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 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…