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
Losing My Leg to Cancer
B.C. (Before Cancer), I was a competitive gymnast. I had also started dancing and had even participated in one dance
competition before everything changed.
While I was enjoying my new dance classes very much, I noticed severe pain, on and off, in my right knee. I didn’t understand why it hurt so much because I hadn’t fallen. I didn’t worry about it because as a gymnast, and a very active kid, I was used to getting aches and pains.
But then one day, I fell at home doing a very simple move I had been doing for years. I hit my knee against the floor and I was
in unbearable pain. An x-ray told us that nothing was broken. I was told to apply ice, take some Advil and avoid dance until the
swelling went down.
Three weeks later, my pediatrician viewed the results and thought they looked suspicious; perhaps a solid blood clot. He sent me to repeat the x-ray and referred me to The Hospital for Sick Children.
On March 14, 2016, we went to the 8th floor of the hospital, followed a long hallway and were in shock when we saw the words “Cancer Clinic.” That was the first moment it sunk in that something might actually be very wrong. The doctors told us they were 99% sure I had a tumour in my femur and sent me for an MRI and surgical biopsy. I was terrified; I had never had surgery before.
The tests confirmed that I had osteosarcoma, the same type of bone cancer as Terry Fox, and that it was not only in my femur, but it had also spread to my lungs.
We had a long meeting with the surgeon who outlined two options for my leg:
- Endoprosthesis would mean that the tumour would be removed, a metal rod
inserted to replace my knee and femur and my leg would be saved. That option
came with high risk of other complications, additional surgeries later in life and very
limited mobility. In other words, no dancing. - A surgery called rotationplasty, where doctors remove the leg from the unhealthy knee up to the thigh. They take the healthy lower portion of the leg and rotate it 180 degrees and reattach it to the upper thigh so the ankle faces upward. Essentially, my rotated ankle would function as my knee and I would require a prosthetic leg, but I would have greater mobility than with the other surgical option.
At the age of 12, I was given two months to decide which life-altering surgery I would have. My mom and I had many disagreements. She wanted me to save my leg, while I wanted to do the surgery that would allow me to continue to do gymnastics and dance rather than just watch from the sidelines.
On June 23, 2016, I had rotationplasty and within a few months of the amputation, I was trying on my new prosthetic leg. It wasn’t easy learning to walk again, but the motivation to do something I love helped speed up the process.
The time spent in and out of the hospital was an intense time for my family. In addition to the fear that comes with a cancer diagnosis, I had a hard time coping with being a little kid in such adult circumstances. My parents had to deal with new financial burdens. And my little sister, Lizzy, felt abandoned and thought we didn’t love her anymore.
During this time, POGO was there to help us in many ways. Our POGO Interlink Nurse came to our home and talked to Lizzy to help her understand that these hard times would end and everything would be okay. She went to my school and talked to my classmates to give them guidance on how to support me without overwhelming me during this very difficult time. And when my mom gave up her job to be by my side, the POGO Financial Assistance Program helped us out.
On December 30, 2016, I completed treatment for a battle I never imagined I’d fight. The following September, I started high school and signed up for several dance classes, including ballet, jazz and even tap! I have been regaining my strength to get back on stage.
I’m so grateful to POGO donors and I hope that you feel proud to support kids like me.
- Adapted from Emma Neagu's speech at the 2017 POGO PJ Party
In December 2017, at Emma’s regularly scheduled scans, they found that the cancer had returned in both her lungs. She had two surgeries to remove the metastasis. Emma is an active advocate in support of research for kids who fight cancer.
Related resources
Read POGO's Childhood Cancer Care Plan for a roadmap to support childhood cancer investigation and research.
Ethics and Consent in the Age of Precision Medicine - Forging a Path Forward
VIEW THE PRESENTATION
Presentation Description:
According to the U.S. National Cancer Institute, precision medicine is “a form of medicine that uses information about a person’s genes, proteins, and environment to prevent, diagnose, and treat disease.” Based on the use of targeted therapies, precision approaches hold great promise to improve outcomes for children and adults with cancer. However, precision medicine also poses challenges related to informed consent. First, precision pediatric oncology has yet to realize its potential, raising concerns about overpromising and unrealistic expectations of benefit. Second, because precision pediatric oncology remains largely experimental, clinicians must generally apply standards of consent appropriate to research. Third, precision approaches often yield insights about patients’ and families’ inherited cancer risk; as a result, clinicians must incorporate elements of genetic counseling into the informed consent process. This presentation will address these and other challenges that pediatric oncology clinicians will increasingly face as we move into the era of precision cancer medicine.
