September Conversation with Jordan.
The Big Steps - Milestones on Jordan's Journey
The great bandleader Guy Lombardo once said, “many a man wishes he were strong enough to tear a telephone book in half—especially if he has a teenage daughter.” That is an apt way to describe my experience yesterday with The Slayer.
It may have been one of the best turkey burgers I’ve ever had. Or, maybe it was the company and the conversation that affected my impression of this fried culinary masterpiece. I sat across from a friend of many years—a friend who I sadly don’t make a point to visit nearly enough. He is a creative mentor, an innovative entrepreneur who always manages to weave his creative pursuits into inspiring social causes, and a long-time supporter of our Slayer. They are connected in more ways than one. He, too has wrestled with cancer, and as a result he has always been there when we’ve been in the thick of the fight. He is my friend Roger Holzberg.
Our conversation danced between our latest professional endeavors and the adventures of our families, all the while punctuated by the delicacy of my abundant supply of french fries (which Roger helped me finish). Midway through he asked the question we return to every time we chat: how is Jordan?
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.”