How video games helped one teenager beat cancer and form his bridge back to normalcy.
Steven Gonzalez was just 12 years old when doctors diagnosed him with acute myeloid leukemia, a rare form of cancer that causes anemia, frequent infections and pain. Told he had a 2 percent chance of survival and torn away from his friends to the harsh confines of a hospital, Gonzalez turned to video games for comfort.
As he was absorbed in these virtual worlds, alone or with his father, his pain, nausea and fatigue disappeared. Games proved an escape from the psychological and physical ravages of his treatment, which included chemotherapy and a double umbilical cord blood transplant — a special kind of blood transfusion that provides stem cells for growing new bone marrow — followed by 30 days of hospital isolation and 100 days of home isolation. They provided what he calls a bridge back to normalcy — a shared hobby by which he could bond with other kids, separate from the cancer and transition smoothly back into his old life when he entered remission.
Five years later, in August 2012, Gonzalez stood in front of the audience at TEDxSugarLand and described his time as a patient at MD Anderson Cancer Center in Houston. "I met two kids who shared the same love of video games," he said. "As we began talking, the world of cancer melted away." Inspired by this experience and many others both during and following his treatment, he revealed his mission. He wants to tell the world about the healing power of video games, and he's founded a non-profit organization called The Survivor Games to help build bridges between game developers, cancer patients and everybody else.
It was a harrowing time, made worse by uncertainty over his treatment.
Play against cancer
Steven Gonzalez was on a Boy Scout camp out in October 2007 when he woke up with a swollen face. "We went to the clinic until eventually they sent us to a hospital because the labs weren't right," he recalls. "And something was clearly wrong."
"It was kind of insane," his uncle Eddie Gonzalez-Novoa interjects. "They went from thinking maybe it was an allergic reaction [or] a bug bite — something really simple — to all of a sudden running tests." The doctors soon put a name to it, and — instead of trick-or-treating as planned — Gonzalez was admitted to the hospital on Halloween. It was a harrowing time, made worse by uncertainty over his treatment. The go-to treatment for leukemia is a bone marrow transplant, Gonzalez-Novoa says, but "Steven is half Puerto Rican, half Mexican, with indigenous blood on both sides, and it was near impossible to find a match on the bone marrow list."
They tested family members, but none of them matched either. Plan B turned out to be a stem cell transplant, which Gonzalez faced after three months of chemotherapy concluded on the day before Valentine's Day. Sitting in his hospital bed, uncomfortable, nauseated and contorted from all the tubes hanging out of him, he played Marvel: Ultimate Alliance with his dad while the doctors set up an IV and the new stem cell-rich blood entered his veins.
They stopped playing around halfway through the procedure because his dad's eyes were tired from staring at the tiny TV. His nausea forgotten, fatigue took hold and Gonzalez fell asleep immediately. "When I woke up it was all done," he recalls.
Next came months of isolation as his immune system rebuilt from scratch. He got sick. He got infections. But he grabbed hold of the Macbook computer gifted by the Make-A-Wish Foundation and taught himself iMovie, the professional 3D animation suite Maya and a number of other programs. And he made a game.
Play Against Cancer, or P.A.C. for short, has 18 mazy levels wherein you play as Pac-Man and shoot bullets at green Pac-Man ghosts that represent cancer cells. "And then you pretty much beat cancer," he says.
He handed copies of the game out to other sick kids at Christmas. In the following months, when he returned for more hospital events, they rushed to tell him about all the different glitches they found in the game and how they thought these could be fixed. "Kids just loved it and loved talking about it," Gonzalez says.
It was a big moment in his uncle's eyes. "I already knew how the playing of video games helped," Gonzalez-Novoa says. "I think what I began to really observe is that the act of developing video games kind of took his personal therapy to another level. It made him be creative, [gave him] a product to focus on [and] a game and goals to work toward."
Both Gonzalez and his uncle saw how this might be extrapolated to other sick kids. Making a game provides an outlet for the rage, frustration and fear at having cancer, and it helps build a sense of being in control. Game development, Gonzalez-Novoa argues, can "give them a sense of hope that all of this is only the beginning for them."
The same goes for any kind of creative artistic endeavor, Ian Cion explains. He's the director of the Arts in Medicine program at the MD Anderson Children's Cancer Hospital where Gonzalez was treated. His job involves collaborating with sick kids on art projects of all kinds.
