Kathryn, like many 18-year-olds, dreamed of attending university. Unlike many her age, Kathryn was undergoing treatment for neuroblastoma when her dream came true.
It was at this point that Sarah Brandon met Kathryn. Sarah is a Counsellor in the POGO School and Work Transitions Program.
“Kathryn was totally spunky and she absolutely blew me away with her motivation to be a university student,” says Sarah. “That was her number one goal. Her number two goal was to fit in and not be seen as different despite being on treatment for neuroblastoma for 14 years of her life.”
POGO Transitions typically supports adolescent and young adult (AYA) survivors of childhood cancer and brain tumours who are faced with significant late effects. These late effects can interfere with their ability to achieve their educational and career goals beyond high school. POGO Counsellors facilitate a smoother transition for these survivors.
A recent study (seeking publication), The Transition to Meaningful Activity for Childhood Cancer Survivors: Understanding the Role of the POGO School and Work Transitions Program (Stasiulis, E., Boydell, K. 2020), reported positive mental and emotional health impacts of the POGO Transitions Program on survivors. POGO hypothesized that extending this support to additional survivor groups, such as youth on-treatment patients, would result in similar outcomes.
In 2021, POGO received $1M in funding from the Slaight Family Foundation for the Program’s expansion. Part of this grant is now funding a pilot project to explore extending eligibility to the Program to include young people, like Kathryn, still receiving treatment while making decisions about their future after Grade 12.
POGO Interlink Nurses work at hospitals with specialized childhood cancer programs and help families navigate the journey of a cancer diagnosis. They identified that there is a small but increasing number of youth still on treatment at a time when they are interested and able to plan for their school and work futures.
Because these patients are facing the additional challenges related to active cancer treatment (including medical disabilities), a collaborative model has been developed in which POGO Interlink Nurses, who have expert knowledge about the clinical care path, will refer clients and collaborate with POGO Counsellors who will apply their expertise in educational and vocational counselling and support.
“Many young people in cancer treatment have a complex diagnosis and treatment protocol,” says Denise Mills, POGO’s Provincial Clinical Lead of Pediatric Oncology Nursing, and Kathryn’s long-time nurse practitioner. “At a time when their health status is uncertain, we are investing in their future and helping them to reach their goals.”
“The accessibility centre at Kathryn’s university was not accessible,” Sarah explains. “She was overwhelmed by the many challenges she faced trying to register as a student requiring accommodations because of her medical disability. Rather than getting the assistance that she required, Kathryn was sent away with a huge task list. This wore on her mental health, affecting her positive, motivated attitude as a student. This is when I had the privilege of using my role to support Kathryn.”
“It was very valuable for me to have constant communication with POGO Interlink Nurse Arvinder Aulakh and Denise, who knew Kathryn and her family very, very well,” adds Sarah. “They were able to give me background information that was helpful to me as Kathryn’s advocate navigating through the Accessibility Centre’s bureaucracy. I was able to speak with the manager and explain how the Accessibility Centre needed to up its game in order for Kathryn to get the support and accommodations that were rightfully hers. From there, we found professional and sympathetic ears that enabled Kathryn to achieve her incredible lifelong goal of attending university.
Tragically, Kathryn passed away shortly before completing her first year but, along the way, she educated her educators on how to support a student like her with medical disabilities. Working with Kathryn was one of the great privileges of my career and such a rewarding experience. Her motivation, wisdom and beautiful family support were not only courageous, but absolutely inspirational to me.”
The POGO Transitions/POGO Interlink pilot project aims to contribute to the continued care and support of youth who are receiving cancer treatment at hospitals with specialized childhood cancer programs and experiencing challenges in navigating the post-secondary and work worlds as a result. The objective is to address this gap in service through a collaborative model of care. Youth included in this pilot project will qualify for a one-time consultation OR ongoing Transitions counselling based on need. After their participation in the pilot project, patients and/or guardians will be surveyed/interviewed about their participation. POGO Interlink Nurses and POGO School and Work Transitions Counsellors will participate in an evaluation to measure the pilot’s impact and success.