Adventures

Me: Hey, I was thinking about taking the kids to Indianapolis next weekend.
Betsy: WHAT.
Me: Well, there’s a soccer game Saturday night and then I thought we could go check out the zoo on Sunday. And you would get a very chill weekend out of it.
Betsy: That’s true.
Me: Unless…would you want to come?
Betsy: It sounds fun! Let me think about it.

This was a real life conversation that we had a couple weeks ago. It still shocks me that we have conversations like this. Four years ago, an adventure like this would have been completely out of the question because four years ago, Betsy was still chronically ill.

And then one day, out of the blue, we got a call from Betsy’s pulmonary specialist saying that he was applying for compassionate use access to a potentially life-changing drug called Trikafta that hadn’t gained FDA approval yet. We’d heard about Trikafta for years. We’d followed its progress through the Cystic Fibrosis Foundation’s developmental pipeline. We thought it would still be several months until Betsy could try it.

On October 19, 2019 she took her first dose. It felt like almost over night, Betsy felt different. Better. All of the oppressive, day-to-day symptoms seemed to be dissipating. I remember Betsy kept asking if this or that seemed different. As if she couldn’t quite believe her own body. And then she went to her first post-Trikafta appointment a month later. Her breathing test was up close to 10 points. Four years out, her lung function has risen 25 points. It has nearly doubled. Doors that had been closed for years, have opened back up.

Betsy: I’ll come along to Indianapolis.
Me: Yeah? Are you sure you don’t want two days of peace and quiet?
Betsy: No, it will be fun to go all together!

Arriving to Indianapolis!

The soccer game…I don’t want to talk about it.

Four years ago, Betsy would have chosen the peace and quiet. Not even because she wanted to, but because she had to. Between the risk of overexertion, the danger of having even one night of bad sleep, exposing herself to other people’s germs and the hassle of dragging along inhalers and refrigerated medications and nebulizer machines, a simple four hour road trip would have been at a minimum inadvisable, and close to impossible. Today, we can hop in the car and go on an adventure. The four of us. That is one of the miracles of Trikafta and why we celebrate Trikafta Day every year!

The Indianapolis Zoo!

Betsy, Lucas, Alena, and fern-like giraffe!

Zebras!

Lucas is starting to forget Betsy’s pre-Trikafta life. I’m grateful for that. He was always very aware of how sick his mother was even though he didn’t understand all of the ramifications of Betsy’s disease. I always felt sad that he had to carry that burden as a little kid. Alena will never know what the pre-Trikafta life was like. I feel very grateful for that too.

I also feel grateful for the doctors that took such good care of Betsy during some dark times as her disease evolved. I’m grateful for the family and friends that walked that path with us and helped care for Lucas and Betsy and myself. And I’m grateful for new paths and many more post-Trikafta adventures!