Jordan's Journey

What's Up with the Site

Tue, 17 Jan 2012 11:42:06 -0800

You have probably noticed that Jordan’s Journey doesn’t look or feel like it did before. Here’s the scoop: our site was hacked twice. After the second time, I gave up on our hosting service and migrated Jordan’s Journey to Tumblr. In the long-run, the move to Tumblr should provide us with more opportunities to share Jordan’s story with all of you. In the short-run, it will be a headache.

If you follow us by RSS feed, you’ll need to update your link. It has changed.
You will notice that there are many broken links, especially to images. In time, we’ll get those fixed.
All comments are gone. This pains me because so many of you have written encouraging and fantastic notes to us over the years. We have all of them here to read when we need inspiration, but we can’t port them to the new site at the moment. If you want to leave comments in the future, we’re enabling Disqus, which will allow you to send your cheers and thoughts like you always have. (We love those, by the way!)
The design is an off-the-shelf theme, but we intend to make this new Tumblr home look, in the words of the slayer herself, “perfectly Jordan”

The Nourishing Pint

Sun, 08 Jan 2012 05:36:00 -0800

, a photo by larryvincent on Flickr.

People who know me know that I rarely refuse a good pint. This week, our family could not refuse the offer to give Jordan a pint of blood. Her counts had dipped on several fronts, so it was time to give her a boost. And boy did it ever! She has been bubbly all weekend, smiling and hanging out. She hasn’t been napping all day like last week. Instead, she’s chatty and alert. Meanwhile, I’ve been teasing her that she must be part vampire. I get the same response.
— Very funny, Dad.

Jordan went in for an MRI today. It’s the usual process we...

Wed, 04 Jan 2012 09:20:00 -0800

Step #1 - finding a parking spot

MRI days are full of waiting. iPad helps

We try to look calm. We're tense.

My job is to make her laugh

She still gets bored

Wii bowling helps

MRIs take 3 hours. She awoke quickly

After MRI, up to the clinic for consult

Where there's more waiting

By end of day, I'd depleted my iPhone

Jordan went in for an MRI today. It’s the usual process we go through every 3 months. Our nerves are prickly. We expect the worst and hope for the best. Today, we heard that not much has changed. We shouldn’t be more worried because nothing’s worse. And … we have very little to cheer us because there’s no sign of progress, either.

Jordan handled it the way she always does. She got it done. She had the most positive attitude. And she displayed a dignity, grace and poise that few people twice her age could muster. I thought I’d just show you in pictures.

Pills

Mon, 26 Dec 2011 17:11:00 -0800

Pills.
In the morning. In the afternoon. In the night.
Pills with chocolate milk, cranberry juice, mango guava cherry soda.
Oval, diamond, perfect circle,
All on a tea plate (because she deserves that dignity).

Pills to combat the defiant nerves,
Pills to soothe the coward stomach,
Pills to attack the damned cancer,
Pills to stave off the hungry seizures.

The pills render their bill on the hour.
They wait like midwives.
They struggle down the throat,
peppering bitter memories on the tongue,
and make a servant of a mighty warrior.

The pills pill her spirit, and make somber what should be buoyantly sonnant.
Songs of the pills pillowy pillories pillage my sonorous spirit.

Warm Wishes

Sun, 25 Dec 2011 09:29:00 -0800

At this holiday time of year, our whole family is grateful for all the love and support we receive. I’m often asked how it is that we’re so strong. My first response is to say that we draw all our strength from “the girl.” The truth is more complicated. Jordan guides us and gives us the energy to be optimistic and brave. But we don’t travel on this journey alone, and we would be lost without the constant kindness of people we’ve known forever and strangers we’ve only just met.

Holidays are a strange time for our family. No one knows how to behave anymore. We have fragile expectations. We roll through the festivities as easily as we can. This year has been a little harder than others. Neither Jeanette nor I have had much of the holiday spirit. There’s no particular reason. We just don’t feel it. Jordan’s new clinical trial doesn’t help. She’s doing fine, but she sleeps constantly. She is awake for only a few hours every day, and then she’s kind of out of it. It’s gotten worse since the doctors added new medication to try and bring her tremors under control. The new meds are essentially muscle relaxers. She’s very relaxed, but rarely alert. Since many of Jordan’s muscles are still recovering from surgery, the muscle relaxers are creating other problems. She falls a lot because her legs are weaker. And she has “accidents” in the middle of the night that disrupt her sleep and hurt her self-confidence.

Still, when she’s awake she’s loving and as optimistic as she always is. She had a very nice Christmas. And she’s looking forward to the new year. We all are.

She was very excited to receive a new handbag for Christmas.

She’s taken to napping on the sofa. Her favorite way is to wrap herself up in a blanket and curl up in a ball with just her hair peeking out.

