Pediatric Oncologist Cycles across Canada to Raise Funds for Kids with Cancer
I first entered the world of childhood cancer as a counsellor at Camp Trillium in the year 2000. It quickly became apparent that this week away was often the only break that these families would get from their time at the hospital.
Fast forward to today, I am now a pediatric oncologist. I am the person who tells families their child has cancer. Often I get to tell them their child is cured and watch the relief flood over their faces. But for 1 out of every 5 kids, I still have to say "the cancer is back, and it might take your child's life." In addition, as the Medical Director of the POGO AfterCare program at McMaster Children’s Hospital in Hamilton, I see in my practice that surviving cancer isn’t the end of the story. As many as 60% of survivors will experience at least one chronic health problem due to their cancer and/or its treatment.
Since becoming an oncologist, I have been privileged to get to walk the cancer journey with so many kids and families. That is why three years ago, I upgraded my commuter tank with a basket to a road bike to ride in support of kids’ cancer care. Since then, I’ve been hooked. I love the feeling of sunshine on my back, and watching the scenery race by on a gorgeous day outside. This year, I am taking it to the next level and riding across Canada in Coast to Coast’s National Kids Cancer Ride taking place from September 4 – 21, 2019.
I am riding to support organizations that I’ve seen make a tangible difference to our families–the Children’s Hospitals (including mine!), the cancer camps, advocacy and support organizations, research funding and more. I am riding for our families–the ones who lost kids, those who are still supporting childhood cancer survivors, and the ones that are facing a brand new diagnosis. I am also riding for my dad who passed away after his own second cancer relapse this past year. I got to hear the words I often say, “His cancer is now incurable”…so I am riding in the hope that one day we’ll never have to say or hear those words again.
For those not familiar, this ride equates to about 150km/day for 18 days, as we cycle across Canada from Vancouver to Halifax during Childhood Cancer Awareness month in September. The ride raises funds through the Coast to Coast Against Cancer Foundation, which supports so many programs for our families affected by childhood cancer. Please consider supporting me here through donations: http://staceymarjerrison.nationalkidscancerride.com, as well as spreading the word.
I will be posting updates on my twitter feed and instagram accounts @staceymarj. I hope you will follow along as this journey continues, and that you come out to cheer us on as we ride through your city!
Sam's Story: Focusing on Ability, Not Impairment
I was seven years old, living in South Korea, when I was diagnosed with a brain tumour and treated with a 12-hour surgery at Seoul National University Hospital. I can still remember the atmosphere in the operating room—it was cold and not a friendly setting for kids. As a young boy in an adult hospital it was very scary, but my dad was with me and comforted me until I fell asleep. The surgeon was not able to remove the entire tumour because it was pressing against my optic nerve, so I have been left with low vision and weakness on the left side of my body.
My family moved to Canada when I was 10 years old because my parents wanted better opportunities and better medical care for me. Shortly after we arrived, I developed severe headaches and was hospitalized at McMaster Children’s Hospital in Hamilton. I was diagnosed with hydrocephalus, an accumulation of cerebrospinal fluid within my brain, likely related to my tumour. This typically causes increased pressure inside the skull. The setting of this hospital was very different from the one I was treated at in South Korea. The staff at McMaster are used to children and made me feel very comfortable about my treatment and medical procedures. I received a shunt implant that will remain in me for the rest of my life. A shunt is a tube that is inserted to divert the fluid away from my brain and, luckily, I have lived headache-free since then.
As part of my follow-up care, I receive MRIs every six months at a POGO AfterCare Clinic. In 2010, the test showed my tumour had grown. I received 70 cycles of chemo over an 18-month period. It shrunk the tumour a bit and it has remained stable ever since. I guess because of all my experiences in childhood, I always knew I wanted to work with children when I grew up. When I was ready to apply to post-secondary, I started to work with a POGO academic and vocational counsellor who helped me with the transition from high school to college. She helped me with things like adapting to new academic pressures and getting special accommodations because of my vision and mobility impairments.
