It was bad enough that you had to come along and pick on a beautiful, five-year-old girl — make her feel awful, put her in the hospital, cause her to miss out on going to camp and starting kindergarten and playing soccer and all the other stuff she was looking forward to.
That was all bad enough. And then she had a grand mal seizure in response to one of the kinds of chemo needed to kick your ass.
So we had nix some kinds of chemo and bring in new ones — one of which she was allergic to when delivered by IV, so now she has to get it via nasty shots in the thigh muscle twice a week.
And now — thank you SO much, Cancer — *that* chemo med has caused a BIG BLOOD CLOT in that sweet, five-year old girl’s HEART.
And don’t go looking at me all innocent, all “It’s not my fault! It’s the chemo’s fault! I’m just a chromosomal mutation! I can’t help who I am! Get angry at the chemo, not me!”
No. You know what? Fuck you, cancer.
Now, excuse me, while I go talk to some nice people.
Hello, nice people.
Here’s the deal. Last Thursday morning, before her regular clinic appointment, Clio had an echocardiogram and EKG to make sure that one of the chemo meds she’s getting, Doxorubicin, isn’t harming her heart. This is standard for anyone on Doxorubicin.
She was still feeling lousy from her latest round of steroids — sad and subdued — and sitting there with her in the dark room while they prodded her with an ultrasound wand (occasionally eliciting “Ow!”s), and watching her little heart up on the monitor, I was painfully aware of how much I hate this. I hate that my baby has cancer. I hate that her perfect little heart is being threatened by one of the medicines that’s (theoretically) saving her life. I hate it, I hate it, I hate it.
And I had sort of a bad feeling. She’s had rare side effects / reactions to three different kinds of chemo now. So why not this one, too?
After we left the clinic a few hours later, we went for Mexican food. The girl loves quesadillas when those steroids are going on. Actually, she always loves quesadillas. But dexamethasone intensifies that ardor.
After lunch, as we were pulling up in front of our house, I saw that I had a voicemail — a call I’d somehow missed — from Dana Farber. It was our nurse practitioner saying that, “Unfortunately” (always a nice word to start off a message) “the echo showed a clot on Clio’s line, and we have to start her on some new medicine today.”
I called back and got a few more details: It was a good-sized clot (1.2 cm x 1.3 cm if that means anything to anyone out there), extending from the edge of her central line into her atrium. And this wasn’t caused by the Doxirubicin; it was caused by her big-ass in-the-thigh shot chemo, asparaginase.
In other words, they found it by chance when they were looking for something else. Only about 5% of kids develop clots due to asparaginase, and usually older kids and adolescents, so they don’t routinely screen for them. Usually they find clots from symptoms — swollen calves (when clots are in the deep veins there) or terrible headaches (when they’re in the brain — which is the worst case scenario).
So. Back to the clinic Alastair and I went. I packed a bag for Clio and one for myself, just in case we needed to get admitted for some reason. When we got there (“Didn’t you just leave?” a few people laughingly said) a nurse showed us how to administer the twice-daily shots of Lovenox Clio will be getting for the next 4 to 5 months of her treatment.
Which is just great. Because, you know, every six-year-old wants to get shots twice a day. Even better: she has to get her levels checked once or twice a week, which requires a blood draw from the arm.
Poor baby. Poor, beleaguered but extremely brave baby.
We practiced giving the shots on a squishy piece of plastic that’s supposed to feel like real skin but that doesn’t really at all. Alastair had the stroke-of-genius idea for us to practice on each other with saline, in front of Clio, so we could have a dry run on actual humans, and so Clio could see that it didn’t hurt. (Much).
The nurse wasn’t thrilled at that idea — liability issues and all — but eventually agreed. And after we did that, I gave Clio the first shot. She did OK.
Now, she’s gotten through 5 whole days of morning and evening shots in her thighs. We’ve got a nice little routine where she sits on the bottom bunk (with Elsa) and they watch something on the iPad (a treat for them, but torture for me because they keep choosing Barney; one of the many sacrifices one makes for one’s children) while Clio ices her leg. It takes a while for her to psych herself up, but eventually she says OK, do it. A little scream, and then we’re done.
But there are some times, like tonight, when she just seems sad about the whole thing. Broodingly quiet. Quietly angry.
The injection sites bruise in an awful way. She’s got them all over her little thighs now. She has to wear a medical-alert bracelet saying she’s on blood thinners, which means she’s at a high risk of bleeding and bruising. And she needs to be careful when it comes to activities where there’s a risk of falling or banging into other kids. (The soccer she’s so looking forward to may once again have to wait….) Fortunately, she’s not a rambunctious kid. Honestly, the biggest threat is her exuberant, puppy-like sister knocking into her.
So the shots and levels suck. But that’s not what’s really awful about all of this. What’s really awful is the risk of the clot breaking off and causing a pulmonary embolism.
I know I shouldn’t fixate on this possibility, as it’s unlikely. I know I shouldn’t think about the fact that if the blood thinners don’t work, and the clot continues to grow, surgery might be necessary. I know I shouldn’t think about what might have happened if they hadn’t found the clot in the first place.
But how can I not?
I’ve had a hard time these past few days. I’ve felt sad, tearful, and anxious. Even had another (much less severe – thank God) middle-of-the-night panic attack, like I did after Clio’s seizure. (I woke up in the midst of dreaming that a cardiologist was singing to us….) This time, though, Alastair was home, and I had an Ativan to pop. Still. Not fun.
Once again, I see and feel in a visceral way how close to the edge she lives. I am forced to confront the thing I keep at bay most of the time — the possibility of losing her.
I hate this. I hate this. I hate this.