Jordan's Journey

I despise running. Never understood the enthusiasm of runners. I hit the streets and break into a jog and count the minutes until it is over, lungs burning, legs aching, attention span taxed. I finish a lap and wonder what I’m missing.

There’s a psychology to running — long-distance running. I haven’t fully experienced it, but I gather the gist from the tales of my running friends. The psychology of running is rooted in a self-induced conflict, where the mind and body battle for control. The mind forces the body to run, and the body bullies the mind in an effort to make it stop. When the finish line is crossed, the soul is rewarded; body rests, mind exalts.

Fighting a brain tumor is a long-distance run. It requires patience. The body resists the battle. And the rewards hide along the margins. Defeating a brain tumor requires the psychology of a runner: determination, coping mechanisms and indulgent courage. (more…)

“What’s my time again, Dad?”

Lucas kept his eye on the pool, his swim cap a wee bit big for his head. It scrunched his eyebrows into an involuntary look of perplexity.

“1:15:24,” I replied. “Remember to ask the timers how you did when you pull out of the water.”

He nodded, still watching the current competitors as they finished their final strokes and tagged the wall. The PA announced his heat.

“1:15:24,” he mumbled.

I wished him luck and watched him take his mark. His stalwart mind readied to compete. His eyes looked to the starter, apt and buoyant. At the starting signal, his body surged into the pool. He butterflied for 50 yards, keeping up with the other swimmers for the first 25, then tiring on the return stretch. He finished dead last. But he did so at 1:12:56. He shaved nearly three seconds from his time. In fact, he shaved time off of all of his races that day. And his number one cheerleader was the peppy girl sitting in the wheelchair along the pool deck.

Luc takes a moment from competition to show us his best side.

We retreated to Palm Springs for the weekend. But for a few family meltdowns, it was a therapeutic holiday. I’ll post more shortly.

Her counts were good when she went for labs this week, so she’s back on chemotherapy. She ran a slight fever Tuesday night. The medical team pulled her from school as a precaution and she has not returned.

She has a lot of trouble walking. She continues to lose her footing and fall often, but it’s her stride that’s most affected now. She walks awkwardly, with heavy steps. Her arms extend so that she can catch her balance and use furniture to steady herself. She doesn’t move quickly and it takes all of her concentration to get from one point to another. She often asks us to carry her.

The medical team is considering prescribing a wheelchair for use at school. Everyone is concerned that she will hurt herself. When she’s with her peers she overdoes it. The flip side is that a wheelchair could weaken her legs. Moving around keeps the muscles strong.

The family goes away to Palm Springs this weekend. Lucas has a swim meet and we plan to take some time to lounge by the pool. Jordan loves swimming and playing in the water. It should be therapeutic for all of us.

There was fanfare. There was ballyhoo. It was our own undertaking of “Make a Wish” … sort of. Last weekend, Jordan, Jeanette and I indulged in a Manhattan retreat while Luc happily slept over with friends. The trip was planned for more than a year. Under normal circumstances, it would have just been me and Jordan. I often bring one of the kids along on my business travels. They enjoy spending the time alone with me and it’s usually easy to book a sitter in my regular travel circuit. Negotiating with Jordan to allow Jeanette to accompany us was far from easy (she could run a law firm one day). She only acquiesced after I agreed to fund a “girls’ only” shopping day on Fifth Avenue.

The Vincent girls lounge at the Westin.

It was well over a year ago that I originally suggested a New York itinerary to Jordan. I promised shopping, gallery hopping and a Broadway show. We agreed to go in the autumn, when the trees were painted with her favorite colors � perfect for a stroll through Central Park. But then she got sick last October and our plans were deferred. I was determined to get her to New York in the autumn this year.

The timing was not perfect. Her immune system is still weak, too weak to restart chemotherapy. She is susceptible to illness, which makes travel by air unattractive. Thankfully, the team at CHLA believes in treating �the whole child�. They cleared her to go because they believed it was just as critical to her well-being as getting chemotherapy. They stipulated a few conditions, but gladly granted her leave.

To quote Dickens, the weekend was “the best of times. It was the worst of times.” Jordan is a captivating presence. She is charming, witty and prone to unsolicited shows of affection. She wears her heart on her sleeve and surprises us with quaint sentiments like the way she described her mother to me Friday.

�Isn�t mom a precious dear,� she asked rhetorically.

I stared blankly, uncertain if I was speaking to a seven year-old child or a Victorian matron channeled through the spirit realm.

But like all of us, Jordan has an alter-ego. She can be obstinate, dramatic and downright contrary. While easy to overlook these “minor flaws”, there are moments when they apparate in a fashion so forceful that her behavior seems positively wicked. During our four-day sojourn together, both personalities emerged. Iââ�¬â�¢ll be honest. She is not an easy travel companion. The fault is not entirely due to her personality. (more…)