The last four days have been a lock stock and barrel whirlwind, to be sure. Wednesday night was the official campaign kickoff at Club Soda. Let me tell you how that went, because it was an absolute profusion of sentiment.
As per my usual lately, I was completely blindsided by the emotional opulence the night brought. And also per my recent usual, I was pretty much ill-prepared for how to deal with it properly. As we walked in, there were many familiar faces in the cozy, surround-by-glass-on-two-sides room. I greeted my long lost and newly engaged buddy with a giant hug and a “Mikey!” screech; he’s running for Man of the Year (sorry, dude, I know you donated to my campaign last year but one word: Olivia. <still love you>!).
Other hugs and greetings were exchanged by all and the program commenced. This is Melanie’s first year as the campaign director, and she’s doing a fantastic job. Stepping into the ring was a giant leap of faith for her and she’s knocking it out of the park. She gave an overview of the evening, explaining the time lines along with a multitude of other details before turning it over to Gianna’s Dad, Chris.
Gianna is this year’s Girl of the Year. She’s 9 years old and has Acute Lymphoblastic Leukemia, the most common childhood leukemia. That girl is quite possibly THE most photogenic child I’ve seen in my entire life with a head full of beautiful dark flowing curls. She is bubbly with lots of personality and a side of sparkly attire. Gianna was making her own rounds, holding hands with Caleb, the 4 year old Boy of the Year, while brightly smiling through her hot pink lipstick adorned mouth. She is the picture of perfect effervescence.
Chris began to recount “the story.” Cancer always has a story, does it not? Something Chris poignantly said, I remember myself all too well: it’s the unknown that is the worst. Once the diagnosis arrives, time stands still. Nothing makes sense. It’s as if words become nothing more than faint and distant echoes; people react and respond in ways you’ve never seen or thought possible; and fear takes a swift stranglehold. His voice began to crack as he disclosed that Gianna has something called the Philadelphia Chromosome. My ears perked and a chill immediately shot down my spine.
The Philadelphia chromosome (Pc) is a reciprocal translocation between chromosome 9 and 22. I know this because I had it, but I had no idea Gianna did until the moment Chris announced it. He went on to say the odds are instantly cut in half when Pc is present and I watched from the back of the room as many eyes began to water, the side conversations coming to an end. “As Gianna likes to say, ‘CANCER SUCKS’,” Chris told us before concluding the gut-wrenching story.
Melanie told me I would be speaking at some point to announce this year’s candidates and go through their care packages and other housekeeping items. Yeah…I spoke. Immediately after Chris. All I can say is that there are moments in life when things make just as much sense as the times when they do not.
As Mel introduced me, that same faint, distant echo I heard the day (December 12th, 1998) my Doctor told me I had leukemia showed up out of nowhere. Kind of like the moment you know you’re about to run into that person after a long absence and you freeze, shell shocked by the overwhelming emotions which come flooding back to the surface, no matter how hard you’ve tried to bury them.
Through muffled sounds, somehow I knew when to stand up and walk up front. And somehow I knew even though I had nothing prepared to say, introducing the candidates in that moment wasn’t going to happen. This campaign is so much bigger than any of us (excluding Caleb, Gianna, and their families) in that room, and I needed to acknowledge a few things first.
Cancer is stupid. So, so stupid. I remember watching my parent’s faces just as I see Gianna’s parent’s faces now; I remember their pain of not being able to do anything to make it stop, to take it all away. I remember feeling the pain on my own face simultaneously, as I looked at my tiny daughter, wondering if she would grow up without her mom. Fear of the unknown. How does this story end?
But hey, Gianna…I also remember when the Doctors told me I had the Philadelphia chromosome too – and yet I’m standing her today so you can see what hope looks like. Someday, YOU will be doing the same thing.
I love when people come into each other’s lives to share experiences. Far too many times we believe things we read or hear from sources that are either suspect or have their own agendas. Sometimes, the stories people throw out there in an effort of personal catharsis end up damaging others and thwarting any future hope, as unintentional (or not) as it may be. And it is our job to stand together and say, “Hey, unless you’ve walked in these shoes, you can’t know.”
What we DO know is this: the landscape looks different than it did 15 years ago because of R&D; there are choices and options and ideas and people who care. People who are working together to find a cure. And some of those people reside right here in Fort Wayne.
We will all keep working as hard as we can together over the next 9 weeks. Because we all know it matters, and we all know the characters in every story are special and unique, just like the stories themselves. Unknown endings and all.
