Victoria Hagens Joins POGO Team as Director of Strategy
Victoria Hagens brings extensive experience in healthcare to the new and pivotal role of Director of Strategy, Programs and Partnerships. As a member of POGO's Senior Leadership Team, Victoria will have strategic oversight for POGO strategy and programs, and responsibility for deepening relationships with partners. Her leadership of Ontario’s new five-year Childhood Cancer Care Plan will include managing, measuring and monitoring the achievement of strategic priorities.
Victoria has worked in Ontario's healthcare system since 2008, in the areas of strategy, program implementation and system performance. Most recently, she served as a Senior Advisor at Ontario Health, Interim Director at the Juravinski Cancer Centre in Hamilton, and as a consultant with POGO. Prior to her freelance work, Victoria spent 14 years at Cancer Care Ontario, collaborating closely with Regional Cancer Programs and provincial clinical programs. As Group Manager, Regional Programs and Performance Management, she led a high-performing team in supporting implementation of provincial initiatives and local quality improvement efforts. She earned a Master of Arts in Social Anthropology from Dalhousie University.
"I am honoured and excited to be part of an incredible group of smart, dedicated, and collaborative people who demonstrate every day how creativity and partnership can help drive meaningful change,” she says. "I look forward to working with childhood cancer care teams and partners to make a lasting impact for children, youth and families."
POGO Welcomes Dr. Donna Johnston as New Medical Director
After a comprehensive recruitment, POGO welcomes Dr. Donna Johnston as the incoming Medical Director, starting Monday, March 3rd.
Reporting to the POGO Board of Directors, the Medical Director helms the overall strategic clinical leadership across POGO’s programs and portfolios, and in partnership with POGO's CEO, Lauren Ettin, is responsible for the achievement of POGO’s vision and mission, identifying strategic and transformational opportunities to advance childhood cancer care in Ontario.
Donna will continue her clinical role at CHEO, where she has worked as a pediatric oncologist since 2001. From 2012 – 2024 she was Chief of Pediatric Hematology/Oncology and, in that role, served as a member of the POGO Board. In 2021, she was appointed as Vice-Chair, Clinical Operations of the hospital’s Department of Pediatrics.
Donna is a full professor at the University of Ottawa; a Senior Scientist at the CHEO Research Institute; and the author of over 200 peer-reviewed publications, several book chapters and has presented her work at many national and international conferences.
Donna shares her passion for advancing the field of pediatric oncology avidly, through her leadership contributions to such organizations as the International Society of Paediatric Oncology (SIOP), the Royal College of Physicians and Surgeons of Canada, Ronald McDonald House in Ottawa, among others.
She says that “Since joining the POGO Board in 2012, it’s been my dream to be the Medical Director – a role that is pivotal in ensuring the best care for our childhood cancer patients, survivors, and their families. I look forward to joining the exceptional POGO team, to work in partnership with Lauren, and to be part of the work as leaders in childhood cancer care, provincially, nationally and internationally.”
Congratulations to Dr. Donna Johnston! We have no doubt that in her new role she will continue to make exceptional contributions to the childhood cancer community in Ontario and beyond.
A message from James Scongack, Chair, POGO Board of Directors and Dr. Charmaine van Schaik, Vice-Chair, POGO Board of Directors
A Reservoir of Strength: Navigating My Child’s Cancer Journey
A question I’m often asked is, “How did it all start?”
It starts with our daughter Ellie—our healthy 10-year-old daughter who played on every sports team. To us, she was the picture of vitality.
One day we noticed what we thought was an innocent bump on her left cheek. Our general practitioner (GP) wasn’t concerned, thinking it was just a benign tumour made of fat tissue. We didn’t think too much of it until it started to grow. Ellie didn’t like how it was changing her face, so we made an appointment with a plastic surgeon to have it removed. Like our GP, he also assumed it was a little benign cyst and that it was nothing to worry about.
Two weeks later, we visited our plastic surgeon for Ellie’s routine post-op meeting. I observed the nurse’s energy and knew that something was wrong. It was the way his eyes darted between me and his computer screen that made the air in the room shift. At that exact moment, I felt my world fracture.
