Jordan’s Journey

In the midst of an animated conversation on the art of shopping, Jordan snacks on Trader Joes Spanakopita.

Jordan sashays into the kitchen, swaggering from hip to hip as she often does. In fairness, her gait is partially out of her control. It’s the product of the way her body shifts her weight to compensate for the trouble with her legs. But she takes some joy in the sassy walk. She works it.

– Dad, guess what I found at Walmart?

She is fascinated by America’s leading discounter. Somehow she stumbled on to the Walmart.com link, and to my misfortune her parental control filter seems to think Walmart is tame–safe from any harmful content. Now, you might think that an ecommerce site like Walmart would hold little interest for a juvenile web surfer who can’t read.

You would be wrong.

For the last several days she has flipped through its pages ogling at the different things she would like to buy for her friends and family. She’s been keeping a list and using her new digital camera to take pictures of the web pages she likes (we’re trying to teach her how to bookmark and use screenshots, but she prefers this manual method).

– They have the most AMAZING stuff. We have to go there.

No disrespect to the good folks at Walmart, but I would rather stand in line at the DMV while being treated for rabies with injections to the stomach than visit a Walmart store. I can’t say this to Jordan, of course, so instead I hedge.

– Daddy’s not really much of a shopper.

She thinks of this for a moment, grabs a few snacks from the cupboard and then advises me again.

– You really should see it, Dad. I just love Walmart.

She blows me a kiss and scrambles back to her computer. I sigh and consider cocktails with breakfast.

Jordan in the parking lot of LAX, a few minutes before the whole trip was cancelled.

She’s not happy. She was all set to make her very first trip alone. We booked her first class on a flight to Portland to spend the holidays with her aunts and uncles. At 4:45am this morning, all systems were go. Alaska Airlines confirmed she was clear to board. We drove all the way to LAX to learn it was a no go. The flight was still scheduled, but due to weather, unaccompanied minors were not allowed.



She was devastated. We’ve spent the morning lifting her spirits and promising to rebook her flight early in the year, when the weather is better. I told her the bright side: she gets to have Santa visit her own house.

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…)

Last week, Jordan participated in her school’s holiday play. I wasn’t able to attend, but when I arrived home she was abubble with prideful energy. This is the first year since she became symptomatic that Jordan could do more than hum a tune and interject a few words here and there. She actually memorized whole passages of the songs, and when she reenacted the proceedings for me in our kitchen, she remembered stage direction, too. That might not seem like much, but for Jordan it’s quite a step forward. It means her memory is getting better, further sign of her progress. (more…)

Even a trivial game like a round of Guitar Hero brings out the fierce competitor in Jordan. She isn’t satisfied until she proves she’s the best.

Her seductive personality, which often lapses into soulful discourse on the merits of biscuits and tea, belies a gritty underbelly on her character. Psychologically speaking, she might shiv you to win a challenge. She has a ruthless side that sparks when placed in competition. It is the essence of what propelled her up that rock face in Orlando, the substance of the never-ending war of words with her brother, and the very foundation of her survivorship. Jordan is a competitor. (more…)

She is draped in purple, preening herself in the company of her Auntie Lisa, who is blow drying her hair. They gossip and sample cosmetics. Jordan angles to the side and tilts her head with a healthy embelishment of feminine sass. She is having the time of her life. Her skin shines. Her cheeks blush. Her eyes charm on cue. This is why she survives. This is the life that is on her side as she kicks cancer’s sorry butt.

On this day of Thanksgiving, Jeanette and I are most grateful for Jordan’s health and prosperity. We give thanks that our girl continues to grow into a fascinatingly beautiful young woman. And while the disease still threatens from the fringes, we are grateful to have been blessed with a child who never gives up and never lets the struggle rob her of her childhood.

We are also grateful for our friends and our family. You have all been tremendously supportive over these six long years, and we are blessed with a constant stream of love and care. As you know, this year we asked our community of friends to join us in supporting the Pediatric Brain Tumor Foundation during the month of November. Jordan set a goal of raising $1,000. I am pleased to report that we have raised more than $1,600 for this very worthy cause. Thank you for making a difference. Thank you for all that you do.

–The Vincent Family

Jordan and I decided to participate in Story Corps’ National Day of Listening, which will take place on Friday, November 28th. Though the audio is not the best, you can hear excerpts in our latest podcast.

 

 Jordan's Journey Podcast, Episode 5: Play Now | Play in Popup | Download

She is intolerant of sniffles. When her nose runs, she is mad with contempt.

– Why is my nose always running?
– It’s just a cold, Jordan. We all get them.
– I don’t understand why my nose gets so cranky.

And there you have it: Jordan’s personification of the world. Her runny nose is not a symptom of a seasonal cold, it is an insubordinate appendage caught in an insurrection against her body. She scolds her feet the same way. When she tries to wear her boots without her braces the big toe sometimes pokes down and makes her uncomfortable. We adjust and try again, sometimes requiring several tries. Whenever the toe falls down again she rages.

– Oh! Toe, why are you being so stubborn?

She’ll appeal to me.

– Dad, you need to talk to Toe. She won’t get back up.

I always comply. I have a chat with Toe, then supervise as Jordan tries again. It’s half play and half her view of the world. Everything has a personality, none more than she. (more…)

MRI Day

We’re relieved. Though the radiologist has not delivered the report yet, Jordan’s oncologist has completed a preliminary review of the scans and reports that she is continuing to make progress. From his read, it appears her condition is stable, which is much better than we feared. Jordan’s persistent headaches, back aches and nausea worried us. We were all expecting that the tumor might have won this battle. But it seems Jordan is still kicking its butt … or at least holding the battle line.

She is exhausted. It was a very long day and she was so nervous in the morning that I think she’s now completely spent. We took her to Denny’s (at her request). She ate a pancake breakfast and a hot dog plate. She is now taking calls from her family and lounging in front of the television. Thank you, everyone, for all the kind words of support. We definitely did not feel alone these last few days.

She heads to CHLA in about an hour for her quarterly MRI. I’ve never seen her this anxious before. She’s really worked herself up into a bundle of nerves. To top it off, she’s had a nasty headache since she awoke. When you add that to the mandatory fasting before anesthesia, you have an uncomfortable, nervous, somewhat dramatic patient on your hands. But she has reason to be nervous, so we sit with her, hold her hand, share encouraging stories, and try to keep her comfortable. Send good thoughts our way today.