What a wonderful foundation!!
I totally understand first hand, as my son was 20 when he was diagnosed in 2010 & not only was he was too old for the children's programs, at the time he had just missed the cutoff age of the new healthcare laws regarding the denials of pre-existing conditions as long as you were 19 years of age & under (because they were phasing it in) and my son had just turned 20.
I read some of your discussions & wished I had found you before now - we live in Maryland & my son is currently being treated at NIH.
He had a very large mass (5.4 x 9.6cm) when diagnosed in October of 2010, located in his right lat muscle & after 6 rounds of chemo, surgery & 7 weeks of radiation, it came back in his lungs at the 2 year mark (October 2012). He had a nodule in his right & left lung & had to undergo a double thoracotomy to remove them in May of 2013. He is currently doing very well & is looking forward to finally graduating from college in May. His birthday is coming up in April & he will be turning 24. We were told that there is no such thing as remission from synovial sarcoma & the best that we could hope for is to be currently disease free, which they told us he is. This is the second time we've heard those words & it's amazing how emotional they make you feel!
People always ask me if it gets easier as time goes on & my son continues to stay disease free - the truth is that every appointment, every test, every scan is scary & my response is that I don't think it ever gets easier, but I know he is receiving wonderful care & that they are looking for it now, so if it comes back, they will find it early - it's comforting to know that they are now being proactive instead of reactive.
I just wanted to say thank you for continuing to help fight this battle & I appreciate you more than I can say! May your son's courageous battle never be forgotten & may your strength & love continue to inspire many others until they find a cure!!