LIFE CAN BE TOUGH for kids dealing with cancer, so hospital psychologist Ethan Schilling makes play a priority. In person, he uses children’s games like Candy Land to create space for connection and casual conversation. During telehealth consultations, he incorporates moments of levity, playing online games with the children or inviting them to create art on a virtual whiteboard.
Schilling works with people under 21 with cancer and blood disorders who are patients at Children’s Hospital of Richmond (CHoR) at Virginia Commonwealth University. He says play helps establish rapport. “It’s about allowing space for that initial conversation,” he says, “getting to know you, helping you to see that I’m a good person, a safe person to talk about things with.”
Through it all, the children set the pace. Some kids and their families waste no time tackling difficult issues like their fear of dying, burnout from disease care or the frustration of missing out on a “normal” life. Others take longer. “This is their timeline,” he says, “their journey.”
Three decades ago, Schilling started his own cancer journey. In March 1993, he was in sixth grade when he was diagnosed with a pineal germinoma, a rare type of brain tumor that accounts for less than 1% of brain tumors in the U.S. “It’s not something I bring up to every client or family,” he says, “but it is something I bring up if I feel like it would be helpful to whoever I’m working with.”
Schilling credits his pediatric cancer experience with setting the course of his career. “I knew I wanted to be in a field helping others, especially those dealing with chronic disease in childhood, and families, as well.” After earning a master’s degree in developmental psychology in 2006 and a doctorate in school psychology in 2013, he spent the next decade moving up the ranks to become an associate professor of psychology/school psychology at Western Carolina University in Cullowhee, North Carolina. During that time, he supervised trainees learning how to provide school-based psychological services. He also developed guidelines on chronic illnesses such as cancer and asthma for teachers and school psychologists so they can give children the support they need as they transition back to school.
At Children’s Hospital of Richmond, Ethan Schilling helps people under 21 with cancer and blood disorders develop healthy coping strategies and come to terms with life changes after treatment. Photo by Jessica Stone Hendricks
In 2023, seeking to work directly with children experiencing cancer and other chronic health conditions, he applied for a postdoctoral psychology fellowship at CHoR. When he finishes the fellowship, he’ll be prepared to work as a licensed psychologist with pediatric patients in cancer centers and hospitals, as well as in private practice.
“Ethan’s background in school psychology—and his specialized interest and experience with serving chronic illness populations within the school setting—seemed like an excellent fit for our program,” says his supervisor at CHoR, pediatric psychologist Jennifer Rohan. In November 2024, she invited Schilling to extend his fellowship training for a second year. “Clinicians and researchers who have lived experience often bring a great deal of insight regarding our patient needs,” she says, “given they have hands-on experience and knowledge that is unique.”
Lightning Strikes Twice
The Schilling family’s first encounter with pediatric cancer came in 1987, when Ethan’s twin, Derek, was diagnosed with a pineal germinoma. The boys were 7 years old. At the time, their mother, Lynne, a pediatric nurse and researcher, worked as a professor at the Yale School of Nursing in New Haven, Connecticut. At first, Derek’s pediatrician wasn’t concerned when Lynne reported that her son was urinating frequently; within a week, however, he was also having vision problems. Over the course of a few hours on a Friday afternoon, Derek was seen by a pediatrician and an ophthalmologist and was referred to the Yale New Haven Children’s Hospital emergency department. There, a neurologist delivered the life-changing brain tumor diagnosis.
Doctors assured the family that Derek’s tumor was highly treatable with a combination of surgery, chemotherapy and radiation. Lynne received time away from teaching and administrative duties to care for her son, but there was no one on the hospital care team seeing to the family’s social and emotional well-being. “I don’t remember anyone saying, ‘How are you managing this?’” she says. Lynne took it upon herself to find psychological help for her and her sons.
The twins, roommates at home and classmates since they’d started school, struggled with the sudden separation after Derek was admitted to the hospital for treatment. “It took a long time for Ethan to come to see me,” Derek recalls. “That was hard for me.” Over time, they found their rhythm, playing Sorry! and other board games in the hospital.