The plastic surgeon took me into the hall and told me Ellie’s biopsy was abnormal and needed to be sent away for more tests. Ten days later, we received the devastating news—our little girl had a type of cancer called rhabdomyosarcoma.
Struggling to make sense of our new reality, we met Arvinder, our POGO Interlink Nurse. When she called to book her first home visit with Ellie, I remember confessing to her that I was terrified and didn’t know how to get through this. She quickly replied, “Don’t worry; you’ve got me now, and I’m going to get you through this.”
Arvinder kept her promise. She’s made multiple home visits; connected us to every single resource we can access; met with Ellie’s teachers and explained to them how her treatment has affected her learning, academics and more, and, above all, she held our hands every step of the way.
About two months into Ellie’s treatment, we were at the hospital for a long day of chemo. Our oncologist asked me to step out and meet her in a small room down the hall from where my husband was sitting bedside with Ellie.
She calmly told me that Ellie’s biopsy indicated she may have a genetic mutation that would make her chemo-resistant. If Ellie was positive for this gene, it meant her treatment plan and chances of survival would change drastically. This also meant that our son, Oakley, might carry the same gene, making him vulnerable to a cancer diagnosis as well. Once again, the air in the room changed, and I was thrown even deeper into a place of fear and uncertainty.
Returning to the room where Ellie was receiving chemo, I had to sit across from my husband and text him every word I could remember our oncologist saying. My hands were trembling while I wrote to him, watching his face absorb this news two feet away from me. We were unable to react, hold each other or say anything without Ellie catching on. Instead, we just sat there silently while tears filled our masks.
Something interesting happens when you’re faced with the traumatizing and terrifying possibility that you could lose your child. It turns out we have this hidden reservoir of strength buried deep inside us. All parents have it, I assure you. And when your child’s health or wellbeing is threatened, the doors to this reservoir get ripped off their hinges and you are flooded with a strength and resilience you didn’t know you had.
During the seven agonizing weeks that we waited for Ellie’s genetic test results, we waited to find out if our daughter would survive this or not. We made her comfort our primary focus, trying to find as many moments of joy and peace as we could. We did everything we could to turn our fear and grief into love and beauty for our daughter. And it worked. When Ellie looks back at her treatment, she mostly remembers it as a cozy, warm and family-centered time. She remembers us all cocooned on the couch, sitting by the fire, taking long warm baths (which we did every 45 minutes, day and night, to relieve the pain). We did everything we could to make her feel hugged, when in reality, we were clinging to the edge trying to maintain our grip.
Finally, I got the call confirming Ellie was negative for the genetic mutation, and we were cleared to proceed to our next phase of treatment—precision radiation called proton therapy, which was only available to us in Jacksonville, Florida. This moment will go down as the most glorious release, the greatest exhale a human being can ever make. It changed every breath I’ll ever make again, and it changed my entire life.
When we returned home to Canada after two months in Jacksonville, Ellie continued chemo at the POGO Satellite Clinic at Credit Valley Hospital—a warm and lovely treatment space not too far from our home. Her nurses, Lindsay and José, walked Ellie through every step of the process and gave her control over her treatment. We saw the same faces every week, which helped alleviate Ellie’s fears. And when she would get a fever in the middle of the night, we had our cozy, familial place to go to.
It's been 10 months and Ellie’s scars have healed, her hair has grown back and she is back in school and on all her favourite sports teams. But as I said before, cancer doesn’t have a clear ending. It’s not over when chemo is done or when a child rings the bell. Ellie’s collateral damage is still to be determined. There is the real possibility of complications later in life and we all live with the fear of relapse or secondary cancers when she’s older.
Despite my worries, I find comfort in knowing that POGO is still on this journey with us post-treatment. Ellie will be monitored regularly for the rest of her life at a POGO AfterCare Clinic. If any late effects are detected, they will be caught early and treated, and the information about her childhood diagnosis and its treatment will continue to be available to us and used as a guide.
I want to make note of a beautiful thing that happens during a child’s treatment. You’ll notice when a parent is talking about their child’s cancer, everything is framed as “we.” “We” have chemo today, “we” have a port flush, “we” have bloodwork, “we’re” being admitted. And families speak this way because our child is an extension of us—if they’re going through something, you better believe we’re going through it right beside them, every step of the way.
