But on the bright side…

I was feeling pretty upset when I wrote my last post, about Clio’s blood clot. Upset and frightened and angry.

These feelings come with the territory when you have a child with cancer. But there are a whole host of other feelings—welcome ones— that I’ve been pleasantly surprised, and grateful, to find are also a part of this big, perilous adventure (I’m sorry; I just can’t bring myself to say “journey,” but that’s what I mean) Our version of it, anyway.

Here are some of them, in list form, because a blog loves a good list:

1. Gratitude. For the generosity, concern and big-heartedness of friends, family and readers (that’s you!) who have surrounded us with light and love and the occasional lasagna. Experiencing just how wonderful and caring people can be gives you hope. Humans: they’re not so bad after all!

2. Appreciation for my children. They always say to treasure each day, each moment with your kids. It’s always been hard for me to do on a consistent basis, and it still is sometimes: At night I still wish they would stop being pains in the ass and get in bed already so I can kick back and relax. But at the same time, I am much more aware and appreciative of how precious and beautiful and miraculous they are.

3. Joy. We have had some really fun and rewarding experiences since this whole journey thing began. The events that the Jimmy Fund Clinic has helped engineer have been a blast. The video shoot for one of the songs (“When I Get Bald”) on Alastair’s forthcoming album for kids with cancer (and all kids, really) was  a total hoot. (Exhibit A: Still photo above.) The day we spent in the recording studio with a whole bunch of children — some cancer patients, some not — was also big fun. And next fall, if all goes according to plan, we’re going to the world capital of joy, magic (and consumerism, but let’s not quibble) Disney World. Not too shabby.

4. A sense of connection. Any time people face adversity, they feel a sense of solidarity and camaraderie with others in the same situation. (Ugh – that sounds like an opening sentence of one of the miserable freshman rhetoric papers I had to read when I was a TA as a grad student. Except the grammar and spelling are better.)

Alastair and I have always felt this with other parents of twins, and now we feel it with other parents of children with cancer. We’ve met some informally at the clinic and events, and through the CD project we’ve gotten to know some others. And then there are the other people whose lives have been affected by cancer who we’ve gotten to know a little better as a result of Clio’s illness. If you’re going to be in this crappy little boat, it’s nice to be stuck there with some pretty cool people. (Ooh! I like that as a substitute for “journey.” Crappy little boat voyage! Catchy….)

5. Empowerment. I think I will always be more confident and assertive as a result of this crappy little boat voyage. I’ve learned to ask for help (well, I’m still learning…), I’ve learned to advocate for Clio’s needs, I’ve learned to be direct about asking questions and pressing for more information (even if that means a quick lesson in anatomy or molecular biology) from doctors. Maybe it would have happened anyway. I mean, I’m hardly a shrinking violet, and with each passing year I’ve grown more confident in general. But this has accelerated things. And I like it.

I’m going to stop there, because five is a nice number. And as upbeat as this post has been, I do need to downshift for a moment to say that I think the next two to three weeks are going to be really hard, and we’re all kind of bracing ourselves.

Starting on Tuesday, Clio will begin the CNS phase of her treatment. This involves getting four LPs (lumbar punctures) in the course of two weeks, each delivering three different kinds of chemo. In the midst of this, she’s also going to do a cycle of steroids and her other usual chemo. Bottom line, her little body is going to be assaulted. She’s probably going to feel really sick.

And given her track record with complications, I’m worried that something could happen. There are seizures to worry about. Infection, fever, who knows what else. I’d say the odds are 50/50 we’re going to end up inpatient at some point. I feel no gratitude, joy, etc. at that prospect.

So, batten the hatches, me hearties, this little boat is about to hit a squall. There’s no getting around it. We’ll just have to sail bravely through, and hope we don’t take on too much water. Arrrr!