I am proud to say I have graduated from Mohawk College with a degree in Child and Youth Care and I got a job at the YMCA afterschool program. I facilitate activities for kids in Grades 3 and 4. I love it because the kids are honest and energetic. I recently applied for and was offered the position of workshop facilitator for POGO’s Survivor-to-Survivor Network where I will use my personal experience to lead discussions on topics that are relevant to other childhood cancer survivors. Topics include employment, education, advocacy and self-disclosure. Self-disclosure can be a tough topic to tackle. The workshop revolves around how childhood cancer survivors disclose information about their disease, its treatment and resulting health complications to future employers and other people they are close to. It focuses on changing the language around any impairments they have, to describing what they CAN do. As survivors, we have overcome many difficult situations in life and we are stronger for it, more resilient. We have a lot to offer employers who are willing to see past our disabilities. I am excited for this opportunity to be a POGO workshop facilitator because I want to empower survivors to overcome the barriers that have resulted from their cancer and not let these challenges hinder what they can achieve in life. Because of the support I received from POGO academic and vocational counsellors, I was accepted to college, I have a diploma and I was able to gain relevant work experience. I just want the same for other survivors.
By Sam Baik
Sam's story first appeared in the 2018 Community Impact Report, page 14. Sam has since completed a successful term as a Survivor-to-Survivor Network facilitator.
Strong Moms
So, recently, I volunteered at my daughter’s school. We went on a field trip. During the bus ride back to school I got into a conversation with Selena's teacher who of course knows of her past at SickKids. She mentioned to me her daughter was sick; that she had a bladder infection. She mentioned how her daughter was screaming in pain and discomfort.
The next comment was one I have heard a million times before. She said:
"I was so terrified and am so sad. How, Natasha, did you deal with Selena having cancer?"
Funny thing is I just looked back at her. For the first time, words didn't flow out in my usual strong mom spiel of, "Well, you know when you don't have a choice you just handle it," type of response. Instead I was more held back, a shiver came over me, words didn't make sense in my head because I don't really know how I got through it. I was possessed for those years, something bigger than me took me and drove me through the storm.
Now that it's over and we can breathe and have reached the 3-year post-treatment marker, what I am not doing is handling it as well as I did before. I am one big emotional wreck, holding it together by a string, taking each day as it comes and trying to find my way all over again.
All this to say "strong mom" means many things; it's as individual as we all are. We all handle things the best we can. From a tummy ache, toothache, bladder infection to cancer, when our kids get sick and are hurting, we, the moms, hurt for them. Some illnesses we can get over quickly; they come and they go; life threatening, critical illness for some can take much longer to heal from as the hurt is deeper than the surface. It boils in our veins as it triggers directly into our core and our hearts.
With today being Mothers’ Day, I send love and light to all moms, especially those whose babies made it to heaven. I know some of you. I feel your pain yet cannot ever know what it feels like to walk in those shoes. How does a mother, any mother, do it? Hmmm, good question; the honest answer still unwritten, I suppose.
By Natasha Koss
Natasha will be running in support of POGO at the Toronto Women's half marathon on May 26. Natasha started running to help curb her anxiety when Selena was diagnosed with cancer. Please support her fundraising efforts at the link below!
Support Natasha in the Toronto Women's Half Marathon!
School Support for Children with Cancer from POGO Interlink Nurses
POGO Interlink Community Cancer Nurses are on the front lines providing school support and care for children with cancer and their families. They meet families at diagnosis, and are with them through treatment, and, should it happen, through recurrence and palliation as well. Here’s how these nurses are making a difference by connecting them to much-needed community services.
Q. How are patients and their families referred to a POGO Interlink Nurse?
Families are referred to a POGO Interlink Nurse primarily when their child is diagnosed with cancer at the main treating hospital, through members of the healthcare team—ward or clinic nurses, pediatric oncologist or social workers. To raise awareness of our presence across the hospital, POGO Interlink Nurses make presentations to our colleagues to explain the role we play in caring for the child and their family. Families may also be referred to POGO Interlink through their POGO Satellite Clinic or by a physician when the child is returning to school after treatment. Because of the long-standing reputation of the program, families even hear about POGO Interlink Nurses through community agencies, like their Local Health Integration Network, or through their social circles by other parents of a child with cancer.
