How the Germ of an Idea Spread in a Community
By: Dr. Jodi Rosner
The idea for the Kitchener Kids with Cancer Run/Walk came to me while I was running in my first half marathon in 2013. These races can be very inspirational. There are people cheering at the side of the road encouraging the runners with signs like, “Smile if you don’t have underwear on” and “The pain goes away, but electronic results last forever.” Although these signs put a smile on my face, my personal reasons for completing the race were all the memories of the kids I have been blessed to meet in my role as a pediatric oncologist at Grand River Hospital. If they could endure what we put them through when they are fighting cancer, then surely I could make it to the end. The idea to organize a race to raise money for children with cancer came to me that day, growing with each kilometre, and by the time I crossed the finish line, I had the beginning of a plan.
In 2014, the first Kitchener Kids with Cancer Run/Walk took place at the back of the hospital in the doctors’ parking lot. We had about 135 participants and we raised $17,000 in support of POGO and the services they provide to our young patients and their families. We thought this was a great success. Little did we know that this race would grow to be a huge event, touching the lives of many in the community.
We have since outgrown the hospital parking lot. The race now takes place at the Waterloo Region Museum, attracting close to 600 participants. To date, we have raised over $350,000 for POGO. It is incredible to see how a community can come together to fight for such a great cause. This race has turned into a way to support the kids who are currently fighting cancer and to remember those who have lost their battle. I am thankful to all of the families that I have had the pleasure of caring for and for the wonderful committee members who are the real reason that this race is such a success.
The 2022 Kitchener Kids with Cancer run takes place on Sunday, September 11. Everyone is welcome and we look forward to seeing you all there. Learn more at www.kwrunforpogo.com
In 2018, Dr. Rosner was recognized as a valued partner with a Friends of POGO Award. Learn more.
Counselling Programs Help Cancer Survivor Navigate His Career Path
Dirk Noyahr was always proud of the university degree he earned but it took him a long time to come to terms with the one he didn’t. Today, at 26, Dirk is feeling better about his choices. He got there thanks to members of the healthcare team caring for him as a survivor of childhood cancer who referred him to two distinct counselling programs, enabled by POGO.
Dirk was diagnosed with brain cancer—medulloblastoma—at the age of 17.
“I was in what was supposed to be my last year in high school and, instead, I ended up undergoing treatment for cancer.”
Dirk had surgery to remove the tumour and was also treated with radiation therapy and chemotherapy. Throughout his treatment, Dirk was home schooled and gained enough credits to graduate on time.
“I didn’t have the prerequisites I needed to get into a science program like I wanted, so I applied for psychology and spent the first year of university taking the courses I needed to switch.”
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.
Speaking a Family’s Native Language a Source of Psychosocial Support
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.
Sharing a common language reinforces cancer education
“My personal experience is seeing my extended family members struggle with understanding English in different aspects of their lives,” she says. “Through that, I have learned how to use simple words to communicate with families where English is not their first language. And when I meet a family from India, I ask if I should speak Punjabi. Almost always, the answer is, ‘yes.’”
“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.”
