In health news, both kids seem to have contracted yet another cold. How many different respiratory viruses are there in Wisconsin? The answer appears to fall somewhere between "several" and "one trillion." Lemon did have a self-advocacy breakthrough on Friday, though. After a day of coughing (a lot, but by far not the worst we've ever had), I set up his formula as usual. He eyed the bag nervously as I hung it, and said "Mom, that looks like too much formula. I might throw up." So we skipped it. And do you know who did not puke on Friday night? Lemon. And guess who didn't have to wash any puke out of any sheets on Saturday? Me. Win all around. Except for weight gain, of course, which remains non-existent. But, hey, it's hard to win on all fronts at the same time, especially in the winter. I'll take a partial victory.
In other news, Vertex released some great data on a Phase III trial of their triple combination therapy (the one that would help Lemon). You can read more here. They saw big improvements in lung function of people with one or two copies of the common F508del mutation. They are still waiting for the results of a Phase III trial with their second triple combination before deciding which (or both) drug combinations to submit to the FDA, probably late next year. And then, hopefully, they will begin enrolling a pediatric trial, and hopefully we will be in it!Speaking of being in it, I forgot to mention a couple of weeks ago something interesting that came up during our appointment with GI. The GI doc asked me if Lemon was eligible for any of the current Vertex drugs, and I said no, but that I was hoping to get him enrolled in a future trial of one of the triple combinations. And he said, "Oh, good thing we got his LFTs back in the normal range, then, and we'll have to keep an eye on that so he stays eligible." And you know, I've read the enrollment criteria for the trials many times, and I know that they require the liver values to be at or near normal, and somehow I had never connected the dots in my head that Lemon would not have been eligible before we got him on ursodiol, because his liver values would have been considered too high. Huh. Interesting that our CF clinic wasn't thinking about that. Anyhow, here's to having a variety of different specialists on the care team.
Somehow I've spent an inordinate amount of time this week planning for both Christmas and next summer. Coordinating the kids schedules, figuring out how Lemon can do a little 3-day art program over the holidays without my having to train anyone new on doing enzymes, trying to decide who will be doing what in the summer when almost any camp will take someone who is 5 and almost no camps will take someone who is 3...the party never stops!
