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Immigrant Families and the Childhood Cancer Journey
Vinesha Ramasamy was 15 years old when she started noticing a lot of swelling and sharp pain in her left leg. The intense pain made it difficult to walk and almost impossible to go up and down stairs. Her family’s physician thought it was typical of adolescent muscle strains and Vinesha was told repeatedly to take pain relief and take it easy.
“Thankfully, an amazing teacher took notice,” says Vinesha. “She reached out to my parents and told them that my symptoms didn’t seem normal and strongly urged us to go back to the doctor and insist on an X-ray. When the family doctor got the results, he immediately referred us to an orthopedic surgeon. When the surgeon was going over the X-ray with my family, I stopped him and asked, ‘Do you think it’s malignant?’ He paused and said, ‘I think it might be, and that is what we are going to try to find out.’ My mom hesitated. She didn’t know what ‘malignant’ meant.”
Vinesha and her family arrived in Canada as refugees from Sri Lanka when she was a child. English was her parents’ second language and they had no social network to help them navigate the healthcare system. In that moment, Vinesha knew she was going to have to guide her parents through everything that was about to come next. Indeed, in the days, months and years that followed, she was the one taking notes and explaining everything to them.
Alyson Bierling is a recent graduate of McMaster University’s global health master’s program and a registered nurse in the pediatric hematology and oncology inpatient ward at McMaster Children’s Hospital. The Ramasamy family’s experience does not surprise her. At the 2021 POGO Symposium, she shared preliminary findings presented in abstract (summary) format on the challenges faced by immigrant families experiencing a diagnosis of childhood cancer.
“While a childhood cancer journey is arduous for any family, these families struggle in unique ways,” says Alyson. “Immigrant families are often left in the dark about the condition of their child due to language barriers, cultural needs often go unmet, and families grapple with a complicated and unfamiliar healthcare system that is structurally inequitable.”
In the early days after her diagnosis, Vinesha went through ten months of aggressive, high-dose chemotherapy with many complications and side effects. She was supported by POGO through the POGO Satellite Clinic at Credit Valley Hospital, allowing her to have some of her tests, monitoring in between chemotherapy cycles and hundreds of blood transfusions done closer to home.
“POGO also offered much-needed financial assistance for basic things like meals—without that, I know it would have been almost impossible for my parents to handle the responsibilities that come with parenting a child with cancer,” says Vinesha.
Related Content: A Search for Health Care beyond Survival: Rabi’s Story
Three days after her 16th birthday, she underwent surgery and was luckily spared from a leg amputation. However, because drastic amounts of muscle were removed and her leg was reconstructed internally with prosthetics, Vinesha was told she wouldn’t walk again and was given the slim hope that with a lot of physical rehabilitation, maybe, someday, she would progress to an assisted device.
“I was officially disabled,” she says. “My parents were working minimum wage jobs without any private insurance or financial coverage for physiotherapy or special equipment. Subsidized support would have greatly accelerated my recovery, but we weren’t aware of any available resources. Instead, I learned some exercises and spent the next twelve years doing a few minutes of daily physio in my bedroom with Velcro straps, an elastic band and some ankle weights. I can now walk with some challenges, but it is tragic for me to think about how that lack of specialized, focused physical therapy has affected the rest of my life.”
Alyson’s research confirms that families like the Ramasamys are often isolated and lack support to assist with their practical and emotional needs.
“Immigrant families face discrimination and often receive disparate care,” she says.
Her research sought to identify strategies that childhood cancer programs can implement to address these barriers.
“If we do not address them,” she adds, “the socio-cultural and systemic disadvantage already experienced by immigrant families will be further exacerbated. Addressing barriers may ease the demands placed on families and promote more equitable care for immigrant patients.”
Strategies for Addressing Barriers Faced by Immigrant Families from Alyson Bierling’s study titled Exploring the Challenges Faced by Immigrant Families Experiencing Childhood Cancer: A Scoping Review
- Address language barriers – Provide a specialized and consistent translator and do not use children as interpreters
- Bridge cultural differences – Use cultural interpretation services; acknowledge and validate alternative understandings of disease and approaches to care
- Facilitate connectivity and support – Provide peer-to-peer support programs for families who share similar linguistic and ethno-cultural backgrounds
- Confront discrimination – Make it a priority to eliminate disparate treatment of immigrant patients and engage in reflexive practice to acknowledge biases
- Meet practical needs – Identify families with financial and other needs and ensure they are prioritized for services
“Today, after also having survived a serious lung cancer recurrence, I am blessed to be monitored regularly for late effects at a POGO AfterCare Clinic in Toronto,” says Vinesha. “I am truly grateful to be alive, however, I know things could have turned out better for me and for many other survivors and families like mine. Many immigrants and refugees that come to this country have a ‘don’t-make-a-fuss’ mentality. They may be in survival mode or suffering from PTSD. It is essential for doctors and hospital staff to keep in mind that just because we are not persistently complaining it doesn’t mean we are fine; it could just mean we are not being asked the right questions.”