Mega P.A.C. (Play Against Cancer)
Arts in medicine
"When you walk into a room and someone is feeling physically really low," says Cion, "they might be vomiting and they might be in a lot of pain, and to engage them creatively has a real effect. ... You can in a short period of time have somebody stop crying, start focusing on a project and start laughing and telling stories."
There's a biological, physiological value to being focused like this, he argues. "You're releasing endorphins; there are certain pain inhibitors that are getting blocked when you're focusing. And all of a sudden you're engaged with something and you literally see the life coming back to people. You see [their] dynamic steer to spunky — you know, fun shine[s] forth in somebody when they start to engage in something creative."
Cion gets sick kids into things like painting and animating. He helps them create something incredible that will be showcased publicly — often in the form of a digital remix that brings their original drawing to life. But his reach is limited; he is able to see and build meaningful relationships with barely 15 to 20 percent of the 2,000 or so children with cancer that MD Anderson treats each year. And for all the good it does, his program is costly. "To get my position in place," he says, "we had to start a pilot program, get grant funding, work and really document everything that we're doing, do tons of presentations within the institution and beyond and continually raise money — just to keep me going."
Gonzalez had already completed his treatment by the time Cion started, but the pair have worked together on a number of projects. Gonzalez did an animation internship while he was still in high school. He was tasked with developing animated versions of patient artwork. It was one of many initiatives meant to foster a sense of community and to support patients and families going through treatment.
"I think in terms of self image and body image, there are people going through a lot of changes," Cion says, "and they don't necessarily want their friends and families to see them when they are physically down with their hair falling out or skin much more frail.
"It allows people to stay connected in a lot of ways where they might be a bit shy."
"In some ways the digital world, the virtual world, the gaming world — all these platforms for connecting where you're not necessarily representing yourself physically can be helpful because [they allow] people to stay connected in a lot of ways where they might be a bit shy."
He'd love to have another five or six artists to work alongside him permanently, to better refine this idea, but the reality is that budgets only stretch so far — and in many cases other services or new equipment like MRI machines take precedence. Meanwhile, the patients at MD Anderson who don't get to work with Cion still have access to a team of child life specialists and a number of dedicated play rooms, including an arcade where teenagers can hang out and play games both new and old. And the hospital has renovated since Gonzalez was a patient, further improving the quality of life during treatment for patients and their families.
MD Anderson is also collaborating with Houston-based developer Playnormous on a number of health-related games and apps, with Gonzalez and other patients consulting on the designs alongside doctors and nutritionists.
Steven Gonzalez entered remission at the end of his isolation period, whereupon he resumed his normal life of going to school, hanging out with friends and engaging in a host of hobbies and interests. He returned regularly to the MD Anderson Cancer Center, bringing games that he'd made himself as well as commercial games he secured as outside donations.
The positive impact of video games on himself and other kids with cancer stuck with him. "It was able to create a world where none of it existed," he says. "Where you could comfortably talk to other people about a fun subject and have that ease in friendship and escape to a whole 'nother world where cancer is irrelevant and pain is irrelevant. You have a task that needs to get done. And [it breaks down] the mental barrier that cancer has created."
A seed grew in his mind for a social network designed specifically around bringing sick kids together through gaming. In mid-2012 the idea took a giant leap toward realization.
"It was able to create a world where [cancer didn't exist]."
Gonzalez went to a meetup his dad was curating where engineers could pitch ideas to an audience of entrepreneurs. "As I was listening I thought, 'I could do this,'" he says, "so I sent my dad a text: 'Can I present my company idea?' He's like, 'Sure, why not.'" Word got back to the organizer of TEDxSugarLand about it by way of an impressed audience member, and suddenly the 17-year-old was on the register for a major speaking event.
Gonzalez took the stage in August to an enraptured audience, calmly sharing his story of cancer survival and the role video games played in his recovery. "Any one of us can be ripped away from the world that we know," he concluded. "But through the healing power of video games, we can be that relief from pain, that sense of community, and we can be that bridge back to normalcy. And that is the magic of the healing power of video games."
His uncle watched proudly from afar via livestream, extremely impressed. "I told Steven that I would support him no matter what from a distance from New York City," Gonzalez-Novoa says, "but it wasn't until I saw his video that I saw him for the first time not as a child — as my nephew — but as an entrepreneur and a professional."
So he quit his job and moved to Houston to run The Survivor Games alongside his nephew.
