What’s so loved about POGO Satellite Clinics?
One of the many things to love about the POGO Satellite Clinics is that each one is part of a networked, shared-care system. The system is a partnership between the five Ontario hospitals with a specialized childhood cancer program (tertiary hospital) and eight community hospitals in the province. They save families time and money in travel to the tertiary hospital by providing standardized childhood cancer care closer to the family’s home. And, when that happens, much-needed capacity is created in those tertiary hospitals. But, that’s not all! When asked to share what they love about the Clinics they manage, the team of POGO Satellite Clinic nurses shed light on what else they have in common.
End-of-treatment celebrations
For many families and patients, getting to the end of treatment is like letting out a long-held, painful breath. So, understandably, it can be a time of celebration, one that is marked in various ways across the network of POGO Satellite Clinics. There may be a bell to ring, a gong to sound, a jingle to sing, or a party where the patient receives a “certificate of completion.”
“Ringing that end-of-treatment bell marks the moment in an extra-powerful and special way for the families,” says Kirsty Morelli of Scarborough Health Network, Centenary Hospital.
Deb Crann from Grand River Hospital can’t help but chuckle. “We are still trying to master our end-of-treatment jingle; we are clearly not music majors!”
At Windsor Regional Hospital, according to Ursula DeBono, “Our gong is a fantastic way to celebrate the end of treatment.”
Multidisciplinary healthcare providers who deliver care as a close-knit team
POGO Satellite Clinic care is provided with a range of healthcare providers on the team. While each Clinic is staffed differently, families can rest assured that every team member is committed to the best possible outcomes for their child.
“We have a close-knit team,” says Deb Crann. “I love our work family of registered nurses, a registered dietitian, Satellite lead pediatrician, child life specialist, welcoming receptionist and music therapist.”
At Trillium Health Partners, Credit Valley Hospital, one way families and patients get to meet the diverse members of their team is through a Bitmoji board. “Each team member is represented by a caricature of themselves doing something fun,” says Jose Oliveria. “It’s a light-hearted way to engage families with our team-based approach to care,” adds Lindsay Lauer.
Amanda Gaudet, equally proud of her team’s efforts at Orillia Soldiers’ Memorial Hospital, says, “A smaller clinic allows us to have flexible hours to accommodate patients and to get them in and out faster; they can even come in on weekends!”
“We have an awesome, bilingual team,” says Sylvie Roberge at Northeast Cancer Centre, Health Sciences North, “and we really pull together for our Northern Ontario kids, who are simply the best.”
At Peterborough Regional Health Centre, Shay Cannon notes, “We get to know the kids and their families, like who likes to count before their port is accessed and who doesn’t. And we’ll follow a child’s 10-step checklist if that’s what they need us to do prior to a finger poke.”
Cheerful, fun-filled spaces
Families spend countless hours over many months in hospitals. POGO Satellite Clinic teams go above and beyond to make treatment rooms and waiting areas as inviting as possible. You might find a treasure box, toys and games, electronics, outdoor patios and other creature comforts.
“We have special rooms for teens and a playroom with murals and comfortable furniture,” says Lisa Egan-Bates of Southlake Regional Health Centre.
Shay Cannon adds, “I love giving the kids canvas to paint pictures for the clinic room. They are so proud to have their paintings on the wall.”
“Besides our cheerful space, we also have a treasure box with special toys for kids to choose from after any visit or procedure,” says Ursula DeBono.
No child should ever experience a cancer diagnosis. When that happens, though, POGO Satellite Clinics, POGO Satellite Clinic nurses and the multidisciplinary teams they work with, and the affiliated tertiary hospital, work together to provide coordinated, standardized, shared care at the right time and place, with an extra special touch. Now that’s a lot to love!
