January 2012
3 posts
What's Up with the Site
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...
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The Nourishing Pint
, 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,...
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December 2011
6 posts
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Pills
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....
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Warm Wishes
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...
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Shopping Portraits
We went shopping tonight and The Slayer enjoyed a night out.
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Real Conversation
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.
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My Pal
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.
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The Napper
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...
November 2011
5 posts
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A Daddy & Daughter Photo Expedition
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...
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R&R
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...
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Power Outages
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...
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Family
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.
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Being a Hero Ambassador
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...
October 2011
1 post
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Just Because
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.
September 2011
3 posts
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Don't Worry
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...
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Look Who's Back to School
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).
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Home Today
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...
August 2011
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Day Pass
Jordan “Running Free” on Day #24. She got a “day pass” to go with her family to The Grove for movies, shopping and fun.
It’s been a long week. I don’t even know where to start. Jordan is still at CHLA and doing pretty well. When I have more time, I want to share some great highlights from the week. There’s so much to share — like how she met a...
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What a day!
While it’s true that I like to write, I thought it would be better to tell you about Jordan’s 13th birthday in pictures. I’ll only write five words without a photo: she had a great day! Thank you to all who worked so hard to make the big teen transition a big event and a fabulous tea party. So many people to thank, but I want to call out a few. First, thank you to Melody Griffith...
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Big 13
She has been waiting for this day all year. To be technically accurate, she has been waiting for it for a couple years, telling people who asked her how old she was that she would soon be a teenager when she was just eleven. Jordan relates teen status as a magical transformation. In her mind, she joins an elite club today and she’s pretty excited about it. I will post updates from the...
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Shutterbugs Video
The Pablove Foundation released a series of videos about the Pablove Shutterbugsprogram. Jordan was an inaugural participant and one of the videos features her. Check it out … and while you’re at it, consider supporting this really awesome program that allows children living with cancer to express and develop their creative voices through the art of photography.
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Chocolate
Jordan loves the therapy dogs. Chocolate got right up on the bed with her. Love!
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I Wish
She shows her many scars to her grandchildren and they whisper and elbow one another with rapt interest. She meets her brother for dinner and they spit and spend and speak of family memories. She takes her mother out for a day of shopping and a lunch with bubbles and they share moment after moment that can’t be captured well. She looks down on little blessings that found her most...
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The Tedious Puzzle
Free of the cables and monitors, Jordan’s spirit perked up. She will be at CHLA for some time to come.
When we arrived the room was empty; just a bed with fresh sheets watching over a lonely window. All of Jordan and Jeanette’s things were there, just not the girls. Before my mom and I could worry a nurse peeked in and told us that Jordan was taking a shower. Our shoulders relaxed...
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The Troubles of a Superhuman
Jordan enjoys a teen mag sent by our friends at Siegel+Gale I suspect that Superman feels this way after he’s expunged the kryptonite only to find Lex Luther has hatched another diabolical plan. In his head, he must think, “good grief!” Perhaps every superhero has a Charlie Brown alter ego. That’s how Jordan must feel. It’s not enough to slay cancer. You have to...
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Yellow Ribbons
QUICK UPDATE: We thought Jordan might come home today. Unfortunately, she still has a ways to go on her mobility. Her team doesn’t think she would be safe back at home just yet. When I got the news this morning, Jordan was in a stairwell with physical therapists practicing climbs. She’s motivated and working hard, but not ready to bid the hospital farewell. Tomorrow, she’ll be...
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Magic
The Journey in Photographs: Images from the first 48 hours
Strictly speaking, I don’t believe in magic. Oh, I like to watch a good sleight of hand, and I’ve been known to label scientific progress as “magical” a time or two, but I’m one of those guys who believes every unexplained phenomenon can be logically explained somehow. I can’t explain Jordan’s...
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Charming
She’s resting comfortably in ICU. Her blood pressure is steadily making its way back to normal and her right leg continues to strengthen. Given all the fear and anxiety we started the day with, we’re feeling very good. Before she dosed off for a nap, she let me take this picture. She has been smiling a lot. She also keeps negotiating with her medical team, trying to convince them she...
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Recovery
She’s awake in recovery. We’ve been chatting. First words out of her mouth: I want to change into my pajamas. She has to stay flat on her back for 8 hours. She’s cooperating, but not pleased. Her blood pressure is low, so she may move to ICU before a regular room. So far, her right leg is unresponsive. She is able to move her left and wiggle the toes on her left foot. It’s...
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Relief
We just met with the surgeon. Jordan still has about an hour to go. They are closing her up. The surgery appears to have been a success. He was able to remove the tumor. She appears to have some weakness on her right side. We won’t know how permanent that is until later. We are relieved that she handled the surgery so well and that her excellent team was able to remove the beast!
