I remember being in the car, coming here for the first time in June last year. We were waiting to turn left into the hospital entrance and I saw the billboard:
“Where Impossible Becomes I’m Possible.”
I pointed it out to Chris. He squeezed my hand. All our hope was here, and we were both scared and hopeful as hell.
That was almost seven months ago. The photo on the left was that day. The photo on the right was today.
Every time we are here Chris answers the same set of questions about his health. And for all nine visits his answers have been the same — no change.
Every time he says it my stomach flips. My husband, who has an aggressive form of ALS, one that carries with it a 6-18 month life expectancy, has had no change to his health for nearly seven months.
That’s the dream.
Every morning when I’m tying Chris’ shoes, I ask if he feels the same today as he did yesterday. And every day that he says yes, I tell him we’re living the dream.
Way back in the summer, today’s visit was the one we were aiming for — Chris’ final dosing in the trial.
What that really means is that it’s the last possible month Chris could be getting the placebo and not the actual drug. Next month we come back, same as always, but from then on, everyone knows that the little syringe in the ziploc bag is 100% filled with medicine rather than saline.
Based on Chris’ aggressive mutation and lack of apparent progression since he started in the trial, we personally believe he’s been on the drug this entire time. But that’s just our conjecture.
Every patient in this quadruple blind study has a 2-in-3 chance of being on the actual drug and a 1-in-3 chance of being on the placebo.
Back in June, knowing Chris could get the placebo caused daily panic attacks. The idea of not getting the only drug out there that could save his life was often debilitating and consumed so much of our thinking.
Like every morning when Chris took a shower. There were three shampoo bottles on the shelf — two were beige, one purple. He would stand there under the water and just stare at them.
They reminded him, he said, of his odds.
Beige bottle you have a chance of stopping this disease in its tracks. Purple you keep wasting away for six months until your participation in the trial is over and you get the drug in what is called “open label,” which is what every patient in the trial goes into after they are done with their trial doses. It’s the part where you know, with certainty, that you’re getting the good stuff.
Early on I tried so hard to lean into the hope of the drug and fought so hard to not fixate on the chance of placebo. I remember once, at a friend’s house, being able to calmly tell her everything we knew about the drug, explaining how hopeful we were, and then crumbling when I mentioned the placebo.
I tried to tell her that all we had to do was wait six months. That if we could just wait that long, he would get the drug for sure. And then I fell apart.
“But in six months,” I said through sobs, “will he even want to stay?”
Turns out the answer to that question is an unequivocal yes. And we feel so confident he will be staying for a long, long time.
That’s because Chris is — and I hesitate to use this word because it seems almost foolish to say in conjunction with this disease — seemingly stable.
In the months we’ve been coming here, Chris’ weight has been the same. His breathing has been the same. Every part of his body, with the exception of his right hand and forearm, has been the same.
I don’t know what the future holds, but today we celebrate Chris being the same.
Today, we’re living the dream.
To learn more about our story, go here: https://www.nhl.com/flames/news/dear-hockey-family/c-312763286
To donate to ALS research in Chris’ name, follow this link: http://uom.convio.net/goto/chrissnow
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By Kelsie Snow
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