For over 100 years, Lions Clubs around the world have served to improve health and wellbeing, strengthen communities and support those in need. Recently, Lions International added childhood cancer to their roster of global causes, promising to increase acts of support to families and children affected by cancer. This year, the Elmvale District Lions Club chose POGO as one of their beneficiaries of their annual truck draw, pledging $20K for POGO in 2022. In July, POGO sat down with Elmvale member, and Club president, Jenn Rebidoux to talk about their event.

POGO: Tell us about your personal experience with childhood cancer.

Jenn: I think we all have a personal story to share.  Mine is our eldest son, although not a young child, was in his 20s when he was diagnosed with a rare cancer. Our community rallied around our family to help us get through the diagnosis and the grueling treatments he went through. The chemotherapy and subsequent surgeries have been life altering for him.

POGO: How did you first hear about POGO and the work we do?

Jenn: During his District Governor year, Lion Jamie Jones introduced us to POGO. He is extremely passionate about this cause and connected us with POGO’s Chief Development Officer, Lynn Wilson, and POGO Interlink Nurse Tina Hamalainen who set up a Zoom meeting for our members to learn more about the impact our possible support would have on families affected by childhood cancer. We watched an incredibly compelling video that really demonstrates what families go through when their child is diagnosed with acute lymphoblastic leukemia. I don’t think there was a dry eye in the house. We also learned about how POGO Satellite Clinics across Ontario help families stay closer to home when their child is in treatment—two of these clinics are relatively close to our Club. I believe it took about five minutes for us to decide unanimously that we would support POGO with our annual fundraiser.

POGO: $20K will have a big impact on families with a child in cancer treatment. How did you raise such a large donation?

Jenn: Our Club’s Annual Truck Draw. This campaign is a major fundraiser in our community. Annually we raffle off a Ford F-150. We are so grateful to the ongoing community support, and I believe our participants would be proud funds raised though this campaign support such a worthy cause.

POGO would like to gratefully acknowledge the Elmvale District Lions Club and all the ticket purchasers of this year’s truck draw for their support.

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.”

“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.

However, school wasn’t as easy as it was before.

“I struggled with memory, multi-tasking and focus. Still, in 2018 I graduated with a degree in biochemistry from York University and soon after was accepted into the radiation therapy program at the University of Toronto, a joint program with the Michener Institute of Education at University Health Network.

I picked the radiation program because, as a cancer survivor, I felt I could be supportive to other patients going through the same thing. I just wasn’t sure if it was the right choice for me. I was also processing my own and my parents’ thoughts and feelings about the time and money I had already spent obtaining a biochemistry degree. 

Luckily, it was at this time when I met Barb, my POGO School and Work Transitions Counsellor.

I was at one of my annual appointments at the POGO AfterCare Clinic at Princess Margaret Cancer Centre. I had been discussing some anxiety about my new career path and the POGO School and Work Transitions Program was recommended to me.

Barb helped me conclude that it was okay for me to have this newfound aspiration, and she was instrumental in helping me win a $5000 scholarship for childhood cancer survivors to pursue it.”

Then an unfortunate and unexpected situation happened during Dirk’s clinical practicum.

“I felt the trauma of treatment come back to haunt me. I was reserved and had trouble interacting with patients and other therapists. The school requested I take a break until January 2020 with the stipulation that I get support to help me manage.

Barb attended meetings with me at the university and facilitated letters to help in the adjudication process. She acted as a sounding board throughout. She also arranged for me to defer my scholarship until my return to classes. 

When I returned to school, things were going well until my last year, during my placement. It was only then, doing the job, that I realized what it was truly like and I found it wasn’t right for me. There was too much loud talking, shouting out numbers and instructions, and working at a fast pace while making sure everything was accurate; this just didn’t suit me after my cancer diagnosis. As someone who likes to take his time, not make quick decisions that can literally harm patients if I get the decision wrong, I just could not see myself doing this full time until I retired.”

Dirk’s career path to radiation therapy changed around the same time that the pandemic turned everyone’s world upside down. He found new pursuits; one of them was drawing on a latent interest in technology. Through online instructional videos, he began learning about web development and programming his own web applications.

“I didn’t pursue this before because I always felt pressured to go into healthcare—maybe because of my desire to give something back based on my diagnosis and survival. Then, I was on a virtual appointment with a nurse practitioner in my POGO AfterCare Clinic. I told her about my feelings related to the change in my career path and she referred me to the Canadian Cancer Society’s (CCS) Pediatric Family Counselling Program at Princess Margaret Cancer Centre.”

In keeping with POGO’s Childhood Cancer Care Plan goals to address the growing need for psychosocial services, POGO facilitated bringing the CCS pilot program to a POGO AfterCare Clinic to help survivors manage the impact of cancer on themselves or their family. The program complements the excellent personal care survivors receive in the POGO AfterCare Program by providing individual, private and confidential counselling to address ongoing needs or challenges. The program follows a brief therapy model, which is time-limited and focuses on the client’s presenting symptoms and current life circumstances. It emphasizes the strengths and resources of the client. 

Through his CCS counsellor and Barb’s ongoing support, Dirk has come to realize some important things about moving on from radiation therapy.

