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.
How Can We Improve Control of Chemo-Induced Nausea and Vomiting?
In a survey supported by POGO, chemotherapy-induced nausea and vomiting was identified as one of the top concerns of parents of children receiving chemotherapy. The antiemetic aprepitant—a relatively new and effective drug used to prevent these distressing side-effects in patients receiving chemotherapy—is only available in capsule format in Canada, so children who cannot swallow capsules cannot benefit from this medicine in its current form.
When a liquid form of a drug is not commercially available, pharmacists often manipulate dosage forms that are made for adults so that children can take those drugs. They do this by breaking up capsules or crushing tablets to make a liquid formula that children can swallow. This is called extemporaneous compounding. Some drugs become unstable as soon as you mix them with a liquid. In other words, they degrade so rapidly that the liquid forms are not useful; others might get absorbed into the bloodstream too quickly or not at all. Ideally when a pharmacist makes an extemporaneous compound, they use a formula or a recipe which has been studied so we know the drug’s stability. Even better is to understand how the extemporaneous liquid formulation is absorbed from the stomach into the bloodstream compared to the original tablet or capsule made by the pharmaceutical manufacturer.
In 2016, POGO awarded Dr. Priya Patel, RPh, PharmD, a MSc student with a Clinician Scholar Fellowship for her project: Relative Bioavailability of an Extemporaneous Oral Suspension of Aprepitant in Healthy Adult Volunteers. Priya, her supervisor Dr. Lee Dupuis, and their co-investigators Dr. Paul Nathan, Ms. Sue Zupanec, Ms. Jocelyne Volpe and Mr. Scott Walker, will be studying a liquid form of aprepitant designed for use in pediatric cancer patients to determine how well it is absorbed from the stomach into the bloodstream compared to the original capsule. This study will either give the current “recipe” a stamp of approval or help define what needs to be done to ensure that its performance is comparable to what we see in patients who are able to take a capsule format.
POGO is recognized as a world leader with regards to the topic of chemotherapy-induced nausea and vomiting in children. In addition to supporting research studies like Priya’s and creating new evidence around the topic, POGO leads in the development of clinical practice guidelines* to help physicians make informed decisions to optimize control of chemotherapy-induced nausea and vomiting for their pediatric patients. Until recently there were no clinical practice guidelines that focused on children for this purpose.
It’s all about creating new evidence-based information so it can be incorporated into the current practice guidelines and then implementing those guidelines so that children don’t experience nausea and vomiting due to chemotherapy. We are trying to get better at that.
*Endorsed by the Children’s Oncology Group, the world’s largest organization devoted exclusively to childhood and adolescent cancer research.
From Community to Tertiary Hospital, POGO Satellite Manual Helps Ensure Equitable Care
Sylvie Roberge is the Pediatric Oncology Satellite Nurse Coordinator in the POGO Pediatric Oncology Satellite Clinic at the Northeast Cancer Centre, Health Sciences North, Sudbury. She shares her insights on the importance to her practice of the POGO Satellite Manual. POGO Satellite Clinics are located in eight Ontario communities and provide some aspects of a child’s cancer care closer to home.
Q. How does the Satellite Manual impact patient care?
Sylvie: The POGO Satellite Manual directs Satellites in the day-to-day care of our patients/families by providing clear, best-practice documents in such areas as chemotherapy delivery, management of supportive care issues and palliative care. It guides healthcare professionals (HCPs), ensuring that families who are eligible for some of their care in the Satellite setting can safely receive high-quality care in their community comparable to that received in tertiary hospitals. The POGO Satellite Manual is a great tool for both for in-patient units and outpatient clinics.
Q. What difference does the Satellite Manual make in your job?
Sylvie: The Northeast Cancer Centre uses the POGO Satellite Manual as a reference in the development of our hospital guidelines, standards of care, and policies and procedures. The Manual also provides standard communication tools that can be downloaded for use between Satellites and tertiary centres so that all required information is shared between institutions in a timely, organized manner. Again, this facilitates the seamless, comprehensive delivery of services to our patients. The Manual also includes tools for Satellites to use in their annual report to POGO. This ensures that POGO receives the required data from the Satellites for its reporting to the Ministry of Health for data collection and research.
