Published July 28, 2013
It has been a long four-year journey for 16-year-old Lauren Scott, who doctors say is dying of cancer.
Lauren, who goes by the name “Lola,” was diagnosed in December 2009 with metastic retroperitoneal undifferentiated soft tissue sarcoma. She has endured 36 radiation treatments, five different chemotherapy protocols and two relapses as tumors have spread to her lungs.
“It's getting harder and harder to breathe, and I know what that means,” Lola told Fox News in an emotional interview via Skype from Reno, Nevada.
But one thing has kept Lola going: social media.
And she hasn’t given up – just check out her Instagram, Twitter, Facebook or website, where hundreds of people have followed her during the tough times, like when she shaved her head for cancer, and the good days, too, like when her family all got inspiring tattoos together.
She has even started her own wish list, #Lolasbucketlist, which includes skinny dipping, eating a Doritos taco, and her greatest hope – meeting singer Demi Lovato.
Social media has endeared Lola to people across the country who find her story inspiring and, in turn, have made the process for Lola a little less painful, a little less lonely.
“It’s a wonderful thing just putting it all out there and being vulnerable,” Lola said. “It's a good type of vulnerable though, and just having all these people gravitate toward me, say such nice things. When I think of them, it just makes me happy.”
Lola was inspired by YouTube stars 13-year-old Talia Castellano, who became famous for her make-up tips, and 18-year-old Zach Sobiech, who inspired millions with his song “Clouds.” Both died from cancer within the last two months.
“When I first got sick I was looking for videos on YouTube on how to put on eyebrows. And I found nothing besides Talia's videos,” Lola said. “I'm thankful that I have because she's got how to put on fake eyelashes, and how to make yourself not look pale from chemo.”
The social media platforms also are turning more attention to adolescents and young adult cancer patients. Lola is one of about 70,000 people between ages 15 and 39 who are diagnosed with cancer each year. Yet, this middle generation is often forgotten. Survival rates for teenagers and young adults have not improved in almost 30 years.
Experts say people in this age group are often delayed diagnosis of primary cancers; doctors have a poor understanding of the biology and etiology of the cancers that affect them, and get inadequate access and low rates of participation to clinical trials.
Matthew Zachary, 38, is the Founder of StupidCancer.org, a non-profit organization designed to empower adolescents and young adult cancer patients. Zachary was 21 when he was diagnosed with brain cancer, has since been in remission, but wishes he had social media by his side 17 years ago.
“This (cancer) is a life-changing experience, and it's difficult enough to be in that age group,” Zachary said of social media. “So the idea of meeting somebody who has gone through that, that is your age, that gets what it's like is transformative.”
Zachary said while people like Lola say they are getting strength from social media, the world is getting more from them.
“There aren't as many cancer survivors in the world as there are people who've watched these YouTube videos collectively,” Zachary said. “The general public is really hungry for inspiration and really hungry for people who show them what life is really about.”