SpencerWon

Hi, this is Spencer. Today I finished third grade at Canyon Creek Elementary. I am healthy now, but four and a half years ago I was diagnosed with acute lymphoblastic leukemia. I am one of the lucky ones. My leukemia was very treatable and after 3 years and 2 months of chemotherapy, I completed treatment. My parents had good health insurance and my Dad was able to stop working and spend time caring for me. When my immune system was shut down, we would go on hikes and bicycle rides to stay away from people, but remain active. Now, we go on bicycle rides to raise money to fight cancer.

In 2004, my Dad and I rode 40 miles with my Dad towing me on a trail-a-bike to raise money for the Lance Armstrong Foundation to help in the fight against cancer. We raised over $32,000 that year. Every year since, I have continued to ride and raise money. In 2006, we rode 40 miles again. In 2007, we rode 50 miles on a tandem. In 2008, I rode 45 miles solo!

This year, we are doing two LIVESTRONG Challenge rides and I need your support to reach my $3000 goal for the Seattle ride by June 18. My Dad and I will be riding 70 miles on the tandem. This Fall I will ride 65 miles solo in Austin, though I will let my Dad draft and be my official guardian.

Donate today to fight cancer

Follow our progress at the SpencerWon blog or follow us on Twitter @spencerwon

More than 12 million Americans are currently living with cancer, and more than 1.3 million people in the U.S. will be diagnosed with cancer this year alone. It’s time for us to do something about this. We must unite to make cancer a national priority, and the Lance Armstrong Foundation provides us with an opportunity to do just that. Founded in 1997 by cancer survivor and champion cyclist Lance Armstrong, the Foundation’s mission is to inspire and empower people affected by cancer. It seeks to spread its goal and mission through grassroots networks all around the country that subsequently demand from this nation’s leaders increased resources to provide open access to preventative care and screenings, more opportunities for research, and improved quality of life for cancer survivors everywhere.

Thanks,

Spencer Sartin

P.S. The Lance Armstrong Foundation has worldwide programs to help with cancer awareness and survivorship issues. Your donation will help the 12 million people who will be diagnosed with cancer this year to face the disease with the best chances. Please give today at http://seattle09.livestrong.org/spencer

I’m still coming down from the combined endorphin and proud parent high from Saturday.

Spencer and I participated in the Hill Country Ride for AIDS this year for the first time. I serve on the board of the Care Communities, the organization that runs it and is also one of the 10 beneficiaries. Since Spencer is nine, immortal, and has infinite energy, he had set a goal of riding 65 miles.

Friday night was registration, new rider orientation, and pasta dinner. We ran into a bunch of friends, some old some new. A couple of people mentioned seeing Spencer in the LIVESTRONG Challenge video so word is getting out. We got up bright and early Saturday morning. I had already loaded the bikes in the new SUV, reminding myself once again that I need to get locks for the roof racks so I can preload the bikes there without risking loss. We headed to Rudy’s BBQ for breakfast tacos, Spencer’s dream pre-ride fuel.

We ran into Chris Brewer form the Lance Armstrong Foundation after we unloaded the bikes and Spencer found a bulge in his rear tire. Chris strongly advised getting it fixed (no brainer there), and we headed over to the Bicycle Sport Shop truck. Unfortunately, they had no 650×23C tires, but we opted to put in a new tube and hope for the best.

Riding out, Spencer was totally psyched as usual and trying to be faster that all of the 20 somethings, so the first 10 miles went by pretty fast. I would like to repeat here and for the whole world to know that at 30° 32′ 9.08″ N, 98° 15′ 49.68″ W, 09:46 on April 25, 2009, my son, Spencer Robert Sartin (age 9) beat me up a hill while I was trying my hardest to catch him. My heart rate was right at my anaerobic limit and I was chasing him hard as he crested the hill. Afterward, he paused reluctantly to pose in the bluebonnets for a photo recording his achievement.

The weather was wonderful for riding: cloudy, not too hot, tiny sprinkles of rain every once in a while. We had a bit of wind (15 MPH, gusting to 25) from the south which was headwind most of the time. We rode, and eventually Spencer settled to a more reasonable pace and kept at it for the long haul. Despite constant comments of amazement from our fellow riders, it wasn’t until we hit the 39.6 mile mark at the “Chicken Ranch” rest stop and the turnaround for the 65 mile course, that it really sunk in for me what he was accomplishing. The rest stop folks had bandanas to give out to everyone to prove they’d been to that outpost and a small pile of plastic Sheriff’’s badges for any kids who got out that far. Spencer was the first (and I believe last) recipient of one of the badges.

After lunch, we hit a little hill they call Ski Hill or Mt. Everest. It’s a tough little climb and I was chasing Spencer again and in my granny gear. Spencer has only the two chain rings and was toughing it up. Right before the top, it gets super steep for a bit and Spencer was zig-zagging up and refusing to give up. Refusing so hard that he fell over when he hit his limit. He was briefly frustrated and angry, but one of the volunteers gave him a short push to get restarted. He was still mad when we got to the top of the hill because he “couldn’t ride all the way up,” but that got a little better when I pointed out all the people behind us walking, or waiting for a SAG ride to the top.

