SpencerWon

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.

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.

Thank you to everyone who helped Spencer raise $5650 dollars (as of this afternoon) for the Lance Armstrong Foundation. WE have about 30 emails sitting in Spencer’s inboxes. He will reply to all of them.

LIVESTRONG Challenge Fundraising Award Dinner is over. We brought home the Lance-signed Sports Illustrated from 2006 that has Lance, Brooke, Sean, and Spencer. Sat with Cyclists Combatting Cancer at dinner. Had a great time. Lance wants us to be angry about cancer, make it personal, fix the unacceptable, and change the world. Better get to work.

The bike rack is on my car for morning. Rachel’s car is loaded with stuff for her and Jacob, including the all-important “I’m a fan of Spencer” fans. Spencer and I are packing clothes, Gu, and gear for the morning. The bicycles are in the garage ready to load on the car as soon as we wake up.

Spencer talked to Lance after the dinner and asked about the rides. Lance is doing the 90 and thinks it’s cool that Spencer is riding solo on the 45. I, too, think it’s cool. Still gonna cry when he goes through the survivor lane by himself though.

Follow sartin on twitter to get ride status, pictures, and geolocations.

Thanks to a series of generous donations, Spencer went over his goal of $5000. When the goal was in sight, he asked Rachel if we would donate $2000 if he got over $5000. He wants to reset his goal to $7500. Who cares that there are only 11 hours left to make it?

In the end, it’s a good day, this fourth anniversary of the worst day of my life.

Four years ago today, we woke up and ate breakfast. Spencer still had a bit of a fever, but was feeling fine. The phone rang. Dr. Cardwell had the results of Spencer’s blood test and they strongly pointed to leukemia. He told us to go immediately to Specially for Children in the office tower next to Children’s Hospital of Austin, where Dr. James Sharp would see us right away. He advised us “don’t break the speed limit, but go as quickly as you can.” Thus began our journey through the world of pediatric cancer. Spencer had a bone marrow aspiration that afternoon to confirm and refine the diagnosis. We would learn the following week that he had a TEL/AML1 translocation which is associated with a good prognosis. Spencer began chemotherapy right away and the following morning had a port-a-cath put into his chest so they would have easier (and less traumatic for Spencer) access to his veins for blood tests and chemotherapy.

Today, Spencer woke up and ate breakfast. He started unwrapping LIVESTRONG wrist bands so he could give one to his teachers and classmates at school. He packed his backpack with the wrist bands, some LIVESTRONG stickers, and his homework. Then he walked to school. Sunday he goes for a little 45 mile bike ride through the Hill Country near Dripping Springs to celebrate this anniversary and the fact that he raised over $5000 (OK, technically, he’s not quite there, but he hasn’t yet gotten Rachel and me to give our donation and I’m confident his ask will be good enough to put him over if he doesn’t go over by tonight from others’ donations) to help the Lance Armstrong Foundation fight cancer worldwide. Not bad for an eight year old cancer survivor.

We are the lucky ones. Spencer had a form of cancer that was very treatable. We had excellent insurance. We were in a situation that let me take time off to deal with Spencer’s treatment. Since his treatment, I have had the freedom to choose a career change that will be less lucrative financially, but dramatically more rewarding. Spencer has grown physically, mentally, and spiritually in ways that absolutely blow me away with pride and awe. When I was eight, my big challenge was not getting invited to my friend Tommy’s birthday party.

But we need to do better as a society. I’d like to see treatment for ALL that is less destructive than the current combination chemotherapy that is the best medicine can offer. I’d like researchers to find a way to shorten the treatment and limit the side effects. I’d like us to cure more kids. I’d like us to detect cancers early enough to treat them. I’d like for all of us to share in the benefits of our medical technology. I’d like us to treat more cancers effectively. I’d like survivors to remain productive people worldwide. I’d like those who die to die on their own terms.

This morning I did a little bit to work on my own piece of that dream. I went out this morning to vote early and Vote Yellow. I’ve also had conversations recently with my State Representative (up for re-election) and State Senator. US Senators and Representative are on the list.

Spencer’s fundraising total just went over $4000 thanks to a generous donation from his current 3rd grade teacher, Mrs. Jordan. He has less than $1000 to go to reach his $5000 goal and 36 hours left to do it. Please donate to fight cancer and support Spencer in his 45 mile solo ride to celebrate his four year diagnosis anniversary.

We finished the ride in 3:56:35 for an average speed of 10.1 MPH. At least 18:03 of that was stops, giving an average rolling speed of at least 11.0 MPH. Spencer was awesome.

We had the classic problem at the start of an organized ride of riding too fast, trying to keep up with all of the people around us. I got Spencer to slow down a little closer to pace before we got too tired and we didn’t have any problems. As we hit a rough area of gravel, we found our friend and “Turtles on Wheels” team mate, Jim Beesley, who rode with us to the first rest stop where he took the photo here. I had senior moment in the parking lot and left my toolkit in the car instead of on my bike. Fortunately, Jim had a hex wrench we used to adjust Spencer’s seat height. He seems to have grown an inch since we bought the bike.

Spencer set to a pattern at the rest stops. At each stop, he would take 8 chocolate chip cookies which he would eat on the rode. He still hasn’t worked up to drinking on the bike, so we stopped at the top of a number of the (not very large) hills for him to drink. He stayed nicely hydrated on the whole ride which was a bit of a challenge for him. He tends to forget to drink when it’s not hot out.