Q. What should families know about the necessity of the POGO Satellite Manual in the delivery of pediatric cancer care in the community?
Sylvie: The POGO Satellite Manual is an important tool that enables HCPs to keep pace with the rapidly advancing field of pediatric oncology. The content is regularly reviewed and updated in collaboration with HCPs in tertiary and Satellite centres to ensure that care in both settings is guided by the same principles. Families can be reassured that best-practice guidelines are being followed in their Satellite, much like in their tertiary centre, and that the standard of care is equivalent.
Q. How has the change from a binder and downloadable PDF to a web-based format improved the Satellite Manual?
Sylvie: This new format, including the removal of password protection, has made the information more accessible to HCPs in all settings, outpatient as well as in-patient. Physicians can now refer to the Manual from home, on any device, whenever they need to find information on a particular topic. The online Manual is easy to locate on the POGO website, user-friendly and the information is clear and well organized. This format also allows for easy updating of individual sections of the Manual.
The POGO Satellite Manual is a resource for healthcare teams working in the POGO Provincial Pediatric Oncology Satellite Program.
In Loving Memory of Susan Grace
From POGO employee to POGO volunteer, Susan Grace was a true champion of kids with cancer and their families. On May 4, 2017, Susan lost her own personal battle with breast cancer.
In 1992, Susan started her journey with POGO as an administrative assistant. Over the years, she was the mainstay for POGO, performing such other roles as receptionist, office manager, controller, assistant to the executive director, publicist, event planner, project manager, and even dish washer! She saw POGO grow from just two employees to its present staff of about 60. Susan worked tirelessly weekdays and many weekends and met every deadline with a smile.
Susan was diagnosed with breast cancer in 2003, and after treatment and surgery, went into remission in 2004. In spite of her diagnosis, Susan considered herself very fortunate and made the most of every day thereafter.
In 2004, Susan received the POGO Companion Award which recognizes those who have made a prolonged and enduring, exceptional and sustained commitment to advancing state-of-the-art childhood cancer control.
Susan returned to POGO in June 2005 until March 2006 as the temporary controller until the organization filled the position permanently.
In June 2006, after 15 years with POGO, Susan resigned and began her second career with POGO as a volunteer. Susan's overall contributions to POGO are invaluable and include work on POGO's annual staffing study, infrastructure improvements, and POGO's legacy database tracking milestones in the organization's history.
A volunteer par excellence, some of Susan's happiest days were at St. Bartholomew’s Church in Regent Park (Toronto) where she volunteered in the early-morning Breakfast Program from 1987 until recently. When Susan and her husband relocated to Alcona, on the shores of Lake Simcoe, she refused to even contemplate giving up the Breakfast Program and would rise early every Thursday morning, leaving the house at 3:10 a.m. for the drive into Toronto, arriving at the church by 4:30 a.m. to open the doors and welcome all who were waiting. From there, she would make her way to volunteer at POGO.
A lover of life, Susan was a cheerful, positive and optimistic person, always with a ready smile for everybody.
When Susan relapsed in December 2015, she faced this new challenge with the same positive attitude, truly believing that she was going to once again beat the disease. She was determined to meet her life goals, which included more travel, selling her dream home on Lake Simcoe and settling into a new condo in Toronto.
Susan Grace is a POGO Champion who made lasting, behind-the-scenes contributions that will forever endure across the childhood cancer community and system.
POGO Interlink Nurse Marilyn Cassidy Wins Caregiver Award
POGO Interlink Nurse Marilyn Cassidy is a recipient of a 2017 Canada Cares Professional Caregiver Award. In the 42 years that Marilyn has been a nurse, she has worked at CHEO for 24 of those years and has championed childhood cancer care as a POGO Interlink Nurse at CHEO for 19 years.
