Tuesday, January 30, 2018

CF Sucks

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Gunnar Esiason posted a blog on the topic of social media privacy last year and it has me rethinking the level of detail I include in these updates (here's the link to that post if you're interested).  At the same time, I need my people to know what is going on in my life and YOU ARE MY PEOPLE. 

So here goes.

Last week Caleb had a routine CT scan. His last scan was two years ago, just before he began taking the full dose of Kalydeco. If you don't remember the circumstances around those miraculous results, here's the link to that post. I was cautiously optimistic that these results would be even better. I didn't want to jinx us by saying it out loud, but I was pretty sure our doctor was going to call and say something like, "WOW!!! You'd never know these lungs belong to a kid with CF!" 

As it turns out, that is not what happened.

Last week's CT scan shows the first evidence of permanent damage to Caleb's lungs. While still considered mild, we have now moved into the realm of "not reversible." These changes bring with them two new inhaled meds to be administered twice daily. More time devoted to fighting CF. Less time to just be a normal kid.

I am heartbroken. I now know I harbored a secret belief that Kalydeco is as good as a cure. IT IS NOT. I can't stand the thought of damage occurring inside Caleb's precious lungs while we go about our daily lives, CF gaining a toehold while he's riding his bike and doing his homework. We are doing everything in our power to fight CF. There is nothing we did wrong, no danger we exposed him to, and there is nothing we can do to reverse the damage. The relentless progression of cystic fibrosis marches on.

I was recently introduced to Mercy Me's Even If, an incredibly powerful song with a story behind it that is both moving and familiar. A father battling his son's chronic illness, wrestling with God's sovereignty, begging for healing, remaining faithful in the face of seemingly immovable mountains. Oh, to have the faith of those Hebrew boys, facing the King's fiery furnace and proclaiming, "Our God can save us but even if He does not, we will still worship Him, for He alone is worthy!" 

The need for a cure is no less urgent today than it was the day Caleb was born. Fighting CF, I feel like a tiny little David facing ten Goliaths with only one stone in my sling. I can tell our story to anyone who will listen. I can try my best to explain this strange blend of sorrow and joy that comes with raising a child with CF. I can fight this vicious disease with every breath in my body. And I will proclaim God's goodness and faithfulness, on the good days and the bad. 

We can't do it alone - we need your help. Follow this link to support our Great Strides team and come walk with us in May if you can. We are so close to a cure, but funding a miracle is very expensive. I hate fundraising, but I love the CF Foundation and the life-saving work they're doing. When you take time out of your lives to come walk with us, you encourage us in ways you can never know. I hope you will join us.

Finally, pray for us. I leave this request for last because it is the most important. Please pray - for health, for joy, for strength to stand in the flames and shout, "It is well with my soul!" 

For a cure.

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CF Sucks

Gunnar Esiason posted a blog on the topic of social media privacy last year and it has me rethinking the level of detail I include in ...