Tuesday, November 10, 2015

Not a Cure

Kalydeco is not a cure.

Don't get me wrong. I am INCREDIBLY grateful for Kalydeco. To be one of the first few mutations to benefit from the cutting-edge science behind this wonder-drug is beyond words. We hope that Kalydeco will prove to be a "pause button" on the progression of Caleb's disease and will keep him healthy for the cure that we believe is in his future.

Kalydeco is not that cure.

How do I know this?

Because we still do multiple treatments every day. We still go to clinic quarterly. We still wait with baited breath for test results. We still panic when something new shows up that we've never seen before. We still treat infections with large doses of strong antibiotics. We still fear a prolonged hospital stay is inevitable. We still wake up in the middle of the night, hearts pounding, trying to remember the nightmare that woke us and realizing it's the reality of our "new normal" that jolted us from a sound sleep. We still fear germs lurking on every surface. We still crave the safety of home and dread the uncertainty of the wild, wide world. We still paste on a smile and pretend that everything is fine when in reality, some days we are barely holding it together. We still look into the eyes of our five year old son and grieve for the day when he realizes....

I can tell you a lot about the science behind Kalydeco. I can explain how it is (hopefully) working inside Caleb's little body, why the potential benefits to his longevity far outweigh the unknown risks. I can tell you all about new developments and exciting new research and why I believe the cure is a real possibility in his lifetime.

But when it's quiet and dark, and my thoughts spiral out of control, I am still sometimes so afraid I can't breathe. I still wonder how I'll ever make it through another week, another month, another year of this "not knowing." I still ask why this has to be our story.

And I still long for the cure, for the freedom from these fearful realities, with all of my heart.

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