Evan Bartlett will be 24 years old in April and 23 years cancer free in August.
The Edwardsville native was diagnosed with acute lymphoblastic leukemia, which is cancer of the blood and bone marrow, at 15 weeks old. He was given a 1 percent chance to live, but there was a more aggressive treatment in development that could give him up to a 12 percent chance.
The treatment included chemotherapy, radiation and a bone marrow transplant — all on infant patients. The doctors knew the aggressive treatment would leave the 12 babies with limitations.
Only three babies survived, Evan said. The treatment left him with five extra masses around his body.
“I call them extra bones. I could say tumors, but then people think I mean cancer,” he said. “It’s noncancerous tumors.”
The radiation and chemotherapy stunted his growth. He had to take growth hormones. He had a bed-wetting problem until he was 17. He was put in special education classes because doctors said he had a learning disability. The other two babies who lived also had learning disorders, Evan said.
“It’s not fun when doctors are telling you, ‘You have a learning disorder’ and you’re trying to get homework done. You’re like, ‘Well, I have a learning disorder. I don’t need to do this,’” he said. “I did try using it as a crutch for a little while.”
But Evan didn’t feel he belonged in special education.
“I was able to fight and get out of the special ed class eventually,” he said. “I had to go in once a year and do all these crazy tests. I felt like a guinea pig.”
Evan was told he’d never pass high school to go on to college. He finished a bachelor’s degree last year and is now customer service rep at AAA Community Finance in Bethalto.
“So it’s like, ‘Whatever. You guys have been doubting me my whole life,’” he said. “That made me so mad when I was growing up. That frustrated me so much. That definitely pushed me to become who I am today, and now it’s just, ‘What do I want to do next with my life?’”
For a long time, Evan didn’t talk about his cancer. Not to his friends, not to his mom, dad or even his brother, who at 5 years old donated the bone marrow that helped save Evan’s life. But he broke that silence in 2012 when he posted the YouTube videos that would lead to a cross-country road trip with a stranger and a full-length feature film.
He started a web series called “I Survived Cancer” in which survivors shared their stories.
Eli Accola, 23, of Edwardsville, had still not come to terms with the fact that he had had cancer when he stumbled upon Evan’s video in 2012.
He was just 19 years old when he heard a “whoosing sound” in his ear. Doctors found a malignant brain tumor.
“I went in on a Monday to get a CAT scan and they found, they called it a cyst. But that next Monday, I was in for surgery to get it out,” he said.
He was couch-ridden after surgery. That’s when, he said, someone happened to share the “I Survived Cancer” video on Facebook.
“He contacted me saying, ‘Hey, thank you for sharing your story. I would really like to share mine. Is there any way that you’ll be around Edwardsville?’” Evan said. “And that is where it started.”
“I guess I was kind of lonely,” Eli said. “I didn’t know anybody that had cancer. Once I finally talked to Evan he knew what I was going through.”
They hadn’t known each other before, though they both lived in Holiday Shores, both graduated from Edwardsville High School and even had mutual friends. Evan was attending Columbia College in Chicago for film, and Eli was studying speech communication at Southern Illinois University Edwardsville at the time.
“We met up whenever I came back for the weekend,” Evan said. “He’s like, ‘What are you planning on doing with all this?’ and I’m like, ‘To be honest with you man, I want to go on a road trip.’”
Evan started the web series to test the waters for the bigger project he was planning: a documentary about cancer patients and survivors across America.
Eli quickly volunteered to be a part of the trip and the documentary.
“I just wanted to get out into the world,” he said.
They have been working on the documentary for more than two years.
‘The Beating Path’
The film, “Discovering the Beating Path,” is complete and available to watch for free on YouTube at https://www.youtube.com/watch?v=1MZZDa8FdeE.
It is a little more than an hour of interviews with cancer patients, survivors and caregivers. They talk about how their lives have changed — for the better. Sure, they might have some limitations they didn’t have before cancer, but the film focuses on the positive: They made it. Their hearts are still beating.
The documentary features Ricky, a man who was wheelchair-bound after surviving medulloblastoma. He talks about how he won’t give up hope that he will one day walk again. He has since tossed the wheelchair and is using a walker to get around on his own two legs.
Gabby, a woman who lost a leg to soft tissue sarcoma, talks about how she was worried her son would get sick because she was pregnant when she was diagnosed. He is shown healthy and happily playing in a park. And he offers his help to mom with things like climbing stairs.
But not all the stories have happy endings.
The documentary also features Craig, a man who had an inoperable brain tumor called astrocytoma glioblastoma. He was given six months to live, but continued surviving for seven years with the help of medical cannabis. He died before the release of the documentary in 2013.
“I know that (finding and talking to Craig) really helped Eli,” Evan said. “It would be like me finding another acute lymphoblastic leukemia survivor.”
