Rebecca’s spark has dimmed, and we don’t know why.
On days we go to Pittsburgh, she sleeps the whole way there, is pretty normal at the hospital, and then sleeps some or all the way back home. When we get home around mid-day, she usually stumbles to the couch and takes a long nap. She might have a few normal hours of wakefulness starting mid-afternoon, get energized around dinner and bedtime, and then go to sleep for a full night. Or she might spend those hours not doing much of anything except lie awake.
On days Rebecca goes to kindergarten, she usually walks there and has a normal morning. And then, right around lunch time, she usually runs out of steam. We had to go pick her up the other day because she’d fallen asleep at her desk, deeply enough that normal attempts to rouse her got no response. (Normal, as opposed to “THERE IS A FIRE WAKE UP NOW!”) We got her home, and she stumbled to the couch and took a long nap. Once that was done, she didn’t do much for the rest of the day.
Even when she’s awake, at least half the time she seems distant, disconnected. Much of the time she’ll just lie on a couch or a lap, not moving much, not doing anything but staring off into space. You can catch her attention and get a warm smile or an air kiss when you do, but that’s it. She’s there, and yet not there. At her most energetic now, she’s much more subdued than she has been in the past.
And we don’t know why.
We’ve ruled out seizures. The EEG showed absolutely no trace of any seizure activity, even when she just sort of stopped and stared off into space, as she does so often these days. Everything was completely normal, diagnostically.
We think we’ve ruled out pressure due to tumor growth, given the latest CT. We’ve moved up her next MRI, and expanded it to most of her body, to see if there are tumors elsewhere, or if the CT somehow missed something. Maybe a thalamic tumor. Maybe not.
We can’t definitively rule out a virus of some kind. Her viral panel was negative, but it’s a limited test. Everyone in the family has had a virus that drained us, as have some of our friends, but most of us recovered in a few days and Rebecca’s been like this for two weeks now. If it’s a virus, then something is keeping her from recovering from it. But her blood work is normal, her immune system apparently fine.
We can’t rule out the possibility of side effects from the p28 treatment. Rebecca is the 38th child ever to receive this treatment, and one of a very few who’ve gotten it at her dosage level. Maybe this is all just a huge side effect. Except it’s been almost a week since her most recent treatment, and there doesn’t seem to be much, if any, improvement.
In the absence of certainty, it’s hard not to descend into fear. Maybe none of these things are what’s wrong, we try not to think. Maybe she’s just dying. It’s a little like being deep in the heart of an unknown forest at twilight (or is it sunrise?), unsure which way to turn and what’s really dangerous. A snake could be in that log. A rotten tree might fall. There might be a bear.
I grew up in forests; Kat’s totally a city girl. But even I can’t help feeling like Rebecca is leaving us slowly, a tiny little bit at a time. Intellectually, I know that may not be so, but in my gut I feel it. I look at her lying limply on the sofa, her eyes vaguely focused on something a thousand miles away, and my stomach twists icily. I want to shake her fully to life, drag her back to us, scream until the spell is somehow broken.
Instead, I take her hand and smile at her. I sign “I love you”, tapping it to my heart as we always have in our family, to see if she’ll do the same. Usually, she speaks “I love you” back, because that takes less energy, less movement than signing. Her eyes crinkle with warm affection when shes says it, looking into my eyes, holding my gaze for a few moments. Until her gaze slides away and loses its focus on the here and now.
If Rebecca were cranky and irritable from exhaustion, that would actually be easier on us, because that would make sense. That would be normal. It’s the quiet inertia that really, deeply scares us. Whatever our heads may derive from looking at all the maddeningly incomplete data, our hearts are filled with fear. We’ve tried to push it away, and also tried to accept and acknowledge it, and neither approach seems to help. The fear persists. We’re afraid that her light is very slowly going out, that she’s fading from this world, that she’s leaving us.
And we don’t know why.
Perhaps posting this publicly will make all the symptoms go away, and I’ll wonder some day what I was so bothered about. I hope so. I’ll absolutely take feeling foolish in exchange for having her be herself again. I’ll even accept never knowing why she’s been like this. Just as long as we can put this forest behind us.