Oh sweetie, I am so very sorry. I can't even imagine how devasting for your entire family and no wonder she feels hopeless and fearful. I wonder if there might be someone your family could talk with to help sort out all these enormous feelings that are incomprehensible to an adult, much less a young lady. The book has some great points on how to mirror her feelings and validating them, and with great examples. But on a more practical level, again to give her some sense of control, a few thoughts: First, I can see your primary care doctor's point of view, but would it be possible to do an annual visit with the other clinic, have contacts established and if she does need to have sinus surgery or something that can be planned out, having it done there instead? I think I've read a few here who had done something similar. Maybe try sitting with her and brainstorming ideas, where you ask her what she thinks and whether she's like some ideas that you've come up with (again the book is so great on setting out the script on this).
Re her mutations. Yippee!!! 3120G-A is a residual function mutation, which means that there is evidence that Kalydeco works for it. Kalydeco is already approved and available, but not yet approved for residual function mutations. BUT your doctor can still prescribe it and you have good grounds for insurance coverage because there is evidence that it works. Specifically, Vertex has Phase 2 results for a trial with those with residual function, expressly including 3120G-A.
https://clinicaltrials.gov/ct2/show/record/NCT01685801?term=vertex+residual+function&rank=1
The results were positive and Vertex is moving to a Phase 3 study following discussions with the FDA.
http://investors.vrtx.com/releasedetail.cfm?ReleaseID=852372
And Vertex is also doing a Phase 3 study of a combination of VX661 and Kalydeco with an arm for those with residual function, and the evidence shows the two drugs together improve CFTR function even more!!!
So the hope is amazing. Kalydeco should already works for her and I would suggest you review, talk to your daughter and try to help her formulate a plan to have the doctor prescribe it for her. Make this "her" thing. There are several other posts here with folks getting off-label and discussing what they used to support it. OR discuss with her trying to get on the Phase 3 trial for residual function or the VX661 and Kalydeco. And to know of the hope, especially if she has sinus issues, which I can see pertrifying her (and you), find Jenny’s posts on her daughter Abby. (If sinus issues are a problem for her, let me know and I’ll send Jenny a note too to alert her and see if she can provide you more details.) And read this before/after summary:
http://luckycfmom.blogspot.com/search?q=sinus
Kalydeco could be a wonderful thing medically for your daughter, and as importantly, the process of learning all of this and making her a collaborator on devicing a game plan for moving forward can help her control what has to be sooooo unbelievably hard.
Please know of my continued prayers. And a big hug to you mom who must be missing your precious daughter so much, while trying to help your other daughter.