I cannot speak for other families, but for ours, the “we” extended beyond our family unit. Arvinder, our POGO Interlink Nurse became part of our “we.” Lindsay and José at the POGO Satellite Clinic became part of our "we." Not merely as part of a service or an access point, but as part of our team and our family, who we simply could not have done this without.
To us, POGO is and forever will be part of our “we.”
Adapted from Samantha Taylor's speech at the 2024 POGO PJ Party
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A New Normal: My Post-cancer Reality
Adapted from Jacob's Speech at the 2023 POGO PJ Party
Before cancer, I was a very active high school student: I played the guitar, saxophone, piano and bass, and I was involved with the Burlington Teen Tour Band. I also stage-managed my school’s theatre program and worked at Cineplex Theatres part-time.
Everything changed the moment I was diagnosed with osteosarcoma (the same cancer as Terry Fox’s) in March 2019 at the age of 16. Immediately, I started to think about all the things I had planned but would have to miss due to treatments. It was a hard reality to face.
Over the next few months, I went through chemotherapy to shrink the tumour in my pelvis. Thankfully, I was able to take a break from treatment to go to France to perform with the Burlington Teen Tour Band. I was thrilled to spend time with my friends and not feel like the “sick guy.” It was one of the highlights of my cancer journey before what would eventually become the darkest time.
Shortly after coming back to Canada, I had surgery to remove the tumour. I was hopeful that the life I knew before my cancer diagnosis would be something I could get back to within a short period. I wasn’t at all prepared for what was to come post-surgery.
I stayed at the hospital for three more months to undergo additional chemotherapy. My experience was nothing short of a nightmare. I couldn’t sit up or move properly. I had blood clots, infections and blood transfusions. Every day I spent in a hospital room took a toll on my mental health. All I wanted was to be cleared to go home and to continue my treatment as an outpatient, but it got to a point where the end of treatment wasn’t even on my radar anymore.
Finally, after months of treatment, I was discharged from the hospital in August 2019. Though it was difficult for me to navigate my environment without my parents’ assistance, I was still happy to be back in the comfort of my home. It made all the difference for my mental health and gave me the space to adjust to a “new normal.”
With the support of my family, friends and incredible organizations like POGO, I went on to accomplish some amazing goals: I returned to school virtually and earned enough credits to graduate with my class; I went from using a wheelchair to crutches and started physical rehabilitation and; I started my Bachelor of Arts program in Popular Music Studies at the University of Western Ontario, where I joined the school’s marching band. I have dreams of becoming a professional music producer, and I’m excited to see where my learning takes me.
Like many childhood cancer survivors, my disease and its treatment have left a mark that has affected my cognitive function, ability to learn and retain math, and overall mobility. Only time will tell if these complications will ever improve, but I am content with where I am at in my journey.
I am grateful for the many kind and compassionate individuals at POGO who played, and will continue to play, a significant role in my transition from a childhood cancer patient to a survivor. This includes the POGO Transitions Counsellors who have helped me ensure that I’m set up for success in university, and the POGO AfterCare nurses who continue to provide me with post-treatment support at my Clinic.
It is an honour to have been given this opportunity to speak on behalf of the childhood cancer community. Though this is the first time I am sharing my story publicly, I hope that it will transcend the limits of this space and inspire children, youth, fellow survivors, and their families in some way.
By Jacob McKenzie
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Attend the POGO Celebratory Dinner
At the 2023 POGO Celebratory Dinner we’re celebrating POGO’s 40th, the return of the POGO Recognition Awards and this year’s recipients, and, as always, excellence in the childhood cancer community.
We’ve packaged the fun in so many memorable ways (photo booth, table games & more) you won’t want to miss it! Plus, there’s dancing.
Friday, November 3
Pan Pacific Toronto
900 York Mills Rd.
Cocktails: 6:00 p.m.
Dinner & Awards: 7:00 p.m.
Tickets: $100
Cash bar
Business casual or conference attire
Ticket sales end Monday, October 30
Buy your Celebratory Dinner ticket now
The dinner takes place during the annual POGO Multidisciplinary Symposium on Childhood Cancer, November 2 - 4. If you’re attending the POGO Symposium, the Celebratory Dinner is included.