Q. What questions do parents typically ask when their child has cancer?
Whether in our hospital or home visits, many of the questions parents ask when their child has cancer are related to chemotherapy, finances and school. On the practical side, we review the educational information they received at discharge, like medications and treatment protocols. But, on the emotional side, parents have many questions about why their child got cancer. “Was it something I did?” “Was it exposure to cleaning chemicals?” “Was their cancer inherited?” Parents are also seeking answers to help them plan long term. “How long will treatment last?” “How soon will my child go into remission after a bone marrow transplant?” “How many medical appointments should I plan for?” Answers to these questions help with family decisions about when and which parent can return to work.
Q. How do POGO Interlink Nurses work in the community to support children with cancer and families?
Each family has unique needs but when a family receives the news of a new diagnosis, it is overwhelming. How they will manage financially is usually top of mind. POGO Interlink Nurses identify and help prioritize access to available resources and services. Financial assistance is usually the initial topic of discussion followed in time by other supports and services.
We work with agencies like the Local Health Integration Networks to acquire equipment and services to set children up at home when their care is complex. We also work with coaches and instructors in such extracurricular activities as Brownies and hockey. In one instance, a family asked us to speak with a group of neighbours to give the other parents and their children a better understanding of what they were going through.
And of course, we consider the grandparents who are not only concerned for their grandchild but also for their child, and who themselves may have their own health concerns.
Q. How do POGO Interlink Nurses work with the school system to support the education of a child with cancer?
POGO Interlink Nurses are in the unique position to work with the schools to support children with cancer, their siblings and parents, teachers, principals and classmates. We often advocate for families when there is a delay in the start of home instruction. POGO Interlink Nurses can visit the school and provide a classroom presentation, either in the child’s class or their sibling’s. The information we share is determined in collaboration with the parents and the child and our goal is to provide accurate and age-appropriate information, to answer questions and to involve students in supporting their classmate.
Providing customized school support can be complicated but it provides an additional layer of support for the child/family and relieves anxiety about academic expectations, return to school and peer relationships.
We have to consider how much personal health information can be shared. If the school is making the request for a presentation, we have to ensure the family is on board. And, in all instances, once the child with cancer is at an age to weigh in (usually Grade 3), the child must also consent. The more difficult school visits are when we are not able to be transparent about a child’s diagnosis or a recurrence of disease. In one situation, a family wanted us to talk to the class about the importance of hand washing for their “sick” child. They did not want to disclose their child’s cancer diagnosis. In such a situation, our role is to help educate the family about the importance of transparency in avoiding misguided assumptions. And even though a family might have been completely transparent at diagnosis, the recurrence of cancer and the fear of a poorer outcome this time around may make them more guarded during a subsequent classroom presentation.
We also have to be sensitive to the demographics of the classroom—if a student has had a family member with cancer, what will a classroom presentation about cancer trigger for them?
Q. How does the work of the POGO Interlink Nurse help others on the child’s healthcare team?
We work very closely with the healthcare team, sharing information from home and community to keep them informed about what is going on. Because POGO Interlink Nurses make home visits, we are privy to specific family dynamics. We are able to let others on the child’s healthcare team know if the parents are also caring for other sick family members, like a grandparent or sibling, or if there are other undisclosed situations. These kinds of disclosures may have an impact on the family’s ability to get to appointments and are important considerations in providing and receiving care.
POGO Interlink Nurses have the unique privilege to work in schools to support children with cancer, their siblings, teachers and the administrative team, and to be with the family for the entire trajectory of care. By being a link to community and hospital, POGO Interlink Nurses are vital in connecting many dots for all members of the child’s healthcare team in ways that help provide the right care in the right place for the best possible outcomes.
