Cancer Survivors Network

My mom was diagnosed in Feb. w/Soft tissue sarcoma (specifically PNET). The tumor is primarily involving the gluteus medius muscle. The tumor has displaced the gluteus maximus posteriorly and it may also involve the gluteus minimus and pyriformis muscles to a lesser extent. What does all this mean? Well, she has a softball between the muscles on her left rear cheek. Yes, it is, quite literally, a pain in the a**. (Must be humorous!) It hasn't responded to chemo (two "cocktails" so far) nor radiation. We're taking her to Sloan-Kettering (she's at Menorah in K.C. and we love them, but want alternatives, if there are any) for another point of view and other possible treatment options, if there are any. This is rare, only about 1% of cancers, especially adults (it's a form of Ewing's; but they call it PNET). It's also metastasized to one lung (one small tumor there) which has also grown. We feel like we're nearing the end of a road we never thought we'd be down. My sister and I try so hard to be positive, but honestly, we don't see much hope sometimes. We'd never say that to her, but we feel it. Does anyone know anyone who's had similar cancer and who's beaten it?
Thanks for any help! :)