Story by: Menisa Marshall on July 10, 2017
Teens and young adults with cancer often fall into a gap between the typical care model for children and for adults. Cancer specialists know that patients between ages 15 and 39 — generally defined as AYA (adolescent and young adult) patients — have unique care needs that can go unmet.
Some of those needs are physical. Others may be social, emotional, psychological and spiritual. Age-appropriate resources and support are critical when it comes to meeting these needs and taking on cancer. That’s why on June 29, 2017, Norton Children’s Hospital dedicated a new unit specially designed for AYA cancer patients.
The experience of 20-year-old Samantha Buchanan underscores how the new unit can make a difference for young adults with cancer. After being diagnosed at age 19 with osteosarcoma, a bone cancer found more often in younger than older individuals, Buchanan spent many nights at Norton Children’s Hospital. She said even just being in a room without clowns on the walls could help those her age feel that “this is where I’m supposed to be.”
As home to the country’s oldest children’s oncology program, Norton Children’s Hospital has more than 8,000 pediatric cancer visits each year. In April 2017, the hospital and Norton Cancer Institute jointly announced the creation of Norton Children’s Cancer Institute, which operates in affiliation with the University of Louisville to give young patients the best cancer care possible through combined resources and expertise.
Norton Children’s Cancer Institute offers Kentucky’s only Adolescent and Young Adult Program and transition clinic. Other unique services include a multidisciplinary pediatric brain tumor program and cell transplant program, plus immunotherapy, a cancer vaccine, sickle cell treatment and survivorship programs.
To connect with AYA cancer services,
call (502) 629-KIDS.
The new AYA unit, which is part of Norton Children’s Cancer Institute, is located within the Addison Jo Blair Cancer Care Center. It represents a $300,000 investment made possible through the support of several key donors. Gifts made through the children’s hospital foundation include $100,000 from Teen Cancer America (founded by Roger Daltrey and Pete Townshend of The Who) and $98,000 from Freudenberg Medical. In addition, Northwestern Mutual recently pledged $30,000 for a nutrition-based program for AYA and pediatric cancer patients.
A “teen room” will be named Owen’s Room in honor and memory of Owen McMasters, who died in February of 2016 at age 16 after a four-year battle with T-cell ALL (acute lymphoblastic leukemia). Funds for this room, which got the ball rolling for the larger project, were raised in part by students from Trinity, St. Xavier, Assumption and Sacred Heart high schools.
A local 4H sewing group presented 30 gowns at the unit’s dedication. Each hand-sewn gown was made with a fun theme that reflects a variety of age groups.
“We are deeply grateful for the ongoing generosity of our community,” said Lynnie Meyer, Ed.D., R.N., CFRE, chief development officer, Norton Healthcare. “We offer our profound thanks to all the individuals and families who have come together to make this special cancer care unit become a reality.”
The AYA cancer unit is a 2,000-square-foot space separated from the larger cancer care unit by double doors. It includes dedicated patient rooms, quiet space for private individual time and a lounge area for social interaction among patients and visitors.
Buchanan called the lounge a great idea since high school and college-age patients often have groups of visitors.
“I’d sometimes have six to seven friends at a time drop by to hang out, which is pretty hard to do in a small patient room,” she said.
Joseph M. Flynn, D.O., MPH, executive director and physician-in-chief, Norton Cancer Institute, credited an advisory committee of current and past patients for providing valuable input on how to design the space. Their efforts are reflected in the amenities, colors, furniture and decorations that grace all areas of the new unit.
“This unit reflects our commitment to care not just for the body, but the person within,” Dr. Flynn said. “Learning you have cancer is life-changing. We are here to meet the needs of adolescents and young adults who are facing a life-changing journey. We will be with them every step of the way.”
The Adolescent and Young Adult Program is jointly provided by Norton Children’s Cancer Institute and Norton Cancer Institute. This program brings together expertise in pediatric and adult cancer care into one program that is best suited to provide support that meets the needs of this age group.