Vinesha Ramasamy is a two-time cancer survivor. She graduated from the University of Toronto with High Distinction at the top of her graduating class in commerce and finance, and currently works in global sustainability and corporate citizenship at a major financial institution. Her life revolves around contributing to various not-for-profit organizations in mentorship, advocacy, public speaking and striving for policy reform with the goal of equitable outcomes, healing, dignity and better lives for everyone, primarily marginalized groups. Vinesha spoke at the POGO AfterCare Education Day on May 14, 2021, where she shared her lived experience on intersectionality within the healthcare system with childhood cancer healthcare workers from across Ontario.
Alyson Bierling has been practicing as a registered nurse in the inpatient pediatric hematology/oncology unit at McMaster Children’s Hospital since 2019 and is currently working as an oncology nurse educator in Rwanda. She received her Bachelor of Science in Nursing at McMaster University in 2018 and went on to complete her Masters of Science in Global Health at McMaster University in 2021. Alyson’s research and clinical interests include health equity and refugee health. She leads a working group that focuses on improving care for culturally and linguistically diverse patients.
Presentations Help Survivors Build Skills
The 2022 Survivor to Survivor (S2S) Network presenters have been chosen! The four presenters are ready to work with topic experts to create presentations on subjects that matter to the childhood cancer and brain tumour survivor community.
Payton’s topic is how volunteering and networking can help survivors find jobs. She says, “I am so passionate about this topic because I have been fortunate enough to benefit from the services of many volunteer-based organizations. I have seen what a difference volunteers can make and just how integral they are to these organizations. I am looking forward to sharing this passion with the S2S Network!”
Dirk, who’ll be presenting on how to speak up and advocate for yourself, believes that S2S sessions can help childhood cancer survivors, especially when they’re transitioning from treatment to the “real-world.” He says what’s so important is that survivors not only learn from the content of S2S sessions, but they also get to connect with other survivors and feel that they’re not alone.
Olivia will be presenting on how each childhood cancer or brain tumour survivor’s journey is different and shouldn’t be compared to anyone else’s. She knows that after treatment, survivors often need to learn how to regain confidence in their ability to grow and learn, and she wants them to know that there is no deadline to be successful.
Faiza’s session will be about how to deal with difficult conversations that can come up about cancer and survivorship, and things survivors can do to support their wellbeing. She says, “I never felt such a deep connection with others in terms of cancer until I joined last year’s S2S session. If you struggle with any late effects of cancer, I’m sure the workshops will be a great source of inspiration for you, as much as they were for me. I can’t wait to see you there!”
Watch your email and follow us on Facebook and Instagram for the dates of each S2S session!
Sign up for POGO Transitions eNews Newsletter and get S2S Workshop updates.
Learn more about POGO’s Survivor to Survivor (S2S) Network.
Learn more about the POGO School and Work Transitions Program.
Dr. Ewurabena Simpson Discusses Culturally Respectful Health Care
A conversation with POGO Transitions Counsellor Sarah Brandon and her respected colleague Dr. Ewurabena Simpson.
Dr. Ewurabena Simpson is a staff physician in the Division of Hematology/Oncology at CHEO where she works with childhood cancer patients. She is also the Program Lead for CHEO’s Sickle Cell Disease Program, the Assistant Dean for Equity, Diversity and Inclusion at the University of Ottawa Faculty of Medicine, as well as an Assistant Professor. Outside of work, Dr. Simpson is a proud mum and family member, an avid tennis fan and a seriously outstanding soccer player.
Sarah: We know that representation matters. Can you describe what that means for Black patients and their families?
Dr. Simpson: Speaking from my own experience as a patient, having a pediatrician who was also from the Black community had an important impact on the therapeutic relationship that my pediatrician had with me and with my family. Seeing someone from a similar cultural background meant that our pediatrician understood how our skin tone may have changed the way that certain conditions manifested on my complexion and how our cultural background influenced my family’s views on health and learning. It also meant that our family felt safe discussing specific challenges and experiences of subtle or overt racism as we settled into our life in Canada. One of the most lasting impacts that having a Black pediatrician had for me was that it helped me to see myself as a future physician, that I also belonged and that I could make a difference in the lives of all children regardless of their backgrounds.