Learn more about the POGO Satellite Clinic Program
Dr. Charmaine van Schaik Appointed to New Role of Vice-Chair, POGO Board of Directors
POGO is pleased to announce the appointment of Dr. Charmaine van Schaik to the new role of Vice-Chair of the POGO Board of Directors. Dr. van Schaik will work closely with James Scongack, POGO Board Chair, to advance POGO’s impact as a non-profit organization with charitable status that works in partnership to achieve the best childhood cancer care system for children, youth, their families and survivors in Ontario and beyond.
As Vice-Chair, Dr. van Schaik brings a skill set complementing that of the Board Chair and she will work with the Chair to carry out leadership duties, including representing POGO’s interests and mission in various settings.
“I’m very excited to step into this new role to work alongside James and to support the POGO Board of Directors in fulfilling our governance duties effectively and efficiently,” says Dr. van Schaik.
Dr. van Schaik has been a member of the POGO Board since 2014 and has contributed to several Board committees responsible for governance and philanthropy. She has been actively involved as a member of POGO’s Provincial AfterCare and Supportive Care Steering Committees, and numerous planning committees for POGO’s continuing education events for healthcare providers.
A general pediatrician, Dr. van Schaik was the Chief of Pediatrics at Southlake Regional Health Centre and the first Medical Director of the POGO Satellite Clinic at Southlake when it launched in 2009. She helped bring childhood cancer care closer to home for families in Southlake’s catchment area and pediatric oncologists to the community setting. Dr. van Schaik continues to provide childhood cancer care to children and families at Southlake and currently holds the titles of Active Staff, Co-Medical Lead COVID-19 Vaccination Committee; Physician Leader Quality & Patient Safety; and Physician Leader Maternal Child Program.
POGO’s Board and team congratulate Dr. van Schaik and look forward to her leadership in helping the Board fulfill its duties.
To learn more about how POGO actively champions childhood cancer care click here.
Dr. Mariana Silva Leaves a Legacy Gift to POGO
Leaving a legacy in your will can help fund important long-term projects that will make a deep and meaningful impact on many people’s lives. The Silva family is feeling immense satisfaction knowing their mother, Dr. Mariana Silva, made POGO a beneficiary in her will and that her life’s work will continue.
“Our mother dedicated most of her adult life to advancing care for children with cancer,” says Tomas Silva. “It was her desire that the work she started in life would continue long into the future. It is comforting to know that through this gift, the impact she made as a committed pediatrician and passionate hematologist and oncologist will continue for years to come.”
Dr. Mariana Pradier Silva, 1958-2021
For more than three decades, Dr. Silva made a significant impact on children and youth with cancer, survivors of childhood cancer and their families in many ways, including through her participation on the POGO Board of Directors and POGO’s clinical initiatives across Ontario. A true champion of childhood cancer care, Dr. Silva was instrumental in the development and implementation of the POGO Provincial Pediatric Oncology AfterCare Program and was a key representative on several initiatives to improve equitable access to care for kids with cancer around the world.
Including POGO in your will
POGO’s mission is to achieve the best childhood cancer care system for children, youth, their families and survivors in Ontario and beyond. As a charitable organization, POGO relies on donations and government funding to run trusted programs and services, many of which have been adopted or modelled nationally and internationally across various areas of care. We are humbled that supporters like the Silva family are now taking their contributions one step further by including POGO in their estate plans and wills.
When to start planning legacy giving
Experts say it’s a good idea to update your will after any significant life event, such as a birth, divorce, death or change to your financial status. Without estate planning, you will not be able to influence how, when and to whom your assets will be distributed after you die. Creating a will is your opportunity to leave a legacy to beloved family and friends and the causes you have respected and supported during your life.
Leaving a legacy gift to POGO, when just a small percentage can have a significant impact, is an invaluable way to make an ongoing and meaningful contribution to childhood cancer care. Charitable bequests also have tax benefits for your estate, which ultimately help other beneficiaries.
If you’re interested in learning more about leaving a legacy gift to POGO, contact us at legacygiving@pogo.ca.
