Someone said we were supposed to wear pink. I chose a pink dress out of my closet. My husband wore a pink button down under his navy blazer. We drove the 20 minutes and parked, picking our way over the gravel and the grass and into the church.
She had wanted a pink wedding dress, not bubble gum pink — the kind of pink that is just a hint, just the beginning of a blush. The dress would be the sort for which tulle and fairytales were invented.
I tried not to think about any of this as I sat there clutching my program. I tried not to think that she was in that dress, inside that white coffin at the front of the church.
We were sending her off, not to the rest of her life, but for the rest of ours.
Mary Elizabeth Paris was the girl in the pink dress. She was 12 years old and she died from cancer, acute myeloid leukemia.
I have lost track of the number of children I know with cancer. It sounds callous, but it is true. I have lived in many cities in 23 years in television and I moved away from some of those places in the years before Facebook. I heard about some children who didn’t make it. I still wonder about others.
Insanity is that in addition to being a reporter, I learned to deliver eulogies for people so young I tried to write movingly about their love of Legos, their favorite cat, their Mommy and Daddy.
Insanity is sitting in this damn church pew, again, listening to agonized parents talk about their children in the past tense.
Insanity is following these families’ horrifying stories online, post by devastating post. We read them and we cry, and we feel grateful it’s not our child. We get to escape it, by logging off Facebook. They can’t.
Some things have improved. We ‘Go Gold’ in September, childhood cancer awareness month. Times Square is awash in golden lights, we wear ribbons, we attend luncheons, I tell more stories about children with cancer.
It’s good, but it’s not enough.
Our kids are still dying. Childhood cancer is the 2nd leading of cause of death behind accidents, with cancer rates up 24%. Children are treated with ancient drugs designed for adults, drugs that wreak lifelong havoc on their developing bodies.
Here’s a math problem for you to solve: If drug company “A” can research and make a new drug, which group will it make it for?
a.) the more than 231,000 people diagnosed with breast cancer each year.
b.) the 500 children diagnosed with what Mary Elizabeth had, acute myeloid leukemia.
Using this kind of supply and demand math, our kids come out the losers.
Non profits have taken the lead, funding research and trials. In Atlanta, where I live, CURE Childhood Cancer funded a trial that had one patient, a 12 year old girl. I knew her. I had told her story. That trial saved her life.
Mary Elizabeth’s father gave her eulogy. I watched him, holding my breath. To the hundreds of us huddled together he said, “For those of you with children, you’re in the lottery, and you better hope you never get called like we did.”
Ribbons and light-up-sqares are wonderful displays that must be followed by action from all of us, if we are to save our children.
Steve and Mandi Paris buried buried their beautiful Mary Elizabeth in a pink dress they should never have had to buy.
They lost the lottery.