It’s a Privilege to Care for a Child with Cancer
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 nursing,” 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 co-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.”
COVID-19 Update: What Hospitals are Doing
Childhood cancer centres and POGO Satellite Clinics across Ontario are working diligently to ensure the safety and best outcomes for children with cancer during the COVID-19 pandemic.
For children with cancer, survivors and their families, the best way to reduce the risk of COVID-19 infection is to follow the recommendations outlined by the Ontario Ministry of Health, which can be found here. If you have questions about any specific precautions for your child or yourself, contact your oncologist or nurse.
Throughout Ontario, children with a new cancer diagnosis continue to be evaluated, undergo tests and start treatment with high priority and minimal disruption. POGO Satellite Clinics remain open and are an important component of keeping patients safe and the pediatric cancer system running. The childhood cancer treating centres are taking strong action to reduce the risk for cancer patients by limiting the requirement for well patients to attend the hospital by:
- Connecting through telephone or videoconferencing and rescheduling hospital appointments
- Deferring imaging and blood tests when possible
- Utilizing community-based laboratories for blood tests when possible
This is particularly true for childhood cancer survivors who have been off treatment for several months or more.
If you attend a childhood cancer clinic, extra precautions may cause some inconvenience, for example:
- Symptom screening is occurring at the hospital and clinic entrances
- There may be limitations on the number of adults/family members allowed to accompany a child in the hospital
- Playrooms may be closed
It is important to recognize that these measures are taken to protect survivors, your child and other children, family members, and staff in the hospital.
Your medical team understands that this a very stressful time for children, survivors, parents and families. Please talk to your team about your questions and concerns during this time.
David Hodgson, MD, FRCPC – POGO Medical Director
Paul Gibson, MD, FRCPC – POGO Associate Medical Director
Denise Mills, MN, RN(EC), NP Pediatrics – POGO Clinical Lead, Pediatric Oncology Nursing
Date of last update: January 2021
POGO Connects Childhood Cancer Survivors to Much-Needed Primary Care
Many childhood cancer survivors attending a POGO AfterCare Clinic report that they do not have a primary care practitioner. In fact, survivors are concerned that because childhood cancer is a relatively rare disease, most primary care practitioners are unlikely to have expertise in managing the late effects of treatment.
The main purpose of POGO AfterCare Clinics is to provide follow-up care for survivors of childhood cancer to ensure appropriate monitoring of long-term and possible late effects associated with the original disease and its treatment. Most survivors are seen in POGO AfterCare Clinics only once a year. But for many, particularly those living in rural or remote communities, even once a year is a challenge.
“It is critical that every survivor of childhood cancer has a family doctor,” says Dr. Stacey Marjerrison, POGO AfterCare Program Director, McMaster Children’s Hospital. “The POGO AfterCare Clinic team is focused on the late effects of the treatment, while the family doctor is focused on all aspects of wellness. If we identify any important late effects, like heart or lung problems, we need to be able to work with the family doctor to make sure the childhood cancer survivor continues to get the best care through their lifetime.”
POGO AfterCare Aims for Shared-care Partnership with Primary Care
Following an extensive consultation, POGO, through its Childhood Cancer Care Plan: A Roadmap for Ontario 2018 – 2023, defined a strategy to engage primary care practitioners and family health teams in the care of childhood cancer survivors. Beginning in 2019, the seven POGO AfterCare Clinics began a coordinated and concerted effort to make these connections. The goal is a shared-care partnership, fostering two-way communication and support between the primary care practitioner and the survivor’s AfterCare team, with the latter providing information and education about childhood cancer and its potential late effects.
“As a childhood cancer survivor, my health care is often complex,” says Kirsten, a young adult, who attends the POGO AfterCare Clinic at Toronto’s Princess Margaret Cancer Centre, 50 kilometres from her home in Brampton, Ontario. “The long-term side effects of chemo aren’t 100% known. The POGO AfterCare Clinic team is specialized to look at the drugs that I took during my treatment and allows me to receive testing and screening that might anticipate late effects. This allows my family doctor to focus on my general health and wellbeing. Without either side of my medical team, I would not be able to ensure I'm receiving optimal care.”
UPDATE: Dedicated staff across the POGO AfterCare Clinics have completed discussions with 131 primary care practices about accepting a survivor. Many of the participating primary care practices serve northern, rural and remote communities.