Shopping Portraits

Tue, 20 Dec 2011 15:58:00 -0800

We went shopping tonight and The Slayer enjoyed a night out.

Real Conversation

Tue, 20 Dec 2011 13:30:00 -0800

Jordan: Would anyone like some of my pork chop?
Jeanette: No, thank you.
Me: Sure. I’ll have a bite.
(Jordan serves me a giant bite)
Me: Wow! That’s a big bite.
Jordan (without any irony): Well, you have a big mouth.

My Pal

Sat, 17 Dec 2011 16:13:00 -0800

We chatted and hung out tonight. I have been playing with a new lens (an early Christmas present) and at one moment, I said, “Jordan, let’s take a photo.” As usual, she agreed. I love this kid. She’s fun.

The Napper

Sun, 04 Dec 2011 15:31:00 -0800

Nothing intoxicates me more than she—she with the curly locks
and the wicked grin
and the sassy comebacks.

Nothing makes me more giddy than the flip of her fingers
dismissing air and poor logic with irreverence
and a hint of pregnant contempt.

Nothing endears me more than the intensity of her gaze—
the eyes that will not settle for less than truth;
the impatient pools of thought that are filled with abundant interest.

Nothing settles my soul more than the warmth of her hand
trusting mine to guide her and escort her and comfort her
even when it rests in a blissful sleep, just pressing close to mine.

Nothing comes close to this. Nothing.

A Daddy & Daughter Photo Expedition

Sun, 27 Nov 2011 12:51:00 -0800

Jordan and I ventured around our block at twilight. Our mission: take pictures of ordinary things and find life in them. She would take pictures seated in the wheelchair, and I’d stand. We’d look for the differences in our point of view. Here are the results of our photographic journey together.

Jordan’s is on the left, mine on the right.

Mine on the left, Jordan’s (which I think is stunning) on the right

Jordan’s on the left, mine on the right”

Jordan’s on the left, mine on the right. This series is my favorite.

R&R

Sat, 26 Nov 2011 07:47:00 -0800

We’ve been enjoying a restful Thanksgiving weekend in Palm Springs with our extended family. Jordan finally got to the pool and soaked up some sun. I shot photos of her with her brother and her two cousins on Friday.

Chemo is going well. The first cycle is nearly done. Then she gets a week off before going again. She has good days and bad days, but most of the time she’s pretty perky.

Power Outages

Sun, 20 Nov 2011 10:40:00 -0800

My girl is doing quite well, though chemo saps her energy here and there. When she isn’t napping, she charges forward. She went to school most days this week. When she didn’t, it was because she had a hard time getting out of bed. Some days she sleeps until the afternoon. But on others, she rises early. Saturday, she was awake before me and she was quite proud when I came downstairs to find her pecking on her iPad.

—Who was the first one up, Dad?

The pace of treatment hasn’t sapped her spirit, though sometimes she is more reflective. And she worries about all of us. Luc came down with pneumonia this week. He is on the mend, but that didn’t stop Jordan from nagging him to dress warmer or drink enough water.

Rather than tell you about her present state, I’ll just share a few photos from the last week. And this little poem from Emily Dickinson that kept nagging me as I write about Jordan.

To be alive—is Power—
Existence—in itself—
Without a further function—
Omnipotence—Enough—

To be alive—and Will!
‘Tis able as a God—
The Maker—of Ourselves—be what—
Such being Finitude!

Last weekend we drove to Palm Springs to visit my mom, who is staying in a house there for the month. We relaxed and lounged around between eating out. It was superb. Jordan enjoyed the visit.

Jordan is walking more and more. We only use the wheelchair when we know we’ll be out for a long while. Her feet show her effort. They are bruised and battered, but that doesn’t stop her. She loves taking off her shoes and letting her toes tickle the air.

She’s on at least a dozen medications, and that’s partly why she’s tired so much. Her new chemotherapy is a clinical trial that requires four different drugs. When traveling, Jeanette packs them all in a lunch box. Seeing them all in one place can be sobering. But Jordan doesn’t mind. As long as we serve the pills with chocolate milk, she’s cooperative. Better than the IV methods of the past.

Curled up in the hoodie and the fleece blanket is my girl. She sometimes fights the sleep, sitting up in a chair with her eyes battling gravity. I’ll ask her if she’s tired. “Nope!” she’ll say. Then her eyes droop down and her head nods. I usually have to pick her up and carry her to a sofa or her bed. She’ll never go on her own—she tries to convince herself that she’s not tired, and she does a pretty good job.

Family

Thu, 10 Nov 2011 08:19:00 -0800

I love this photo and let me tell you why. My slayer is sitting next to me, wearing her cool shades. But on my other side is the coolest kid — my son Luc. And the shadow of the woman taking the photo is Jeanette. It’s such a wonderful depiction of our family. I love them all and I love this photo because they’re all there.