According to Marilyn, "One of the things I love most about my work is the daily opportunity and challenge of trying to make the difficult journeys for patients and their families even just a little bit easier in my role as a POGO Interlink nurse, as well as the definite privilege of working with the most amazingly resilient children and their families. I am probably most proud of the CHEO Buddy Program, Quality in the Community, that we have developed over the years. The program is supported by Camp Quality and we partner with the University of Ottawa medical students to provide buddies for approximately 20 patients per year. This program has brightened the days of so many of our patients, provides respite for parents and provides med students, our future physicians, with a wonderful perspective on the family experience during treatment."
Marilyn's nominators had this to say:
Marilyn is compassionate, her work is knowledge based, family centred and highly principled and she enriches each of us who are given the opportunity to work with her.
Marilyn’s work with the Interlink team involves advancing the quality of life for children with cancer and their families and forging diverse community partnerships including social services, parent groups and schools. She has been involved relentlessly in school support and reintegration for children and their siblings.
She has been a mentor to many over her 40-year nursing career, including nursing and medical students; preceptorship and teaching to the greater health care community with in-services, presentations and involvement in pediatric oncology research.
Families from CHEO who come to Toronto for care praise her gentle, kind, knowledgeable work. Families come prepared and supported and remain connected to her while they are away from their principle treatment centre. She is respectful and flexible and has an innate ability to understand the nature of being a child with cancer, a parent watching their child go through treatment, and the sibling who often feels left out. She goes above and beyond, advocating for families on a personal and community level, helping drive provincial policies.
Her work with POGO highlights her ability to see the big picture and her committee work is the driving force that keeps the work moving along. She identifies needs and gaps and works to find resources and supports to fill the gaps. Currently, she is involved in several initiatives in POGO’s Provincial Pediatric Oncology Plan that advances the existing childhood cancer system.
As her POGO Interlink colleagues, we value her ability to think outside the box and therefore advocate beautifully for the oncology patients. Her wisdom and drive not only benefit her patients but all children with cancer in Ontario.
Marilyn has so many qualities but I think her main strengths are sustained energy, creativity and a drive to never stop improving service to patients, families and the community. She is a natural leader, leading by example for us all to benefit. Marilyn is exceptional! I cannot think of a better person to aspire to and to acknowledge in this way.
Sally Casey
POGO Interlink Team Leader
Lessons Learned in my Practice
In November 2016, POGO welcomed Dr. David Hodgson as its new Medical Director and Chair in Childhood Cancer Control. Here are Dr. Hodgson's remarks on the occasion of his welcome reception at the University of Toronto's Massey College.
In the summer of 1989 I came to the Associate Dean’s office, about 800m from here, for my medical school admissions interview. At that time, admissions interviews were done after the med school applicants had already accepted, so the stakes were low.
We discussed undergraduate experience, my hopes for medical school, and after about 20 minutes, the Dean asks me, “Are you excited about going to medical school?” I said, “Sure, why do you ask?" He replied, “Well you don’t look very excited.” I told a friend in grad school about this and he said I should have answered, “Are you excited about being Dean?” But I didn’t say that, which in part is why I’m here today.
I learned a lot in medical school, but of course many of the most important lessons were learned afterward, and two in particular I’ll mention today.
Only after some time in practice did I learn the first lesson, which was to appreciate how scared our patients and their families are. The writer James Hollingsworth wrote, “Courage is not the absence of fear, but rather the judgement that there is something more important than fear.”
And what greater fear could there be than to have what one values most – one’s life, or even more so the life of one’s child - taken away? Imagine how it feels to give a group of strangers permission to surgically remove parts of your child’s body, irradiate them, and give them so much chemotherapy that their bone marrow is wiped out, saved only by a plastic bag of stem cells kept in a freezer. But every day we have the privilege of helping families who give us permission to do exactly that, with incredible courage, because they work towards something more important than their fear: a normal healthy life for their child.
The second lesson is that it’s harder than I expected it would be to be a good doctor; to consistently provide high quality care. Now, fortunately, we work in a system that for the most part facilitates good care, and one only needs to talk to our counterparts around the world to see how lucky we are to work where we do.
But our knowledge is incomplete, our treatments imperfect, our resources limited, and we battle inefficiencies and bureaucratic absurdities that can wear us down. Too often we are not able to deliver the healthy life that our patients and their parents hope for.