Speaker:
Steven Joffe, MD, MPH
University of Pennsylvania Perelman School of Medicine
Emanuel and Robert Hart Professor of Medical Ethics and Health Policy
Dr. Steven Joffe is the Emanuel and Robert Hart Professor of Medical Ethics and Health Policy at the University of Pennsylvania Perelman School of Medicine. He serves as Chief of the Division of Medical Ethics and directs two post-doctoral fellowships in bioethics and in the ethical, legal and social implications of genomics. He is also Professor of Pediatrics at Children’s Hospital of Philadelphia.
Dr. Joffe attended Harvard College, received his MD from the University of California at San Francisco (UCSF), and received his MPH from UC Berkeley. He trained in pediatrics at UCSF and in hematology/oncology at the Dana-Farber Cancer Institute and Boston Children’s Hospital.
Dr. Joffe’s clinical work is in pediatric stem cell transplantation. His research addresses the ethical challenges that arise in the conduct of clinical and translational investigation. He has been principal investigator of National Institutes of Health, Patient-Centred Outcomes Research Institute (NIH, PCORI) and foundation-funded studies that examine the roles and responsibilities of principal investigators in multi-centre trials, governance in learning healthcare systems, return of genetic results to research participants, and the integration of genomic sequencing technologies into cancer care. He is a member of the U.S. FDA’s Pediatrics Ethics Subcommittee and of the National Human Genome Research Institute’s Genomics and Society Working Group.
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
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
Pediatric Oncology Social Workers and Kids’ Cancer Care
We sat down to chat with Jane Cassano, MSW, and Cindy van Halderen, MSW, about the role pediatric oncology social workers play in the care of children with cancer and their families. Jane is a past member of POGO’s Psychosocial Services Committee and Cindy is a past co-chair of that committee and former member of POGO’s Board of Directors. They work together at McMaster Children’s Hospital in Hamilton. Here’s what they shared.
Describe the role of a social worker and the specific practice of a pediatric oncology social worker. Social workers are skilled at assessing and helping individuals, couples and families who are faced with a variety of challenges. The social work role can be found in hospitals, mental health clinics, schools, child welfare and community service agencies, and private practices.
Pediatric oncology social workers are heavily involved in supporting children, and their families, facing both a cancer diagnosis and the demands of treatment. Ideally, we meet a family at diagnosis so that questions and concerns can be addressed from the outset. Some of the early interventions include assistance with employment issues and applying for benefits, and making referrals to community partners, like POGO for the POGO Financial Assistance Program. Throughout the cancer journey, we provide emotional support and counselling, and monitor how the child and family are coping. We also provide resources for any family member who may be struggling, especially siblings.
What difference do you think social workers make in the lives of kids with cancer and their families? Parents have identified that having a social worker has eased the burden of managing applications for government funding, employment benefits and community resources. There are many programs available in Ontario to support a child with cancer and their family, and they can be difficult to navigate. Social workers are skilled at liaising and advocating with community partners. Parents have said it is a relief to have someone who has knowledge about what is out there and can help them navigate it all.
In such a rapidly evolving field, how do pediatric oncology social workers stay current about the issues of childhood cancer?
Pediatric oncology social workers stay in close contact with community partners like POGO. Ongoing training and education through POGO keep us and our colleagues at other Ontario hospitals up to date with current practices and standards. Through POGO, we have a voice at the provincial level, working as part of a multidisciplinary team to ensure pertinent psychosocial issues are addressed and acted on.
They say, “teamwork makes the dream work.” How is that true for pediatric oncology social workers and POGO? Pediatric oncology social workers and POGO work hand in hand, especially when it comes to the POGO Financial Assistance Program. Families often experience financial distress when their child is diagnosed with cancer. Many parents need time off work and they lose income or there is a major gap before supports begin. Many families are travelling from a distance, which creates a financial strain. Some benefits of the POGO Financial Assistance Program are that it provides stays at Ronald McDonald House and pays for child care for siblings. This support is provided immediately, which is when the need can be the greatest. Families have told us this has made a world of difference.
