For much of Nathan's illness I have avoided becoming too much a part of "the community". This is a multi-edged sword. There are so many benefits to being active on the mailing lists and getting to know the other parents. First and foremost there is the knowledge and experience sharing. Neuroblastoma may be relatively rare, but there sure are a lot of really smart and engaged NB parents out there not only gathering their own information but making a real difference in the future of neuroblastoma treatment. Then there is the actual community aspect of it. There aren't that many people out there that have gone this road, relatively speaking. Every circumstance is different, but there are definitely things that only other NB families can relate to. The flip side is the immersion in it and the bad news. For me personally, our lives are so dominated by neuroblastoma that I have to take a step away and not be "all neuroblastoma all of the time". If Susan and I both had the same reaction it would be a problem, because her involvement on the "N-BLAST" list has been invaluable.
So I keep my distance and I honestly don't know nearly as many stories and details of other kids' ongoing battles with neuroblastoma. Its different though when you meet the families, and especially the kids, in person. I met so many wonderful kids and families in New York this Fall/Winter. And now I can't help but follow their fights. These kids are in lots of different places. Some of them are in "good" places where they are NED and hopeful to avoid relapse. I pray that they will remain NED. For so many though, there is just a stream of bad news, bad test results, and terrible prognosis. Some of them aren't with us any more.
Each piece of bad news is a body blow. It just keeps taking the wind out of me. A big part of it is genuine affection for these children and their parents. Equally as big a part of it is that it mirrors or foreshadows what is in store for us.
This is "rare" and for most people that aren't impacted directly, I think their view of it is isolated to a friend or family member. "Rare" is such a loaded word. It's connotation is dangerous. People here it and they think "not many". Well, that isn't the case. There are many. Way too many.