That is why the work of POGO, in collaboration with the tertiary care centres and satellite clinics that make up the pediatric oncology system, is so important. Work to roll out new treatments in a timely and equitable way, to provide financial support for families being crushed by out-of-pocket costs, to offer academic and vocational support for survivors to succeed long after treatment is over, and to conduct research to further improve system performance. This is critical work that POGO does that benefits patients for sure, but make no mistake, also benefits everyone in this room trying to reduce the burden of childhood cancer care in Ontario.
So I’d like to say that I am very excited to do my part to help with this important work – work that strives to be worthy of the courage of our patients and their families, and that allows us to provide the kind of care we aspired to give when we started school.
And Dean Young, just so you know: this is what it looks like when I’m excited, in case you didn’t recognize it.
-- Dr. David Hodgson, POGO Medical Director and Chair in Childhood Cancer Control, November 28, 2016
Read more about Dr. David Hodgson
Student Perspectives on the 2016 POGO Symposium
The 2016 POGO Symposium on Childhood Cancer examined clinical and scientific advances in the diagnosis and treatment of leukemia in children and adolescents. This professional education event attracted an exceptional roster of internationally renowned childhood cancer healthcare practitioners to present on this topic, and scores of delegates—practising and emerging professionals alike. Among the latter were seven undergraduate and post-graduate students who attended on bursaries and subsequently shared their learnings and inspirations from this year’s event.
Here are excerpts from their recaps.
Networking at the POGO Symposium
“As I begin my graduate career, the opportunity to speak with scientists, nurses and allied health professionals in the field was incredibly helpful. I was informed of the variety of specializations I could follow, was given advice for career development, and started a network of connections to work with. Learning more about current research, and speaking to experts who share similar passions for their work, was incredibly inspiring! I left the Symposium feeling motivated in my work and connected to an amazing community of equally passionate healthcare professionals!”
-Jacqueline van Warmerdam, MSc Candidate, The Hospital for Sick Children & The University of Toronto
“Throughout my experience at the POGO Symposium, I was able to meet other nursing students, nurses, nurse educators and nurse managers. I was fortunate enough to sit at a table with a few oncology/haematology nurses that currently work at SickKids and was able to ask a lot of questions about their experience. I am excited to learn more as I pursue a career as a pediatric oncology nurse and look forward to future POGO Symposiums."
-Mackenzie Heath, Bachelor of Science in Nursing, Year 4, Western University
“This conference provided me with the opportunity to network with nurses who work on the unit which I aspire to work on, as well as be introduced to the unit manager of the unit which I hope to work on upon graduation. This conference provided incredible networking opportunities as a student nurse, and I was able to learn from my future RN colleagues and gain their insight into the coming months leading into my career.”
-Kealey Clarke, Collaborative Bachelor of Science in Nursing Program, Year 4, Western University/Fanshawe College
The Multifaceted Field of Pediatric Oncology
“Although leukemia brings many challenges, the conference emphasized the successes and acknowledged how far the field has come in terms of cure rate which was amazing to learn about. Dr. Nina Kadan-Lottick gave a wonderful talk on managing behavioural treatments that are observed during treatment. She emphasized the importance of quality of life and how this includes mental health. She talked a lot about providing psychosocial support and how there are upcoming interventions that are used to help provide that support to youth who may be experiencing anxiety. Dr. Sharon Guger discussed how leukemia is having impacts on attention, memory and learning and how this can impact quality of life post treatment. Another major area of focus was on future research and future targets for leukemia treatment. One talk that stood out the most was Dr. Stephan Grupp who discussed CAR-T Cell Therapy. This talk was full of innovation and demonstrated the future direction of leukemia treatment. Overall, the Symposium provided an educational, interesting and innovative series of talks that really impacted my knowledge and education surrounding the topic. I always love how the Symposium has a variety of speakers that cover many different perspectives. It shows the multidisciplinary approach to pediatric oncology and makes the field so unique.”
