Tethered to an IV, but able to escape
Published 12:00 am Sunday, December 21, 2014
- Emily Berl / New York Times News ServiceSeven-year-old Matthew Cobb, right, plays a video game with his brother Micah, 8, while getting an infusion treatment for his auto-immune disorder at the Infusionarium at the Children’s Hospital of Orange County in California. The video, gaming and internet capabilities of the Infusionarium help normalize the grueling regimen of infusion treatments that some child patients must endure.
ORANGE, Calif. — Nick Meza, 18, recently had another five-day round of chemotherapy at the outpatient clinic here at Children’s Hospital of Orange County. Usually those days drag for Nick, an Eagle Scout with a flashing grin, a hunger for conversation and acute lymphoblastic leukemia.
Like most patients who get intravenous medication at a pediatric clinic, Nick typically receives treatment in a small, curtained cubicle with hospital-green walls, outdated video games that are often broken, tiny TV monitors and dividers that don’t muffle hallway clatter or the wails of a child in the next cubicle.
But now Nick, whose baseball cap doesn’t disguise his gleaming bald head, emerges from his cubicle, holding his IV pole. He saunters down the hall toward velvety black curtains. Parting them, he slips inside and eases into a reclining chair.
Adrenalized thumping music fills the makeshift space, called the Infusionarium. Roiling close-ups of extreme sports spring across four high-definition monitors, each 5 feet tall: skateboarding stunts, parachute-skiing, kayaking over waterfalls.
Nick is entranced. After a while there’s a beep on his IV: The infusion is finished. He is oblivious. “That’s crazy!” Nick shouts at race cars careening across the monitors. “This is awesome!”
According to the National Cancer Institute, nearly 16,000 new cases of cancer will have been diagnosed this year in infants and children up to 19 years old. On any given day, thousands of these young patients are receiving chemotherapy at outpatient infusion clinics. Children are also treated with infusions for other illnesses, including Crohn’s disease, juvenile rheumatoid arthritis, sickle cell anemia and immune disorders.
The long-term impact can leave some patients with post-traumatic stress.
“It can be horrific,” said Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at the children’s hospital here. “We should be doing better psychosocial work with them throughout their cancer experience, so they don’t feel like victims.”
Now, as five-year survival rates for some pediatric cancers climb to 90 percent, medical teams are paying more attention to making outpatient treatment less formidable and more responsive to the patient’s psychological needs.
That’s no small challenge when patients at a pediatric clinic range in age from newborn to 25 years old.
To calm and distract them, researchers have tried aromatherapy, teaching patients self-hypnosis, having them make music CDs and giving them candy before medication.
Some clinics are being redesigned to encourage patients, especially reclusive teenagers, to be more social. The infusion clinic at Cook Children’s Medical Center in Fort Worth, Texas, now includes play areas for younger children and long tables for teenagers to do their homework and watch TV together.
If teenagers want to document their cancer treatment, the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center gives them cameras to use. Its outpatient infusion clinic, which reopened this fall, features a large, light-filled space with activity tables and clusters of treatment chairs.
“We want to make sure they don’t lose their childhood,” said Lisa Scherber, director of patient and family programs. “The teenagers can stay together, but they can also enjoy watching the 4-year-olds do silly stuff. We intended the space to help them feel, ‘I’m not alone in this.’”
Treated like children
The Infusionarium is the Children’s Hospital of Orange County’s latest effort to normalize the arduous visits.
Sender had long wanted patients to have some positive associations with treatment, to feel “more complete and whole.” If he ever needed chemotherapy himself, he said, he would want to lose himself in a tranquil, enjoyable environment: “Could I get my infusion in an aquarium?”
He put the question to Roger Holzberg, a former creative director and vice president at Disney Imagineering, and also a former cancer patient.
In July, Holzberg installed the Infusionarium (infusion + aquarium).
Its black curtains invite patients to peek inside, where pinlights woven into the fabric twinkle like starlight. With the communal feeling of a cozy theater, it has room for four treatment chairs and seating for visitors — an ad hoc area intended to make a permanent difference. It offers patients a menu of age-appropriate selections, allowing them to be happily distracted, engage with one another, or connect with friends and family. The treatment chairs provide access to five broadcast channels, including social media (allowing patients to Skype, check Facebook), video games and movies.
The Infusionarium, which cost about $100,000, has another transporting feature: live feeds. Recently, young patients with IV poles and their relatives crowded into the space for a talk with staff at the Monterey Bay Aquarium, some 350 miles north.
Driven by distraction
Technology is not the only way the center engages patients. Like most pediatric hospitals, it employs therapists known as “child life specialists.” Christy Campo’s tools include a soothing voice, as well as finger paints, crayons and Scrabble. When a sick child is having a bad day, Campo and the patient may draw an archery-style target on a whiteboard, label each circle with a complaint, and then, with water-filled syringes, take gleeful aim.
But such activities may not work for teenagers and young adults. Robert Noll, a psychologist who is chairman of the behavioral science committee of the Children’s Oncology Group, a national consortium, noted that cancer confounds normal adolescent development, when “part of your mission is to go off and do stupid things,” he said. “But instead, ‘Now I need my mom and dad.’”
If technology, such as that used in the Infusionarium, can be harnessed to help teenagers express themselves, he said, he is all for it.
But like all teenagers, these patients both want to assert their individuality and long to be just like everyone else. The Infusionarium gives them a cool place to hang out with one another.
“We want to help them realize they’re all struggling with the same issues,” said Dr. Heather Hawthorne, an oncologist at the Orange County hospital. “If you can improve that, you can improve their whole cancer treatment. You take kids who would have crumbled and fallen to their disease and, instead, helped them use it to become strong, resilient people.”