“Before counselling I felt scared about leaving the comfort zone of a career I was pursuing for three years of my life. I feel more confident now. I know nothing in life is easy. I have to work to get to where I want to be in the tech field. I also now see that healthcare is not the only way to help other cancer survivors; maybe there’s a way to help through this growing field of tech. Thanks to the resources of my CCS counsellor and my POGO Counsellor, I feel like I can be successful. I know I’m on a good path.”

Dirk has added the title of Presenter in the POGO Survivor to Survivor (S2S) Network to his list of achievements. In 2022, he will be leading presentations for other childhood cancer survivors on self-advocacy, something he has learned through trial and error over the years. Dirk sees his S2S presentations as another way he can give back to others and share some of his knowledge and life experiences after treatment so it can help others in a similar situation.

Arvinder Aulakh has been a pediatric oncology nurse at SickKids for over 18 years. In 2020, she joined the team of POGO Interlink Nurses working in hospitals across Ontario to provide culturally sensitive, family-centred care when a child is diagnosed with cancer. POGO Interlink Nurses help families navigate the healthcare system throughout the child’s cancer journey. They are invaluable members of the child’s healthcare team helping families decipher unfamiliar medical terminology; working with interpreters to remove language barriers; providing school support for the child, classmates and staff; locating community resources; and supporting siblings and other family members. Arvinder works with families in the Peel/Halton region of The Greater Toronto Area, and does so in English and her native language of Punjabi, with a solid understanding of Urdu and Hindi. The therapeutic relationship POGO Interlink Nurses are able to establish with families is unique, and speaking a second language has allowed Arvinder to make an extra special connection with many in her care. She knows what it can be like to encounter barriers when English is not your first language and she brings that sensibility to her work with families.

“Many families trust the medical teams caring for their child. When I meet families, they are reassured that their child’s care plan meets a standard of care across North America. Families feel supported when treatment education, school and work are discussed because these are aspects of their lives they worry about when their child is diagnosed.” 

“My ability to communicate with children and their families in their native language of Punjabi gives them the opportunity to express their experiences through the cancer trajectory. Families are able to ask questions to understand the diagnosis, prognosis, treatment plan, and support systems available in their community and school planning.”

Giving voice to psychosocial support 

Home visits are an integral part of the POGO Interlink Nurse role. During visits, nurses can meet the extended family, like grandparents. When there is no language barrier, all family members are able to participate in the healthcare teaching Arvinder does because they understand the information and can ask questions. The psychosocial support this offers is enormous for the family and child in treatment.

“Parents and other family members who are able to express themselves in their language are able to look for emotional and mental health supports as opposed to only practical support,” says Arvinder.

​“I can remember one mother telling me that she felt so relieved that she could call me anytime with a question or concern and speak in her language. Another mother said, ‘it was nice to just talk.’”

“Working with these families, I have learned that they may not have been fully aware of the supports available to them because they didn’t understand the information given to them in English. I have been able to encourage families to advocate for themselves which allows them to feel empowered.”

“Speaking to families in Punjabi has allowed me to provide care that is unique to their needs based on their cultural, religious and spiritual backgrounds. This ultimately helps reduce their stress.”  

​“With my cultural knowledge, I am also able to understand a family’s decision about certain aspects of care. For example, some families have specific prayers that are done on specific days that might interfere with treatment days. I can advocate for these families to have a one-off change in their treatment day to accommodate the prayer. I also understand the cultural context that families reference, like certain foods, holidays and customs.”

Arvinder became a POGO Interlink Nurse to develop pediatric oncology skills in other aspects of care, namely providing specialized childhood care with an additional focus on supporting extended families, the child’s school community and family’s wider community. She believes that families appreciate the ability healthcare providers have and effort they make to offer culturally sensitive care. For the families in her care for whom English is not their first language, Arvinder says, “I have a lot of empathy for these families. As a proud South Asian woman, I am especially privileged to serve South Asian families in my catchment area.” 

In May 2022, the POGO Board of Directors announced the appointment of board member Michelle Johnston.

Michelle brings lived experience with the childhood cancer care system having supported a close friend through her child’s diagnosis and lengthy treatment for leukemia.

“POGO’s mission is near and dear to my heart,” says Michelle. “I look forward to contributing to POGO in ways that will help ensure all those affected by childhood cancer receive the best possible care and support.”

A proud northerner from Timmins, Ontario, and as a woman with mixed European and Indigenous ancestry, Michelle has burst through glass ceilings throughout a career spanning 30+ years in the provincial energy sector. She currently serves as President of the Society of United Professionals and as Chair of that union’s Board. During her tenure at the Society, Michelle has maintained its strong financial position and led successful organizing campaigns to grow the Society’s membership. Michelle also has extensive governance experience.  Her additional current appointments include Vice President (Canada) of the International Federation of Professional and Technical Engineers, Chair of the Canadian Nuclear Workers Council, a member of the Canadian Labour Congress’s Canadian Council, a member of the United Way of Greater Toronto Executive Board, and a director of the Ontario Federation of Labour, Canadian Nuclear Association and Electricity Human Resources Canada.

The POGO Board and team look forward to working with Michelle to help achieve an excellent childhood cancer care system for children and youth with cancer, survivors and their families.

Meet the POGO Board of Directors