Eli didn’t expect to find someone on such a similar path.
“I could tell how he was acting was how I was acting whenever I had my brain tumor. And it was nice seeing him just push forward,” Eli said.
Evan and Eli remember Craig for his outlook on life: There are 86,400 seconds in a day, he’d say, and he was living every second.
“He’d always ask us, ‘Are you?’ Every time I think of him saying that, it always puts me in a better mood, always inspires me,” Evan said.
“I feel like I’m still learning from Craig on a daily basis,” Eli said in the documentary.
Evan and Eli set out on July 1, 2012, for a 47-day trip from the Midwest to the West Coast and back. Stops included Kansas, Colorado, Nevada, California, Utah, Minnisota and Wisconsin. The trip was funded entirely through donations — about $3,400 and gift cards.
Eli’s church, St. John’s United Church of Christ Midway, helped a lot with the fundraising.
Along the way, they were couchsurfing — staying free of charge with strangers who were willing to take them in. They found them through couchsurfing.org, a website that links travelers to participants across the country and requires background checks.
A lot of the couches they surfed belonged to the people they would interview for the documentary. They ate with them, slept in their houses, and sometimes, their hosts would agree to participate in adrenaline-inducing activities on film — like skydiving.
Craig had tried skydiving before and told Evan and Eli if they really wanted to have an experience of a lifetime, they should go for it.
Evan couldn’t wait. Eli took a little convincing. But they did it.
They also went paragliding off a cliff and kayaking.
Evan said they knew “roughly” where they would be heading based on the couchsurfing arrangements they made, but they had to be flexible.
“If someone had to cancel, some random person would always come up out of nowhere and be like, ‘Hey, I’m a cancer survivor. I’ll take you in.’ It was so weird,” Evan said.
They also never turned down a story.
“We could literally make four movies from all the footage that we have and all the stories that we have,” Evan said. “We would even drive out of our way for an interview.”
Only 11 of about 25 interviews made the cut, but Evan said he will release them as individual videos on YouTube. Everything — the documentary, Evan’s other projects and the upcoming interviews — will be available at https://www.youtube.com/user/ISurvivedCancer.
The interviews, Evan said, will surprise people.
“When you think of this deadly disease, you wouldn’t think there would be an upbeat aspect about people who beat cancer or who are going through cancer,” he said. “Life isn’t that bad. Life is beautiful. Even if you have to face cancer to see it.”
Evan said this project was so important to him because, when he was going through cancer, his parents had no success stories — or any stories at all — to compare to their situation.
“If my parents didn’t have anyone to look up to, shame on me if I don’t share my story for some other parents or some other kid to see that, ‘You know what? He went through the same thing that I’m going through right now and he’s able to get past it, why can’t I?’” he said. “From all the doctors and all my family from the beginning, they put so much work into me just to survive. I have to be able to put that love back out into the world.”
Eli wanted to get involved to find others who would understand him, but also to try to understand what happened for himself.
“Most people with cancer have to go through chemo, radiation and I didn’t do any of that,” he said. “Because I didn’t go through the radiation or chemo, being on the trip kind of showed me what cancer was and I used that as my journey.”
Since returning from the trip, Eli has crossed paths with cancer again. Earlier this year, his dad discovered cancer in his knee.
“After me going through the experience and him going through it now, our family just didn’t let it bother us as much. We didn’t make a big deal out of it. We all stayed positive,” Eli said. “He had his last radiation probably a couple weeks ago. It’s gone.”
Eli said he set a goal to “be done with all the cancer stuff” by the time the documentary was finished.
“It defines me because I went through it but I don’t want it to define my whole life,” he said. “I’m trying to move forward, go to school, meet new people.”
Cancer did, however, change him for the better, he said.
“It’s shown me what is important. My family’s important. My friends are important,” he said. “I took everything for granted (before cancer).”
He will celebrate being four years cancer free in March.
“It’s taken a while but I kind of feel like I’m getting back to my normal. It’s a cool feeling,” he said. “My new normal. It’s not the old one anymore I don’t think.”
Eli used to have trouble with short-term memory and impulse control after having the brain tumor removed, but that’s mostly in the past now.
“I can tell that I’m not having as much trouble. I’ve definitely grown stronger,” he said. “My mentality is stronger than it was right after the surgery.”
He attributes “100 percent” of his growth to the trip.
Eli expects to graduate from SIUE next spring.
“It’s going to be the best feeling ever,” he said. “My mom and dad said we’re going to go on a trip when I graduate.”
If he gets to choose the destination, he said a cruise might be nice — to Antarctica.
Evan’s next project hasn’t been nailed down yet, but he has some ideas. He’s interested in finding the other two babies who went through the same aggressive treatment that helped him survive almost 23 years ago.
“I’d like to know if they’re still alive,” he said.