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215
The nurse from the O.R. just called. Surgery is still in progress and “going well.” We don’t know yet whether or not the team is able to remove the tumor, but we were told that they are in phase where the lights are out so that the doctors can work by microscope.
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132
I look up to the monitor in the waiting room and find her number. #7471. Next to it, the number 132. One hundred thirty two minutes into surgery, and so much more to go. One of the surgical nurses called me on my cell phone shortly after the procedure began. —I just wanted you to know that we started about 10 minutes ago and everything is going great. She promised to call later with an...
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She is in the operating room. She was nervous, but brave as ever. Now, we wait. We may get a call from the lead nurse when the procedure begins.
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Pre Op
Pre Op, a photo by larryvincent on Flickr.
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Everything seems to change when the two giant, automatic doors open to allow you entry to pre-op. Been here before. Still an education in gravity. The mental kind. Here’s where our decision becomes real. Jordan is fine. Watching tv.
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Day Zero
We are in the waiting area for pre-op. Jordan is perky. She has already had me read her two books and she’s now sampling video games. I think she took my advice to heart. She’s letting Nettie and I do all the worrying. Her only complaint so far is that it is taking too long … and she hates the hospital pajamas. She heads up to pre-op in about 15 minutes.
July 2011
6 posts
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Gearing Up
Until I held her in my arms I hadn’t been bewitched. She with the perfectly rounded head, the bowed lips, the eyes that lifted your dreams. I learned about humility that day. I became a daughter’s dad. I had been blessed before. No feeling like welcoming a son, they say. And it was glorious. But with this angel in my arms I thought the lottery had enriched me twice. I get asked how...
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Update: Jordan's Surgery
Surgery has been scheduled for Thursday, August 4th. She’s booked to stay in the hospital for five days, unless her recovery goes really well and she’s able to go home earlier. Many of you have asked how you can help. Thank you. We’re putting a game plan together. It is likely that we’ll need the most help once she’s home. In the meantime, please keep Jordan in your...
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Without Many Words
There’s a way she looks at me sometimes that puts me so at ease even though I’m a bundle of nerves. I could say that it is a wisdom beyond her years, but I know that it is actually her own nerves battling her resolve. When she is truly troubled about something—something that requires her to quiet herself and wander through her thoughts—her eyes take on the most lovely...
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The Worker
She had three seizures today. She maintained consciousness through them all, but her body spasmed so severely that her shoulders jerked forward and her legs kicked. Her eyes dilated wide for an instant, then shrunk as she observed it all. She told us she was scared as she watched her body behave on its own. We held her; placed our hands on the jerking limbs to try and comfort them towards...
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Another Scan
Jordan is back at CHLA today for her quarterly MRI scans. As I write this, she’s enjoying a great nap thanks to her usual propofol cocktail. She’s had some rough times over the past few weeks. While there’s no evidence of new tumor activity, the many tumors of the past have wreaked havoc on her system. She has seizures almost every day. They rarely last for more than a few...
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Surveying
I didn’t stage this one. She came down and started talking to me … and I quietly grabbed my camera. She didn’t care that I was framing her while she talked. I love this way about her. I love when she just hangs out with me.
June 2011
4 posts
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Action-Packed Weekend
We haven’t received the report from Jordan’s PET scan on Wednesday, but we’re also not expecting anything surprising. After a day’s rest, Jordan was back to school. She had a very busy weekend. Friday night, she performed in her class play about American History. She remembered her lines and sang with gusto. On Saturday, she carried on with my good friend Mary Ann Mooney...
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Radioactive
A lead partition separated us from Jordan after the radionuclide tracer was injected. Here are the rules, Jordan. After we give you this medicine, you can’t talk. You have to lie still. Jordan squinted one eye as she often does when processing a request. This was new information. We didn’t know that she’d have to go for nearly an hour without talking or moving around. Jordan...
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Photo Texts from the Monkey
One of many self-portraits Jordan sends me now and again. Every once in awhile, Jordan sends me text messages from her phone. As she cannot read, she often sends me words she comes across. I’ve had texts that read simply, “Oreos,” or “Barbie.” Sometimes she just sends me her initials or she sends me the word “love.” I love them all. But my favorite texts...
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A Tale of Two Jordans
[dropcap style=”2”]To[/dropcap] tell you the truth, we were absolute cowards. The boy and I stood in the middle of the 3rd Street Promenade finding ways to avoid our assignment. Our family was on a photographic field trip. Each of us had to approach a complete stranger and ask if we could take their portrait. We only had to get one, but the goal of the assignment was to capture as many...
February 2011
1 post
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