Sarah: What does culturally respectful health care mean to you and what are 3 goals to strive for?
Dr. Simpson: I don’t think that there is a right answer to this question but in my mind, a commitment to culturally respectful health care would imply that we as healthcare providers will maintain an awareness and openness to others regardless of whether they are similar to or different from ourselves.
Dr. Simpson’s Three Goals for Culturally Respectful Health Care
- It is important to acknowledge that we all come from different life experiences and cultural backgrounds that will influence the way that we experience health and access health care.
- As healthcare providers, we should be aware that we cannot know everything about another person’s experience.
- We should remain humble and open to learning about our patients’ cultural backgrounds and experiences so that we can respond to and support their health needs in a way that is sensitive to and respectful of their culture.
Sarah: What can healthcare providers do in their practice to ensure Black patients feel safe and heard in our care?
Dr. Simpson: With each and every patient, it is important for us to check our personal biases and to be aware of how they may unconsciously influence our daily interactions and our approaches to patient care. When caring for Black patients, it is important to recognize that being Black does not represent a specific belief system, group of behaviours or any cluster of health attributes. Each patient is an individual and every family is a unique unit. As a healthcare provider, you should treat every patient encounter with an open mind and avoid making generalizations or assumptions that are based on a patient’s racial or cultural background. While being of African or Caribbean descent may be associated with race-based disparities in health, we should always remember that a patient’s health and experiences are shaped by much more than their physical attributes.
Sarah: What is the importance of honouring Black History Month in hematology and oncology as part of the continued fight against racism?
Dr. Simpson: Black History Month is our opportunity to celebrate the ongoing contributions of African, Caribbean and Black communities in Canada. By acknowledging these contributions and these communities in medicine and in hematology/oncology, this inclusion reinforces the fact that we all belong in this community, that we all have a role and that we all have a voice.
Sarah: Do you have a message for our Black childhood cancer survivors this Black History Month?
Dr. Simpson: You have gone through a long and difficult journey to overcome your illness and to get to a place of better health. You are among our champions for childhood cancer and for Black history. You inspire all of us and we hope that you feel cared for and safe in your medical care and in your day-to-day lives. If there are ways that we, as your healthcare providers, can be more supportive and sensitive in your care, we are open to doing better.
While this article was written in recognition of February being Black History Month, POGO recognizes that continually providing culturally respectful health care contributes to our vision of an excellent childhood cancer system. Read POGO’s Diversity, Equity and Inclusion statement.
Sarah Brandon is a POGO Transitions Counsellor working at CHEO and Kingston General Hospital to empower youth and young adult survivors of childhood cancer and brain tumours in their transition from high school to post-secondary education or work.
Advancing Childhood Cancer Care in a Post-COVID World
A Synopsis of the 2021 POGO Multidisciplinary Symposium on Childhood Cancer
The COVID-19 pandemic has healthcare providers and the families in our care literally hiding emotions behind masks. Family members cannot fully see the empathy we feel, and as providers, we are unable to use our traditional methods of providing compassionate care. Over the past 18 months, families have had to live their cancer journey in parallel with a global pandemic requiring multiple restrictions to hospital visits, with additional screening and COVID-19 testing. This has elevated levels of distress and burnout for families and hospital care teams alike. Recognizing this, the 2021 POGO Symposium planning committee sought to explore the issues of patient and caregiver distress and resilience, as well as healthcare provider burnout. As part of maintaining professional resiliency beyond the acuteness of COVID-19, the POGO Symposium provided an opportunity to learn about important clinical and diagnostic updates, and continued healthcare and scientific innovation.
Family Stories Remind of our Purpose
A parent testimonial opened day one and grounded us as pediatric oncology professionals in the “why” of our work. In sharing about her 14-year-old daughter’s cancer diagnoses, Guylaine Tremblay touched on the importance of psychosocial supports for all family members. On day two, the Saenz family gave real-life context to the challenge of accessing clinical trials that so many families face. These stories were powerful reminders of the impact a childhood cancer diagnosis has on the family and how the pediatric oncology community must better understand these needs and provide comprehensive and personalized support.
