We won!

February 2nd, 2014

IMG_4142OK, OK, Alastair didn’t win the Grammy. But we still had a great time in LA (by ourselves! No kids!). And he still gets to say for the rest of his life that he’s Grammy-nominated. And all the Gramminess aside, he made a kickass album (in my unbiased opinion) that’s touching thousands of lives. Like this girl’s.

So, like I said. We won!

The whole weekend was a whirlwind of silliness and dressing up and feeling a little exhausted but equally hopped up on adrenaline. And there was, as predicted, lots of champagne. Plus a few celebrities thrown in for good measure.

We got out to LA late Friday afternoon, then waited for over an hour in line for our rental car. Never have had to do that before, and hope never to again. Car-related waiting was the theme for the next hour-plus as well, as we endured LA’s famous rush-hour freeway traffic to get to our friends’ house in Pasadena, where we spent the first night. We would have loved to stay up catching up with them, but as tends to happen when one travels westward across the time zones, we were exhausted by 9:00 and fell into bed by 10:00. And then proceeded to lie awake for an hour at four a.m.

Alastair was part of a great little show with the four other children’s music nominees in Santa Monica on Saturday morning. There were rumors that Pink was going to come with her daughter, but she was a no-show. Having seen her performance at the Grammys the following evening, I now suspect she was getting in a final rehearsal of her aerial routine. Or maybe her daughter had a cold.

Pink

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Grammys, here we come.

January 23rd, 2014

grammys-red-carpetTemps are in the low teens here in Boston right now. I’m not a wimp about winter, but I’m not a fan of when it gets frigid like this. Today, though, I couldn’t care less. It just makes it all that much sweeter that tomorrow morning we head for sunny, 80-degree Los Angeles. Woohooo!

I’ve never been to LA before, and I think this brief trip out is going to give me a completely skewed view of what it’s like. While we’ll be spending the first night with pals in Pasadena and Alastair will be doing a kids show the next the morning, the rest of the weekend is going to be full-on glamor, complete with A-list celebrities, designer gowns, red carpets and champagne. (OK, I don’t know for sure about the champagne, but it sounds good. And it’s not improbable that we’ll encounter some, right?) Grammys, baby. Grammys.

A lot of people have asked if they can watch for us on TV on Sunday night during the awards. In fact, the children’s music category—along with the grand majority of the other Grammy award categories, including comedy, alternative, jazz, rap, folk, classical, gospel, Latin, etc.— will not be given out during the telecast show, but during a ceremony a few hours earlier. Read the rest of this entry »


The ‘Roid Routine

January 15th, 2014

DexEvery 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 »


Hello, Young Doctors, Whoever You Are

January 10th, 2014
Trying (and failing) to startle medical personnel during our last hospital stay

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 »


When One is Lost

December 31st, 2013
July, 2012

July, 2012

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 »