Caring for Survivors Increasingly Important as Population of Survivors Grows
Researchers tell us that up to 80%1 of childhood cancer survivors will experience at least one or more chronic health conditions by age 45 due to treatment they received to cure their cancer. As early as the 1950s, clinicians began to see that many more children were beating cancer, but that was only half the battle. Children treated for a childhood cancer were surviving only to develop significant therapy-related health problems later in life.
With the increasing success of childhood cancer treatments, caring for the growing survivor population with their unique healthcare needs becomes even more important. From the POGO Surveillance Report, we know that as of 2017, nearly 20,0002 children and youth in Ontario are survivors of childhood cancer. And right now, about 1 in 460 adults between the ages of 20 and 39 years is a childhood cancer survivor. As this population ages, their health care needs related to treatment late effects will rise.
The History of POGO AfterCare
In early 2001, POGO launched a network of survivorship clinics located in London, Hamilton, Toronto, Kingston and Ottawa for pediatric and adult survivors of a childhood cancer. POGO AfterCare Clinics, staffed by oncologists, nurses and allied health professionals, provide long-term follow-up care, including clinical examination for signs and symptoms of late effects, recommending tests such as an echocardiogram for possible heart problems in patients who received certain therapies, and referring survivors for breast and/or colorectal cancer screening based on clinical practice recommendations that take into account their cancer treatment history.
1Nathan PC, Agha M, Pole JD, Hodgson D et al Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer. J Cancer Surviv 2016
2Alive at least five years, or close to 5 years, after diagnosis.
Coronavirus (COVID-19) Information
POGO continues to actively monitor the COVID-19 situation to keep our teams healthy and informed, and to ensure continuity of our work on behalf of children with cancer, their families, survivors and the childhood cancer care system. Healthcare teams working in our partner hospitals and within POGO Satellite Clinics, POGO AfterCare Clinics and in the POGO Interlink Program continue to follow the guidelines of their respective institutions, keeping POGO updated about any modifications to their practice. Families registered in the POGO Financial Assistance Program should continue to submit their claims as usual. While the precautionary measures being made at this time may not be convenient, we appreciate everyone’s continued patience, understanding and cooperation.
For the latest COVID-19 information:
- Toronto Public Health
- Ministry of Health - Ontario
- Public Health Agency of Canada
POGO Office Staff Working Remotely
In line with the advice of public health authorities in response to COVID-19, and to ensure a safe and secure environment for POGO staff, clients and partners, all POGO staff continue to work remotely and POGO’s office at 480 University Avenue remains closed until further notice. During this time, POGO staff can be reached by email. Please refer to the POGO Staff List.
POGO School and Work Transitions Program Continues to Operate
POGO Counsellors are dedicated to supporting their clients through this challenging time and The POGO School and Work Transitions Program is continuing to operate with some modifications. POGO Counsellors are available by phone, Zoom or email as follows:
- In most cases, POGO Counsellors will not be travelling to their offices so will not have immediate access to all of their resources. This may mean a delay in getting information to you.
- Counsellors and clients can only meet in person in accordance with regional public health safety measures.
- In keeping with hospital directives, POGO Counsellors may not be in attendance at POGO AfterCare Clinics. We ask that you please be patient when awaiting a response following a clinic visit and know that your POGO Counsellor will get back to you as soon as possible.
- Our Survivor to Survivor (S2S) Network Workshops will all be delivered virtually starting in June 2021.
Education Events are Now Virtual
We are excited to be in the midst of planning our 2021 roster of professional development opportunities after postponing our in-person events last year. Multi-disciplinary healthcare professionals can look forward to our 2021 roster of events which will be available in either virtual or hybrid formats.
Donations
The need to raise funds in support of our programs and services is no less great during this challenging time. As always, it is possible to make a secure, online donation to Pediatric Oncology Group of Ontario at this link. Thank you for your consideration.
Date of last update: March 2020
Parent-Child Communication When a Child Has a Life-Threatening Illness
An interview with Eric Bouffet, MD, FRCPC and Ceilidh Eaton Russell, PhD(c), CCLS
A Swedish study published in 2004 looked at 429 parents who had lost a child to cancer and asked the questions: Did you talk to your child about the fact that they were going to die? If so, or if not, do you regret your decision? Although only 147 parents had that difficult conversation with their child, none of them regretted it, while 27% of parents who did not talk with their child about death regretted not doing so.