Leave a Legacy Month (May) is a community-based public awareness campaign that encourages people to leave a gift through their will or another planned giving vehicle to a charity or cause that is meaningful to them.
How Childhood Cancer Affects the Mental Health of Children and their Families
In a podcast for Catch Psychotherapy, POGO Interlink Nurse Tina Hamalainen discusses the psychosocial impacts of a childhood cancer diagnosis on the child, and their family and school community. Here are some highlights, published with permission of Catch Psychotherapy.
The Impacts POGO Interlink Nurses Witness
Impact on Parents
Cancer means different things to different people and it can be very stressful to hear those words about your own child; it's one of the biggest stressors that a family ever experiences. And along with that are many emotions and feelings which include fear of losing their child, sadness, anxiety, depression, fear of recurrence. Suddenly their lives have turned upside down. Anything normal has changed; families are in a situation that they didn't prepare for, including potentially stopping work to care for their ill child.
Impact on Siblings
Siblings experience a lot of the same emotions as the ill child or their parent—the same fear, worry, anger, guilt. It’s a very common theme for siblings to feel neglected or abandoned; and then they feel guilty for feeling that way. There’re so many mixed emotions that these children and adolescents are trying to process.
Impact on the Child/Youth with Cancer
Kids and adolescents experience social isolation. They're suddenly not able to attend school, for example. School is their norm, it's their place to be in society. And oftentimes, especially at the early stages of diagnosis, in-person school is not possible.
Depending on the type of cancer, if they had a brain tumour for example, radiation therapy can have impacts on their memory or their cognitive functioning, where they might need academic accommodations.
Related Content: Finding Strength by Embracing my Vulnerability
Impact of Schooling
Despite a cancer diagnosis, or maybe because of it, for some families, the normalcy of school allows them to focus on the future—future goals and academic achievements. The family might have concerns about academic success. Parents worry about how their child could possibly continue going to school while on treatment. The child can feel great stress about not seeing their friends every day and being forgotten or missing out, there is anxiety about keeping up academically and graduating high school with their peers.
Impact on the School Community
For the teacher, it might be their first experience of having a child in their classroom with cancer. And at that same time, they're being bombarded with questions from their other students about this child's diagnosis and they do not have the experience/knowledge to support their students.
Impact of Recovery
We can underestimate emotional recovery which can linger longer than physical recovery with fears of relapse or a secondary cancer, and adjusting to a “new normal.”
How POGO Interlink Nurses Support the Family’s Psychosocial Needs
Support for the School Community
- They encourage classmates to think about how they can support their friend in treatment over the weeks and months to come; what things would they do or not do to welcome them back to school?
- They encourage classmates to stay connected by video calling their friend, or placing a drop box in the classroom to collect letters, cards and jokes they’ve written or pictures they have drawn.
- They provide classmates, teachers and siblings’ classes with education and information about the child’s cancer, and its treatment and impact. Being able to educate not only the teachers, but classmates as well—providing information in preparation for that student to come back—is really important, and it ends up helping the ill child.
Support for Learning Needs
- They facilitate home instruction when the child’s treatment keeps them out of school.
- They work together with families on a plan to re-integrate the child to school.
- They work with the child and school administration to set goals for earning credits and graduating, exploring options like summer school and online courses.
- They help advocate for supports for children and adolescents who need accommodations.
Support for the Family Unit
- They do home visits to see firsthand what the family is going through.
- They provide family-centred care that instills hope by trying to address the needs of every member of the family unit.
- They connect students experiencing late effects that hinder their academic success to the POGO School and Work Transitions Program, where POGO Counsellors help them get the support they need at various academic levels or to make the transition from high school to appropriate work.