POGO Interlink Nurses work out of CHEO (Ottawa); The Hospital for Sick Children (Toronto); Children’s Hospital (London); McMaster Children’s Hospital (Hamilton); and Northeast Cancer Centre, Health Sciences North (Sudbury). They serve their immediate and surrounding areas, including Barrie, Simcoe, Muskoka, Peterborough, the Greater Toronto Area and northern Ontario.
Related Resources
- Read The Childhood Cancer Care Plan for more about right care, right place, and integrated psychosocial care
What Price Do Families Pay When a Child has Cancer?
You’re young and recently wed. You’ve started a family and are trying to make ends meet financially. You used to think eating lunches out was a big expense. Now there are diapers, special food, daycare, sports and other activities, and the need for more space! Hiring a sitter so you can go to dinner and a movie costs more than the dinner and movie! Your spending priorities have shifted but for the most part you’re managing.
Then your eldest child starts to bruise easily, gets fevers often and doesn’t want to eat. Over a relatively short period of time you are told your child has cancer. Leukemia. You’re assured that survival is good and your child has a good chance to beat this. But the treatment hospital is over an hour’s drive away. You have to plan for many nights in the hospital; and your first stay will be weeks long. Either you or your partner has to stay with your ill child while the other is at home with your youngest. Travel-related expenses, including meals and accommodations, increased daycare costs and the realization that one of you won’t be able to go back to work for what will likely be a long time. Ugh. Of course you don’t think much about finances at the start. You are focused on keeping everything together and making sure your ill child will survive. But slowly the costs become apparent. The credit card bills roll in. So much for managing.
This is a common storyline among families of a child with cancer. Although most of the treatment is paid for by the government or private insurance, there are large costs associated with a child’s cancer care, the largest most often being a loss of nearly half the family income due to one parent leaving the workforce. This is a well-known issue among researchers. They know the financial costs in the early part of the diagnosis and treatment are huge. But what researchers haven’t figured out is how families do in the long term. What is the financial health of the family three, five or 10 years after the diagnosis? Does this kind of health crisis turn into a chronic financial condition for the family? Does the family ever recover financially?
New research by POGO is linking data from its cancer registry (POGONIS) to copies of Canadian tax returns stored at Statistics Canada. Families who experience a diagnosis of childhood cancer are being compared to families who do not experience cancer and are similar in age to the parents, in number and age of the children, where they live and income at the time of diagnosis. The researchers can then follow both family types over time and compare what likely ‘could’ have happened to the cancer family financially to what did happen.
This research is ongoing—the comparison families are now being identified—but so far we can see that a child’s cancer diagnosis stalls household income growth for about a year after the diagnosis, after which household income continues to climb. Of more interest is that families whose child dies after the diagnosis start their family life with lower household income compared to families with children that survive, after which the household income follows the same pattern of income growth. More on this story is yet to come, as this research will also examine the financial impact of the difference in cancer type. Stay tuned!
Dr. Jason Pole is the Principal Investigator on the study Long-term Economic Consequences of a Childhood Cancer Diagnosis. He is Senior Scientist with the Pediatric Oncology Group of Ontario; an Associate Professor in the Dalla Lana School of Public Health, University of Toronto; Adjunct Scientist with The Hospital for Sick Children Research Institute; and Adjunct Senior Scientist at ICES, Toronto. Dr. Pole has a background in epidemiology and health services research with an emphasis in the use of administrative data and complex survey instruments.
Related Resources
- "Financial Hardship in Adult Survivors of Childhood Cancer," presentation at 2018 POGO AfterCare Education Day. Download PDF
- POGO Surveillance Report
- Childhood Cancer Care Plan
Awards Presentation Recognizes Contributions to POGO’s Provincial Mandate
What does it take to be honoured with a POGO Recognition Award? On November 2, close to 200 guests from the childhood cancer care community attending POGO’s 2018 Symposium Dinner found out as four worthy recipients were duly celebrated. The contributions of Dr. Jodi Rosner, pharmacist Denise Reniers, Dr. David Malkin and nurse Patti Bambury demonstrated why they were deserving honourees. Congratulations to all the 2018 recipients!