-Nini Nguyen, Bachelor of Health Sciences (BHSc), Child Health Specialization, McMaster University
“I specifically enjoyed the sessions on the psychosocial aspects of cancer treatment, with an emphasis on the family. The discussion on sleep habits during treatment of both parents and the patient was of particular interest to me. I also enjoyed the session on managing behaviour changes during treatment. I felt empowered by the specific nursing interventions that were suggested with respect to post-treatment distress in families undergoing childhood cancer treatment. This helped solidify one of the main messages I took away from the conference which was the quality of the cure…I feel very fortunate for this opportunity and look forward to attending the Symposium as a registered nurse next year.”
-Lisa Delanghe, Bachelor of Science in Nursing, Year 4, University of Windsor
“The presentations taught me a lot about where we stand in the fight against childhood cancer. In particular, I found the opening talk by Dr. Sallan to be an engaging and informative start to the conference; this talk was the best way for someone without a lot of leukemia expertise to be quickly updated and set up for the other talks. I learned a lot about precision medicine which inspires me in my future goals to combine clinical practice with molecular research. Dr. Nathan’s talk on the late effects of childhood leukemia really helped me to understand the unique nature of childhood cancers and to comprehend the importance of reduction therapy and survivor care. The poster sessions were very helpful as I had the chance to share my summer research with healthcare professionals, receive their input and hone my presentation skills…I even got to see the results of studies I myself had participated in.”
-Hayley Insull, Bachelor of Science in Biochemistry, Year 2, McGill University
“Without a doubt, the highlight of the weekend was being able to learn, first-hand, from world experts in the field of oncology. As someone who aspires to be a pediatric oncologist, it was so motivating to hear the journeys of these physicians and experts. It was especially inspiring to know that some of them have been witness to and participants in the immense strides that have been made in pediatric oncology (such as the increased survival rate in ALL), and humbling to hear that they still felt that they needed to do so much more.”
-Meghna Dua, Pediatrics Resident, Year 2, Western University
Knowledge Translation through Poster Presentations
“The posters were also an enjoyable part of the Symposium. It was fantastic being able to engage with students and supervisors through visual representations of their work. I was able to ask critical questions that deepened my understanding of their work but also helped to inform my own research questions and methodology. I hope to present a poster at next year’s Symposium and so I also took note of differences in layout and design of the posters.”
-Ashna Khanna, MSc Candidate, Clinical Research, Institute for Medical Science, University of Toronto
“Presenting at POGO was a great learning experience. As an undergraduate student, it was a phenomenal opportunity to practice my presenting skills and present on a project that I am passionate about. I was able to practice speaking in a professional manner with my target audience being informed healthcare professionals. I was able to disseminate knowledge regarding the iPeer2Peer Oncology project that I have been actively involved in and was able to connect some nurses with the principal investigator to potentially enrol current oncology patients at SickKids with a mentor in the iPeer2Peer program. I felt that this opportunity was a great knowledge translation experience and overall a great learning opportunity as an up and coming health professional and researcher.
-Carley Ouellette, Bachelor of Science in Nursing, Year 4, Western University.
Your baby has cancer
These four words are forever unforgettable. On May 26, 2015, my wife, Christine, and I had taken our 18-month-old daughter, Charlotte, to see a pediatrician at Grand River Hospital near our home. She was not herself—low energy and very pale. This was the third doctor’s visit that week and we were determined not to leave without answers. After a full morning of tests, Charlotte was diagnosed with acute lymphoblastic leukemia (ALL). We were brought to our knees. Shocked and scared, we learned her hemoglobin was at the dangerous level of 33 and we were rushed to Children’s Hospital in London for an emergency blood transfusion and the start of our cancer journey.
The next 16 days were filled with more transfusions, a surgery to implant her port, various procedures and the start of chemotherapy. We were introduced to doctors and nurses whom we’ve now come to think of as family, and we have learned as much as we could about this type of cancer and its treatment. The days were filled with procedures and the nights were mostly sleepless. It was an extremely difficult time but the silver lining was the care and respect we felt from every member of our medical team. As scared as we were, they gave us the strength to get through those days together as a family. We learned Charlotte’s treatment would span nearly two and a half years. It was at that point we decided Christine would leave her career to care for Charlotte full time. In a blink of an eye our lives turned upside down. We were terrified on many levels but we became quickly resigned to the start of this journey.
