The front of this year’s team t-shirt pays homage to Caleb’s daily therapy. Every day, sometimes up to four times a day for 30 minutes each time, Caleb wears his compression vest that inflates and deflates rapidly to loosen any mucus that may be in his lungs – we call this going Boom-Boom in our family. While this is happening, he breathes through a nebulizer to inhale a medicine called Pulmozyme and saline that aid in clearing his lungs as well.
For those of you that don’t know, Caleb was admitted to Advocate Children’s Hospital in Park Ridge, Illinois, earlier in 2021 to fight off some bacteria using intravenous antibiotics. We lived at the hospital for a week for tests and to regulate medicines. We were able to come home once he had a PICC line installed in his arm because that allowed his mom and dad to administer his IV antibiotics to finish his regimen of medicine. Thankfully the ordeal is over, but we view the whole experience as a tune-up for him.
We are tentatively hoping to begin Trikafta early this summer. Trikafta is a breakthrough treatment for people with CF who have at least one copy of the F508del mutation, which Caleb does. The drug-therapy treats the underlying cause of CF and the preliminary results are nothing short of amazing.
Compression therapy up to four times a day for 30 minutes each time, nebulizers for Pulmozyme and saltwater, PICC lines for antibiotics, and Trikafta on the horizon. We forgot to mention pancreatic enzymes, vitamin deficiencies, and Ventolin inhalers, but that is enough to talk about on another day.
We bring all of this up to you not because we are angry, sad, or wondering why Caleb has to deal with this. We bring all of this up to you because our family is thankful beyond words that your continued support has raised awareness and funded research that has created the aforementioned drugs and therapies that allow Caleb to live his life to the fullest. He loves - and participates without restriction - swimming, riding his bike, camping, playing at playgrounds, video games, going to the zoo, using tools with his dad, cooking with his mom, playing make-believe with Aubrey, taking Carlton on walks, and we cannot wait to see what the future has in store for him.
Thank you again, from the bottom of our hearts, for your continued graciousness and generosity as you have supported Caleb and all of those battling this terrible disease.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.