Riding for Roses

Never discount the Rolodex Effect.

It turns out there are at least two feedback cycles. One is that, being in the media makes you worth covering. The other (stronger I believe) is that Spencer (and I, his publicist) wound up in the rolodexes of several people at Children’s Hospital of Austin and the Lance Armstrong Foundation as being willing to talk to media and at least tolerably photogenic. As a result of the Rolodex Effect, I received a couple of phone calls early in the year.

One call was asking me to participate in St. Baldrick’s in Austin. St Baldrick’s is an event where people shave their heads to raise money for pediatric cancer research. As soon as Spencer heard about it, he challenged me to see who could raise more money. He kicked my butt. Then he shaved my head before a professional shaved his. The St. Baldrick’s web site has an article about Spencer shaving his head for charity that includes a pointer to the KEYE News Story about St. Baldrick’s here in Austin.

The other call was asking us if we would be willing to be taped and interviewed by KLRU, Austin’s PBS station, to do an episode of their Austin Now news magazine. They will be airing an episode in June covering pediatric cancer as a tie-in to the airing of Lion in the House – a compelling documentary on pediatric cancer that follows several patients from the moment of diagnosis. KLRU dropped by the St. Baldrick’s event and shot some B roll in preparation for more to be done in April.

Come back soon for step 5 – our busy April.

Tour Watch 2005 turned out to be a critical part of Spencer’s fundraising success, along with a raffle at my favorite coffee shop, the “It’s a Grind” at 620 and Anderson Mill in Austin. I blasted out notes to the reporter at KEYE who had done a great story about the Tour Watch and told her Spencer had succeeded – in spades. Spencer had raised $32,543 for the Lance Armstrong Foundation and we were headed down to Austin’s Hyatt on Town Lake for a weekend with other fundraisers, many of them cancer survivors. Spencer loaded up with a record 52 wrist bands to start the weekend (and the interview). Leslie Coons from KEYE met us at the hotel where, before we even got in the front door, Spencer was giving away wrist bands. Spencer made me walk away from the interview so he would not be nervous.

The Ride for the Roses weekend is an incredible thing. As a yellow jersey rider, Spencer attended several events. Every event is attended by cancer survivors and people who raised large amounts of money to support the Lance Armstrong Foundation.

Saturday morning, they held a big event for kids with an adventure race at Austin’s Auditorium Shores. Spencer brought his friend Oliver to participate in the kids’ adventure race. Before it started, we did a live feed for one of the morning news shows, inviting people to come down and participate in a day celebrating cancer survivorship. After the kid event, we went to the Livestrong Village and got a couple of books signed. After Spencer got Linda Armstrong Kelly to sign his copy of her book, he noticed that Grace and Isabelle Armstrong did not have wrist bands on that morning, so he gave one wrist band to each of them.

I could, and at some point should, go on and on about the events we attended and the people we met at them. It is an indescribable good to share stories and spend fun time with a group of dedicated cancer survivors and supporters. I believe that a critical element of thriving in cancer survivorship is attitude. Attitude is everything. It might not make you live longer, but it will make whatever life you have worth living.

Spencer got his dream that week. He got to meet Lance and go for a bike ride with him. Thanks to the great folks running the Peloton Project at the LAF there was a short, slower ride for kids and cancer patients still in treatment. We got to ride with that group, listen to Robin Williams joke as he rode behind us, and we beat Lance Armstrong up a hill just outside Austin¹. By the end of the weekend, Spencer had one wrist band on each wrist, having given the other 50 (and then some since we had a bunch in our luggage) to people who seemed to need one.

Stay tuned for more of the oddball thing that is Spencer Sartin’s unpaid Media Career. I filled out the paperwork last night. The big news should be official tomorrow or Thursday. Step 4 in the contorted path will be posted tonight.

¹ Spencer requires that when I tell this story, I also disclose that at the time we beat Lance Armstrong up a hill, Lance was, in fact, pushing us. Looking at the photo however (which I don’t yet have rights to post here), it appears that Lance may actually have been holding us back. I think we had him beat.

Apparently my Google page rank is just high enough that some people find my blog on purpose. Two people found the 24 Hour Fitness entry, leading to an exciting July.

First, Paul Walhus, who attended the 24 Hour Fitness event contacted me with pictures. Paul was organizing Tour Watch 2005 – an event at Austin’s Central Market to watch the Tour de France. I hooked up to do cancer awareness raising and fundraising for Spencer’s attempt to raise $25,000 for the Lance Armstrong Foundation and a private ride with Lance. Second, a producer working for the Discovery Network on a show about fans of Lance got in touch with me. For extra coincidence points, I had just added email contact information to my blog which enabled that connection. They were coming to Austin to tape and wanted to include us. Their visit was to be before and during the start of the Tour de France.

