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 Big Steps - Milestones on Jordan's Journey
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.
I stopped sleeping on my own about seven years ago. This confession makes me squirm. I feel a shame in it, like I’m some kind of addict coming out to the world. I became an insomniac during a particularly difficult step in Jordan’s Journey; during some of the worst regimens of chemotherapy and frequent hospitalizations. It was so long ago, it’s hard for me to remember how small she was back then. She was only seven. She still had the same fierce will of the warrior we know and love.
I’ve always been a light sleeper. I can only remember one period of time, when I was about Luc’s age, that I could sleep for hours and hours without interruption. Other than that time, the slightest sound wakes me. Ordinarily, my fragile sleep state wasn’t a problem because I could always fall back asleep. But during that horrible year in 2006, I couldn’t go back to sleep. Sometimes I couldn’t fall asleep at all. After lying in bed wide awake for a long enough period of time, I’d wander the house and get things done. People thought I was crazy when they got emails from me at 3am. Little did they know it was not by choice.
I suppose it was understandable when my doctor insisted that I let him prescribe a sleep aid. Jordan had recently experienced a seizure so severe that she was nearly ventilated. That was the first time anyone ever asked Jeanette or I if we wanted to sign a DNR (do not resuscitate) order. Of course, we declined. But the question lingered. I can’t say that the question kept me awake at night. But something did. From that day forward, when I wanted to sleep, I took the pill prescribed to me. This went on for years until this summer when I decided enough was enough. I hate pills. I hate being dependent on anything or anyone to live a normal life. So, I stopped taking my prescription in June and, after several sleepless nights, discovered what I was missing for seven years: dreams.
The Slayer checked in to Childrens Hospital Orange County (CHOC) this morning for at least a week of tests. This was a scheduled visit. She’s working with the neurology team there to do some extensive observation of her seizures. They’ve been coming on much more frequently. As you know, we’ve tried many drug therapies. With some, she’s experienced such severe reactions that they’ve been ruled out entirely, narrowing our options. With this stay, we’re hoping to gather new data that can help the neurology team develop therapeutic options.
Jordan has been very cooperative and positive about the stay. She hates the process. It’s not painful, but it does require her to wear electrodes on her head 24/7. They get itchy and make her uncomfortable.
She’ll be at CHOC for at least a week. Unlike past visits, they won’t send her home until they get the data. The last time we did this series of tests, Jordan had no seizures at all during her week of observation. This time around, if the seizures don’t occur, the doctors will begin weaning her off of her seizure medications—in other words, they’ll put her in a state that is likely to induce a seizure in a controlled environment. For this reason, she could be inpatient for quite some time.
I thought I would send you some photos from her admission this morning. You can see what it’s like when she becomes a human antenna.
As usual, The Slayer was a pro’s pro with the process. She was talkative and friendly all throughout the check-in process.
Waiting is always the hardest part for her. She gets bored easily like any other teenager. Time can make long, observational tests like this one the biggest challenge.
She’s got a room to herself with a fairly decent view. Her only roommate is her mom, who has to be with her at all times to help in the monitoring process.
When it was time to begin, Jordan relaxed in a pair of her favorite pajamas and watched television calmly. At one point, she had a mild seizure, but it was before she was wired so we can’t count it towards our data quota.
By the time she’s wired, she looks like something between a mummy and a sock puppet. I kept teasing her about it. Somehow she tolerates from me words that would be gasoline from her brother or just about anyone else.
You can see the video of her being monitored in the background. When I left, she was enjoying TV (even though it looks like she’s frowning). The equipment at CHOC is top rate. Unlike previous stays, she can get out of bed and stay active because the devices are very portable. That little blue pack to her right holds the controller and it straps on when she gets up.
There is style, and then there is Slayer Style. She’s been doing quite well, enjoying the summer but returning to school this week.
It was that time again–the time we’ve become accustomed to every 3 months. Jordan went in her for her quarterly MRI scans. It was a good day and her scans were stable; no new growth as far as we can tell.
The picture above captures the essence of MRI day. It’s a lot of waiting, so we all bring devices to keep ourselves occupied. Just a few minutes after this photo was caught, however, Jordan had a very large seizure in the waiting room. It was of the variety that she can feel coming on, causing her so much anxiety and anguish that it’s truly heartbreaking for us to watch. Today, she even let out a feeble scream seconds before her face contorted and her eyes went vacant. She was fine enough soon, but ready to rest. Good thing she would be taking a 2.5 hour propofol-induced nap while the MRI recorded the status of her brain.
Even after bouncing back from a seizure, Jordan reminded us that she’s a pro at the pre-op process. I can’t help but think back to 10 years ago when she was so much younger and much less cooperative. Getting her accessed was a chore. She often had to be physically restrained as the nurses attempted to give her the IV. Today, she impresses them all with her calmness and her gentility. Some of the nurses call her “the champion.” She likes that. A lot.
It usually takes Jordan quite awhile to wake up after the extended period of time she’s anesthetized. We found her sleeping peacefully in post-op, but she surprised us today by waking up pretty quickly and with little fuss.
I don’t think I’ve ever properly introduced you to Delilah. Delilah is Jordan’s sleep buddy. She is even allowed to sleep in the MRI with Jordan. I lay her down next to The Slayer before I give her a pre-sedation kiss. Delilah is a hero, too.
After the procedure, there’s a lot more waiting. We wait for Jordan to wake up and be alert enough to drink some fluids. Then we wait for her to go through triage at the clinic. And finally, we wait to meet with the oncology team to hear the test results. Those iPads get a lot of use during all the waits.
Though her eyes may look a little sorrowful in this picture, she was actually in very good spirits. She was hungry and tired. But she waited patiently and allowed me to photograph her while we prepared to finish up and go home.