Journal entry by PAM SANABRIA —
Hello to everyone! We hope this message finds you well, as we continue to be so grateful for the love and support given to Lucas. One of the few silver linings of a pandemic year during cold and flu season is that Lucas had his best season yet (along with many others too undoubtedly.) He hardly struggled at all with catching illnesses when usually he fights multiple colds, requiring antibiotics and occasional hospitalizations in his past. He was seen last week at UNC Hospital for a check up involving xrays, a lung culture, and physical exam. All reports were good, though his baseline continues to include thickening mucus overnight and morning coughing/difficulty breathing until treatments are complete. His doctor hopes some of these symptoms will improve once the new medication, trikafta, is approved soon for 6 year olds. We are thrilled by the hope of even more improvement coming Lucas' way soon! We anticipate this new medication receiving FDA approval sometime between now and June 2021.
Lucas continues to participate in remote learning from home and recently began training outdoors with a triathlon team locally. Triathlon training is one of the best exercises for Lucas' lungs, and he often has bouts of coughing spells as he challenges his cardiovascular ability during practice. Thankfully he truly enjoys bike riding and running, and soon enough they'll be allowed to practice the swimming portion too. Lucas also hopes he can join the swim team at our local pool this summer. Thankfully, he's motivated to exercise and challenge himself daily. This will certainly contribute to more stable health and success in fighting cystic fibrosis long term!
Thank you again for caring so much for Lucas and our family! We hope everyone is well and is looking forward to warmer weather and spring right around the corner!