Not So Rare

A dear friend asked if she could share Tillery's story on Rare Diseases Day (Feb. 28). As I started to think about it, I realized that the "rare" disease that we are fighting isn't really that rare.

Low grade glioneuronal tumor with mesenchymal differentiation...yes, that's rare. That's the official diagnosis for Tillery's mass. It took 5 weeks and pathologists across the world to finally give a name to this evil we face. When they did name it, we were told that researching it would be difficult because there isn't another case of this exact tumor ever documented. So I guess if you think about that, she's pretty rare.

But brain tumors are categorized into some groups that tend to look and respond similarly. Tillery's falls into one of the most common groups "Low Grade Gliomas". Within that group, Tillery's tumor falls into the category of Low Grade Gliomas - NOS (not otherwise specified) so she's basically in a catch all/other category but still in a bigger more common group.

And then, if you back out further, brain tumors are the second most common form of childhood cancer. Leukemia is the largest majority of childhood cancer types, which is why it's been researched more and has much better outcomes. Brain tumors have been on the rise and are much less rare in the childhood cancer world these days, especially since brain tumors are a common secondary cancer form for children who are originally diagnosed with a different form of cancer. So a brain tumor diagnosis in a child isn't as rare of a thing as you might assume.

Then, to back out further to the classification of "childhood cancer", now we aren't even talking about something rare at all. One in every 285 children will be diagnosed with cancer before the age of 20. Tillery's brother's school has 550 kids in it so statistically, 2 of the kids roaming the halls with him daily will be diagnosed during their childhood. And to back that further, Knox County Schools has 59,516 students enrolled, which means statistically 209 Knox County students will be diagnosed during childhood. That doesn't really sound that rare at all, does it?

We have friends with children diagnosed with diseases that you can name every other child with that disease because it's that rare. We also have friends with children who have no name for their diagnosis because it's so rare, they are the first case. At least for us, we fall into a larger, more common diagnosis that allows for more awareness and more treatment options. Even so, childhood cancer only receives 4% of cancer research funding, making you wonder, if they can't find cures for adult cancers, how will they ever find a cure for childhood cancers? And if they can't cure childhood cancer, how do parents of children with truly rare diseases cope with the knowledge that their rare disease gets even less, if any, funding.

We don't have the answers to solve these issues. What we do have is YOU! As you learn about our story and share our story, it raises awareness. As we share about other kids and other diagnosis, it raises awareness. As awareness is raised, funding can be raised. So continue to follow our story and talk about our story. The more we talk about it, the less rare it seems.