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

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.

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

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.

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.