When it came time to be discharged, we were asked to stay in London to be close to the hospital until Charlotte had completed the induction stage of treatment. Leaving the security of the hospital was scary for us. We would no longer have a nurse on call to help answer questions or problem-solve at any time of the day or night.
On our last day we met Julie Dowler, our nurse case manager. Immediately we took to her kind and compassionate nature. Christine remembers their first email exchange that day. Julie told her, “Now we are family,” and she meant it. To this day, we still feel like we are her only patients. It was her support and reassurance that gave us the confidence to take the next step and leave the hospital that day.
While staying at my in-law’s home those next two weeks, we had a visit from Margaret Warden, our POGO Interlink Nurse. She helped to educate us further on leukemia as well as the role POGO would play in our lives. We learned about the generous POGO financial assistance available for childcare, food and accommodations, as well as information on the POGO Satellite Clinics. My wife and I had so many questions about what we could expect in the coming months and Margaret took her time to answer every one. Having her undivided attention in our home was comforting and we felt even more secure about Charlotte’s care.
We were counting down the minutes to the end of the induction phase. Charlotte had the full effects of the steroid treatment and in just a month our baby girl became almost unrecognizable. She was still only a baby and not able to communicate her needs or feelings. I remember she would clap her hands in frustration to get our attention. It was completely heartbreaking for our family.
At the end of induction, we were given permission to go home to Cambridge. Once home and settled, we started visiting the POGO Satellite Clinic at Grand River Hospital. It was such a relief to be able to get some of Charlotte’s treatments in our community. It meant I could go back to work and we could feel our lives starting to return somewhat to normal. Patti Bambury, our Satellite Nurse Coordinator, and one of Charlotte’s favourite people, takes great care of us. I’ve been impressed with the way the POGO Satellite Clinic communicates with our team at Children’s Hospital. We’ve never felt a disconnect in Charlotte’s care. Another thing we appreciate about Grand River Hospital is its small size. There are rarely more than a few families there for treatment at the same time so it tends to be a relaxed atmosphere. Christine and I have found comfort in connecting with the other parents while our children enjoy the play area. With only three main nurses, whom we’ve come to know very well, it feels very much like a family and this has gone a long way to improving Charlotte’s anxiety at clinic visits.
POGO opens 8th Satellite Clinic to Support Families in Peterborough area
Like all families on this journey, we’ve had our challenges to overcome. Charlotte’s first port developed a blood clot and she had to endure three months of twice daily blood thinner injections. Two other port surgeries and a PICC line were to follow. On top of this, there was a period of time where she would spit out her medication and we would have to practically hold her down to get her to take it. The worry and stress this cancer has caused in our lives has been insurmountable. My wife and I have both gone through our own stages of anxiety and depression at different times.
Trying to remain strong for Charlotte has been one of the hardest things I’ve ever had to do.
Now that we are nearly a year and a half into Charlotte’s treatment, we have learned how resilient and inspiring children are. Even on the bad days, there is always laughter. The life lessons I’ve learned from my two-year-old will carry me through the rest of my life.
Thank you POGO for your support, your financial assistance and for setting up the Satellite Clinics so families like mine can live more normal lives while still getting the care our children need.
Mike Anstead is the proud father of Charlotte.
"Charlotte turned 5 years old in November 2018 and is thriving in Kindergarten! Every medical follow up appointment finds her stronger and stronger and we are at the point where living with cancer is no longer a part of our daily lives. Life is wonderful, once again!"
- Mom Christine Sarlius, December 2018
Related Resources
Read The Childhood Cancer Care Plan to see how POGO is planning long-term to care for children like Charlotte.
Review The POGO Surveillance Report for the most recent 5-year data on trends in childhood cancer in Ontario.
Check out the presentations from Leukemia: Successes, Advances, Challenges, the theme of POGO's 2016 Annual Multi-Disciplinary Symposium on Childhood Cancer.