The Friends of POGO Award recognizes considerable and sustained contributions by valued partners to POGO’s overall vision, mandate and goals through endeavours ranging from strategic, political, financial and beyond. Recipients set a standard, in the sector they represent, for their exceptional efforts. Dr. Rosner, a pediatrician at Grand River Hospital, received this award in recognition of her role as Founder & Director of the Kitchener Kids with Cancer Run/Walk. From the first Run held in August 2014 to the fifth Run held September 2018, the event has raised over $225,000 for POGO.
“This is not your ordinary race event,” says Patti Bambury, who nominated Dr. Rosner and calls her a “local hero.” “The race is filled with emotion, tears, inspiration, hope and positive energy. Pictures of survivors, children still in the battle and unfortunately a few children who lost their battle, line this beautiful, scenic route. On race day, Jodi is there before the sun rises. She then runs a quick and easy 10 kilometres, crosses the finish line and then runs right back to working on the sidelines.”
In addition to the steadfast dedication Dr. Rosner has demonstrated to her clinical practice and the children and families she treats, she has shown a deep commitment to promoting awareness of childhood cancer and POGO in the community. It is no wonder her nominators describe her as “a local hero.”
The POGO Valued Contribution Award is presented to individuals who have made an identifiable and substantial contribution over a prolonged period to the childhood cancer care community through POGO’s work. Through their collaborations and teamwork, they have demonstrated their commitment, enthusiasm and generosity. Denise Reniers was presented with this award for her contributions to improving care for children with cancer across Ontario in her capacity as a pharmacist with Children’s Hospital, London Health Sciences Centre.
Described as being crucial to the care provided at Children’s Hospital, Denise is known to go above and beyond to ensure the safety and quality of care of all patients. She has valiantly answered the call to champion POGO’s efforts for drug access, meticulously revising and validating data to support funding decisions for the benefit of the wider childhood cancer community. She has contributed to the development of POGO’s Childhood Cancer Care Plan and has reviewed and created content for the POGO satellite manual. Her flow chart of dosing “Capizzi” Methotrexate now hangs in POGO satellite clinics across Ontario.
Sadly, Denise passed away March 26, 2020.
This year, the POGO Companion Award paid tribute to two individuals, Dr. David Malkin and Patti Bambury, for their significant achievements to the field of childhood cancer care and control over the course of their respective careers, and to the breadth and scope of their involvement with POGO. The selection committee determined that they exemplified excellence, leadership, innovation, integrity, collaboration, teamwork and dedication.
Dr. Malkin is senior staff oncologist and co-director of the cancer genetics program at The Hospital for Sick Children, senior scientist in the genetics and genome biology program of the SickKids Research Institute, and professor of pediatrics at University of Toronto. His unparalleled research contributions to the field of pediatric oncology have led to revolutionary discoveries including increased understanding of how DNA can accelerate the development of cancer in people with a genetic risk of cancer and how genomic changes may be used as a diagnostic marker of cancer risk. Dr. Malkin has been awarded millions of research dollars, including $5 million from the Terry Fox Research Institute to catalyze a $25 million precision oncology initiative, better known as PROFYLE. Grants have enabled him to continue his groundbreaking work in the surveillance and treatment of patients with Li-Fraumeni syndrome (LFS). Published in Lancet Oncology, his prospective study related to screening for carriers of TP53 mutations and LFS has almost single-handedly driven the American insurance industry to recognize the value of surveillance, leading to more rapid approval of payments for these tests.
In presenting Dr. Malkin with his award, Dr. David Hodgson, POGO’s Medical Director and Chair in Childhood Cancer Control, noted that his nominators described him as a trailblazer, an exemplary teacher and educator, a visionary, whose trainees have been recognized with prestigious POGO fellowships and poster awards.
