ST. LOUIS — Listening to music can lift patients' spirits and bring their focus to things other than the pain. It helps pass the time while waiting for appointments and receiving treatments.
But when Glenn Markway, 21, last week received a free iPod filled with donated songs at Mercy Children's Hospital St. Louis - after weeks of receiving chemotherapy surrounded by cartoons, crayons, plastic dinosaurs and imaginary kitchen toys - he appreciated the thought even more than the music.
"It's really cool that people are starting to focus on young adult cancer patients because either it's usually really young kids or older people, and we really aren't paid that much attention," said Markway, who was diagnosed with leukemia in April.
The iPods might seem like a small thing, but it's part of a growing effort to improve the care and meet the needs of adolescents and young adults with cancer.
While the rates of young children and older adults with cancer being cured have shown dramatic improvements, teens and twenty-somethings haven't seen the same gains, said Dr. Robin Hanson, a pediatric oncologist in the Cardinals Kids Cancer Center at Mercy Children's Hospital St. Louis.
Hanson points to several possible reasons: They have been excluded from national research for new treatments, lack access to health insurance and don't seek treatment as early as they would with a vigilant parent nearby.
"The medical community is coming to recognize that this is a unique population that has not been well-served," Hanson said.
The iPods are thanks to Matt's Mixed Tape, a new program inspired by Matt Cwiertny, who died of cancer at the age of 24. His family started the Matt Cwiertny Memorial Foundation to help improve the quality of life for this young demographic, a need that immediately became apparent when Matt Cwiertny, then 23, was diagnosed.
"They never quite knew where to place him," said his sister, Christine Cwiertny. "He wasn't a kid, but there was a large gap between him and children in pediatric wards. At the same time, he's not an older adult. We kind of struggled with that."
Cwiertny lived in Southern California, was a self-taught guitarist and adored music. He always had his iPod with him through his hospital visits and stays, Christine Cwiertny said. When he couldn't have it while getting an MRI, he focused on the sounds of the medical equipment. "He thought of the beeps as music," she said. One of his favorite bands was Jack's Mannequin, including a song titled "The Mixed Tape."
The idea for iPods - with more than 475 songs donated by a long list of artists - was not only inspired by Matt Cwiertny's appreciation for music but also other incidents, such as when a nurse urged Santa Claus to stop by his hospital room around Christmas. Santa was hesitant because he didn't have an appropriate gift for the young man, Christine Cwiertny said.
"One of the things that we found was that there are a lot of organizations out there focused on cancer patients and doing things that are focused on the younger demographic, and not this age range," she said.
The Cwiertny family also had difficulty finding emotional support services. "They couldn't really steer us toward any group that deals with cancer in this age range," Christine Cwiertny said. "He was just sort of out there by himself."
In February, on what would've been Matt's birthday, the foundation launched the first Matt's Mixed Tape program at the Ronald Reagan UCLA Medical Center, which two years ago was among the first medical centers in the country to create a teen and young adult cancer program. Young people with cancer are treated together in a special hospital unit with adjoined patient rooms around a common lounge to promote interaction.
Mercy Children's is just the second hospital to bring Matt's Mixed Tape to patients. The free iPods, along with new age-appropriate support groups, fit in with the hospital's plan to create its own adolescent and young adult cancer program much as UCLA did, Hanson said.
While the Cardinals Kids Cancer Center has computers and quiet nooks for teens and young adults, "We really want to have a door that they walk in that says 'Young Adult and Adolescent Cancer Center'," Hanson said.
Historically, once a patient reaches the age of 18, he or she is treated as an adult, the doctor explained. In Markway's case, his mother scheduled an appointment with his pediatrician after he was sick for two months. Markway had been suffering with ear aches, sore throats, congestion and even gingivitis. He thought he had mononucleosis.
Tests determined he had acute myeloid leukemia. The pediatrician referred him to the pediatric cancer center, which primary care doctors or internists don't always do, Hanson said. "Our biggest challenge is getting face-to-face with doctors deciding where to send these patients," he said. "We have to convince them that their need is to be treated here."
Markway's treatment consisted of four intensive rounds of chemotherapy about a month apart, each lasting about a week.
Hanson said treatment approaches can differ between young and older adults. Younger patients can tolerate more intensive therapy, but long-term risks from toxicity - such as infertility - must also be considered.
Their emotional needs are also different. Many just moved out on their own. They are finding their independence, planning for the future and feeling invincible when a cancer diagnosis comes.
"It felt like a carpet was pulled out from under me," said Markway, who is living on campus and studying fire and paramedic science at Lindenwood University. He was just about to take a test to become an emergency medical technician when he received the life-changing news.
One of the hardest things, Markway said, was not being able to go out with his friends and stay out late.
"It was tough because I was stuck in a bed. Even when I was home, I didn't have energy to go out and do anything," he said. "I didn't want to hang out with my mom and dad in the house all day, but I was forced to do that."
In the pediatric center, Hanson said, Markway had access to free counseling, movies and video games, tickets to Cardinals games and visits from players. But more age-specific services would help, especially activities promoting social interaction among people the same age.
"Psycho-socially and emotionally, this is a population that has a unique set of needs that aren't satisfied by pediatric or adult offices," Hanson said.
Markway said he was baffled at first as to why a 21-year-old was being sent to a center for kids. But he quickly realized it was better than receiving treatment in a recliner next to patients four times his age.
"I'm so glad they put me there," he said. "It was where I belonged."
