"What is cancer, Daddy?"
What? Where did THAT come from?
"What did you say, honey?" I ask.
"What is cancer?"
She's three. Three and a half, really, but much too young to be asking about that...
"Well," I begin... "There are these tiny little things like building blocks called 'cells' in your body, that make up every piece of you body. You have skin cell building blocks and bone cell building bocks. Hair cell building blocks. Sometimes the building blocks go wrong and cause problems. Cancer is like that, and the cells go wrong and hurt the part of the body they live in."
"Do I have cancer?"
"No, honey, you do not."
I didn't say: You have something that may be much worse. You have Long QT Syndrome, which kills more kids each year than all children's cancers combined.
With proper diagnosis and beta blockers most LQTS is well controlled. The experts say she has the ability to live a long happy life like anybody else.
But once you hear those words, you are changed forever.
Everybody knows about cancer. When the doctor says the words I'M SORRY BUT YES YOU HAVE CANCER - you don't hear much after that. What you heard was "I am going to die."
I should know. A doctor said those words to me once.
When the doctor says "Your child has a rare but potentially fatal heart condition called Long QT Syndrome, which usually has few or no symptoms and many times the first sign of it is sudden death..."
You hear: fatal heart condition...sudden death...
Fatal...
As you try to focus, the echo of the words "no symptoms" come to you...
No symptoms?
How do I fight a monster I cannot see? How do I protect my baby?
And she WAS a baby at the time. About 24 hours old. As vulnerable as they come.
It changes you, but you can decide to eat the bear or have the bear eat you. Some people let the bear eat them. They don't know it, of course; they just shut down a little at a time until one day they do not even recognize the life they used to have, allowing fear to run them instead of living. Sometimes they wake up and grab life back. Sometimes they shrink away. I understand, but I could not allow that to happen. Not to a life that had yet to even be started.
That day, I was afraid, lost confused, alone... weak. But only because I did not know what I was up against. How do I eat the bear? I decided to become an expert on LQTS to the best of my ability, see experts, attend medical symposiums, and learn how I would protect my daughter and teach her to protect herself, until I can dance at her wedding and see my grandchildren born. Maybe more.
And I did. I have. I am.
It is three and a half years later, and that bright little girl has taken it upon herself to ask about a commercial she saw on TV, about some sort of cancer; I missed it - it was probably a anti-smoking campaign. So we had a brief discussion about cancer, and then she ran off to play with some Play-Doh.
But we WILL have the other part of that conversation one day.