Being a Hero Ambassador

Sun, 06 Nov 2011 12:45:00 -0800

What a day!

Today, Jordan was invited to be a special guest at the LA Loves Alex’s Lemonade Stand event hosted at Culver Studios. It was amazing! She got to meet Neil Patrick Harris and David Burtka (the honorary hosts of the event), and Jimmy Kimmel (the event’s emcee). We all feasted on delicious food from celebrity chefs, many who flew to LA to participate. And, Jordan gave a speech about her journey for the very first time. She was fantastic.

I have not posted to the Journey for some time because life has been very busy—fortunately, the busyness had little to do with cancer. Last week, I finally delivered the manuscript for my next book to the publisher. Phew! With that out of the way, I am looking forward to sharing more family adventures with my favorite cancer slayer.

Jordan is doing very well. She is back to school and she’s very active. Occasionally, she has to deal with seizures, but (knock wood) she generally feels great. She is certainly in great spirits.

Though she’s feeling well and continuing a great recovery from the August surgery, she’s still doing battle with the beast. In her last MRI, it was hard to tell whether or not the spinal tumor was completely gone. Based on the images and data, it’s possible the tumor is still growing. We certainly think the tumors in her brain are still active, though fortunately, they are not progressing rapidly. This week Jordan will begin a clinical trial for a new chemotherapy protocol. She’s happy that it is all with pills, but she will have to go to CHLA a bit more for blood work and routine tests.

I’m very proud of her and her constant courage. Sometimes, I worry that the realities of living with cancer are taking a toll on her confidence. When she learns of setbacks in her health, she takes the news very hard. It’s not that she feels sorry for herself or allows herself to be sad the way most of us would naturally do. She gets frustrated that she hasn’t done enough to keep the cancer away. Jeanette and I keep counseling her as much as we can. We keep saying, “this isn’t your fault. You’re doing more than most anyone could do.” We think we’re getting through, but then she’ll say something like, “why won’t my body do a better job kicking cancer’s butt?” I feel bad when she says this. I’ve been the guy who keeps propping her up as a “cancer slayer.” I thought it would help (and I think it has) but I wonder sometimes if I haven’t made her think she has more control over her health than she really does.

While she and I were sitting on the steps of the stage this afternoon, waiting to be introduced for our speech together, Jordan whispered to me, “Dad, I don’t have cancer anymore, do I?” Behind us, Liz Scott was sharing the inspiring story of her daughter Alex with the crowd. I think something in that story struck Jordan because her question came out of the blue. I whispered back, “you’re still fighting, honey.”

She looked back at me with concern.

—I have cancer again?

I’ve had this conversation with Jordan before. The trouble this time was that we were seated in front of 300 people and we were about to be called up to talk to the audience.

—Honey, we can talk about this in a little bit, okay?

—I have cancer again?

Her beautiful blue eyes demanded an answer. I whispered back.

—It never went away, I said.

I thought for a minute she might cry, and I was trying to figure out what I’d do next. But I underestimated her again. She put her head on her knees and I put my arm around her. In the background, I could hear Liz finishing the story of how Alex’s Lemonade Stand came to be. I knew it was just a minute or two before we’d hear our names.

—That’s why we’re here, Jordan. We’re here to tell people about how you keep kicking cancer’s butt.

She gave me a very small smile, and then it was our turn to share our story with the crowd.
During my speech, I looked over at Jordan a few times. She smiled and stood proudly. When it was time for me to introduce her, she stepped in front of the microphone, thanked everyone for coming to the event, and enlisted their support.

—Let’s kick cancer’s butt together, she said.

Then she talked about having a birthday party in the hospital and making new friends. She was brilliant and I was very proud of her. We all were.

—

I do a lot of speaking, but I don’t usually get to speak about Jordan’s Journey. It was actually hard to prepare my remarks, but here’s how I introduced her:

This is the best way to drink lemonade, here on the steps of Tara surrounded by so many of our heroes. I’m excited to be here and I’m proud that I get to introduce you to Jordan. You’re going to hear a few words from her in a minute, but before you do I want to warn you…

A lot of times, when I introduce Jordan to new people they’re a little unprepared for her energy. She’s a force to be reckoned with. She often likes to tell people all the nicknames I’ve called her since she was an infant. She’ll tell you that I call her snuggle bug, snicklefritz and sugar bug. But she often says them so fast that they come out like one long word that sounds like supercalifragilisticexpialidocious. By the time you’ve sorted it out, she will have moved on to a new topic. That is the beautiful quality that I think I love most about my daughter: her take-no-prisoners attitude. She is a force of will and that has quite literally saved her life.

You see, Jordan has fought cancer for over eight years. At 13, that’s more than half of her life spent in treatment. She’s battled the beast with chemotherapy, with radiation, and with more surgeries than we care to remember. Brain and spinal tumors are tenacious beasts. But they really pale in comparison to the awesome strength of my sugarbug-snicklefitz-snuggle-bug.