The Discovery crew came and interviewed all of us several times, filmed our day to day activities, observed at a class we took at Wonders and Worries, followed us to a visit to the oncologist, and gave Spencer an afternoon special tour of the Driskill Hotel. Children’s Hospital of Austin is very supportive of the media attention and the Discovery Network crew work with PR and Child Life specialists in setting up the filming so that there are no privacy problems. At the oncologist visit, Spencer’s counts had plunged faster than we had expected and he went on limited exposure restrictions. He still wanted to visit Tour Watch. He was amazing. He played computer games with kids and our State Representative, Mark Strama. He interview with several TV shows, including Dutch television, and was also mentioned in the Austin American-Statesman article about cancer survivors inspired by Lance and the Tour Watch event. In addition to all of the awareness raising, Spencer managed to raise several thousand dollars in donations to the Lance Armstrong Foundation.

In May, 2005, Lance took a tiny break from his European cycling schedule to come to the states. Among the things he did on that brief visit was attend an Austin opening of the newly branded 24 Hour Fitness Lance Armstrong Sport Club. Spencer wanted to go and see Lance. He loaded up and was wearing a total of 38 wrist bands. He gave a couple away and received one as a present from a staff member resulting in 37 as the official count. Somebody also gave him a Discovery Team Jersey which he immediately put on over his shirt. With Lance, plus JB and Sandy there was a lot of media attention. Decked out in Discovery Kit and the buried in wrist bands, Spencer got some attention as well. It was a kick being on the local news.

Naturally, I bragged about it on my blog so my seven regular readers (mostly relatives) could hear about it.

Come back tonight to find out the second step in Spencer’s media career leading up to fun and excitement this week.

I have become Spencer’s publicist. I must not be very good at it since all I get is unpaid gigs, but they are all helping publicize the fight against cancer of all kinds.

It all started quite by coincidence. Followed by another coincidence. And another. So, let’s play “six degrees of Spencer Sartin” and run through the chain. It culminates this month with a fun surprise expected May 3 or 4.

Spencer wears the wrist bands. He has since before they were cool and before he had cancer. He started with one on each arm and each leg. That was before he was diagnosed. After he was diagnosed, we started buying them by the box to give away to people. That had two purposes. One was to raise awareness and the other was to raise money. Spencer wanted to raise $25,000 and ride with Lance in private bike ride before the Ride for the Roses in 2005. Spencer would load the wrist bands on his arms and legs to give them away, with wrapped ones somewhere nearby for those who might be concerned with getting Spencer cooties.

Come back to hear the rest of the story. I should be posting 2-3 steps per day until the excitement is unbearable by mid-week.

This is one of those articles that I should just fork a separate personal blog for. Jacob was diagnosed last Wednesday with asthma after a second attack of breathing problems in a month. We missed a hospital admission, but not by a whole lot – Dr. Cardwell says we would have been in the ER within 12 hours tops. Jacob basically was moving no air in his left lung by the time I got him to the doctor. It is always interesting to watch how rapidly children can adapt to medical hassles. We’ve seen it repeatedly with Spencer and Jacob is the same way. For the first breathing treatment, he screamed the whole time. Twenty minutes later for the second treatment, he was calm and let me hold him with the mask over his face. At home Wednesday before bed he excitedly said “breathing medicine” and held the mask to his face while I got bedtime stuff ready.

For now, we’ve got it under control and, barring a bad attack, we will be doing three months of regular nebulizer treatments before we go back to the doctor and reevaluate. Live is ongoing medical fun at our house.

I had a powerful experience today. Spencer and I got to read parts of the LAF Manifesto for a new video. It will premier at the Livestrong Gala on May 19, 2006.

After Saturday’s taping, I assumed I would take Spencer in, run him through wardrobe, bypass makeup, drop him off in the studio, and then have Spencer ask me to leave. This is cool. This is the plan. When we arrived, someone on the crew asked me if I would mind reading. While Spencer watched Tom and Jerry cartoons, I filled out a release, went through wardrobe, got a little makeup (my face being not as naturally delightful under the lighting as Spencer’s, required a small amount of makeup), and got a script which lists a bunch of phrases from the LAF manifesto.

The plan is simple. Spencer will sit in my lap. They’ll tell us where to look (usually right at the camera). The director will say who should talk read one phrase from the manifesto and whoever is to talk repeats using the same emphasis and timing as the director. The lines are out of order, and free of context. They are picking the lines they think will work for us in the final product. The lines are not the same as the script because since the printing of the script, they’ve changed their minds about who will say what. The phrases are out of order. Sometimes we repeat the same phrase a couple of times. Sometimes they shoot a different angle or zoom of a phrase we said earlier. The plan is fluid. This does not matter since we get fed the lines one at a time. I get the first couple of lines and then Spencer starts. After a few lines, I am basically in a trance. It is almost overwhelming. Each phrase triggers memories of Spencer’s diagnosis, treatment, and spirit.