The above tips were published with permission of Catch Psychotherapy. Listen to the full 30-minute podcast with POGO Interlink Nurse Tina Hamalainen and Janet Morrison of Catch Psychotherapy here: Episode 16 | How Childhood Cancer Affects the Mental Health of Children and Their Families w/ Tina Hamalainen
Survivor’s Childhood Cancer Experience Inspires her Career in Pediatric Oncology Nursing
Kafia Ibrahim is a registered nurse whose personal experience as a two-time childhood cancer survivor inspired her career path. She works in the haematology/oncology unit at The Hospital for Sick Children (SickKids) in Toronto and attributes some of her success to touchpoints she had with a POGO Interlink Nurse while in treatment and a POGO Counsellor after treatment.
Kafia was diagnosed with rhabdomyosarcoma, a soft tissue cancer, when she was eight years old. Her treatment involved chemotherapy and radiation. At 15, Kafia relapsed and faced a second diagnosis of another soft tissue cancer. This time, surgery and chemo were part of her treatment protocol.
“I was too young to remember the details,” Kafia says “but I know that from the time I was diagnosed, my family had very positive experiences with Tina, my POGO Interlink Nurse. I attended Campfire Circle (formerly Camp Ooch and Camp Trillium) because of her and made lifelong friends, and she came to our home and connected us to many community and financial supports.”
Related Content: Surviving Childhood Cancer: From Confidence Buster to Confidence Builder
After her treatment ended, Kafia faced many challenges pursuing her academic and career goals.
“Those challenges were a result of the side effects of treatment,” she explains. “With nothing to control my pain and the resulting negative impact this had on my mental health, it took me longer than usual to finish high school. In Grade 10, I went from online school, to alternative school and back online. I utilized many of the services of the POGO School and Work Transitions Program during this time. When I was finally able to finish high school, my POGO Counsellor, Lucie, helped me with my university applications. She also notified me of scholarships that I would be eligible to apply for, and I received one from Childhood Cancer Canada. My POGO Counsellor also helped me get extra time for tests at school, something I didn’t even know was possible. She helped me know my rights and build my confidence to ask for what I needed. I don’t know if I would have done as well as I did if it were not for my POGO Counsellor.”
Wonderful nurses made an impact
While Kafia’s experiences through her cancer journey were not all great, the positive ones led to her career decision.
“I have had my fair share of experience with healthcare providers, especially nurses,” says Kafia. “I’ve experienced the good, the bad and the ugly. The amount of influence that nurses can have on a patient’s experience with their disease is more than one would expect. I still remember the wonderful nurses that helped get me through some of my hardest days. Whether it was singing my favourite song with me, celebrating my 16th birthday when I was in-patient or providing me with a shoulder to cry on when things got too much. I want to be able to provide this personal connection for another child and their family that may be going through a similar situation.”
Related Content: Returning to School after a Cancer Diagnosis? Ask for Help!
Gaining invaluable on-the-job experience
From 2019 to 2020, while in her nursing program, Kafia had the opportunity to work as a clinical extern at SickKids. In this mentored nursing assistant role in the haematology/oncology unit, she gained invaluable experience. She got to know families and found many ways to offer them respite, like staying at their child’s beside so they could take a coffee break. Remembering how bored she was as a patient, Kafia made it a point to entertain her patients. She learned the importance of building trusted relationships. Also, working in the hospital where she had received treatment was a way to see if any underlying or unresolved emotions would surface that might get in the way of her career success. Thankfully, none did!
“This job allows me to meet the bravest people. I feel like my experience with cancer allows me to see the bigger picture when providing care to patients and their families. My career plans include becoming a POGO Interlink Nurse in 3 to 5 years and finding ways to better support the transition from pediatric to adult care for childhood cancer patients. When I see the impact that my care can have on patients, it motivates me to work harder.”
Kafia Ibrahim is a registered nurse at The Hospital for Sick Children. She earned her Bachelor of Science in Nursing from the Seneca/York Collaborative Program. She is a two-time childhood cancer survivor. Her POGO Interlink Nurse and POGO Counsellor inspired and supported her career goals.
