study, and the one answering the med students’ questions.
And it’s a strange thing to be talking about the emotions surrounding your child’s treatment in front of her doctor. Because when Alastair and I talk with him (and other doctors) in a clinical setting, it’s not like we bare our hearts. It’s all about symptoms and side effects and medicines and plans.
And it’s not like I bared my heart yesterday. (If they want heart-baring, they can read my blog.) But I did talk quite frankly about what it’s like to find out your kid has cancer, and what those first 72 hours are like: Shock, terror, grief….. Read the rest of this entry »
December 31st, 2013
We realized very soon after Clio’s diagnosis that at some point in the course of her treatment, we were going to be confronted with the death of some other child with cancer.
Maybe it would be someone we knew well, whose family we’d gotten to be friendly with. Or maybe just someone who happened to be inpatient the same time we were, that we knew only by sight, or by the balloons on the door. Maybe someone whose paths crossed ours frequently at the clinic . We dreaded it. And we dreaded having to talk with Clio and Elsa about it if it ended up being necessary.
During the first, long stretch we spent in the hospital, in July of 2012, there was a toddler two rooms down from us with relapsed leukemia. Cutest kid ever, although all that was left of her hair were a few wisps. She loved to walk up and down the hall in her diaper, grinning and saying “hi!” to everyone, as her dad or mom patiently rolled her IV pole behind her.
I don’t know for sure, but I think she’s gone now. Later in the summer, when Clio was admitted to the hospital again for a fever, this little girl had gotten much worse. She didn’t walk up and down the halls anymore. There was frequent doctor and nurse activity around her room, sometimes urgent-seeming. And then one day, a bunch of relatives I’d never seen before arrived, and there were many solemn hugs exchanged as people came and went from the room. Read the rest of this entry »
December 17th, 2013
The other day, I rustled up our wreath from the depths of our basement to put on the front door. If you’ve been reading since back when I was blogging on Babble, you may recall that I gave a step by step account of how I made it so that you, too, could create a beautiful, homemade wreath — if you’re a lazy-ass crafter like me. And because it was Babble, it was in slideshow format, of course.
I don’t really do blog posts like that any more — with a gimmick or humorous conceit at the core, that is. Writing about having a child with cancer doesn’t exactly lend itself to that kind of thing. (The closest I got was The Long-term Hospital Stay Workout). But I used to love doing gimmicky posts. I miss it sometimes.
So for old times’ sake — it is Christmas after all — I thought I’d conjure up the ghost of blog posts past and feature my wreath post here, for those of you who missed it the first time around. (And because this is most definitely not Babble, there will be no slideshow.)
So journey with me — wavy lines, blurry screen, dreamy music — back to December, 2011….
* * * Read the rest of this entry »
December 8th, 2013
My Grammy-nominated husband, having way too much fun with my dad’s karaoke machine.
Hello there! So, I’ve been kind of a slacker blogger lately. But this is, in fact, a good sign: It means nobody else in my family has been diagnosed with cancer! Nothing is driving me to the brink of insanity! Nobody is in the hospital! I’m just busy.
But today, I have a couple of most excellent things to report:
First and foremost among them: my dad is doing well. We were up in Maine with my family for Thanksgiving, and he was up and about, in good spirits, and not in any severe pain — completely different from how ill he was right when he was diagnosed.
He took the lead in indoor blanket and card table fort-building for the kids, philosophical discussion for the grown-ups, and karaoke after Thanksgiving dinner for all of us. (Classic country hits and 80s pop dominated, and I did what I think was a very respectable rendition of the Carpenters’ “Close to you.”)
And all of this was possible because the chemo my dad is getting is working. It’s kicking cancer cell ass. Whether it will continue to work long term remains to be seen. Mantle Cell lymphoma is a doozy. But for now, he’s feeling good, and is content and comfortable. We’ll take it. Read the rest of this entry »