Notes from the Cancer Wars: Countdown to Day Negative Zero

Also known as “the part where things get real.”

You can tell a lot of the story through pictures. This photo is from March 14, 2009, when we did a medieval history reeanactment at the Children’s Museum. One of my all-time favorite photos of Armand. Bright, happy, cheerful, with those big floppy locks of hair that we loved so much.

He was a ticking time bomb.

Fifty-five days prior to diagnosis. Something was already wrong, and he knew it. He was a little slower, a little too quick to nap, everything a little off. We knew it and he knew it, but at that early point, we believed  that his tendency towards ear infections was getting a little worse, and anyway – his doctor told us – two-year-olds will change moods and speeds very quickly. Nothing to worry about.

The cancer had probably already started; if nothing else, it had taken root in his adrenal gland and was crawling around getting ready to explode. One of our oncology physicians, Dr. Razzouk, once told us that neuroblastoma hits like a bomb; it sits there for months or years and does nothing, and then explodes from “microscopic” to “bloody well everywhere” in four to eight weeks. It was already there, too small to be seen by the naked eye, but Armand’s adrenal gland was feeling the strain. Any day now it’s going to explode.

This set of photos haunts me more than any other from that year.

Armand’s second birthday party, on or about April 18, 2009. He is dying in slow motion. This photo is a relic of history, a dispatch from another time. It is the last photo I know of that predates the diagnosis. Twenty-one days from now, we’re going to learn how bad it really is. To me, this photo is the last flickering image of the life that once was, as distant as a faded photo from the 1940s.

We’re at one of the family fun places, playing video games and riding mini race cars and generally having a good time. We took these images at the photo booth, mostly because the day was almost over and we were trying to use up credits. The photos stick with me more than any others, up to and including the horrific first hospital ones.

Because he knows. You can tell just looking at him. He knows something is very wrong. So do we, but we still think it’s his ears. Right around this time we called in an appointment with a specialist to consider surgery, probably tubes in his ears. Set for May 15, 2009. We never made it to that appointment.

The nasty thing about early cancer detection – and I’ve heard this from many other parents – is that for so long, it can be explained away as something else. We brought Armand to the doctor four times in six weeks before it became clear how bad it was. One of those occasions was his two-year physical examination, and still nothing. For those two strange months, Armand acted exactly like he did when he had an ear infection. So easy to explain.

Right now the cancer is at least the size of a golf ball, maybe larger. Those eyes haunt me. That little boy who was normally so full of energy, and still enjoying himself on the rides (such as he did; he never actually showed a lot of enthusiasm until he was done), but sooo slooowweeed down, conserving energy, finding workarounds. Because that was the way he dealt with problems. Armand refused to admit defeat, ever. If the way was blocked, he’d find another way. And if his energy level was ebbing, he learned methods to pace himself, draw it out to maximize playtime without crashing and burning. Brilliant kid. If he’d ever acted as tired as he actually was, we might have discovered this a lot earlier.

The bomb has already gone off, exploding in super-slow-motion in his stomach, taking over everything. Slow-motion, and so is he. April 18, 2009. My son is two years old and he doesn’t know what dying means, but he knows what it feels like.

More soon.

Paul F. P. Pogue

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~ by poguesrun on March 27, 2011.

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