February 27th, 2014
As I’ve written here many times before, it’s hard to be a sib.
Throughout this crappy little boat trip, Clio has gotten so much more attention than Elsa, of so many different sorts. She’s been the recipient of countless gifts and treats, only some of which have come in duplicate. She’s spent endless hours more with Alastair and me at the clinic, in the hospital, at home. And when we’ve gone to special cancer-related events, Clio has been the star, Elsa an afterthought.
There used to be a lot of tears and a lot of anger from Elsa. We’ve tried all along to even the scales to the extent that we can, and to fight for her when it comes to things like charity events and special outings; try to impress upon people that we’re all in this together, and that Elsa has had to be pretty damned brave, too. But there’s only so much we can do. And there are some things we just can’t control.
Like a couple of weeks ago, when we got to go to a Celtics game, thanks to the Jimmy Fund clinic. We had seats in one of the corporate boxes, which was really fun for all of us. Great seats, and free greasy chicken tenders and crappy pizza for everyone!
But during halftime the patient kids and only the patient kids (meaning, kids who are patients, not kids who are good at waiting, because that wouldn’t necessarily be Clio…) plus one parent got to go down on the court to high-five the players.
We knew this ahead of time, and told Elsa so she wouldn’t be too disappointed when the time came. I braced myself for a big scene. But to my immense surprise and relief she just said, “Yeah, that’s OK. It makes sense since she’s the patient.” Read the rest of this entry »
February 19th, 2014
I dropped the girls off at their February vacation day camp yesterday, and at first Clio didn’t want to take her (winter) hat off.
It took me by surprise. She hardly ever wears a hat indoors anymore, and has enough hair now that it *almost* looks like she just has short hair on purpose. But you don’t see that many girls her age with very short hair. I remember being Clio’s age or a little younger and hating the short hair cut my mom had given me, because I was the only girl in my class who didn’t have long hair:
I can understand, though, why Clio was self-conscious. Going to camp was a completely new situation, with a new group of kids and teachers. Last month when Alastair took the girls to their first class at a theater program they’re doing, she didn’t want to take her hat off at first either.
She wouldn’t take the hat off yesterday until I explained to the teacher why her hair was short.* And then she did. Maybe she was more worried about the teachers’ reaction than the other kids’. Or maybe she just wanted to make sure the teachers had the backstory in case any of the kids stared or made her uncomfortable.
(*When I explain the situation to people these days, I’m torn over whether or not to say Clio *has* leukemia. Because hopefully she doesn’t anymore. More often than not I say she’s being treated for leukemia. Not that it probably makes much difference to the average person.)
Last night, I asked Clio how it went without her hat at camp. “Well,” she said. “Two kids asked me if I was a boy or a girl. But one of them was just a little guy, so he doesn’t understand things.”
I’m amazed by her resilience and strength sometimes.
I’m also amazed when I think about how much her appearance has changed over the past year and a half, and how quickly we’ve adjusted to each new change. As it is with any sort of physical changes in people, you don’t really notice day by day or week by week. But when I go back and look at pictures, it’s kind of amazing: Read the rest of this entry »
February 9th, 2014
Goodbye to all that, before too long…
In less than five months, Clio’s treatment will be done. No more chemo, no more steroids, no more need to call the clinic or get pumped full of antibiotics or spend time in the hospital if she gets a fever. They’ll remove the port that’s been in her chest since three days after her diagnosis.
Five months sounds like a long time, and relative to her overall length of treatment — a little over two years — it’s not a particularly small portion. But over the past several weeks, it’s started to feel like we’re on the home stretch, albeit a lengthy one.
When other people hear this, their reaction is inevitably “that’s great!” or “a light at the end of the tunnel” or ”you’ll have to have a big celebration!” Which are all completely understandable and lovely reactions.
But they don’t reflect how I feel. I mean, yeah, I won’t exactly miss having to deal with all the medications, or the steroid weeks, or the many inconveniences. But my feelings of relief on that front are far outweighed by the anxiety I’m feeling about the end of treatment.
Over the past year and a half-plus, as miserable and stressful as it’s been at times, at least we’ve been actively *doing* things to treat Clio’s cancer. We have some sense of control. But once she’s off treatment, that sense — however illusory it may be — will be gone. Ain’t nothing we can do to keep the cancer from coming back if it wants to come back. All we can do is watch and wait and hope. Read the rest of this entry »
February 2nd, 2014
OK, 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.
Read the rest of this entry »
January 23rd, 2014
Temps 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 »