At the northern end of the ride, I was chatting with a nice woman out on the 50 mile course (which mostly overlapped ours) and she was complementing us on spending time together riding and doing outdoor activities, and marveling at an eight year old doing a 40 mile ride, when Spencer’s right foot popped out of his pedal. All we saw from back where we were was his leg kick out, the bike stutter and Spencer correct balance with a kick off the ground to keep from falling. After it was over, he pulled over to the side and was briefly terrified before I borrowed another hex wrench and tightened his pedal release a bit. He just hopped on the bike and started riding again. I barely had to encourage him to work through the adrenalin and fear from the near spill. Yay, Spencer! Honestly, if that had happened to me, I suspect I would have gone done and had a heck of a road rash to deal with next week. Glad it didn’t go that way

After we finished the ride, we had a free lunch at Chicken Express and talked to a number of other riders, who were similarly impressed at an 8 year old doing that 40 mile ride as training for his “big” ride.

Just a few days to go to the October 22 fundraising deadline. Please donate to fight cancer and support Spencer’s 45 mile hill country ride to raise money for the Lance Armstrong Foundation.

Another Deerfield classmate, Gig (pronounced as if spelled “Jidge”), sent me an email saying he’s going to contact more of my classmates and suggest they donate. These are some of the finest men I know and I am proud to be a part of this group. At my 25 year reunion when we got permission from Spencer’s oncologist to run out of town for a week right before Spencer started an intensification cycle of his chemo, the fine “young” men of DA ‘80 made Spencer feel a part of our class and even gave him one of the class shirts. On top of that, they donated over $2000 to support Spencer’s ride in 2005.

This weekend, after we get back from a 40 mile training ride, Spencer and I are going to create a custom tag to hang on our bikes thanking the Sons of Deerfield for their generosity. You guys are great.

Don’t for get to donate to the Lance Armstrong Foundation and support Spencer’s 45 mile solo ride.

Teaser for next post: Our October 17, 2008, training ride will be the 40 mile course of the Outlaw Trail 100. See you on the road - if you can catch Spencer.

Round Rock ISD had Friday and today off so Spencer and I planned a little riding. Friday got sidetracked by room cleaning. Who knew that Spencer and Jacob had been hiding so much behind the dressers and under the bed? Today, however, went right as planned - well except for Spencer forgetting his socks the first time we left the house. We started at Brushy Creek Lake Park with
a plan to do two laps up Parmer to FM 2243, down County Road 175 to Sam Bass Road, Great Oaks back to the trail that goes into the park. Google calls it 16.8 miles each lap, plus we did about 1/2 mile of extra riding in the park on the first lap. Elapsed time including stops 3:16:15, for an average speed of 10.4 MPH. We spent at least 10 minutes at stops - Spencer is not yet comfortable drinking while riding, so we stopped 4 times each lap, including almost six minutes reloading Gatorade in the park at the end of the first lap - so our average rolling speed is over 11.

As expected, Spencer did great. His bike handling was excellent, including an excellent job of navigating through some dumped asphalt on the shoulder that including chunks as big a 6 inches by a foot. I am unbelievably pleased with his riding and willingness to attack his goal of riding the 45 miles of the LIVESTRONG Challenge in just 13 days. We did another drop of postcards through the neighborhood and got $9.78 in cash plus $50 online, so the fundraising is going well also. We’ll do one more email blast this week to see what we can get with a little deadline pressure on donations.

Please donate to the Lance Armstrong Foundation and support 8 year old Spencer and his 45 mile bicycle ride to fight cancer.

I put together some images into a general purpose fundraising postcard for the LIVESTRONG Challenge. Spencer and I worked on text for a neighborhood fundraising run:

Postcard back:

Hi, I’m Spencer Sartin, a Third
Grader here at Canyon Creek
Elementary.

On October 22, 2004, I was
diagnosed with leukemia. I am in
remission and after 3 years and 2
months of chemotherapy I am
finished with treatment. I am
winning my personal fight against
cancer and trying to help others.

The Lance Armstrong Foundation
funds programs here in Austin,
nationally, and worldwide. Please
make a donation today to help
fight cancer. With your help, we
can have more survivors like me.

After I was diagnosed we set
some goals.

Goals – completed
10/29/’04	Leukemia in remission
5/20/’05	Wear “more wrist bands than anybody”
10/21/’05	Ride w/ Lance Armstrong (Beat Lance up hill)
12/22/’07	Finish chemotherapy
Always	LIVESTRONG
Goals – still to do
____	Ride solo 45 mile ride
____	Fight Cancer Worldwide

I can do the riding, but I need your
help with donations. Please donate:

http://austin08.livestrong.org/spencer

Follow my progress at

http://spencerone.org

Yesterday, we did a door-to-door distribution of 40 cards. Spencer wound up talking with five of our neighbors.
In the process, he:

• collected $30 cash (which I converted to online donations when we got home)
• connected me with someone who will be very helpful if I go to plan B on my job search
• connected with two guys who run a landscaping business and want to help with fundraising and do a T-shirt design for next year
• motivated an online $25 donation (one neighbor we didn’t see, donate before we made it home)

Never underestimate the power of grassroots fundraising and advocacy

Today we will distribute another 48 cards and see how that goes.