Out of the Hill Top water pit, we had an amazing decent and turned to the north, putting the wind finally at our backs and just sailed effortlessly for the next 5 miles. As we hit the turn at the one mile to go mark, I paused to page Rachel and Jacob so they’d know we were coming. The caboose caught up with us and Spencer was ready to try to sprint ahead to catch the rider in front of us until I convinced him that it seriously was an honor to finish last in this ride. We rode in with a caravan of support vehicles behind us celebrating our finish.

The post-ride ceremony at the Hill Country Ride for AIDS is amazing and I was just buzzing with pride the whole time. I think I may have convinced Spencer that the comments from all those passing riders telling him how amazing he is were honest and heartfelt. I also agreed that when we buy a shorter crank (on the advice of Kevin Livingston when we had a session at Pedal Hard), we will switch his bike to a triple (after all, he needed it for 20 feet on Saturday’s 65 mile ride). I may also have convinced him to set our sights on 70 (tandem) for Seattle and 65 (solo) for Austin, but to focus on reducing our time and have the longer rides wait until he’s double digits. It really will be OK if his first century is when he’s 10 or 11.

You can still donate to the Hill Country Ride for AIDS and support 10 Austin area nonprofits that help people with HIV and AIDS.

We are busy preparing for a cancer advocacy event called Spokes of Hope, that will be nationwide. Austin event will be in September. More details to come here as they become available.

This morning Spencer and I went to Pedal Hard for some training on the CompuTrainer and a live news feed on News 8 Austin. We were on three times live for between 6 and 7:30 AM, when our TV crew got pulled to cover the severe weather. The management and staff at Mellow Johnny’s were incredibly helpful - letting us in to their facilities in the wee hours of Friday to keep us out of the rain. Kevin Livingston at Pedal Hard set us up to do indoor training while doing the live spots for News 8 Austin. He gave Spencer some incredibly helpful advice on form and suggested a shorter crank arm.

We are doing two fundraising rides over the next few months. The Hill Country Ride for AIDS benefits 11 Central Texas organizations that help prevent AIDS or support people with HIV/AIDS. The LIVESTRONG Challenge raises money to support the Lance Armstrong Foundation in the fight against cancer.

If you are interested in donating:

• Donate Spencer’s HCRA
• Donate to Spencer’s LIVESTRONG Challenge ride

The taped segment of us working with Heidi Zhou on reminding her how to ride a bicycle up Mount Bonnell is called Father-son Duo Cycles Past Cancer.

Thanks! We’ll have more here soon.

We are planning a cancer advocacy event here in Austin in September and need your help. Please visit the Spokes of Hope LIVESTRONG Army Austin signup page to join us.

In September, 2009, we are going to hold an event to send bicycle riders on their journey to Washington, DC, where they will join cancer advocates from all over the country in a day of visits to Representatives and Senators to promote improvements in cancer diagnosis, treatment, and survivorship. Riders from all over the country will be participating in other local Spokes of Hope events all leading up to the October 2, 2009, LIVESTRONG Day.

Currently, we are in the very early planning stages and this is your opportunity to help shape the event. We need people who can help locate an appropriate venue, contact potential sponsors, ride (or recruit riders), recruit participants in the kickoff event, and assist with other logistics. We are planning this as a small ride with the event focused on cancer diagnosis and survivorship. Please join Spokes of Hope LIVESTRONG Army Austin signup right now.

Mashable is doing a fundraiser to fight leukemia. The have partnered with 12 Seconds to do 12 to fight leukemia. Spencer just did his:

#teammashable 12seconds Charity Challenge on 12seconds.tv

If you had the chance, what would you say to cancer?

On January 21, Spencer and I got to head to East Austin and drop into a cool little studio to do some filming for a LIVESTRONG Challenge promo. Today, the results are out.

We’re up for a Challenge in Seattle in June and another Challenge in Austin in October. Are you up for Challenge? My nine year old leukemia survivor son is targeting 90 miles in October. Seattle is part of training, either 70 or 100 depending on the course and which bike(s) we bring. By the time he’s twelve, he’ll probably want to do all four. Sign up for a Challenge today. See you in Seattle or Austin.

In October of 2004, I was in the hospital with my four year old son explaining that chemotherapy would make his hair fall out (and make him sick and make him fat, but those are stories for another time) and he just didn’t quite believe me. I offered to shave my head when his hair started to fall out and somehow that made him both believe and feel better about it.

A year later in 2005, his hair was just starting to grow back when he announced that he wanted to shave his head to help other kids with cancer. In March of 2006, he participated in St. Baldrick’s for the first time. St. Baldrick’s raises money to fund the fight against pediatric cancer. They fund fellowships to train new oncologists and research to help find and improve cures.

