Jordan's Journey

Monday is a big day. Not because it marks the first Monday Night Football game of the season. Not because it starts the first full week of school for the kids. Not even because it is Amy Winehouse’s birthday (one of Jordan’s favorite singers). Monday, September 14th may be the end of a road we’ve been traveling for five years. Jordan goes in for an MRI that morning. If her scans show the same progress we’ve seen for the last 12 months, Jordan will stop all chemotherapy. She may soon enjoy a life without pills and infusions, without long hours in an oncology clinic, without trepidation and anxiety about the side effects of her chemical cocktails. While the journey is certainly not over, this road may be dead-ending onto a sunny beach.

She’s nervous, of course. She knows that an MRI means anesthesia, which means needles and grogginess. But, she’s also hopeful. She tells people she’s kicking cancer’s butt, but I think this milestone may actually give her confidence that she wasn’t just boasting. I asked her about her thoughts this morning over our weekly Saturday breakfast of pancakes and tea.

– Yeah, I don’t want to get poked.

– But don’t you feel good about maybe being done with chemo?

– Yeah.

She was silent for a moment.

– Hey, Daddy, I’m just like Billie Armstrong. I really kicked it’s butt.

She often confuses names. She means Lance Armstrong. I understand this because I understand how her dizzy logic works. She used jazz as an anchor. She loves Billie Holiday. She connected Billie to Louis Armstrong, who has the same last name as her cancer-fighting hero, Lance Armstrong. Don’t ask me how I connected the dots. I just speak Jordan.

The reality, of course, is that we don’t know if the fight is over. September 14th begins a carefully planned gamble. She will be going back in for follow-up MRI scans quite frequently for the next year. Her doctor will be looking for any sign of tumor growth. If there’s even an inkling that something is afoot, she’ll be back on the chemo regimen. We’ll be keeping our fingers crossed. I suspect that from this day forward Jeanette and I will scrutinize everything. When she fumbles with a word or slurs her speech, we’ll wonder if a seizure is imminent. When she struggles with a math problem, we’ll wonder if the tumor is toying with her cognitive function. When she complains of a headache, we’ll wonder if the monster’s awakened.

None of these worries will dampen our spirits this week if the results stream in as we hope. It’s hardly the end of Jordan’s Journey. Like any great mythic hero, she still has to return back to her ordinary life after slaying the dragon. She has to return home with the mythical elixir. For Jordan, this means strengthening her legs, bolstering her studies, learning to read. There’s much more ahead, but the end of a road can be a very satisfying milestone. And we plan to celebrate.

Just received fabulous news! A senior neuroradiologist at CHLA reviewed the film from the MRI scans Jordan had last week. He compared the new scans with a study from August 2008. The comparison demonstrates “significant reduction in the thickness and prominence” of the disease around her brain.

A groggy, and slightly cranky Jordan rests after the MRI

It was a long, long day. For the most part, it went well. Jordan cooperated with the technicians for her MRI and she came to afterward with only minor fuss. She was groggy for the early part of the afternoon.

Unfortunately, computer trouble at CHLA kept her doctor from having a look at the scans, and it is too early for the radiology report. We may have results tomorrow. We spent a lot of time with the doctor today, reviewing her case and tracing the history. It is growing likely that Jordan will have more surgery. Some of the reports are in from all the tests on her legs. The doctors doubt that physical therapy alone will restore her muscles to normal functionality.

As for the tumor, without having the latest analysis of the scans, we’re coming upon another fork in the road. Assuming that the scans will show that the enhancements remain stable, we may begin down a path that ends Jordan’s chemotherapy. Her tumor is an unusual beast. It’s very hard to tell if it is still active. What we see in the MRI scans may in fact be dead tumor. The only way to know for sure is another biopsy, and neither we nor her doctors are keen on poking around in her head just to see if the tumor is alive. We may continue her current regimen of chemotherapy for another 6-7 months, then stop and monitor her progress at frequent intervals.

The effects of cancer interfered in Jordan’s life in 2003. She was four years old. From the very beginning, her journey has been unpredictable. The doctors spent most of the first two years trying to figure out what was making her sick. Our options were never entirely clear. After she was diagnosed in late 2004, the path seemed deceptively more defined. But every time we thought we understood the situation, the path twisted beyond our expectations. Cognitive deterioration. Seizures. Immobility. Coma. Her tumor is so rare, there is no probability curve.

Once again, we’re in uncharted territory. It has been two years since her last hospitalization; two years since she hit rock bottom and left us for a week, drifting in unconsciousness. Today, she is thriving on many fronts. She is growing (in the 75th percentile for height), blossoming, and learning. And while we are happy that she may soon put an end to weekly dates with a needle and a dose of toxic medication, we’re still paralyzed by ambiguity. Any journey with cancer is an uncertain one, but Jordan’s journey has become an epic without a third act. Obviously, we hope that act is the triumph of the hero. We hope she takes a cue from Joseph Campbell and returns from the abyss with the magic elixir. Perhaps she has. The trouble is, we don’t know. And so our family snipes at each other and stumbles over tension when we should welcome a little closure. It’s hard to welcome closure when the next chapter is as ambiguous as the first.

Jeanette lined us up in the backyard before we set out on our daddy/daughter excursion to the Music Center for a day of culture.

Blue light reflected from the stage and bounced onto her snowy skin. The corners of her mouth lifted slightly as the pas de deux began. Clara and the Nutcracker locked their arms and glided gracefully across the stage. Jordan sighed and leaned her head against my shoulder. She grabbed my hand and interlocked our fingers. Act two was nearing the end and the music swelled with cymbal-adorned crescendos. The Nutcracker spun Clara, lifted her high to the sky, and embraced her while snow fairies waltzed upstage. I turned to Jordan, whose face was alight with inspiration, and I asked her, “wasn’t that lovely?”

Her eyes widened. “That was awesome.”

When the couple returned to the stage to take their bows, Jordan sprung to her feet shouting “Brava!” She also shouted “Bravo!” I told her it was customary to just shout for the prima ballerina. She told me she liked to compliment them both, and so she shouted again, “Brava-Bravo” as if it were a compound phrase meant to leap from the tongue in tandem. It was a beautiful thing. We had an afternoon we both will remember for many years to come. (more…)

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…)