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.
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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.
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.
In Conversation with Dr. David Hodgson: A Progress Report of His First Five Years
And Looking Ahead to His Next Five as POGO Medical Director and Chair in Childhood Cancer Control
In November 2021, Dr. David Hodgson (DH) began a second five-year term as POGO Medical Director and Chair in Childhood Cancer Control at the University of Toronto. In conversation, he shares highlights of his very productive first term, 2016 – 2021.
Q: Data-driven quality improvement is one of the five goals of POGO’s Childhood Cancer Care Plan. What initiatives have you undertaken to tackle this pressing priority?
DH: Well, for POGO to drive forward improvements in the childhood cancer system, we need to listen to our clinical partners and families to understand what the needs are, help develop and improve programs that meet those needs, and measure how well we are doing in that mission.
I felt that while POGONIS and our other data holdings are among POGO’s strengths, they were underutilized. So, over the last five years, we published and made available significantly more childhood cancer data to help clinical stakeholders and researchers understand the current state of childhood cancer in Ontario.
POGONIS is POGO’s active cancer registry initiated over 30 years ago to capture diagnosis, treatment and outcome data for children treated at the five specialized childhood cancer programs in Ontario.
We’ve also taken steps to strengthen data quality by implementing automated quality checks to immediately identify possible errors.
POGO produced two provincial childhood cancer surveillance reports (2018 and 2020) making Ontario the only province to publish searchable data regarding the incidence, prevalence and outcome of childhood cancer for different childhood cancer subtypes. In 2020, we saw the first-ever inclusion of POGONIS-derived childhood cancer statistics in the Ontario Cancer Statistics report, and we contributed to the national Cancer in Young People in Canada (CYP-C) Data Tool.
For hospitals, we provided the first POGO Quality Indicators Report, which allowed them to see information such as the type of cancers they care for, wait times and clinical outcomes compared to the province as a whole.
As a result of this work, data is much more available to hospitals, system planners and researchers to undertake activities such as assessing the feasibility of conducting a research study, or understanding the provincial patterns and trends of childhood cancer so the system can be prepared for the future.
Q: What other improvements have been made to POGO’s data?
DH: We have improved the data for specific POGO programs to ensure they are serving children with cancer and survivors in the best way possible. For over 20 years POGO has managed a long-term follow-up program for survivors of childhood cancer through the POGO AfterCare Program delivered in seven clinics across Ontario. We worked with these clinics to update the data collected so that we can assess the impact that these clinics have on survivor care and inform continuous improvement.
Q: Looking ahead, what are your plans for further improvements in data-driven quality?
DH: It is important that we continually work with our clinical and research partners to ensure that we are facilitating their work. Now that we have made these changes to our data collection and reporting, we have to be sure that we are not just collecting data for its own sake. We want to be able to inform clinical programs and research that have a clear path to improving the outcome for children with cancer. This means building collaborations that enhance the clinical and policy relevance of our data.
One great example is the work that the POGO analytics team and our Technology Advisory Committee is doing with Dr. Pechlivanoglou at SickKids to facilitate access to innovative new treatments for children with cancer by developing policy advice for government. This work involves input of clinical experts, access to high-quality data and analytic expertise, and an understanding of the regulatory environment. Any one of these on its own would not be enough, but working together with our clinical and research partners across Ontario, we can make progress that would not be possible without bringing together all the pieces of the puzzle.
I would also like to increase the utility and variety of data holdings we can use and make available to others, and redesign the POGO Research Unit to better support the deliverables of our Childhood Cancer Care Plan.
Q. Survivorship is near and dear to your heart. Tell us about your future focus for the POGO AfterCare Program for childhood cancer survivors.
DH: The POGO AfterCare Program was formally established in 2001 with clinical collaboration of seven clinics throughout Ontario. Developed at a time when few survivors were receiving adequate follow-up care, the initial strategy was to recall and retain as many survivors as possible. More recently, we have worked to integrate the concept of “right care in the right place” into the model of AfterCare.