Improving cures is a big focus for me. Spencer had it “easy”. He went through three years and two months of chemotherapy to treat his acute lymphoblastic leukemia. He had side effects including nausea, vomiting, hair loss, weight gain, loss of coordination, and a weakened immune system. His immune system weak beats mine strong. He was hospitalized twice during his treatment with a fever. Both time it resolved quickly without complications. Other kids spend months in the hospital and return frequently. Long term effects of the chemotherapy can include bone necrosis (a fancy word for death - the chemo can kill bones), learning disabilities, and (my favorite) cancer. Kids who have radiation (which Spencer did not have) and chemotherapy are more likely to get a second cancer over the next 30 years.

So for us, “March Madness” isn’t about NCAA round ball, it’s about an annual right of renewal. We go baldly into Spring. We shave our heads to celebrate life and to raise money to fight pediatric cancer. Please join us in the fight against pediatric cancer by making a donation to shave Spencer’s head or to shave Rob’s head.

It is a strange experience as cancer withdraws from Spencer’s day to day life with agonizing slowness. It is such a contrast to how it came into our lives literally overnight. The past two or three weeks, I keep getting these odd micro-anxiety moments. “What have I forgotten?” my brain asks me. “I have forgotten to take Spencer to the oncologist! We haven’t been since December!” But I haven’t forgotten. It’s just cancer slowly leaving the upstage position our lives. December marked one year off-treatment and now he only needs to see the oncologist every two months.

The visits are usually uneventful. This visit was a quick blood test and exam. No worries. Blood counts fine and I have the paperwork to prove it. The machine counts are normal; I cried the first time that happened in March 2008. They will have a human verify and scan for abnormal cells. For now, people are better at blood analysis than machines.

In November, Spencer was sick and had double the normal white count. It almost seemed as if the clinic staff wanted us to panic at the number, but it was what we expected for a sick kid. Since Spencer’s diagnosis, I simply don’t seem to have panic in me. Fear, anxiety, sadness, anger. These I have had, but moments where I might have panicked just become planning and contingency exercises.

So, cancer is no longer center stage, but it continues to be a character. It makes an appearance in a scene every once in a while. Sometimes, I feel like it’s just waiting for a chance to be upstage center again. For now I am just learning to live with cancer leaving, but never gone.

I attended the Smoke-free Texas rally at the Austin Capitol today.

I am a member of the American Cancer Society Cancer Action Network and a supporter/volunteer at the Lance Armstrong Foundation. I prepared by putting on a Vote Yellow shirt under a LIVESTRONG long sleeve shirt. Ready for whatever temperature Austin would choose.
Got there a bit early and chatted with LAF folks and my new friend Jon, who drove up from San Antonio for the rally, bicycle maintenance, and a visit to the LAF. A few opponents of the pair of bills (URLs for House 5 and Senate 544 to come later) showed up and positioned themselves to be in the background of media shots. Mostly Libertarian property rights rhetoric with one clueless “Go back to France Lance” poster.
Speakers included bill sponsors and talk was about how second hand smoke is a long term health risk and workers shouldn’t have to choose between their job and their health.
Lance went right before the wrap up and reiterated those messages. He made a huge impact on getting Prop 15 through the Texas legislature and ballot process. We need another spokesperson for this since Lance will be busy at the Giro in Italy as our legislative session draws to a close. I plan to actively advocate, but I’m not exactly as visible as Lance.
More here as the session goes on.
To support some of these efforts, you can donate to fight cancer and support my cancer survivor son’s insane bicycling plans.

Today, we were down at a studio helping tape a public service announcement and take pictures for a media campaign promoting the LIVESTRONG Challenge. As usual, it was fun and inspiring. This time I didn’t bring clothes for me, so I didn’t wind up in the shoot. In order to work with a bunch of amateurs, Mat from Alpheus Media, just talks with the subject while the camera rolls. He asks questions, asks them to repeat lines back at him, and asks them to move in specific ways.

I get into a bit of a trance when we do these, as I did at the LAF Manifesto video shoot almost three years ago. The theme for this PSA was “what would you say to cancer” and Mat helped Spencer a lot in delivering some good material. This is a kid who, shortly after being diagnosed with leukemia when he was four years old, set the goal to raise $25K, ride with Lance Armstrong, and do a 40 mile bike ride with me. Then he achieved the goal. He’s got some opinions about cancer. It’s just a matter of getting him to speak. On camera. With his Dad lurking around the set.

Me? I got pissed at cancer. I wanted to put on a jersey and bike shorts, join Spencer on the set, and give cancer a piece of my mind. So, I tweeted (@sartin if you want to follow me) my first thought about what I want to say to cancer:

Cancer, you took this fight into MY house and tried to take MY son. I’m taking it back to you and I’m not stopping. Ever.

When I got home I was still mad, so I wrote a short note to cancer. Since I’ve not got the b*****d’s address, I will post it here as an open letter:

Spencer and I will be riding in the Seattle and Austin LIVESTRONG Challenge events this year. We’ve upped the stakes a little. We are targeting 100 miles on the tandem in Seattle in June and 90 miles on single bikes in Austin in October. I encourage you to donate to fight cancer or join us at one of the LIVESTRONG Challenge events.