A healing tool for pediatric cancer patients
Thirty pediatric cancer patients and their siblings gathered last month to work on art and design projects, set up by professional artists and animators, and to learn under the tutelage of artists and volunteers at Pixar Animation Studios in Emeryville, California. This was a destination workshop organized on October 29 by Kids & Art Foundation, a Bay Area nonprofit founded by Purvi Shah in 2008. Shah lost her 9-year-old son, Amaey, to leukemia 12 years ago. She and team routinely organize events to celebrate the healing power of art in the face of pediatric cancer. Recently, the foundation held a fun, community event called “Art Heals Day” at Redwood City’s Red Morton Park that drew around 250-300 people.
For parents and caregivers, these events offer a chance to build community and share their pain with one another. “Community creates healing,” said Shah. “When I started [the foundation], it was one patient and one sibling,” she said, referring to Amaey and his big brother Arjun, who is now 24 and has just finished art school in New York. “I didn’t know what running a nonprofit meant. Most nonprofits start with a board, ours started just with me.” It was only in 2018 that Kids & Art set out to start a board.
At present, the foundation has nine part-time employees, three contractors and 26 volunteers, besides the corporate volunteers and Kaiser nurses who come and help out twice a year.
What began as a way to keep her son creatively occupied in hospital waiting rooms is today an organization that sends out art kits to 22 hospitals in the United States across 13 states. Between January and August this year, Shah’s team sent over 5,000 hand-picked art kits to cancer care centers. By the end of the year, she’s expecting that number to touch 7,000.
For about a year now, they’ve also been shipping art kits to families directly. Parents of cancer patients can subscribe to receive curated, age-appropriate art projects for their kids on a monthly basis. At the time of this interview, 112 families had received 882 kits directly from the foundation.
Emphasizing the importance of the “tactile nature of art,” Shah explained that when kids get chemotherapy, they often experience numbing in their fingers and lose some of their fine motor skills. Intentional art projects can act as a subliminal antidote to that. “You don’t need too many things. Kids spend so many hours in hospital waiting rooms – just take a paper, some color pencils and glue and the whole environment changes.”
The undervalued importance of art in healing
However, conveying the importance of art hasn’t always been easy and raising funds is an ongoing challenge for Shah. “It’s been hard to get people to understand why we do what we do and why we need funding,” she said. By and large, people are quick to see the value of, say, tech-related nonprofits, but “what we do is… with crayons and a coloring book.”
In general, companies that focus on cancer detection and cure attract more funding than groups like Shah’s. “As an arts-based nonprofit for pediatric cancer that doesn’t do cancer research, our area of funding is tiny,” she said. “Yes, research will help them someday, but we’re here for the kids today – and this area has little funding.”
There’s another psychological barrier firmly in place; “Human tendency is – I don’t want to look at kids suffering and with bald heads,” she said, illustrating her point with an analogy: people would rather donate to an organization that is working on fixing homelessness than attend a camp with homeless people. “That’s exactly what this is.”
Shah is grateful to the people who donate. “It’s humanity showing up.” Funds come from grants, individual donors, philanthropists, people donating money in lieu of flowers and wreaths in the name of deceased loved ones, targeted fundraising events, online campaigns and corporate partnerships.
‘The people are the program’
Of course, the pandemic-induced slowdown hasn’t helped, and the way companies and corporations give has also changed over time. “They now give through their employees, who come and volunteer,” she said. Which is great, but she wants to run the foundation like a regular company with salaried employees and not just on the back of unpaid volunteer work. “People think – ‘You’re a nonprofit, why not have volunteers do all the work? Why do you need to give salaries and perks to people?’ This surprises me,” she said. Her message to potential supporters is: “Fund the people. The people are the program.” Shah also hopes to get more funding from hospitals in the days to come.
To her delight, some of the kids who went through treatment with Amaey and survived are now coming back to the foundation as interns and volunteers. “It’s very heartwarming,” said Shah. “And let me tell you, it’s a difficult thing to do; as soon as you’re done with the treatment you do not want to have anything more to do with ‘the C word,’ you want to be out of there. It’s a lot of PTSD. So it’s huge that they’re coming back, it means a lot.”
Her son Arjun is also involved with the foundation. He was a “silent warrior” through Amaey’s illness back then and now keeps his mom anchored to her cause. “Now that the foundation has grown, when I start thinking about data, money and ROI,” it’s he who brings her back to the heart of the cause. She considered stopping a program because too many people from the organization were spending all their paid time on it, and very few kids showed up. At the time, he reminded her that even if it helps one child, it’s worth it. “He grounds me,” she said.
A diagnosis can transform family dynamics
“When Amaey passed away I thought I wouldn’t continue Kids & Art. I felt like there was no reason to go on. But it was Arjun who asked me to continue. He told me how much it had helped him. Art gave him tools to express what he was going through. Until then I had no idea it helped the siblings (of cancer patients) so much. That made so much sense,” Shah said. That’s why she ensures the interests of the siblings are factored into all the activities they plan. When one child is diagnosed, the family dynamics change completely, and siblings, in particular, lead fractured lives, she said.
At the community level, over the last 15 years, Shah has helped destigmatize conversing openly about childhood cancer and death, something Asian families are culturally disinclined to do. “Yes, over the years I have seen a shift in this mindset, but I wouldn’t say it’s mainstream conversation yet,” she said.
She says her story is “not of hope.” But it is of inspiration. She came to the United States from Ahmedabad, India, in 1992 for a master’s degree at Pratt Art and Design School in New York. She moved to the Bay Area in 1995.
Before becoming a cancer caregiver, Shah worked as a full-time graphics designer. Today, the self-confessed “empty nester” keeps her passion for fine arts alive by teaching design research at the California College of the Arts. She’s going to be on the board of the National Organization for Arts in Health next year.
“Life is art. If you live well, you live artfully.”