Care for Caregivers of all Stripes
When it comes to caregiver resilience after their child is diagnosed with cancer, we heard that 80% of families will adapt and be resilient based on our standardly-delivered supports and strategies. Of critical importance is finding a way to identify the remaining 20% who will need intensive psychosocial and possibly psychiatric support, and to ensure there are suitable professionals available for referral and intervention. Healthcare teams must also make room for self-compassion in our stressful and often chaotic work days, as we try to leverage available resources to assist families who require extra support.
Delivering Virtual Care to Survivors
The COVID-19 pandemic has also dramatically altered the way we deliver care, and especially aftercare to survivors, with the rapid implementation of virtual care. We learned what can be done well, what was of benefit to patients and families and what could be successfully carried forward in a post-pandemic world. New and innovative approaches to follow-up care include recognizing unique needs tied to the transition from acute care to survivorship clinics.
Clinical and Diagnostic Advances Bring New Hope
Of course new innovations in childhood cancer continue to emerge, and presentations on clinical and diagnostic advances added greatly to our learning. Work in the area of immune checkpoint inhibitors shows great success in treating Hodgkin lymphoma and promise for other diagnoses. It was exciting to hear about updates on CAR T for both B-cell leukemias and acute myeloid leukemia (AML), one of the more difficult childhood cancers to treat. This brings signs of hope for improved outcomes with less toxic therapy approaches. Potentially ground-breaking work in liquid biopsy allows us to imagine a world where we no longer need invasive, surgical intervention to detect cancer both at diagnosis and during cancer surveillance.
Innovation Panel Explores Strategies for Canada
The POGO Symposium wrapped up with a slate of presentations and a panel discussion with luminaries in the field that tackled everything from innovative solutions to improve clinical trial access to how Canada can develop an innovation strategy that serves patients and the economy. The message that innovation is not only invention but the successful development and implementation of these inventions was very strong. This session also highlighted our collective challenge to make available new and often expensive therapies. The discussion presented the opportunity for all of us to consider how we can individually and in partnership move the needle on public policy for advances in pediatric cancer.
With something of interest for everyone, the 2021 POGO Symposium showcased the bravery of families to help us all learn from their stories and the tremendous dedication of professionals who continue to do everything possible to provide excellent care to every child diagnosed with cancer. My hope is that we were all encouraged to heed the challenge of harnessing innovation to transform the landscape of pediatric oncology care.
“Even during the most chaotic day it is important to take a moment to breathe and remember why we chose this very important work, and to be present with our patients and families.”
– Sue Zupanec
Written by Sue Zupanec, co-chair of the 2021 POGO Symposium Planning Committee, with contributions from her co-chair, Dr. David Hodgson, POGO Medical Director and Chair in Childhood Cancer Control.
Sue is a pediatric nurse practitioner in the Leukemia and Lymphoma Program at The Hospital for Sick Children, and Chair, Nursing Discipline of the Children’s Oncology Group.
Family Pays it Forward with Pajamas and Pancakes Event
The Welke family put on their PJs, turned up the griddle and opened their home to the community in Stayner, Ontario, to raise funds for POGO. The event was in honour of their daughter Gwendolyn who was five years cancer-free!
POGO helped us when Gwendolyn was diagnosed with an adrenal cortical carcinoma—they provided us with financial assistance when we had to travel to Toronto, and because of the POGO Satellite Clinic in Orillia (Soldiers’ Memorial Hospital), we were able to stay closer to home for some of her treatment. Without the Clinic and financial support, I don’t know how we would have made it through.
When we received the notice in the mail about Pajamas and Pancakes, I turned to my husband and said, “Why don’t we do a small event with our friends and family to raise money for other families going through treatment?”
Want to host your own Pajamas and Pancakes event? We’re here to help! Learn more here.
Our original goal was $1,000 and we thought even that was crazy, but things really took off. I sent print and Facebook invitations to our personal contacts and families who we met at the Orillia Clinic. When a local real estate agency heard about our event, they asked us if we wanted them to advertise for us, so we ended up opening it to the public. We offered coffee, juice, sausages, three pancakes and a topping bar full of whipped topping, chocolate chips and Skor pieces for a minimum donation of $5. We also had a silent auction with a good variety of items donated from friends and family with home businesses.
In the end, over 100 people came through the house, many who we had never met before, and we raised $3,000 for POGO families! I think it was impactful for our guests to meet parents and kids who have been through treatment and benefitted from POGO—they could see exactly where the money would be going.
Gwendolyn had an amazing time. Without fundraising like this, families would not receive the help they need during one of the most stressful times of their lives. It is important to give back. And who doesn’t like pancakes!?!
By Melissa Welke
Editor’s Note: This event took place in 2019 prior to the COVID-19 pandemic.