Eight years ago, just days before the Christmas holiday, my four-year-old daughter Jordan first complained about a headache that would change her life. We figured she was coming down with something or that she was overdoing it on holiday sugars, mostly because she seemed to be okay after she took a nap. When she awoke she charged head-first into all the festivities as though nothing happened, bubbling with excitement and seemingly on a mission to find mischief ... until she needed another break to rest her head. Jordan’s a larger-than-life personality, full of charming eccentricities. You don’t often hear kids her age complaining about headaches, but with her it seemed somewhat part of her character. However, a few days after Christmas the headaches didn’t retreat with a nap. In fact, they were so strong and steady that she couldn’t sleep at all. By New Year’s Eve she was writhing in pain, unable to keep food down, and she was telling us that she was seeing things in double. She spent her first week of 2003 in a hospital, and began a long series of tests, surgeries, and treatments that continue to this day in a determined battle against a rare form of brain cancer.
That holiday experience in 2002 marks a natural break in time for our family. Ever since then, when we look at old photos we try to gage whether they were taken "b.c.” or “before cancer.” I suppose it’s not surprising that the memory makes me somewhat conflicted about the holidays. When your child has cancer, the holidays end up burdened by overwhelming expectations—expectations that can rarely be matched by the actual seasonal experience. Three years after Jordan began her journey we had one of our worst Christmases. Chemotherapy had literally crippled her. She was frail, confined to a wheelchair, and sapped of her usually vast store of boundless energy. My wife and I set unbelievable expectations for that holiday. We wanted everything to be perfect. But as Shakespeare said, “oft expectation fails, and most oft there where most it promises.” It’s ironic that this line is contained in the play, All’s Well That Ends Well. That holiday ended in a family feud, with more hurt feelings than hope and joy. Our family recovered eventually, especially Jordan, who literally willed her way out of the wheelchair with an unrelenting determination to walk again.
I’ve learned to set my expectations around the inspiration that is Jordan. She seldom thinks about endings. Instead, she drives all of us to consider what next we might begin. Her thirst to launch yet another new, creative endeavor can be exhausting, but it is also infectious. From her beguiling energy I have been reintroduced to the joy of a board game, or a round of dominos. I have allowed myself to get lost in an afternoon of window shopping. I have erected castles, decorated ornaments and volleyed in rounds of dizzying conversations about horseback riding, traveling to far points on the globe, and debates over which Jonas Brother is cutest. I never know what to expect, and that’s half the joy, because without fail, we have fun together. We have fun asking ourselves what’s next.
What’s next?
That’s a question many families facing cancer are afraid to ask, probably because the question contains a dangerous third rail we never want to touch. “What’s next?” is also a question that is too frequently unanswerable, and the ambiguity attached to it can be debilitating. But through the eyes of a child, it is a question that can be filled with endless possibility. When you set your mind to consider what you can do next, you entertain opportunities for hope.
I was brought up to think of the holidays as a time when people focus on peace, joy and love. Those were only words in carols when I was a child, but today they are the essence of what I consider when our family asks “what’s next?” It may sound simplistic, but when I prepare myself for the holidays this question liberates me. Rather than fret over what must happen, worrying about expectations my ambition can never match, I think about the possibilities for our family to find peace, create joy, and share our love for one another. I don’t have to try very hard. Jordan leads us. Though she is still very deep in her fight against the disease, subjected to a constant battery of tests and rounds of chemo, my girl lives in the moment. She makes it easy to ask, “What’s next?” because it’s everything she lives for. And when I reflect on the amazing accomplishments of Alex’s Lemonade Stand Foundation, it strikes me that Jordan’s perspective on life is very much in sync with the organization’s purpose. It’s what we can do next that really matters. This holiday season, consider what you can do to help find a cure for all children with cancer. Please join our family and support the cause in any way that works for you, and may your holiday season be filled with peace, joy and love.
Written by Jordan’s proud father, Laurence Vincent
Santa Monica, CA
12/10
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