Derek (left) and Ethan Schilling as children. Photo courtesy of Ethan Schilling
Pineal germinoma is such a rare tumor, Derek’s doctors told his parents, that Ethan was at no risk. But in March 1993, when Ethan began having symptoms similar to those Derek had experienced, their parents immediately consulted the pediatrician. “He was very clear in that visit that this wasn’t a tumor,” says Ethan. “My parents, especially my mom, pushed for more imaging and tests, and the neurosurgeon who’d done my brother’s surgery met us at the emergency room. He was the one who informed me and my parents that I probably had the same tumor.”
Like Derek, Ethan had surgery less than a week after his diagnosis. His chemotherapy and radiation spanned the next five months. Derek still laughs about a video he made as a gift for his brother while Ethan was in the hospital. The tape featured Derek and their aunt wearing headbands as they danced to a Richard Simmons workout routine. The goal was simple. “We showed it to Ethan so he could laugh,” Derek says. Three decades later, the brothers say they remain best friends and text daily, swapping memes and jokes to start the day with a smile.
Ethan Schilling, at left, remains best friends with his brother, Derek. Photo courtesy of Ethan Schilling
While both brothers had the same type of brain tumor, each had different long-term effects from treatment, which the family traces to the differences in their radiation protocols. After Ethan’s tumor had been surgically removed from his pineal gland, his radiation was narrowly focused. Even so, Ethan had a stroke that permanently affected his peripheral vision. Derek, by contrast, had whole brain and spinal radiation due to the presence of cancer cells in his spinal fluid. He lost some hearing and faces challenges in processing complex information. In 2008, Derek earned a master’s degree in library science and now works part time as a reference librarian at a public library in Naugatuck, Connecticut, while living with his parents. In 2009, at the age of 28, Derek developed a benign brain tumor in his frontal lobe. “That was pretty retraumatizing for the whole family,” Ethan says.
Finding Solutions in Therapy
At CHoR, Schilling sees patients both in person and online. He provides neurocognitive assessments to guide psychological treatment and support patients’ requests for accommodations at school and at work. He also offers a wide range of therapies tailored to the needs of patients and their families. Two common approaches are cognitive behavioral therapy (CBT) and acceptance and commitment therapy (ACT).
In CBT, therapists help clients recognize and analyze the connections among their thoughts, behaviors and feelings, with a goal of identifying healthier coping strategies. Schilling offers a case study from his own back-to-school experience. He spent the last few months of sixth grade—his final months at the local elementary school—learning at home while undergoing chemotherapy and radiation. That fall, he started seventh grade in middle school, bald and self-conscious. With his peripheral vision newly compromised, he struggled to navigate unfamiliar hallways and find his classes. He was anxious all the time. CBT could have helped, he says, by allowing him to acknowledge his negative feelings and supporting him in finding solutions to his problems.
Access to mental health services is helpful to pediatric cancer patients, but expiring legislation could cut off some options.
Social and emotional support for families coping with pediatric cancer has come a long way since the Schilling brothers were children with brain tumors. Federal legislation mandates that insurance coverage for mental health conditions should be at the same level as for other medical conditions, increasing access and affordability of mental health care nationwide. In 2010, the Affordable Care Act gave people under 21 facing a terminal cancer diagnosis who receive publicly paid health insurance, such as Medicaid, access to both ongoing treatment and hospice care, which provides integrated symptom management, as well as emotional and spiritual support focused on quality of life.
Still, hurdles remain for children facing chronic illnesses, says Jennifer Rohan, who directs psychosocial clinical care and research for Children’s Hospital of Richmond (CHoR)’s Division of Pediatric Hematology-Oncology and Stem Cell Transplantation. Nationwide, there aren’t enough pediatric psychologists and mental health clinicians to meet demand, insurance policies vary widely, and, for many families, burdensome medical treatment plans may complicate access to mental and emotional health care.
“Mental health is physical health,” Rohan says. “As a nation, we need to ensure that patients receive the psychological interventions that they deserve, especially given that mental health can directly influence physical health and vice versa.”
