As many of you know, although some of you don't, I have spent the last couple months trying to get Sara in to see a very highly recommended NF specialist at the University of Utah. Its been a challenge to get in touch with the right people and wade through the paperwork demands and red tape. But finally, yesterday I got a call to schedule her appointment.
Sara and I will be heading to Utah on Dec. 28th for an appointment on Dec. 29th at 9:30am. Talk about bad timing! The week between holidays is not what I had in mind, but when I started this whole process I told them we needed to be in by the end of the year because our insurance will be changing. Cutting it a tad close are we?!? But I won't complain since the doctor is coming in to the office just to see Sara; he's only suppose to be on call that day. I appreciate the fact that he's willing to do that to accommodate the insurance issues. Tells me that I really like this guy already and that going through all the stress to make this happen was worth it.
We will also spend the afternoon of the 29th in the research dept. They are doing several studies there (its a leading NF research location), and I'm very interested in hearing about them and maybe allowing Sara to participate. Some of them are as easy as just a blood draw to look at DNA or other cells, or an x-ray and ultrasound to look at bone density. I don't see any harm in Sara joining these studies at this point, but I still have a lot to learn about them too. They are also doing a couple of drug trials, using different medications to see if it will stop growth of the tumors. At this point, I have no intentions of enrolling Sara in any study where medication or surgery would be a mandatory requirement.
Now that the ball is FINALLY rolling, I just want to get there and hear what they have to say. I'm nervous about it too, since I know that it will be a lot. I also have no idea if we will be there one day or maybe more. That will depend on what the doctor decides to do, like does he want any testing done while Sara is there. Its hard not knowing how long we'll be gone, but we won't really know until we get there and start talking. And then there's always the cross country drive through the mountains in the dead of winter to look forward to. Oh joy!