Friday, April 17, 2015

The Next Chapter

Today is a big day - a day I have anticipated for so long, I can hardly believe it has finally arrived.

It's strange how something so small can be so significant. Yesterday as I arranged for the delivery of the contents of this package, I found myself in tears. For years I followed the development of this "game-changing" drug very closely and I prayed that it might someday benefit Caleb. Even in the darkest moments when I couldn't see my way forward, I heard a whisper of hope, "hold on...."

I must have stared at this box for a solid 20 minutes before I actually opened it. My hands shook. It was like unwrapping the most precious Christmas present I could possibly receive.

Caleb's dose of Kalydeco comes in packets of granules. We mixed them into a teaspoon of white grape juice and Caleb took it in one swallow. Each dose must be followed by a high-fat snack (to aid the absorption of the medicine), so tonight we chose whole-milk blueberry yogurt (one of Caleb's favorites).

I had tears in my eyes watching him take his first dose of Kalydeco. We will never know what his health would have been like without it, but we took a huge leap forward in slowing the progression of his disease. This drug will help him stay healthier longer and Lord willing, will see him safely to the cure. Tonight we punched cystic fibrosis right in the face.

Kalydeco would not exist without the CF Foundation's commitment to investing in research and development of new drug therapies. A cure for cystic fibrosis now seems more possible than ever, thanks in large part to donors like you. YOU are part of the miracle. YOU are saving my son's life and the lives of all who are living with this disease. There are simply no words to express my gratitude. Every milestone is precious, and it seems more certain every day that Caleb will live to experience them all.

Thank you.

Thank you thank you thank you thank you thank you.

If you would like to support the efforts of the Cystic Fibrosis Foundation, please follow this link to learn more.


  1. I often speak of Caleb in Lodge. I believe the prayers I request from my Lodge Brothers for Caleb and your family are being answered. We will continue to pray for that ultimate miracle, the cure.

  2. I am overcome with thankfulness that Caleb has hope for a longer brighter future.
    A thought of him brings a prayer to my lips. God has blessed in many ways already and I am trusting Him with Caleb's future. Love you all so much!


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