A Friends of Kids with Cancer funded program that some might not know is the AYA Cardinals Young Adult Cancer Program. AYA stands for Adolescent Young Adult and refers to pediatric cancer patients who are high-school age or older. Many people we meet don’t realize that adults can be diagnosed with pediatric cancers, which leaves them in the peculiar position of being treated among children by pediatric cancer doctors, yet having the needs and capacities of an adult. Friends supports all referred pediatric cancer patients, regardless of age, through our various programs
[These kids have] no concept of mortality, not expecting to get that kind of an illness and it knocks you flat. The emotional-psychological aspect of that is devastating to patients.
“[These kids have] no concept of mortality, not expecting to get that kind of an illness and it knocks you flat. The emotional-psychological aspect of that is devastating to patients,” said Dr. Robin Hanson, pediatric hematologist-oncologist and AYA Oncology Program Lead, often referred to as Dr. Rob.
Dr. Rob compares the experience of an adolescent young adult cancer patient to the nursery rhyme Humpty Dumpty.
It’s like Humpty Dumpty is on top of the wall, he falls off and he breaks, and you can’t put him back together. [These AYA kids] feel broken in a way that cannot be fixed.
“It’s like Humpty Dumpty is on top of the wall, he falls off and he breaks, and you can’t put him back together,” he says. “[These AYA kids] feel broken in a way that cannot be fixed.”
He goes on to explain how the AYA program and Friends help prevent patients from feeling broken.
“What we hope to do with all the ways we support them is to lower Humpty Dumpty, pick him up and walk beside him. …[To] go on down the hill and keep them intact.
“What we hope to do with all the ways we support them is to lower Humpty Dumpty, pick him up and walk beside him. …[To] go on down the hill and keep them intact.”
He suggests that the Cardinals Young Adult Cancer Program helps lower the psychological impact of cancer during these vulnerable ages.
In Dr. Rob’s words, through support from Friends, professionals in the clinic like Laura Hanks, Education Specialist, Natasha Westrich Wood, Art Therapist, Dr. Kurt Soell, Psychotherapist and Counselor, Anne Kosem, Life Coach, and Dr. Rob himself, “…the way [we] wrap around them and sustain them, you really can’t put words to how significant that is… I know that it’s real. I know that it’s so important.”
…the way [we] wrap around them and sustain them, you really can’t put words to how significant that is… I know that it’s real. I know that it’s so important.
In 2019, the formal Cardinals Young Adult Cancer Program began, meeting for a support group each and every month. Prior to this, pieces of the program were being implemented at the hospital, including a support group led by Dr. Kurt Soell and Friends co-founder, Jill Turec.
Psycho-social support like the support group is one of five pillars the Cardinals Young Adult Cancer Program addresses and one which Friends solely funds. Other pillars Friends supports are to address financial hardship and education and career support.
Cancer treatment can often be very expensive, take parents and working-age patients away from work, and require childcare for siblings. These costs can add up and become a financial burden to families. Through Friends’ various gifts along a patient’s cancer journey, families are able to offset costs of educational, emotional, and recreational resources. These resources often come in the form of gift cards, therapies, educational tools, or comfort items that make their day a little better. Each and every gift and resource we offer to families and patients is at no cost to them.
These resources are available to all three partner hospitals Cardinals Young Adult Cancer program patients often are still in school, whether that’s high school or higher learning. Some may choose to stay enrolled while some drop out. When a patient returns to school, Dr. Rob explains it’s common for them to suddenly have a lot of challenges with resuming their educational track. With the help of Laura and Dr. Jim Russell, Neuropsychologist and Counselor, patients are assisted in successfully getting back to their school program.
When a patient returns to school, Dr. Rob explains it’s common for them to suddenly have a lot of challenges with resuming their educational track.
If a patient is returning to work, often they need accommodation. Dr. Russell helps them assess what their abilities and challenges are and will work to advocate for them with their employer. Friends supports a life coach, Anne Kosem, often offered during the survivorship phase when, Dr. Rob explains, patients can often become “adrift”. The trajectory they planned for their lives may suddenly no longer be available or no longer look as appealing as it did prior to diagnosis. Anne will meet with them frequently to help sort out what it is they want to do and what steps it will take to get there.
In the early days prior to the formation of the Cardinals Young Adult Cancer Program, Friends arranged for patient teen group vacations, traveling to Boston and other major cities. In 2018, Dr. Soell says they realized an overnight local outing, or “staycation,” would be more cost-effective while still reaching the goals of the trip. Each year since, this Staycation has been planned by the Cardinals Young Adult Cancer Program team. Laura and Natasha create an itinerary full of activities to facilitate group bonding. Traveling in the van together allows for further conversations and expression.
One of patients’ favorite parts of the AYA Staycation is spending the night at a local hotel in a “slumber party” atmosphere, playing games
Laura explains how important the AYA Staycation is to patients.
“It helps so much with the bonding among the group. We have our [support] groups every month but then to be able to leave Mercy [hospital] behind, leave most cancer talk behind, and just go have fun with people who understand what you’re going through …it just builds their friendships so much,” Laura says. “They get to know each other on a different level.”
“A lot of the teens and young adults will say one of the hardest parts of cancer is the isolation that they feel,” says Natasha. “They aren’t connecting with their friends who don’t understand what they’re going through. The support group is wonderful, but to [also] have the experience of Staycation where we’re doing all these fun things together is very powerful.”
Dr. Kurt Soell continues this sentiment. “[At] group, we talk about living life. For about 36 hours we get to live life,” he says. “[During AYA Staycation] they’re living life together, and there is something about it that is really powerful.”
At Friends of Kids with Cancer, our tagline is “Helping kids with cancer… be kids!” and to us, that means providing opportunities for patients to feel normal, to have experiences like many other people their age. This is why we provide big celebrations and seasonal parties – to allow for kids who may be missing out on school holiday parties, holidays at home, vacations with family, or making memories with friends. The AYA Staycation allows for teens and young adults to feel normal and supported among the people who understand them the most during this period in their lives.
“It’s not just that Friends steps in and helps. We absolutely couldn’t do this without Friends. I think the psycho-social part of it is foundational and … is the biggest aid. Friends one hundred percent is responsible for that,” said Dr. Rob. ▪