Since early in the COVID-19 pandemic, expanded telehealth offerings in the U.S. have made it easier for families to consult therapists online, free of geographic constraints and transportation challenges. At CHoR, roughly half of the therapy services provided by Rohan’s unit are online, she says. As pandemic-era legislation expires, however, insurance coverage for telehealth therapy is increasingly variable. “The risk we have in the future is if insurance stops covering services, it will only further complicate the mental health pandemic,” she adds.
“You’re dealing with a new world and how you’re seeing the world, and you have no hair and look different—of course you’re going to be freaked out and nervous and anxious,” Schilling imagines telling his younger self. “If I had someone to see those connections and identify strategies to cope with that in a better way, that would have been awesome.”
Ultimately, his family did find solutions. For a time, he attended middle school only in the morning, spending his afternoons napping and recuperating from the lingering effects of treatment. A teacher who insisted on the first day of school that hats weren’t permitted in her classroom acquiesced when the Schillings explained why Ethan wanted to wear a ballcap.
ACT, by contrast, focuses on coming to terms with a new normal. “I’m helping them see, ‘OK, this is my life now. What’s going to be the best way for me to approach this going forward?’” Schilling says he uses ACT to help young people transition from active treatment to cancer survivorship, often as they cope with side effects from treatment such as fertility issues, concerns about heart health, or emotional or cognitive challenges. “Based on my own experience, my brother’s experience, and the kids I’m working with now, a lot of times we see late effects that occur even into adulthood that can be a lifelong challenge,” says Schilling. “In this country, there’s so much of an ableist culture, and a lot of times folks don’t really think, ‘What will this person need as a result of their cancer, in their survivorship journey?’”
Consider his own experience of vision loss, says Schilling. Starting in middle school, he adapted to new methods of finding his way in school hallways, and teachers gave him extra time for tests. In his early 20s, he was fitted with prism glasses and took driving classes. Unfortunately, an evaluation and driving simulation led to a recommendation that he not be issued a driver’s license. “I was pretty devastated but eventually accepted it, learned ways to compensate,” he says. Since he and his husband, Jay Manalo, met in 2010 as psychology graduate students at the University of Georgia in Athens, Manalo has been the family’s sole driver.
Family First
Manalo says he feels a powerful sense of responsibility for his family, a legacy of his Filipino heritage. He always expected to care for his parents, who live in Vienna, Virginia, as they aged, as well as his older brother, Mark, who lived with their parents due to autism that affected his ability to live independently. Then in 2021, Mark was diagnosed with glioblastoma at the age of 46 and died less than a month later. At the time, Manalo and Schilling had been married two years.
Ethan Schilling and his husband, Jay Manalo, met in 2010 while pursuing graduate degrees in psychology. Both have family members who have been affected by cancer. Photo courtesy of Ethan Schilling
Schilling and Manalo’s older sister, Minna, a nurse practitioner who worked at a breast cancer clinic, helped the family to navigate the crisis. “I’m surrounded by these people in my family who have not just the technical expertise working with survivorship but also the lived experience of it and the sensitivity through that,” says Manalo. “It’s a unique thing Ethan brings to his work with cancer survivors.”
Since 2017, Schilling has volunteered with several nonprofits that advocate for families coping with pediatric brain tumors. At patient events, Manalo connects with fellow family members and caretakers. “A lot of times, those of us who are the partners, significant others, spouses, siblings, you have your own role in the person’s recovery, and it’s hard,” he says. “It is its own journey to be the supporter.”
One day, Schilling and Manalo will invite Derek, who has always lived with family, to move in with them. The choice, they say, will be Derek’s. “Having been a cancer survivor has made me reevaluate my priorities, like family will always be the most important thing to me,” Schilling adds. “My parents will always be my heroes because of all they did getting us through this experience as kids. Cancer and brain tumors are a big part of my identity, and I see it as part of my role and passion to advocate and do what I can to make things better for these folks and their families.”
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