Hello, I praise you for your faith and hope...and I also pray that you are doing well right now. My husband (age 32) was diagnosed with RMC and passed away 2 weeks later (May 2009). I had never heard of the cancer prior to him being diagnosed with it - so I didn't know of the high fatality rate of the cancer until after he had passed away. When he was finally admitted into the hospital, he had deteriorated so badly that even my pastor told me to start preparing for his death (and we are VERY strong believers in Christ) so I felt that if my pastor told me to prepare - that we had definitely reached the end. Unfortunately, he was no longer able to fight (he never even was given the opportunity to do chemo because it had spread throughout his lymph nodes, liver, stomach, and entering into his pancreas which is devastating).
I do want to pass along some information to you. I have heard REMARKABLE things about John Hopkins in Maryland and with your faith and hope - you should try to seek treatment there. I've read previous posts and it seems like they are probably one of the only hospitals in the U.S. who has prior experience dealing with this very very rare form of cancer (it was just recognized as a cancer type in 1995).
Let us know how you are doing and again, I will keep you and your family in my prayers.