The Big Steps - Milestones on Jordan's Journey
Slayer gets into verbal exchange with mother. Mother gains upper hand and walks away. I step in to convince Slayer to yield. Slayer says (with dead stare): Really, Dad? Do you really want to get into this?
With only a few exceptions, I took a year off of Jordan’s Journey in 2013. 10 years ago to this very day, my 5 year-old daughter started having excruciating headaches. As you probably know, kids don’t get headaches often. That’s why we found it odd that Jordan kept complaining about her head hurting. She did this through the holidays, but then she’d sleep it off and bounce back to the fun and spirit of the season. But on January 30, 2003, something was different. She was in so much pain. In a matter of days she would be in the hospital, about to have several surgical procedures, and she would begin her journey as a cancer slayer.
Those memories are still fresh in my mind after all these years. Even though Jordan’s cancer is currently stable, our family’s “threat level” is always elevated to orange. We find plenty of ways to have fun and to enjoy each day, but there is a shadow that follows us everywhere. We try to ignore it. We reason it’s harmless—the product of anxiety and trauma—but we never take our eye off of it.
This is why I wrote about the journey less in 2013. I didn’t want to give any strength to the shadow. I wanted to let it sit there on its own for awhile. I wanted to give space for my daughter to live as normal of a life as she possibly could. I wanted to take the pressure off of my son, who has often sacrificed parts of his own childhood to walk with his family on this journey. And, frankly, I wanted time away myself. I didn’t want to write about cancer or slaying cancer or the emotions that accompany both.
My off year is closing and I will pick up on the journey anew in 2014. I hope that Jordan will help me more, to tell the story her way. In January, she has a book coming out that she co-authored with our good friend Dallas Graham for the Red Fred Project. It’s going to be fantastic! We are also planning to bring back our podcast series. And we have photo projects in the works. You’ll find them all here throughout the year.
But before we close 2013, I’d like to ask you to help us achieve a goal that is very meaningful to Jordan and our entire family. You’ve heard us speak often about our favorite charities. Jordan is proud of her work with The Pablove Foundation and Alex’s Lemonade Stand Foundation. This year, Alex’s Lemonade dedicated their winter fundraising drive to Jordan’s honor. They made a movie about her journey (seen below) and they’ve set a goal to raise $40,000 which will fund 800 hours of pediatric cancer research for tumors like Jordan’s. This research means so much to us. Jordan’s neuro-oncologist has had two research projects funded by ALSF. Every dollar we raise benefits children like Jordan in a very tangible way, from an organization founded by a brave hero named Alex that has raised over $65 million in the time since Jordan began her journey 10 years ago.
We need your help to reach our goal before the end of the year. Please consider making a donation in any amount. But more importantly, please help us spread the word. Forward this link on to your friends and family. Tell them that this one honors the girl you’ve been following on the blog for so long—the story of the cancer slayer. Get the word out for Jordan and for all kids with cancer so that we can finish strong.
Thank you. And Happy New Year.
The casts came off the day before Thanksgiving. She was very happy to be free of them. She’s suffering from some painful blood blisters right now, which is keeping her from getting around very well. But she’s happy to have her feet back.
The Slayer and I posed for a picture on Thanksgiving Day. We are thankful for so much, but especially the love and support of our friends and family. #SlayCancer
Jordan and Alex’s Lemonade Stand Foundation are asking you to consider a different kind of “sleigh” this year. Help us “slay” childhood cancer!
We have an annual Halloween tradition. I asked Jeanette when it started. She was unsure. We think it began the year that Jordan broke the curse—the annual misfortune that struck us in the month of October. In 2004, Jordan was diagnosed. In 2005, she ended up in a wheelchair. In 2006, she was in a coma. But in 2007, we got through the month without any trips to hospitals or setbacks in health. To celebrate that year, only on October 31st, we ordered El Cholo, our favorite Mexican restaurant and an LA tradition. Ever since, we eat El Cholo on Halloween. This year was no different.
