If you’ve been following along, you probably aren’t surprised to hear that now that Maddox has turned two, he’s officially eligible to start Trikafta — the “as close to a cure” medication that’s changing the lives of many people with Cystic Fibrosis (If you’d like to learn more about Trikafta visit: CFTR Modulator Therapies or read about it on a previous blog post: All About CF). 

This is something we’ve been waiting, hoping, and praying for since before Maddox was even born. And now it’s here. But like so much of our journey, it comes with a mix of gratitude, anxiety, and surrender.

There are a few important steps we’ve had to take before Maddox could even begin this medication and things we will continue doing: 

1. Monthly Bloodwork: Because of the risk Trikafta carries for liver complications, Maddox will need monthly bloodwork to monitor his liver enzymes. The amazing news is that we were able to arrange for an in-home phlebotomy service, which has been a huge answer to prayer. No waiting rooms, no risk of germs in a healthcare setting, and way less tears. This truly helps Maddox (and us!!) feel at ease and it’s just one less thing to stress about. 
2. Eye Exams: Maddox also needed a baseline eye exam before starting, as there’s a small risk of cataracts with this medication, even in kids. He will continue to have eye exams annually. 

Trikafta will join Maddox’s daily army of treatments. We will give it to him twice a day with a high fat meal, similarly to how we administer his enzymes — by sprinkling the granules on his applesauce.

One thing I’m trying to prepare my heart for is the possibility of side effects. This part scares me. Although rare, the main side effects can be psychological or liver-related. Other CF moms have shared that it’s hard to distinguish between normal toddler tantrums and Trikafta-related behavioral changes if it happens. I’m telling myself that I know my baby, I’ll know if something is different. Some individuals have had to stop the medication due to severe liver issues. 

If you’ve been praying for Maddox, or you want to, please pray specifically for this medication to agree with him. That it will only bring the healing it’s designed for, and not the complications it warns about. That we will have wisdom and clarity to know what’s normal, what’s not, and how to best support him and love him through it all. An extra prayer we have is that it will work so well he will be able to regain pancreatic sufficiency and not need enzymes. That would be a miracle for our family. 

The biggest and most important part of all of this is that this medication is going to help “preserve” Maddox’s lung function. By doing this at such a young age when he hasn’t had hardly any lung damage at this point, this gives him a chance at a longer, healthier, and “next to normal” life. This is what we’ve prayed for. For over two years now.

We continue to pray, actually declare, daily, that there will be a cure for CF in Maddox’s lifetime. We started this prayer the day we found out about Maddox’s diagnosis when I was pregnant. Those early prayers for healing were bold, raw, desperate, and honestly, empty-feeling at times. I was praying for complete healing for a disease that had already been confirmed.

But something changed when I was eight months pregnant. 

Adam and I were at home, talking about how our church was doing a baptism night. I had always wanted to be baptized on my own terms —I’d been dedicated as a baby and gave my life to Christ at a young age, but I hadn’t made the public decision myself. That night, we were going back and forth. Should we go? Should we stay? We started praying together, indecisive and conflicted, asking for a sign. 

In that moment, an inexplicable roar of thunder shook us in the moment of our questioning. 

I literally thought the front door was shaking off its hinges and lightning had cracked opened a hole in our roof. It was crazy loud. We took one look at each other and knew there was no more room left for complacency. We left our dinner on the kitchen island, put our shoes on and walked out the door with hardly a word between us. We were on our way to get baptized together. As a family. For Maddox.

And yet, when we got to the church just a mile away, and asked others about the thunder, because the baptisms were happening outdoors, no one else had heard it. People looked at us blankly. It was almost like it hadn’t even stormed there. Just a little bit of rain. Sometimes God shows up in deafening rumbles of thunder, and sometimes in quiet whispers. This time it was an undeniable roar. 

We hadn’t signed up. We didn’t even bring towels (luckily a kind friend had a few extra in her car!!). But we were welcomed in and baptized last — Adam second to last, and me completely last. I’ll never forget the feeling of rising up from that water with Maddox still growing inside me. I knew that night that God was going to heal my baby.

At the time, I thought healing meant a complete eradication of CF. And maybe one day, it still will. But since then, I’ve witnessed healing in a hundred other ways: in the strength Maddox has, in the resilience we’re still learning, in the zero hospital stays we’ve had, in the complete healing from sicknesses, in the way I worry a little less about common risks, in the peace that has somehow made its way in. 

And in medicines like Trikafta.

Of course, I’m still praying for that cure, for the full healing of his disease, but while I wait, I’m beyond grateful for this medication that gets us as close to a miracle as there is. I thank God for the medicine that gives us back precious, precious time. 

⸻

Jehovah-Nissi, fight your battles

Jehovah-Jireh, meet your need

Jehovah-Rapha, heal your body

Jehovah-Shalom, be your peace

(https://youtu.be/xhyi3H7beEA?si=fMTsWMlBOPZHbRUU)