"My name is Avi, and I am a cancer survivor."
EDM.com was introduced to Avi through FRDM Festival, a 4th of July music and arts festival in Long Beach, California that donated 100 percent of its proceeds to Teen Cancer America.
Hosted on the waterfront events park of the Queen Mary, FRDM Festival combines an eclectic lineup of today's top music with all the ingredients of a great 4th of July BBQ in order to #PartyWithAPurpose. Some of the headliners included Kid Ink, SNDCLSH with special Lupe Fiasco performance, and T-Pain with support from Bixel Boys and Le Youth.
The inaugural festival on July 2nd was a massive success and sold out at 5,500 people through the venue! FRDM Fest raised a total of $6800 for Teen Cancer America (TCA)! Their principle investor, Steve Morse also made a generous donation of $5,000 to TCA.
"This festival is about more than just a celebration of our country's independence,” says festival co-founder Waseel Amoura. “It's about coming together and raising awareness for Teen Cancer America. This is about community and celebration."
To learn more about TCA, we had the fortunate opportunity to speak with 23-year-old California ambassador and cancer survivor Avi Khanian.
Avi's story starts 10 years ago…
Avi at just 12 years old was a triathlete who played soccer, basketball and practiced karate. He had just gotten into a new school, was making a lot of friends and quickly became the class clown.
"Everything was going great."
… until everything changed. Avi's mother walked in on him changing one day, thinking she heard him call her name, only to spot a lump on her son’s leg.
Within a very short period of time, Avi was in surgery. Three weeks later, Avi was off his crutches, but there was still no word from the lab.
"One night… my parents sat me down. And my mom is already crying. And my dad is standing and he can’t sit down. And then my dad looks at me and says, 'Your results came from Boston… UCLA couldn’t diagnose what your cancer was so they had to send it to Boston… you have Ewing Sarcoma. You have cancer. We don’t know what this is. We’re going to go tomorrow morning to talk to the doctors and they are going to give us the whole plan, but you’re going to be okay."
Ewing sarcoma is a very rare cancer found predominantly in adolescents, particularly during puberty.
"This cancer is so rare that it is found in less than 1.0 percent of the cancer population."
Avi was home schooled for a full year, and it was after his second round of Chemo that he said goodbye to his precious head of hair.
"I decided after the second round of chemo to just to shave it off… I want to take control of my cancer."
Chemo, Avi would come to learn, was living hell. He did 40 cycles of two types of intense chemotherapy alternating every three weeks as well as four weeks of consecutive days of controlled radiation.
Each cycle left him with excruciating side effects as the radiation destroyed both good and bad cells. By the time he had recovered from one cycle and was strong enough, it was time for another one.
"I used to think of my treatment as kind of being in a nuclear war zone. The nurses would come in with hazmat suits on, they would check your ID to make sure you’re the right person, they’d check your weight and date of birth. They would come in, give you chemo, and then run out."
One day, Avi found himself alone in a room of the pediatric center of a hospital with a three-year-old cancer patient. The little boy started jumping up and down on his bed.
"I was thinking, 'Yo, this kid is crazy, what is he doing, doesn’t he understand that he’s dying?'"
Avi suddenly realized something. This little boy is having so much fun, why isn’t he jumping on the bed.
The second you are diagnosed with cancer, everything changes. Your life becomes a constant battle and you are consumed by your treatment. What was happening to Avi, is what happens to so many other patients… they start to let cancer define them, and they lose themselves in the process.
The little boy jumping on his bed reminded Avi that he can’t stop being himself. Avi was always the class clown, and he can’t stop cracking jokes or playing pranks just because he has cancer.
Making friends in the hospital, teasing the nurses and being an all-around troublemaker helped Avi to keep fighting - that and the unconditional love and support of his family. If it wasn’t for these things, it would have been easy to give up.
Many cancer patients aren’t as lucky as Avi. They don't always get the kind of human connection that uplifts your spirits. It’s easy to become isolated. Even just looking at his friends and classmates, Avi realized that cancer was uncomfortable for people. They wouldn't visit because they don’t know what to say.
When Avi was finished with chemo, it didn't get any easier. For months and months, he had been told when to wake up, what to do, how to eat and when to sleep. Like most cancer patients, Avi barely recognized himself in the mirror.
But while Avi's high school classmates were concerned with clothes and hair and the like, Avi was concerned with the person behind all that, their character and how they communicate and connect. When you have fought tooth and nail for your life, the superficial things just don't matter anymore.
As Avi tried to find his path and purpose in college, he went from studying psychology to pre-med to nursing to sociology, then back to psychology. Avi realized his experiences with cancer and his perspective as a result, paired with his passion for psychology, could be used to help others like him, who were diagnosed with cancer as an adolescent.
After Avi reconnected with his child-life specialist, Hilary Gan, he was introduced to Teen Cancer America, Avi began working with them to build centers for teen cancer patients in hospitals. These centers were especially designed to help teens in the same way that the little boy jumping on his bed helped Avi. Beyond creating physically spaces they help young patients regain control over their lives and their cancer, from letting them choose when nurses start their rounds to making sure doctors ask them how they feel rather than their parents.
"I’m really passionate about working with cancer patients."
Teen Cancer America, a charity started by Roger Daltrey and Pete Townshend of The Who, focuses on the needs of teenagers and young adults who have cancer. While the medical world caters to adults and pediatrics, the adolescents in between are often overlooked. What TCA does is make sure that their unique needs as teens are met, from treatment schedules to having spaces to gather and interact with other teens.
As the California ambassador of Teen Cancer America, Avi is hoping to help teens going through cancer find and retain their individuality, independence, happiness and positivity through regular and healthy human connection and camaraderie.
Avi recounts a time when he felt so present and connected with the people around him, that he and his fellow young patients forgot they even had cancer. They were going through the same experience and once they were able to come together in a space just for them, they felt so connected and, for the first time in a long time, could actually enjoy being present in the moment.
"I think that relates to festivals and raves where we are all physically in the same space, and we are all vibing… We are all feeling the same heartbeat, and we are all dancing to the same song.”
The spaces Avi works to create allow for positive experiences similar to coming together to dance at a festival or show.
"When I was going through treatment… the main artist I listened to was ATB. I listened to a lot of trance and Above & Beyond… songs that have a story behind them and have these ups and downs… I think it relates to going through hardships in life. A lot of times its uphill and its hard, and then you have the downhill, and its easy… that's what EDM is about, the ups and downs… and you can connect to it."
Learn more about Teen Cancer America and their work at teencanceramerica.org.
Check out the artists FRDM Fest brought out to this year's event at frdmfest.com. Keep an eye out for the 2017 edition, so you can celebrate the Fourth of July with your favorite dance music artists all while helping contribute to an amazing cause!