“We salute you for your unparalleled research contributions; your sustained dedication as a leader in provincial, national and international cancer control; and your tireless efforts to improve your patients’ quality of life. We also acknowledge with deep appreciation, your dedication to advancing POGO’s mission and mandate in your former role as Medical Director and POGO Chair in Childhood Cancer Control.”
Patti Bambury’s distinguished nursing career truly embodies the qualities of a POGO Companion – an individual who is committed, strives for excellence and has exceptionally contributed to advancing state of the art childhood cancer care and control.
For over two decades, Patti was involved in numerous POGO committees and initiatives, championing the important role of nursing in the care of children with cancer.
Patti put her heart and soul into helping to conceptualize POGO’s Provincial Pediatric Oncology Satellite Program, its systematization in the first manual Blueprint, its implementation and its successive scope of practice updates. Her commitment to advancing the scope of nursing practice and standards in POGO Satellite Clinics was unwavering.
Patti participated in the development of POGO’s Pediatric Oncology Nursing Curriculum at McMaster University, becoming one of its first successful graduates.
She was a long-standing member of the POGO Provincial Nursing Committee, from 1995 until her retirement in 2018, where she presented many pediatric oncology nursing practice issues and obstacles for review and discussion. She identified gaps in the utilization of personal protective equipment for pediatric oncology nurses, which subsequently resulted in the publication of a document of recommendations. Patti was instrumental in advocating for the implementation of telephone practice and symptom management guidelines for pediatric oncology nurses given the trend for early discharge of patients and their families post diagnosis.
Patti’s leadership and long-standing commitment to POGO is further evidenced in her contribution to many provincial pediatric oncology plans, from POGO’s first report in 1994 to the current Childhood Cancer Care Plan. A member of POGO’s Board of Directors and Advisory Council, Patti is a past recipient of the POGO Valued Contribution Award and the Joan Schatz Belisle Fundraising Volunteer Award for her efforts to generate public awareness of POGO's work through annual local Childhood Cancer Awareness Month events and to generate significant dollars raised through Clarky’s Kids for POGO.
New POGO Clinic Helps Teen Stay Connected with Friends
In September 2018, at the launch of the new POGO Pediatric Oncology Satellite Clinic at Peterborough Regional Health Centre (PRHC), Theresa Serracino-Inglott, husband Mario and son Anthony spoke on behalf of the parents and young patients who will be receiving care.
Last year in late August, Anthony was gearing up to start his Grade 11 year when he was diagnosed with acute lymphoblastic leukemia (ALL). Anthony spent most of his first six months at SickKids hospital because of complications and an extremely tough protocol for his high-risk diagnosis. Throughout the past year – and more so in the last six months – the Pediatric Outpatient or POP Clinic at PRHC has been our second home.
In April, Anthony was here for supportive care close to 20 days, and every day he was greeted with a smile and the exceptional care we have come to know from Shay Cannon and the POP Clinic Team. This was such a relief because as parents of children with a cancer diagnosis, we are continually being bombarded with difficult and gut-wrenching fears – and leaving the safety of SickKids Hospital is one of them.
Having to take your child to a new place for their care and allowing unfamiliar medical staff to provide treatment leaves us parents feeling vulnerable and scared – but once we walked through the doors of the POP Clinic and met Shay and the POP Clinic team, our fears subsided. Anthony immediately made a connection with the staff that has only strengthened over the months. Being closer to home to attend to such things as his fevers and blood work has meant a lot to Anthony. When he was admitted with a fever and had to stay at PRHC for more than a couple of days, it meant that his friends could easily come and keep him company to pass the time.
Throughout this time, the POP Clinic team was already beginning the transition to become an official POGO Satellite Clinic, which included staff training in all of the specialized areas of care we knew Anthony would need.