Culturally Competent Healthcare Focus of New Pediatric Oncology Course
POGO works to provide the best care possible for all of Ontario’s children with cancer, in part, by identifying gaps in childhood cancer care. In recent years, a POGO priority has been to focus efforts on enhancing culturally relevant care for Indigenous children, as Indigenous families often face barriers to culturally appropriate healthcare.
POGO’s focus has been on building relationships, identifying current opportunities to improve the care of Indigenous children with cancer as well as opportunities that might result in a more efficient system, and assembling the expertise needed to assess the issues, gaps and advances anticipated.
In 2017, POGO collaborated with Cancer Care Ontario to launch Pediatric Oncology, a new course in the recently refreshed series of Indigenous Relationship and Cultural Awareness courses offered by Cancer Care Ontario. These courses provide frontline healthcare professionals with knowledge about the history and culture of First Nations, Inuit and Métis people and communities and guidance on how to provide culturally appropriate, person-centred care.
POGO and Cancer Care Ontario know that cultural safety is a critical component for improving patient experiences and outcomes. Through video and text, the Pediatric Oncology course examines the differences between childhood and adult cancer, one family’s experience of the journey for Indigenous children with cancer, and the role POGO plays in helping to navigate this journey with a unique whole-life approach to childhood cancer care told from the frontline experience of a POGO Interlink Community Cancer Nurse.
The 13 Indigenous Relationship and Cultural Awareness courses are ideal for healthcare providers, those working with Indigenous people, and anyone who wants to better understand Indigenous history and culture. The courses are interactive, free of change and open to anyone. Each course in the Self-Learning program has been certified by the College of Family Physicians of Canada for Mainpro+ credits.
Indigenous Relationship and Cultural Awareness Courses
Watch the video featured in Pediatric Oncology
Raising a Child with Cancer as a Single Mom
My daughter Adaejah has always been a happy little girl—active, curious and very lovable. The fact that she was born with Down syndrome did not affect that. The fact that she had cancer did not change that.
The events that led to her diagnosis took place over a few months. Adaejah started at a school for children with disabilities when she was two years old. She developed a cold in September that had not subsided by December. She stopped eating and a cut over her forehead just would not heal. Multiple visits to our local hospital didn’t get us any closer to understanding what was going on, but within 45 minutes into an emergency visit at The Hospital for Sick Children, we found out she had leukemia. Adaejah was admitted immediately.
I was completely disoriented for a few days. The hospital connected me to a social worker to help me understand what was going on. My beautiful baby girl needed to go through several rounds of chemotherapy; she would not be coming home for six months; I could not go back to work because I needed to be at the hospital full-time; and I had to figure out how to manage as a single mother with two other kids at home.
I got a leave of absence from my job and received Employment Insurance (EI) benefits for parents of critically ill children. It wasn’t even the same as my salary when I was working, but I still had to buy food for myself and pay the bills at home. My 17-year old daughter became the caregiver to my seven-year old daughter while I lived at the hospital with Adaejah. When a child gets cancer, it impacts the whole family and how you go about things day to day. It was a huge adjustment for my kids and me.
We thought we were out of the woods when they finally sent us home. But complications of all kinds followed. Adaejah developed septic shock and kidney failure and had to receive dialysis. She relapsed and received a bone marrow transplant from a cord donor. During her second hospital stay, everything we owned was destroyed by a house fire and smoke damage. For several months after we were released from the hospital, we lived in transitional housing because we could not return home while Adaejah’s immune system was so compromised.
While I have family in Toronto, I did not get a lot of support from them during this time. I don’t even know if I can call them family anymore. I am very grateful to the friends who helped me when they could, to the hospital, and to Tina, my POGO Interlink Nurse, who has gone above and beyond. Tina connected me to so many resources, including donations during the holidays, special subsidies that helped pay the rent, and the POGO Financial Assistance Program that helped me with food and childcare. She has worked through my EI applications with me and helped to reintegrate Adaejah back into her special school.
We are not out of the woods yet. Adaejah is being monitored closely because her blood count is low. When she is able to travel, my hope is that we can all make a trip to Jamaica to see where I am from.
Ashmara was married recently and gave birth to her fourth child, Jeremiah. She is looking forward to going back to work and wants to move into a different neighbourhood to provide a better home for her family.
