I am overjoyed to write that we finally received Kevin's crizotinib (brand name Xalkori) yesterday at no co-pay, fully covered. Cigna also covered 100% of the cost (no co-pay, no deductible) for an adjustable hospital bed, so Kevin can now sit and lie down much more comfortably.
We had been working with the Cigna representative for Activision Blizzard, and despite my anger at Cigna because of all the delays and denials of services (delays and denials that have materially affected his health and mental well-being), I am grateful for Julie's efforts on our behalf. Cigna will make an exception on some agreement with Activision Blizzard, she told me what it was but honestly I wasn't really hearing anything except "we are authorizing the medication" so I'm not sure what it was. I don't wish to sound ungrateful, but I only wish this had happened sooner, before his health was allowed to deteriorate to this point. Because we managed to get chest CTs instead of the PET scan that kept getting denied (the whole point was to differentiate between radiation fibrosis and actual met growth), we've dropped the PET scan as the mets in his lungs have advanced to the point where there's really no point in putting any further energy into trying to get a full scan.
We have an appeal in process to get his gene sequencing claim paid for. Foundation Medicine (the company that performed the gene-sequencing) is assisting us with the appeal for the $7200 bill. They said they'll help us up to three levels of appeals, so I guess we'll see.
Otherwise than that, my goal is to just keep Kevin in relative comfort, keep him moving so he can stay independent, and hope the crizotinib will help slow down the progress of the disease, wishlist hope is that we see stability, maybe even reversal. It's a lot to hope for, but I'm glad that I'm at least supported by my work, friends, and family so I can be at home with Kevin.