Medications, Treatments and Being Four: A Day in Jack’s Life

Jack is four years old. He loves hockey, monster trucks, and being outside with his older brother, Nicholas. He also lives with cystic fibrosis (CF). 

For his mum, Paula, CF has been part of life for as long as she can remember. She grew up alongside an older sibling with CF. Today, she and Dan, are raising two boys – including Jack, who was diagnosed with CF at just 13 days old. 

CF has changed since Paula first knew the disease. But, even with treatments that have helped change what the future can look like, caring for a child with CF still means medications, therapies, and planning every day. 

For Paula and Dan, much of that work happens behind the scenes so Jack can try to spend as much time as he can just simply being four. 

Before Jack wakes up 

5:30 AM: While Jack is still asleep, Dan wakes up for the first round of nebulizer and chest physiotherapy. 

7:00 AM: Once Jack is awake, he takes Alvesco, liquid multi-vitamins, D drops, enzymes, and Trikafta – seven medications in total (on a good day). 

But even something as simple as preparing medications takes planning. One of Jack’s medications, Trikafta, requires Paula and Dan to begin each week by individually counting and organizing the granules he needs daily into a medication box. 

Then comes what the family calls “enzyme math.” Jack needs pancreatic enzymes every day, multiple times throughout the day, to help his body absorb nutrients. Paula and Dan keep a close eye all day to calculate how many enzymes he needs each time he has a snack or meal. 

When Jack goes to daycare, the responsibility shifts on to the staff to help make sure Jack gets the enzymes he needs and he can enjoy time with his friends. This is all changing again as Jack enters a new environment with new teachers and friends, junior kindergarten! 

Making room for being four  

5:30 PM: Paula or Dan pick up Jack and his older brother, Nicholas, from daycare. Before they can sit down for dinner, there is more CF care.  

6:15 PM: Paula or Dan perform Positive Expiratory Pressure (PEP) therapy, at least once, on Jack to help clear mucus from his lungs. 

7:00PM: Finally, it’s time to play. Jack and Nicholas can be found playing hockey in the driveway or racing monster trucks. These are the moments Paula and Dan do all the work for.  

7:45 PM: At the end of the day, it’s time for Jack’s final dose of Trikafta, enzymes, nebulizers, and chest physiotherapy before bedtime. 

And tomorrow, they’ll do it all over again 

Paula knows more than most how much life with CF has changed. She watched her sibling grow up with this disease, and when Jack was diagnosed, she hoped he would have the chance to grow up healthy, happy, and surrounded by support. 

Today, there are reasons for that hope. Jack’s disease has brought unique challenges, but advances in CF research and treatment are helping create possibilities that Paula wouldn’t have thought possible many years ago. 

But for right now, Jack’s CF still takes hours away from his mum and dad every day, and hours away from playing with his best friend and brother, Nicholas. 

Looking ahead 

For Paula, donor support isn’t abstract. She herself is a donor and fundraiser, contributing to the progress happening not only for her son, but for other families. 

“Your support helps children breathe. It helps them take their steps, attend their first day of school, and blow out birthday candles year after year. 

Your support fuels research, improves treatments, and brings us closer to a future where no one lives with the uncertainty and burden of this disease. 

Lives are longer, healthier, and fuller than ever before because people are choosing to give.” 

For Jack, your support means more than treatments and medications. It means more driveway hockey, more birthdays, and more days spent just being a kid.