Knowledge is power.

I remember sitting with Rachel in the office on the Green Unit at Children’s Hospital of Austin, going over our notebook of information about cancer treatment and the first ever treatment roadmap.

We believe in life.

Enchanted Rock. The first time Spencer climbed it. Carrying Spencer around the loop trail, making a new acquaintance, and sharing stories about cancer. Enchanted Rock. Caving with Spencer, and Spencer hiking all the way without being carried.

Acknowledge the rage.

Sitting up late at night. Mad. Scared. Thinking how unfair it is. Turning that energy into motivation to raise money, to write advocacy letters, to give something back.

Unity is Strength.

Friends. Everywhere. All the time. Taking care of Jacob. Making meals. Driving Rachel to the hospital. Sharing hugs. Just being there.

With kids, friends and neighbors.

Our glorious misadventure getting stuck in a creek bed and sharing Spencer’s story.

Knowledge is power.

Calling and emailing a friend who is a pediatric oncologist and asking her questions about Spencer’s diagnosis and treatment. Researching ALL on the web. Investigating long-term side effects of chemotherapy.

Take no prisoners.

Spencer, bald and wearing a surgical mask to protect himself from exposure, walking around Central Market asking people for donations to support cancer survivors.

Unity is strength.

Thanksgiving dinner four short weeks after Spencer was diagnosed. Having family close. Spencer’s cousins making him feel normal despite all.

Attitude is everything.

Spencer moon faced from steroids, 10 pounds of weight gained in three weeks, not always able to walk from his bedroom to the kitchen table, and he has a request. He wants to restart his martial arts lessons.

Live Strong.

Spencer wearing 52 wristbands on his arms and legs, giving them away to anyone and everyone. Spencer giving Livestrong wristbands to Grace and Isabelle Armstrong after Linda Armstrong Kelly signed his copy of her book.

We finish together. The director says, “How about together? Rob and Spencer. Live Strong when I say three. 1. 2. 3.”

Live Strong.

Holding out for Hero is a Spring fashion show on Wednesday, April 19, 2006, at Barcelona in Austin, TX by Team in Training rider Patrick Mayes to raise money for the Leukemia Lymphoma Society. The show will be featuring clothing from Factory People, live music by Evan Felts, DJ Trini, and door prizes. Doors open at 9 PM. Five dollars before 10 PM, seven dollars after.

Barcelona is an undergound (figuratively, not literally) dance club in Austin. Check out the mid-week dance scene. View some great fashions. Help cure deadly blood cancers. What better way to spend a Wednesday night. Heck, if I weren’t doing Mr. Mom at home with a toddler and a six year old cancer survivor, I’d probably go myself. It’s 21 and over, so I can’t drag the boys with me.

The Lance Armstrong Foundation is seeking a temporary Fundraising Coordinator to work through June 15. Read the LAF temporary Fundraising Coordinator job description for more details, including how to apply.

Spencer is a little afraid of certain parts of regular oncologist appointments. Mainly, he hates needles and procedures. I maintain that this is simply a sign of sanity. It is perfectly natural and rational to be afraid of being poked with sharp objects and knocked unconscious (so you can be poked harder with less sharp objects).

When Spencer was first diagnosed, probably the worst part for him was all the “pokes” before he got his port installed. I wrote about that when I first wrote about Spencer being diagnosed with leukemia a year and a half ago. Since then, the fear mutates. For a while, we were not allowed to say the words “shot” or procedure and had to refer to them as “sh” and “p”. Of course, after a while, all of his fears now get activated by the once acceptable utterances, so “sh” and “p” are forbidden. Instead, Spencer has developed his own sign language for “shot” and “procedure”. Spencer Sign Language for “shot” is hand held in front of port area (below his left collar bone) with palm facing himself, index finger pointing down, other three fingers closed, and thumb folded over the middle finger – then move the hand down, imitating the act of inserting a needle into his port. Spencer Sign Language for “procedure” is two hands in pointer position (index finger pointing, others closed) with index fingertips touching and then rock the two hands so the index fingers rock like a bed rocking someone to sleep. I should video tape these and post them.

Having found a new coping mechanism, Spencer has relaxed more about shots and procedures – until the neural connections get made to the new gestures. It is fascinating to watch this, and other coping mechanisms, develop as he finds ways to maintain control of his fears instead of letting them rule.

Today, we have a regular checkup visit to the oncologist and KLRU will have a crew there filming some footage for an issue of “Austin Now” news magazine to air in June. The story ties to “Lion in the House” which will be airing on KLRU in June. More on that later.