For example, the day Jordan woke up after cancer forced her into a week-long coma, she simply smiled at me and asked, “what’s for breakfast, Dad?” She was back at school a week later. When rare complications from chemotherapy crippled her and put her in a wheelchair, Jordan not only learned to walk again, she scaled a rock wall on a family vacation. Jordan amazes us every day. She never gives up and she seldom lets cancer get her down. She really does make lemonade out of life’s lemons. That’s why I started blogging about all the things she does on her journey, because her spirit is infectious. She’s my modern-day Auntie Mame—a fighter who believes that life is a banquet and most poor suckers are starving.

Let me tell you another one of Jordan’s nicknames—one that she and I coined together. We say she’s a cancer slayer. We came up with this title last year when, after a brief period of remission, her doctors discovered a new tumor growing in her spine. The scariest part was the fact that she needed a risky surgical procedure. We were told that there was a 50/50 chance she would be paralyzed from the waist down just by having surgery. We discussed what to do as a family, and even Jordan agreed that the risks were far too great if we didn’t operate. For years, Jordan’s been proud to tell anyone who’d listen that she’s “kicking cancer’s butt.” When she gave her approval to proceed with surgery, we decided she’d kicked it enough to be known officially as a “slayer.” We even made t-shirts.

Alex’s Lemonade Stand Foundation is one of our favorite causes because it attracts a community of slayers. It’s founded on the belief that we can find a cure for all children with cancer. While there are many children who wake up every day determined to kick cancer’s butt, they thrive when they know they have supporters like all of you—people who generously give time, money and so much encouragement. Together, we can slay childhood cancer. Thank you for all that you do, and thank you for being here today.

And now, I’d like to introduce you to my slayer…

Just Because

Sun, 02 Oct 2011 16:30:00 -0700

I have been holed up in a room finishing chapters for my book for the last 3 weeks. This morning, as I was plugging away, I got this photo from Jordan in a text message. When I asked her about it later, she said, “I just thought you might like to see the outfit I picked out.”

I did.

Don't Worry

Thu, 22 Sep 2011 17:27:00 -0700

I think I worried some of you because I’ve been so quiet. Things are good. I’ve been completely preoccupied in the final sprint to finish my book … and Jordan has continued her inspiring recovery. She goes to school nearly every day. She uses the walker and sometimes the wheelchair, but mostly she tries to do more and more with her legs, and they mostly cooperate.

She came downstairs tonight to sit with me for a bit. I love our conversations. They’re pretty random, but they’re also punctuated with periods of silence, where we just sit together and enjoy each other’s company. I look over at her and she smiles back. That makes me smile. A vicious, smiling circle ensues. Then we gab about something topical.

It’s good to have her home. It’s good to have her being her.

Look Who's Back to School

Tue, 13 Sep 2011 09:22:00 -0700

One week after coming home from over a month in the hospital, Jordan is back to school today. She was very excited (as if you couldn’t tell from the photo).

Home Today

Tue, 06 Sep 2011 04:05:00 -0700

The first text message buzzed my phone at 6:56am. I was at the office already, rewriting a chapter for my book. The message was from Jordan and it said, “JV.” This is her code she sometimes sends me when she wants me to call her, but it is just as often sent when she’s bored and wants to say hello. Because it was so early, I assumed it was the latter and sent back the word ‘love,’ as I often do.

Two minutes later, another text message streamed through—this one a picture of her mother sitting in a cafe. I thought it was odd, but I played along. I took a picture of myself sitting at my desk, waving to her. “Yep,” I thought. “She’s bored.”

Fifteen minutes later Jeanette texts me. “Jordan’s coming home today.”

I will try to temper my frustration at the always spontaneous and frequently disorganized crew at Childrens Hospital so that I can do a happy dance. My daughter is coming home today. Not on a day pass. For good. After evaluating her this morning, her lead doctor has decided that she’s strong enough to continue her therapy as an out-patient. We are thrilled to have her back. Thank you to everyone who helped us get through the last month. Jordan appreciated all of your thoughtful messages and frequent visits.

Photos from the first 48 hours [Footnote: For some reason,...

Fri, 05 Aug 2011 00:00:00 -0700

She was all smiles at pre-op

Until time to wear the hospital gown

At least she could wear her socks

Surgery required more than 5 hours

She was smiles in post-op, too

Within 24 hours she was on her feet

Her right leg is very weak

But she never gives up. Amazing!

As long as she keeps smiling

Photos from the first 48 hours

[Footnote: For some reason, Tumblr is showing this in my timeline around December. Lest you should worry, these are photographs from Jordan’s surgery in August, 2011.]

Photo

Wed, 23 Feb 2011 00:00:00 -0800