Now that this is an official POGO Satellite site, I can’t help but think of “future POGO families” in our area. Perhaps today, the news of the new clinic may not even register, but when they are burdened with their child’s diagnosis, they will have these things to ease their journey:
- Closer access to chemo treatments
- A “fever card” that is our direct route to the in-patient unit, allowing us to bypass emergency
- Coordinated care between PRHC and SickKids that meets the high standard of care that POGO Satellite Clinics deliver
- A trusting relationship with qualified staff that go above and beyond for patients in their care
- Support from other POGO families that become lifelong friends because of this journey they’ve shared together
Having a POGO Clinic close to us makes life as a parent a whole lot easier. Feeling financially strapped is a common thread among families of children with cancer and satellite clinics give some relief to that. The shorter distance helps us save money on gas for the car, the need to eat out, motel costs, and childcare needed for siblings.
Anthony has already benefitted from shorter clinic visits. This is important because as a teen with cancer, many occasions have been missed because of treatment. Having the accessibility of the POGO Clinic gets him back to his friends who play a very important part in his recovery.
Parents of children with cancer certainly would have never chosen this path for our children, but because this is where we find ourselves, I want to say how grateful we are to POGO and to Peterborough Regional Health Centre for making it possible for families like ours to have an official POGO Satellite Clinic right in our community. We can’t thank you enough for easing the burden by keeping many aspects of our child’s cancer treatment closer to home. Thank you.
Read the media release
Related Content
Peterborough Home to 8th POGO Satellite Clinic
New POGO Satellite Clinic brings care closer to home for children with cancer in Peterborough area
On Monday, September 24, the Pediatric Oncology (POGO) Satellite Clinic at Peterborough Regional Health Centre (PRHC) officially opened its doors to provide care for children with cancer right in their community.
For these patients and their families, care closer to home means a reduction in travel time, costs to receive care elsewhere are avoided, and less loss of income and separation from home and community, all while maintaining confidence that their child is receiving the best quality care.
“Having a POGO clinic close to us makes life as a parent a whole lot easier,” says Theresa Serracino-Inglott, whose son Anthony is currently receiving treatment at PRHC after being diagnosed with Acute Lymphoblastic Leukemia in August 2017. “Feeling financially strapped is a common thread among families of children with cancer, and these satellite clinics give some relief to that. I want to say how grateful we are to POGO and to Peterborough Regional Health Centre for taking on this partnership to bring a POGO Satellite Clinic to our community. I can’t help but think of future ‘POGO families’ in our area, and how the availability of this clinic will ease their journey.”
POGO now supports highly coordinated care at eight Satellite Clinics across the province, each linked to one of the five major hospitals with a pediatric cancer program. In addition to the benefits for patients and their families, shifting thousands of visits and hundreds of inpatient days to POGO Satellite Clinics each year provides additional capacity for specialized care in these hospitals’ pediatric cancer programs.
Read the media release
POGO Supportive Care Guidelines Influence the Care of Children with Cancer
The POGO Supportive Care Clinical Practice Guidelines Program provides healthcare professionals in Ontario and worldwide with the best options for managing the side effects of cancer and improving the health and quality of life of children with cancer. These Guidelines translate the current evidence into recommendations for daily clinical practice. For example, in POGO's most recent guideline on managing fatigue (published in the medical journal Lancet Child & Adolescent Health), physical activity is strongly recommended as a way to help ease this common and distressing symptom. It further recommends that physical activity should suit each patient’s specific needs, likes and abilities. The POGO Guidelines team based this recommendation—one of four—on research with adults that showed the consistent benefit of physical activity, and the universal availability, low risk of harm and low costs of fitness options. The fatigue guideline was developed by a multidisciplinary and multinational group of experts, together with childhood cancer survivors.
More about Supportive Care Clinical Practice Guidelines
Supportive care helps manage cancer’s side effects
Supportive care is the prevention and management of the adverse effects of cancer and its treatment, which means managing the side effects of cancer and cancer treatment. Supportive care includes preventing and treating infections, reducing nausea and vomiting, as well as managing psychosocial issues, including depression, anxiety, and caregiver distress.
Clinical Practice Guidelines improve outcomes
Guidelines provide a way of translating evidence into clinical practice. Across clinical specialties, treatment according to guidelines has been shown to improve outcomes. Providing evidence-based supportive care for healthcare teams has the potential to optimize treatment outcomes, reduce suffering, and improve the quality of the cancer treatment journey for children with cancer.
