I remember driving in a car to the fourth doctor, and I look at my husband and I said, you want to bet that because there’s only one combination left that this guy will say yes to surgery and no chemo. Sure enough, that's what happened. The best sarcoma specialists in the country gave us totally opposite recommendations. What do you do? Well, you learn and you have to make your own decision.

I got in touch with some patients. And we knew that we had to do something. The only thing we could do was organize a very tight community. One of my friends had this brilliant idea to launch an EHE Facebook group. It was launched in September of 2013 and was 7 or eight of us on in this group in the beginning. And I remember checking every day five times a day to see if anyone else joined. And every new person who joined was like, “Yes, we have another person!”  And when we had 20 patients in the group, I thought, “We're not rare!”  And by the way, today we have more than 2400 members in our EHE Facebook group from almost 80 different countries.

We were all in it, me and my husband and my older son. I think he saw that there was a team to cover him. We were not always on the same page. Don't get me wrong, there were fights. But I think my son kind of decided that he cannot do better than I will do, than we will do, than this team will do. He took the position of:  I'll trust what you're saying, but it has to make sense to me. He was never like, “okay, whatever you say.” I had to present him with my rationale. But that's the kind of relationship that we developed after he was diagnosed.