The Survivor Games
"The good news is that I've kind of been preparing for this all my life without even realizing it," says Gonzalez-Novoa. His last job was executive director at a non-profit leadership development organization. He was originally trained in play therapy — a kind of counseling and psychotherapy that encourages children to express their thoughts and feelings and process traumatic experiences with help from toys, games and art materials. His focus was on what he describes as "the healing power of play for pre-school children." He moved to New York in 1997 to work on a startup, then ran after-school programs for teenagers — some of whom were HIV positive.
"Getting adolescents to get support around very sensitive health issues when they already have lots of stuff going on in their life as a teenager is really hard," he says. "We've made strides in social media and technology, but teenagers are still teenagers."
That's both challenging and wonderful, he argues, and games may prove the best way to reach them. Researchers have had positive results with games specifically targeted at educating teen cancer patients about their illnesses and the consequences of not taking prescribed medicine.
HopeLab's third-person shooter Re-Mission is one such game, taking players on a wild tour through the immune system of a cancer patient as they blast the bad cells into oblivion. It took a team of animators, cell biologists, cancer experts, psychologists and cancer patients six years to create, and now a follow-up collection of six arcade-style minigames — which Steven Gonzalez consulted on — is playable online.
Patient Empowerment, a collaborative effort between the University of Utah and the Utah Primary Children's Medical Center in 2011, similarly encourages healing — its inspiration came from the observation that an incentive spirometer is a very simple game that motivates patients to do better. The idea is that the character in the game will inspire players to fight their diseases and maintain their treatments as well as carry the attitude that nothing is insurmountable into every facet of life.
A growing body of research indicates that playing games reduces nausea and anxiety in people of all ages. Games are increasingly used to treat soldiers with post-traumatic stress. Additionally, Nintendo Wii games have been shown to help senior citizens stay more active and socially connected, staving off the ravages of aging.
The Nintendo Wii was also used effectively to promote physical activity and lift the spirits of adult hospital patients with cancer. "All patients lost time awareness and felt distracted from the daily hospital routine," wrote University Hospital Halle's head of nursing research and development, Patrick Jahn in a journal article for Oncology Nursing Forum. "A majority of patients [also] reported an improved mood state from the game sessions."
Charities such as Child's Play, Extra Life and GamesAid raise millions of dollars in donations each year to provide game consoles, games, toys and a variety of services to sick kids and hospitals around the world. They receive heart-rending testimonials that show that even if games can't cure cancer, they can at least pose a very real therapeutic effect.
Now Gonzalez and his uncle hope to tie it all together — games, cancer, community, teenagers and play therapy. They're building relationships with hospitals, game developers and sick kids, learning what works, what's already out there and what's missing. Their goal is to plug all the gaps, and to make socializing over video games easier for these kids. The Survivor Games is planning an initial test of its social network this spring, with an online arcade rolling out some time after that, which will offer a number of games that are downloadable or playable in a web browser.
The arcade will be built around what they term "survivor games" — games that are fun to play, are largely social and involve cooperation. Not every game is suited to the needs of cancer patients — blood and death can raise stress levels, while many of the more immersive 3D experiences cause nausea, and at various phases of treatment, physically demanding titles may be too much to handle.
"If I can beat a 14-foot monster in a game then cancer is nothing."
Survivor games tend to be more constructive like Minecraft, Gonzalez-Novoa says, and they generally offer more of a blank slate kind of playable character — somebody who players can easily project themselves onto and who will grow in power and skill as the game progresses. "Those days where you feel like you're losing to cancer but you can beat something else," he says, "it gives you that motivation like, 'If I can beat a 14-foot monster in a game then cancer is nothing.'"
They are trying to work with indie developers, who Gonzalez-Novoa believes are best prepared to respond to these needs, with the hope that existing games and game ideas can be adapted somehow. "[Like] this is a great game that kids love," he says, "but ... can we reimagine it as a multiplayer game? Because it's reinforcing their sense of isolation."
It's too early to tell how The Survivor Games and its ideas will be received in medical circles beyond the child life specialists who use play to engage kids every day. But its founder is hopeful. "Everyone that we've talked to so far is really open-minded about doing things differently — approaching situations differently," says Gonzalez. "Even if they don't pick it up right away, they're really open-minded to picking it up. So with some explanation, and just telling my story, they eventually see it. It's really cool to watch it unfold."