When I was twenty-one and a college junior, I was diagnosed with cancer. Obviously, I made it through (or else my ghost has graduated, gotten its Master’s, gotten married, had two kids, and is currently typing this post), but it was close. By the time they found the cancer it had spread moste everywhere. Had my doctor not found it the day he did… well, my ghost would be typing this.
Even though they caught it in time, the few months after my diagnosis sucked, to put it mildly. I wouldn’t wish chemo on my worst enemy and there are parts of that time I still don’t remember. But, after two surgeries and several rounds of chemotherapy, my fight was over.
My daughter’s is just beginning.
Today marked Day 1 of my daughter Amelia’s long-term monitoring at Strong Memorial Hospital in Rochester. In some ways this day has been almost four years in the making. Today we brought her in, got her hooked up to the EEG machines and then….
We waited. And waited some more. And waited just a little more.
Tonight I sit in a hotel while my wife and daughter sleep in her hospital room.
Waiting.
We talked to two doctors, both of whom couldn’t have been any nicer, any more patient, or any more understanding. Their advice?
Wait.
From now until tomorrow, or Thursday, or Friday, or some other day, Amelia is hooked to an EEG and a heart monitor. Her brain activity scrolls across a computer screen in the corner of the room. We get to watch as a bunch of squiggly black lines bound up and down across the screen.
We get to watch and wonder. Was that something? Was that a seizure? Or a spike? Or did she just roll over in bed?
Sixteen years ago, I had to fight an enemy in my own body. But I knew what it was. I could see x-rays of it. One doctor even offered to show it to me after they plucked it out of me.
Amelia has no enemy in her fight. No enemy she can see, anyway. Or even understand.
Sixteen years ago, my doctor took one look at a sonogram and was able to tell me I had a tumor.
Today, Amelia’s doctors could only say that one word…
Wait.
We’re waiting for an “episode”. We’re waiting for Amelia to go blank and stare into space, totally unresponsive. We’re waiting for her to have one of her meltdowns and scream at us and the nurses and threaten bodily harm and even death to one and all of us. And then — only then – can we press the magic red button , mark the EEG, and give the doctors a peek under the invisibility cloak.
And maybe then they’ll be able to tell us. Is it seizures? Is it behavior? Is it a need for meds or treatment or surgery?
Or do we just have to wait some more?
Sixteen years ago I was diagnosed on a Friday, had surgery on a Monday, and was in chemo the next Monday. Six months later, I was back in school, working almost full time, and — except for the hair that just never came back — as good as new.
Amelia’s been building to this day for almost four years. And there’s no guarantee — none at all — that when we leave Rochester, we’ll be any closer to identifying her enemy.
I knew what I was up against. I knew what cancer meant. I could understand everything they were doing to me.
How do you explain brain waves and EEGs and MRIs to a six year old? How do you explain to her that no one is quite sure why she falls asleep at the drop of a hat, or blanks out, or goes into uncontrolled fits, or feels like there are pins and needles behind her eyes?
How do you explain to her that the only way to figure all that out is to wrap her head up like cross between a pirate and a bad nineties rapper, hook her to a machine tied to a wall so she can’t go more that 25 feet in any direction, videotape her every move, and wait?
And wait some more.
My daughter has courage and heart that I can’t even imagine. She acts like this is a big adventure. She colors in one of the twenty or so coloring books we brought for her or watches Netflix on Mommy’s new Nook. She cons her daddy into letting her watch the Justin Bieber movie on the hospital TV. She plays with her Monster High dolls and her trusty stuffed puppy, Stella.
And only as it gets close to bed time, only as Daddy is set to walk out the door, only as reality sets in that she’s not leaving the hospital tonight…
“Daddy? Can we go home?”
She takes it in stride when I tell her no, and goes back to her toys. She never once looks at the screen with her dancing brain waves, only complains a little about the backpack full of wires she has to take everywhere she goes.
My little girl is cowboying up.
And as sad as it is, all of us adults? We’re all waiting for when she can’t cowboy up anymore. When it finally gets to be too much and she breaks. And then those waves on that screen will really dance.
And then, maybe, we won’t have to wait anymore.
Related articles
- Three Years: Our Journey with Epilepsy (finishsomething.wordpress.com)
- How are EEGs used to diagnose epilepsy? (zocdoc.com)
- Just a Normal Girl (finishsomething.wordpress.com)
Salsa Oudenaarde
January 29, 2012
Very good blog.Much thanks again. Keep writing.
Salsa Oudenaarde
January 29, 2012
Thank you ever so for you blog.Really looking forward to read more. Really Great.