This Saturday should have been Twin Triumph's 10th year participating in the Great Strides walk. We should be getting ready for the walk right now, welcoming out of town family and getting excited to see all of our family and friends for what is always the most important day of the year for Dirk, Alexa, Lucas, Mallory, Camden and me. It's also the kids' favorite day of the year, hands down. For obvious safety reasons, the CF Foundation has cancelled all in-person events, so the walk will be taking place virtually this year. Needless to say, there was a lot of disappointment in our house with that announcement.
But we still want to celebrate with you all on Saturday! Please put your Twin Triumph shirts (or any orange shirt) on and send us a picture or two. Knowing you all are with us in spirit will certainly brighten our day! We realize not everyone is in a position to give this year, but if you are able, please consider being part of our virtual team and donating to the CF Foundation to support Mallory, Camden and all those with CF.
Since last year's walk, Mallory's health has been up and down. She had a very rough fall and winter with five hospital stays including spending New Year's Eve and Day in the hospital. In total, she spent 21 days inpatient between August and January. Much of that was due to her continuously culturing pseudomonas, a nasty bacteria that lives in the lungs and wouldn't affect you or me but can destroy CF lungs. Every time we thought Mallory kicked the pseudomonas, it came back with a vengeance. To make matters worse, she was allergic to two of the IV antibiotics that the doctors prescribed her. Her sinuses were also infected with pseudomonas and she needed surgery to clean them out. However, we couldn't keep her lungs healthy enough to have the surgery. It became a vicious cycle of doing weeks of IV antibiotics to get her lungs healthy only to have them become reinfected. Sadly, going to the hospital once a month became routine for us. Finally, in January, she was able to have the surgery. Since then, she has been doing really well (other than absolutely hating the daily sinus rinses she now has to do to keep the pseudomonas at bay).
One very positive side of this quarantine is that neither Mallory nor Camden have gotten sick since March when we started living in a bubble. Camden has actually had a really great year in general other than one bout with MRSA in his lungs, but he seems to have cleared that. His biggest issue is needing to gain weight. Kids with CF need 50% more calories than regular kids just to grow at a normal pace. Camden loves to eat, but he just can't physically eat enough to keep up with his extra caloric needs. Plus, he's so active that he burns all those extra calories very quickly!
Thanks to your support throughout the years, there is an incredible drug coming for Mallory and Camden. While Trikafta is still not a cure, it is has been life changing for many older CFers allowing them to walk up a flight of stairs without having a coughing fit, run around the yard with their kids without gasping for breath, and significantly improving their lung function. The FDA should hopefully approve Trikafta for 6-12 year olds sometime next summer. While it will be a game changer, it's still not a cure and won't allow Mallory and Camden to live a life free of CF. But we know that day will come, the day when Mallory and Camden can tell everyone that CF was something they used to have.
Thank you all for your support always. It means more to our family than we can say. See you all next June!
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.