POGO’s Clinical Practice Guidelines are internationally endorsed
In its short duration, the POGO Guidelines Program has been extremely successful. In addition to the newly released management of fatigue guideline, POGO has published six Guidelines. Five have been endorsed by the Children’s Oncology Group (COG). This means that links to the guideline recommendations are now embedded into the COG’s trial protocols. Endorsements by other organizations, nationally and internationally, include the Canadian C17 Network, the American Society of Pediatric Hematology/ Oncology and the Multinational Association of Supportive Care in Cancer.
POGO’s Clinical Practice Guidelines fill a void
POGO’s Clinical Practice Guidelines are incredibly important for healthcare teams because very few evidence-based supportive care guidelines exist that specifically focus on children with cancer. POGO’s Guidelines are informed by parents who rank the treatment-related adverse effects as most severe and concerning to their children, and by pediatric oncology healthcare providers who have identified topics for which guidance is most needed.
Read all of POGO’s clinical practice guidelines
POGO Celebrates Pediatric Oncology Nursing Excellence with Bruna DiMonte
"Excellence in oncology nursing is about demonstrating a high level of compassion, empathy and pediatric oncology specialty expertise in caring for kids with cancer and their families. Nurses incorporate evidence-based literature and research in our clinical practice, and we are excellent resources to allied health teams and the field of pediatric oncology. We advocate for resources to meet the challenging needs of kids with cancer, families, pediatric oncology nursing and the childhood cancer care system."
Data Drives Practice
These days, my work at SickKids overlaps with my data management role at POGO. In both organizations, I lead teams responsible for capturing data in our POGONIS database. This data—clinical information that includes specifics about children’s diagnosis, treatment, complications and long-term outcomes—is used by POGO and our system partners for cancer surveillance, research, decision-making, system and program planning and evaluation, and policy advice.
Her Passion for Her Patients and Work as a Pediatric Oncology Nurse
My early career was devoted to working on the frontlines and in doing so, I always strived to provide compassionate care to kids with cancer. While it’s hard to choose, I would say that one of the most rewarding things was finding time in my day to play with a child and distract them from the complex cancer treatment I still had to provide. Every day brought a new set of challenges and however a child’s story played out, my only hope was that I had made a positive difference in their life and their family’s.
POGO Values Pediatric Oncology Nurses
I have had the pleasure of helping POGO support pediatric oncology nurses in making valuable contributions to the pediatric oncology community. I am the staff representative on the POGO Nursing Committee and have worked with Committee members on such special projects as POGO guidance documents about telephone practices (telepractice) and the safe handling of antineoplastic agents. The Committee has also had the opportunity to contribute to publications, abstracts, presentations at conferences of health organizations like the Association of Pediatric Hematology/Oncology Nurses (APHON), The International Society of Pediatric Oncology (SIOP), and POGO education events like AfterCare Education Day, the Annual Multidisciplinary Symposium on Childhood Cancer and Nursing Pre-Symposia education events. Through POGO, pediatric oncology nurses also have the opportunity to advocate on a policy level, and in the past actively supported POGO’s recommendation of the nurse coordinator position and acquisition of the Interlink Nursing program. POGO also proactively seeks preceptorships with nursing student placements at the POGO office and with the POGO Interlink Nurses at their hospitals.
Other Career Achievements of which Bruna is Most Proud
This is another difficult question as I have had many wonderful opportunities to support novice pediatric oncology nurses, as well as data managers and researchers. I hope I have helped empower others to provide excellent clinical care. And, in collaborating with researchers using POGONIS data for epidemiological research and data analysis, I hope I have adequately supported their policy planning and program development goals for pediatric oncology, and inspired them to collect accurate provincial population data for these needs.
Bruna DiMonte, RN, BScN, has been a pediatric nurse for 36 years and has spent 28 of those working double duty at The Hospital for Sick Children (SickKids) in Toronto and with POGO as the Senior Database Administrator and Privacy Officer