In 2018, POGO issued a seed grant to principal investigator Dr. Eric Bouffet and co-investigators Ceilidh Eaton Russell and Dr. Adam Rapoport to interview parents and children in order to learn how they talk together about the child’s illness, its impacts on their lives, their feelings and worries, including their feelings about dying if the child’s prognosis is not good.
POGO: What have you seen in your interactions with families who are dealing with a critically ill child?
Dr. Bouffet: What we see in our clinical practice is that while some parents are very open about talking to their child who has cancer, others don’t even want to use that word and they will tell the oncology team, “Don’t tell my child they have cancer.” At the same time, often the child knows and they will say to the child life specialist, or even the therapeutic clown, “I have cancer” or “I know I am going to die,” followed by “don’t tell my parents that I know.” Some children will even talk about when they will get their driver’s license or when they will get married. They are imagining a future they know they might never have, but also, they are trying to comfort their parents. Each party is trying to protect the other, so there is this mutual pretense.
Ms. Eaton Russell: Many parents who are able to talk openly with their child about their cancer diagnosis—even when the prognosis isn’t good and the child is aware they are going to die—often glow when they recount the conversations. They say that the time they spent together was meaningful and that they were able to offer some peace to their ill or dying child. At the other end of the spectrum, there are many families who cannot manage these tough conversations around end of life, and for some of them, when I see them months or even years after their child has died, the angst is palpable.
Related Story : Dying Without a Voice – Communication When a Child Can No Longer Speak
POGO: Your study interviews parents and children. How do you get children to open up about what is happening to them when they might not have the words?
Ms. Eaton Russell: We have this activity book with beautiful illustrations to help kids communicate. They can demonstrate how they feel about what is happening to them or they can tell the story as though it is happening to someone else so it does not feel as threatening. It is very informative for both us and for the children.
POGO: What does this funding mean for your clinical practice? What are you hoping to accomplish with this research?
Dr. Bouffet: It is about quality of life—today, but also for the future of this family and how they will feel when they reflect about the time they spent with their child at what is probably the most intense period of their lives.
Ms. Eaton Russell: I hope we can develop some strategies to help families who are struggling with this topic begin to talk openly with their critically ill child, regardless of the child’s prognosis. It would be great to develop some tools to train frontline staff to encourage families to have these difficult conversations. Potential future research could be piloting workshops for families or piloting a clinical role to work directly with the oncology team and the family to focus on supporting open communication between parents and their sick or dying child.
Dr. Bouffet: Research, particularly in a university or hospital setting, is typically labs, equipment and people who are making fabulous discoveries, but there are also very important needs for the psychosocial aspects of illness. Not all funding agencies are supportive of qualitative research, so this POGO seed grant is fantastic because even if it’s not going to “save lives,” it has the potential to make significant change in the quality of life of the families and patients we treat. I am very grateful to POGO for supporting this type of research; it can have a big impact on our practice.
POGO: What kind of impact has it had on you personally?
Ms. Eaton Russell: Childhood cancer treatment, especially when end of life is a reality, can be such an intimate time and an opportunity for meaningful connections. It is a real privilege to learn from families and to be able to share what I’ve learned to help other families make the most of the time they have together in a different way than they might have otherwise.
Dr. Bouffet: The results of this research can give healthcare providers more confidence when we speak to patients and families about their critically ill child, and so it must be shared. We often “do not have the guts” to tell the truth, but we have learned through our interviews that it is critical for children to be able to talk to someone and share their thoughts and fears. It is also critical for parents to be informed. Much of this knowledge is new and can change our practice.
Dr. Eric Bouffet is a professor of paediatrics at the University of Toronto, Garron Family Chair in Childhood Cancer Research and Head of the Neuro-oncology Section in the Division of Haematology/Oncology at SickKids in Toronto.
Ceilidh Eaton Russell is a researcher trained as a chid life specialist at SickKids and is Director of Research and Evaluation at the Dr. Jay Children’s Grief Centre.