Jordan’s Journey

She’s a little nervous. She has a full week ahead. On Monday, she returns for chemotherapy. Then, Tuesday she goes in for a new MRI scan. Wednesday, it’s a full evaluation from her neurooncologist. All in all, she’ll be spending a lot of time at Children’s Hospital.

I have previously written about her growing maturity and sense of wellness. January will mark the sixth year of her journey. In six years, any child will change a lot. Their entire identity emerges–their sense of the world around them and the way that it connects to their lives. Swiss Psychologist Jean Piaget, in his landmark studies of children’s cognitive development, found that children Jordan’s age begin mastering “concrete operations”–the ability to apply logic and tie it to personal experience. I think her growing ability to do just this is creating some sobering realities. She worries more than she once did. The uncertainty surrounding every MRI scan casts a shadow on her otherwise gregariously optimistic spirit. Last night, she confided to her mother that she was anxious about Tuesday’s scan.

– What if my cancer is growing again?
– Then Dr. Findlay will have a new plan of attack. He always has 2 or 3 in his back pocket, just in case.

Jeanette’s counsel provided some comfort, but Jordan grew a little quiet thereafter. In these moments she often vacillates between excessive intimacy and extreme isolation. She either wants to sit right next to you and lean all over you, or retreat to a quiet corner and occupy herself alone, quietly. (more…)

For the first time since Jordan began her journey more than five years ago, we have cause to celebrate. Her MRI scans today revealed noticeable reduction in the size of the tumors. Her doctor was elated. So were we. She will be sticking with this drug protocol for the near future, hoping for further improvements in her condition.

As if that were not enough to celebrate, the way Jordan handled herself today was phenomenal. She made no fuss about getting accessed. She cooperated with everyone.

As we left the hospital she called out to one of the nurses who knows her well, “I really am kicking cancer’s butt!”

Jordan the Shredder

It was our first day on the slopes. We scheduled a private lesson for Jeanette and Jordan. It was hard to contain Jordan’s excitement. She chattered constantly and told every stranger that this was her first day snowboarding.
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Jordan, as photographed through the MRI

It has stalked her for five years, this amorphous sickness called cancer. She’s heard us whisper about it, exchange knowing glances, even openly discuss the process by which it challenges her as she goes about being a kid. But yesterday, for the first time, Jordan saw the disease with her own eyes. Staring into the luminescent glow of the computer screen, she smiled a little. Her eyes studied the peculiar topography of her brain and the deceptively non-threatening blurs of white that marked the fringes of the tumor.

“You were right, Dad,” she said with a hint of pride. “This is interesting.” (more…)

We savored every last bite of our Mexican food before making our way to the patio to carve the pumpkins. Luc was already in his costume, a white t-shirt inscribed with a self-designed iron-on that read “this is my Halloween costume. Deal with it.” Jordan was halfway through her transformation into the Princess Aurora from Sleeping Beauty. It was a thoroughly Southern California holiday, with the temperature lingering in the mid 70’s, and our family was ready for a celebration. In fact, we had just corked a bottle of champagne and toasted Jordan’s health. She had broken a curse.
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Jordan and Jeanette soak up sun with the rest of the beautiful people at the W.

It was time for a break. Nearly twelve weeks of uninterrupted chemotherapy, a long summer, and a career change (I’m starting a new job in a week) demanded a week to just do nothing. The family needed to retreat somewhere with a pool and five-star service. We needed to be pampered. But we couldn’t go far. Jordan has another chemo appointment today and an MRI procedure scheduled for Friday. So we chose to stay close to home — to vacation “in town” — so we checked in at the W Westwood, about 30 miles from home.

The W is taking great care of us. We were upgraded to a penthouse suite. It’s a pet-friendly hotel, so our dog Gracie is with us, and between pampering Gracie and pampering Jordan, our family is getting lots of attention. But that doesn’t necessarily mean it’s gone smoothly… (more…)

–What day is it?

Her eyes squinted off into a distant place, as though she were trying to recall a calendar page and picture it in front of her. She brushed her hair back from her face in a haphazard, distracted manner reflective of her intense concentration.

–It’s Sunday, sweetie.

She was quiet for a moment, eyes locked in that far away place. Then she broke the silence with a groan.

–Oh, I hate Mondays.

It was hard to suppress a laugh. Sometimes I suspect that I irritate her when I laugh at thoughts she feels quite sincerely. She doesn’t understand the irony … never heard the song by the Boomtown Rats, and probably doesn’t understand why when I hear her say such a thing, I have to release my own anxiety by having a little chuckle. She probably does hate Mondays — despises them, I would imagine — but not because Monday marks the return of school, or the end of the weekend. She hates Mondays because for 10 weeks straight, Mondays are the days when she gets poked and tested and laced with chemo. If I were her, I’d hate Mondays, too. (more…)

Our family has a rhythm these days. We fit. The twists and turns of Jordan’s Journey don’t stop us from behaving like an ordinary family with ordinary highs and lows. Only once in awhile do I stop to reflect on gravity and uncertainty and cancer.

The Vincents Know How to Party

A few nights ago I stood outside my house in the backyard between the two windows of my children. I looked to the right to see Luc, squatting in his room over a textbook, fiddling with a rope in one hand and a pencil in the other. He scribbled the solution to a math problem between the non sequiturs of sailor’s knots and cat’s game. His wild platinum hair flashed brilliant in the fading light of the day.

To my left, Jordan gazed trancedly at her television, propped against a pillow on her bed. Her face was relaxed in leisure, lips curling up slightly to the side, her alabaster skin flickering bluish in the glow of the program. She is so content these days, so calm, so at peace and yet full of zest. (more…)

We unfolded the single sheet of paper and handed Jordan a pen. The nurses looked on curiously. Six menu items were listed. She couldn’t read any of them, but she knew what the big rectangular box meant next to each. If she could check off each of these boxes, she’d earn a reward, and today’s reward was the DVD of High School Musical.

“Can you read me the first one, Daddy?”

Before I could even start to read “lie down on the table” Jordan was climbing onto the exam table. As soon as she was prone she reached for the pen and checked the box. The IV nurse cocked her head as she put on her gloves. (more…)

Jordan scales a 20 foot rock wall at Islands of Adventure

She is a child who confounds any notion I have of strength. Just when I think I’ve seen her grandest statement of perseverance, she proves me wrong — and nothing makes me happier.

She attacked her first day in Orlando with Herculean strength. Nothing could slow her down. It was a day chalk full of events. Her answer to each: next! It was a chore to keep up with her.

We began our day with a family breakfast at Tratoria del Porto. Jordan ate her fill of pancakes, eggs and bacon (she has the stomach of a midwesterner). Everyone drank tea (except me). We toasted the beginning of Jordan’s wish and pledged to have fun.

Our first stop: Give Kids the World, a non-profit resort in Central Florida that creates magical memories for children with life- threatening illnesses — and our hosts. After a brief orientation in which we received many gifts, we toured the campus. Jordan autographed a gold star that will soon be affixed to the inner ceiling of the magic castle at the resort, along with hundreds of other children who have realized their wishes. The kids played in the game room until Jordan realized there was a carousel. Within a short time she had negotiated with the cast members to fire it up. Soon she and several other guests were whirling around in circles. After a train ride along the grounds, we were off to our first theme park stop — Universal’s Islands of Adventure (IOA). (more…)