Fall travel madness is in full swing. Papa Bear and I are pinging around the country at an absurd pace. For instance, I got back from a trip to San Diego on Saturday morning (I am definitely getting to be too old to take red-eye flights) and am leaving this afternoon for Denver, hence the early blog post. The weekend was just barely long enough to go to a birthday party, and refresh the supply of food and clean clothes such that everyone will survive until I return.Luckily, it seems like 10 days of Cayston was enough, and Lemon is in pretty good shape. That is, he only came down with a new cold yesterday, so odds are reasonably good that he will hold it together through my trip to Denver, and also my trip to Indianapolis, for which I leave on Friday morning (absurd). Fortunately, after I get back from Indianapolis, I will actually remain in one spot for several consecutive weeks and will have some ability to cope with any arising needs for contingency plans.
The most important news of the week actually comes to us from the New England Journal of Medicine, which this week published two back-to-back papers about Vertex's new triple-drug cocktails. These are the medicines that would treat the underlying cause of CF in people like Lemon, and the results from the Phase II trials look incredibly promising. You can see the abstracts of the articles here and here. Basically, after just one month on the drug, patients had substantial improvements in lung function.It was always my dream that by the time Lemon was in elementary school, there would be a medicine that would treat the underlying cause of CF for people like him. I've heard rumblings in the CF community that Vertex might take one or both of these compounds for FDA approval as early as mid-2019 for adults, and then (hopefully) the next step would be for them to begin enrolling a pediatric trial. I'm pretty committed to having Lemon be a part of that trial, so fingers crossed that there is a study site that is close enough to us to make it feasible.
Thanks so much to all of you who have donated to our CF climbs, rides, and walks over the past few years--these amazing results are a direct result of your generosity, and give us so much hope for Lemon's future. More tomorrows!
