admin | POGO

School Support for Children with Cancer from POGO Interlink Nurses

Posted on January 8, 2019 by admin

Eleven nurses make up the POGO Interlink Community Cancer Nursing Program and, together, they 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 Children’s Hospital of Eastern Ontario (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?

Posted on December 20, 2018 by admin

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.

The POGO Financial Assistance Program helps families with out-of-pocket costs when their child is in cancer treatment.

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

It’s a Privilege to Care for a Child with Cancer

Posted on December 19, 2018 by admin

Denise Mills, MN, NP Pediatrics

My introduction to POGO started 20+ years ago when I attended my first POGO Symposium. Back then, I craved learning more about pediatric oncology, and there were many POGO educational opportunities from which I could choose.

So, one day (and I am not sure of the exact details of how this happened), I found myself in a car with Dr. Mark Greenberg, a founding member of POGO, Corin Greenberg, POGO’s Executive Director at the time, and another staff nurse. We were on our way to the CBC to participate in an interview about childhood cancer awareness. They wanted a novice nurse’s side of the story along with Mark’s expert thoughts.

I was so nervous. Then came THE question.

“How can you work in pediatric oncology when it is such hard work?”

All of us who work in pediatric oncology either dread or welcome this question. It can be a conversation stopper or it can lead to an opportunity to educate the public about this important cause.

“It is a privilege to care for a child with cancer,” I remember saying.

At the time, I actually thought that I understood what it meant to do this work and I probably did to an extent.

I continued along in my nursing career gaining more knowledge and expertise. I felt good about my practice; I understood my purpose.

Fast forward to six years ago, nearly 15 years after that CBC interview. I found myself caring for my mom in a hospice. I spent hours there watching the healthcare providers at work, wondering, how do they do this?

One day, I was talking with a nurse.

“What kind of nursing do you do?” she asked.

“Pediatric oncology,” I said.

She then shared with me that 15 years before, her daughter had neuroblastoma and had died. We talked for a little bit and on her next night shift, she brought in a photo album, sat with me, and shared stories about her daughter. After, she thanked me for listening and for asking her questions about her daughter. Most people were too uncomfortable to talk with her about her daughter or acknowledge that she had a deceased child. She said that it was always the staff at McMaster Children’s Hospital and SickKids, where her daughter was treated, who understood what she was going through the most and were the easiest to talk to.

That interaction helped me fully understand how the care we provide has an impact on families. And so, to do the best in my work I believe I need the best ongoing education.

The annual POGO symposium is a high-quality conference and—along with POGO’s one-day education events—has played a significant role in my professional education. POGO’s reputation for excellence in education attracts a broad spectrum of healthcare providers to present and learn about topics related to survivor care, standards of care at POGO Satellite Clinics and research.

And through my work with POGO I can be a champion of childhood cancer care with the general public and educate healthcare providers across the province.

To this day, I still say that it is a privilege to care for a child with cancer and their family. After all, where else can you go to work and get hugs and high fives (from the kids) all day long?

Denise Mills, MN, NP Pediatrics, works at The Hospital for Sick Children in the Solid Tumour, New Agents and Innovative Therapy, MIBG Program. She is Chair of the POGO Nursing Committee and a past member of the POGO Board of Directors. She was a member of the planning committee for the 2018 POGO Multi-Disciplinary Symposium on Childhood Cancer and the Pre-Symposium Nursing Seminar. Denise is also a recipient of a POGO Seed Grant to fund her study “Improving Quality and Consistency in Family Education Prior to First Discharge Following a Pediatric Cancer Diagnosis.”

Awards Presentation Recognizes Contributions to POGO’s Provincial Mandate

Posted on November 21, 2018 by admin

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!

Dr. Jodi Rosner

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.”

Denise Reniers

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.

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. David Malkin

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

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

Posted on October 12, 2018 by admin

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.