Battling Spencer's Leukemia: Robert Sartin's Story

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My son, Spencer Sartin, was diagnosed with Leukemia at age 4. Since then, we have done everything we can to his dream of riding his bike like Lance Armstrong.

Our biggest challenge was the disease itself, Spencer's leukemia. Our response was to choose life. In the treatment of Spencer's leukemia, there was relatively little we could control. We decided to put him on a phase III clinical trial.

We wanted Spencer's life to be as good as it could be for as long as it would last. My personal goal was that regardless of whether Spencer lived or died, regardless of whether he came through unscathed or had significant side effects from the treatment, that he live the best life possible. I was not willing to give up his future for a fun present, so we never missed a step in his education. We created a home-bound schooling in case his immune system was too weak for school. We aggressively pushed to have him in school and used the plan only as a backup. And, we had fun.

Lance's message framed our journey before our journey started. My grandfather died from colon cancer. My mother and mother-in-law were breast cancer survivors. My dad died from multiple myeloma. Due to these cancers in my family, my interest in cycling, and the survivorship message, I was already a fundraiser for the Lance Armstrong Foundation. Our son, Spencer, started wearing the LIVESTRONG wristbands as soon as they came out. I bought three at Bicycle Sport Shop in May 2004, wore one, gave one to my wife, Rachel, and the other to Spencer. The next morning he walked up to me at breakfast with $3 out of his piggy bank and asked if I would buy more so he could wear one on each wrist and one on each ankle. Five months later, when I attended the LAF Peloton Appreciation Dinner in October 2004 Spencer was jealous that I brought Rachel instead of him.

During the dinner, shortly after Robin Williams asked if Rachel's electric wheelchair could do wheelies, I got a phone call from Megan who was babysitting the boys. Spencer had a fever and she wanted to know if and what medication she should give him.

Oct. 15 was also my last day working. I had left to split my time between taking care of our two sons and working on an early-stage start-up company. Six days later, Spencer's fever was still there though it would go away for a few hours with medication. I took him to the doctor thinking it was just an annoyance. His doctor decided to run a couple of tests and after a somewhat traumatic blood draw and a chest X-ray, Spencer and I went to pick up Rachel at her work. Then our lives exploded. While we were on the way to Rachel's office, the doctor got preliminary results of the blood test back and wanted to re-check to be sure there had been no error. We dashed to the clinic while arranging for child care for our younger son, Jacob.

On Oct. 22, 2004, right after breakfast, we got a phone call confirming the blood test results and directing us to drive to the oncology clinic at Children's Hospital of Austin "as fast as you can without getting pulled over." Chaos ensued. Friends helped. While I stayed in the hospital with Spencer, people came to the house and took care of Jacob and helped Rachel get around (at the time she was unable to drive). After we got home, friends brought us dinners. We were able to focus on treatment and dealing with the emotional impact.

With this sort of help, and the positive prognosis for Spencer's leukemia (85 percent, five-year relapse-free survival), it became obvious to us that we needed to find ways to give back to the cancer community.



Spencer and I settled on riding in the "Ride for the Roses" and raised enough money for Spencer to earn the "Yellow Jersey" fund-raising level. We focused the entire year on that goal. It encouraged us to ride more on the bicycle, to share our story, to help other people, and to raise over $32,000. Spencer worked the crowds at the fund-raising event. I can remember the first time he went, he handed out wrist bands and pamphlets at a Tour de France viewing event. He came back after a while and still had a bag of wrist bands in one hand and a stack of pamphlets in the other. I asked him what was wrong. He said "my pockets are full" and began emptying wads of cash from his Discovery jersey and jean pockets. He raised over $600 that morning alone, mostly in singles.



We decided early on to live as much as possible during Spencer's treatment. When he was still barely able to walk down the hallway from his bedroom to our family room, Spencer asked if he could restart his martial arts lessons. We contacted his master (Ali Brown of Tukong Moosul in Austin) and started private lessons immediately. Master Brown refused to take payment for these lessons. As soon as Spencer's immune system and energy were back, we restarted his group lessons.

One of the proudest days of my life was when Spencer took his first promotion test while still on harsh chemotherapy and was awarded a two belt promotion.



During part of his chemotherapy, we had to do chemotherapy at home. To do that, they accessed Spencer's port at the clinic - that means they put a needle into the catheter in his chest with an IV tube on it - and left it accessed all week so I could do chemotherapy at home.

Mechanically the task is simple, but emotionally it's tough. The instructions asked me to double glove with an outer layer of thick rubberized gloves for handling toxic material. They included warnings about spill avoidance and instructions on hazardous material cleanup (including a handy absorbent pack and a phone number to call to have someone come out and professionally clean) and repeated warnings to avoid exposing myself. Then I had to attached that bag to a pump that would put that toxic chemical into my own son. Between sessions, Spencer did martial arts class with a needle in his chest and a tube hanging from it. As a concession to me he did no sparring or tumbling.

Before Spencer's diagnosis, we had gone for walks and hikes. On treatment that bonding area grew immensely. We bought a Texas State Parks pass and, after clearing it with his oncologist, Spencer and I would go on long day trips whenever his immune system was compromised, but his platelet counts were high enough. The logic of the program was physical activity couldn't hurt and far surpassed trapping ourselves in our home because he might get sick. Dirt wasn't his infection risk.

People were. So we went to the secluded areas of parks. When Spencer was too tired from chemotherapy and his hemoglobin was low, I would carry him for miles around Enchanted Rock, through the Lost Pines, amongst the cactus, or once up a dirt road from where I got the car stuck in a not-as-dry-as-I-though creek bed.

Since Spencer returned to school, I have been working on a career transition. My goal is to work in the cancer nonprofit world. I have earned a certificate in Nonprofit Leadership and Management, done an internship at the Lance Armstrong Foundation (in addition to volunteer work I already did), and am now pursuing a paid job in the fight against cancer.

I plan to focus on the fight against cancer in my work life.

I got sloppy about my health after some of the big rides we did. One result is that we did not do as well as desired last year doing the 65-mile ride at the LIVESTRONG Challenge Austin. My physical goal for this year is to be only overweight and not obese - 17 pounds down, 15 to go. Then next year, I will continue my activity improvements and maintain my healthier eating habits. Spencer and I are doing the 45-mile ride at the LIVESTRONG Challenge Austin this year and the deal this year is to ride the "60" next year if we finish the 45. It's not going to be long until Spencer wants to do a century (don't tell the LAF, but he's talked about doing Team in Training and doing "America's Most Beautiful Bike Ride" in Lake Tahoe) and I want to be ready. He also likes to do triathlons and has started asking me why I don't.

I have been using LIVESTRONG.COM to track The Daily Plate, my physical activity, find information to help me get healthier, and network with others who share my attitudes. I have sent friend requests to all the other Share Your Story video finalists and the people who commented on my video. This community is helping me reach my goals.

Robert Sartin was one of our Dare to Share Contest finalists. Watch his video.

You can contact Robert by visiting his LIVESTRONG Member profile.