We recognize that during treatment, POGO Satellite Clinics can provide excellent care for selected patients and problems without requiring the patients to travel to their primary treating hospital. The same can be true for AfterCare. Very few of the tests required by survivors are so high-tech that they need to be done in the primary treating hospital. But the major challenge is ensuring that we can provide the multidisciplinary care that some survivors need, particularly access to mental health supports, which I think are in very short supply. My goals are to ensure survivors with the highest risk for complications are able to access the clinics and receive care appropriate to their situation, and develop a sustainable strategy that better incorporates patients’ primary care providers so that the ever-growing number of survivors have sustained access to appropriate care.
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In addition to his role as POGO Medical Director and POGO Chair in Childhood Cancer Control at University of Toronto, Dr. David Hodgson is also a radiation oncologist at Princess Margaret Cancer Centre with a cross-appointment to the Division of Hematology/Oncology at The Hospital for Sick Children. He is a professor in the Department of Radiation Oncology at the University of Toronto. He was first appointed as POGO Chair in Childhood Cancer and Medical Director in November 2016. Read his bio
Dr. Hodgson Reappointed as POGO Medical Director and Chair in Childhood Cancer Control
Pediatric Oncology Group of Ontario is delighted to announce the reappointment of Dr. David Hodgson as POGO Medical Director and the POGO Chair in Childhood Cancer Control at the University of Toronto. He began his second five-year term in November 2021 after a very productive first term (2016–2021).
Dr. Hodgson’s stellar accomplishments, expertise and experience in the care of children with malignant disease and pediatric cancer control have strengthened POGO’s many efforts to champion childhood cancer control and POGO’s mandate to advance pediatric cancer care and control in Ontario and internationally.
Dr. Hodgson is an internationally-recognized pediatric radiation oncologist who has made significant clinical and research contributions through his role at SickKids and his work at Princess Margaret Cancer Centre where he is the Site Group Lead for Pediatrics in the Department of Radiation Oncology and the Director of POGO’s Adult Pediatric AfterCare Clinic. He is a Professor in the Departments of Radiation Oncology, and Health Policy Management and Evaluation at the University of Toronto. In addition to practicing radiation oncology in the lymphoma and pediatric site groups at the Princess Margaret Cancer Centre, Dr. Hodgson serves on the Hodgkin Lymphoma Steering Committee of the Children’s Oncology Group and as a member of the Childhood Cancer Survivorship (CCSS) External Advisory Board. He is the author of over 100 manuscripts in the field of lymphoma and long-term survivorship, and his work has been cited in publications in five languages, including the NIH President’s Cancer Panel Report, and the Strategic Plans of the Department of Veterans Affairs and the UK National Health Service.
POGO created the linked position of POGO Chair in Childhood Cancer Control and Medical Director in 2000 so that Ontario would always have dedicated, seasoned, visionary leadership to ensure a well-integrated, evidence-based cancer delivery system for children with malignant disease. POGO works collaboratively with all stakeholders to implement this vision, generating successive long-range childhood cancer care plans that have, over many years, greatly enhanced Ontario’s childhood cancer care system.
POGO believes the Chair and Medical Director must lead with extraordinary wisdom and charisma to achieve informed and whole-hearted consensus among providers, hospitals and other key stakeholders. Dr. Hodgson brings to POGO tables not only an academic outlook, clinical acumen and a unique grasp of research, education and healthcare delivery savvy, but also the rare ability to ignite a passion to work on behalf of the population and to inspire collaboration. Dr. Hodgson holds the central role in POGO’s medical directorate—responsible for maintaining the keen interest and participation of the professional pediatric oncology community in endeavours that ensure a continuing state-of-the-art system.
Dr. Hodgson reports on his first five years and plans for his next five.