At least for today, she’s not a Slayer. She’s a purple crayon.
The slayer’s back in some stylish new casts. Purple!
Our friend Dallas Graham is launching the Red Fred Project — A collaborative, story-making endeavor to publish 50 books created by 50 children with critical illnesses across the 50 states. It’s so inspiring. Jordan has been asked to be a contributor. The Kickstarter to fund the project closes this weekend. We rarely ask, but please help us spread the word and make this beautiful idea a big reality.
Scientists at Stanford University used an EEG from a patient experiencing a convulsive seizure (like the ones that affect Jordan) to construct an audio recording using tones that fell into the human voice spectrum. The resulting audio track is haunting and reveals a fascinating perspective on what’s happening when the brain is disrupted by the electrical storm we call seizures.
To understand what you’re listening to, here’s an except from the piece in Fast Company:
“Around 0:20, the patient’s seizure starts in the right hemisphere, and the patient is talking and acting normally. Around 1:50, the left hemisphere starts seizing while the right is in a postictal state. The patient is mute and confused. At 2:20 both hemispheres are in the postictal state. Patient is looking around, still confused, trying to pick at things, and get out of bed.”
Our friends and colleagues gathered for a huge turnout at the UTA Million Mile Run Meet-Up this Sunday.
In Zen and the Art of Motorcycle Maintenance, Robert Persig said, “the only Zen you can find on the tops of mountains is the Zen you bring up there.” It feels like we’ve climbed a lot of mountains on Jordan’s Journey. Sometimes, the task feels downright Sisyphean, but on each new summit I think we’ve discovered a kind of Zen. We keep going on to the next mountain because we can and we must, and the Zen we bring with us comes from two sources: from the Slayer’s seemingly endless spirit, and from the generous hearts of the people around us.
Today tested our Zen. It began with great disappointment, but as I write this I am filled with such humility and deep appreciation for the people in my life that I have struggled to write. I have erased and rewritten the paragraph above a few dozen times, until finally, like the Slayer does on her journey, I decided to move on. She always tells me, “never give up.” So, I’m going to keep going with this post.
September is National Childhood Cancer Awareness month and our friends at Alex’s Lemonade Stand Foundation have launched a really inspiring initiative called the Million Mile Run. People from all over are running/walking a million miles collectively to stand with cancer fighters and show their support for the cause. My colleagues at UTA have taken my breath away by lining up to join us. It inspired our family so much that Jordan pledged to walk a mile, too. Tonight, she got closer to her goal. I came home early and we went around the block together—a full 1/3 of a mile!
It was a lovely evening in Santa Monica, with a nice cool breeze and sunny skies. We chatted about the day’s events and funny things Jordan found on Pinterest as we lumbered around our neighborhood. I held her hand while supporting her with her gait belt. Halfway through our walk we reached an alley that could have served as a nice shortcut. I asked if she wanted to take the easier route.
—No, dad. Let’s keep walking.
And we did.
That girl goes out of her way to find new ways to inspire me. I can’t think of a better reason to leave work early.
Won’t you join us? Sign up to walk with us, or pledge your support by making a contribution to ALSF in Jordan’s honor. Our fundraising page can be found right here. If you don’t know about Alex’s Lemonade Stand Foundation, take a minute to read the inspiring story of Alexandra Scott, who raised more than $1 million to fund cancer research before losing her own battle with the disease. Today, ALSF has raised more than $60 million towards fulfilling Alex’s mission of ending cancer for all children. Just a few months ago they wrote $7 million in grants for promising research. When you learn about all that they’re doing, you’ll understand why the Slayer is proud to be a Hero Ambassador for this wonderful organization.
The Slayer has more guys than just me wrapped around her little finger. She has a fondness for Brooks Ketchup. You can only find it west of the Mississippi, in places like Galesburg, Il, where my Uncle Pat lives. Whenever she runs out of her favorite condiment, he ships her a new batch. If you want to see Jordan light up with delight, watch her face when she opens a box of Brooks from her loyal admirer in the Land of Lincoln.