Claire Slaughter, Author at POGO

Virtual Counselling to Help Childhood Cancer Survivors

Posted on April 14, 2021 by Claire Slaughter

A conversation about the mental health of childhood cancer survivors with registered psychotherapist Carly Fleming.

Q: How are the mental health needs of childhood cancer survivors unique?

A: Individuals who experience cancer as a child often carry the pieces of this experience with them into adulthood. This could be in the form of lasting physical pain/impairments or emotional trauma resulting from their treatment. They may also experience worry and anxiety about their future health, grief from losing friends to childhood cancer and guilt that they survived, or changes in family dynamics that came about as a result of their cancer. This is all a heavy load to carry. Often in childhood or the teen years, they aren’t emotionally ready to process the enormity of these things. But once adulthood arrives, the true weight and gravity of childhood experiences can come to light, resulting in mental health challenges. Survivors often feel that there is something wrong with them if they are still struggling years after being “cured.” Each person will experience things differently, but it makes sense that childhood cancer survivors may need to work through the emotional issues they are facing in order to live life to the fullest.

Q: What do you think healthcare teams can do to help their patients’ mental health?

A: The answer to this is simple. Ask good questions. Of course, asking good questions isn’t as easy as it may seem. When we ask good questions, we are open to any answers, not just the ones we predict or want to hear. When we ask good questions, we try to stay away from yes/no responses and leave room for complex, nuanced answers. When we ask good questions, we recognize that there may be uncomfortable silences, or the answers may make us feel uncomfortable, and that’s ok. When we ask good questions, we lead with curiosity.

Q: What has changed about counselling during COVID-19?

A: Before COVID-19, we had the technology to offer virtual counselling but rarely used it. In the past year, the vast majority of mental health services have gone virtual, forcing clinicians and clients to adjust quickly. I think the most significant change has been in our attitudes towards virtual counselling. We used to look at it as a second option, a sub-optimal choice when in-person meetings weren’t possible. This means some clinicians and clients weren’t fully bought into the idea of counselling this way. Now that we have been forced to adapt quickly to this modality, we have seen the good things about in-person counselling happen virtually. Plus, we are able to connect with people who live far away or have difficulty travelling to in-person settings. From the standpoint of counselling, the pandemic has created incredible opportunities to connect in ways that make it far less burdensome for our clients.

Q: Do you prefer virtual counselling? What are the challenges when treating a childhood cancer survivor virtually instead of in person?

A: It can take a little longer to establish a new relationship between counsellor and client online. Without the in-person connection, we sometimes have to work harder and be more patient before the wonderful feeling of connection arrives. This can be problematic when the client feels apprehensive about meeting with a counsellor. Arranging a few shorter meetings to get through the initial “meet and greet” or intake questions can help. Making sure we take time to make a connection in non-clinical terms is also really important. Just some simple chatting about their life and sharing of some common ground can make a huge difference. Another challenge is ensuring the client’s full attention to the online meeting. When we used to meet in person, clients would come into our office and have very few other demands/distractions. Now that clients connect with us from their homes/offices/cars, there are many other demands on their attention. Vulnerability is compromised when they aren’t in a private, quiet space.

Q: What do you mean by vulnerability?

A: To truly explore what is meaningful to an individual, we need to get them to take down their defences. Many survivors put on a brave face, but that is not where the healing and transformation occur. Vulnerability is essential to good mental health care.

Q: At POGO AfterCare Education Day, what do you hope to convey in your session?

A: I hope to convey optimism about how the move to virtual counselling during the pandemic is an opportunity to create more accessible mental health care for childhood cancer survivors. I want to share some of the experiences and insights that I have gathered after the past year of providing virtual psychotherapy. Lastly, I plan to highlight some specific safety measures to ensure we are ready to help our clients should we identify in a virtual appointment that their safety may be at risk.

I am looking forward to learning from the other presenters about their experience in providing care to childhood cancer survivors over this challenging year.

Carly Fleming is a Registered Psychotherapist and founder of everwell Integrated Health Professionals, a virtual counselling group in Hamilton, Ontario, offering a range of services to guide meaning and healing. She has worked as a counsellor in private practice and various healthcare settings for over 15 years, specializing in grief and loss, parenting, coping with illness, and life transitions.

You can hear from Carly first-hand at POGO AfterCare Education Day, where she will be presenting with Pediatric Psychologist, Sara Ahola-Kohut about Optimizing Online Mental Health Counselling for Childhood Cancer Survivors. To see the full program and register, click here.

Mental Health Support for Childhood Cancer Survivors

Posted on March 11, 2021 by Claire Slaughter

$1M Donation to Help POGO Transitions Program Expand Services

POGO is a proud recipient of a $1M donation from the Slaight Family Foundation as part of their $30M Mental Health Initiative supporting 19 Canadian organizations.

The funding, divided equally over four years, enables expansion of the POGO School and Work Transitions Program. This program supports childhood cancer survivors facing significant learning challenges—resulting from their cancer and/or treatment—which can interfere with their ability to achieve their educational and career goals. Furthermore, the impact of COVID-19 on the mental and emotional well-being of childhood cancer survivors has been substantial. Many are experiencing heightened anxiety regarding school or job security. Due to underlying conditions they may have as a result of their disease or its treatment, they fear they are at higher risk for developing complications if they catch COVID-19.

POGO Counsellors work one-on-one with survivors to help them develop plans and implement strategies to improve their academic or employment success, which in turn supports their mental health and emotional well-being. POGO will expand school- and work-related counselling to childhood cancer survivors, including services for francophone survivors and youth still on treatment, and grow the skill- and community-building Survivor-to-Survivor Network. We will also enhance program evaluation by incorporating outcomes related to survivor mental health and emotional well-being.

This generous investment, the largest donation from a family foundation in POGO’s history, helps POGO achieve an objective of the Childhood Cancer Care Plan to improve access to psychosocial and mental health services for survivors. It also demonstrates confidence and trust by a prominent donor in POGO to positively impact the childhood cancer care system, in particular care for childhood cancer survivors.

Far From Home When Your Child Has Cancer

Posted on December 16, 2020 by Claire Slaughter

By Stephanie Lacasse

The day I took my daughter Isabelle to the hospital, I was expecting to pick up a prescription for her and make my way to daycare to pick up my twins, Nicholas and Maxime, before meeting my eldest, Zacharie, at the bus from school. But when the doctor at our local hospital asked me to take a seat, I knew we were in for a much worse scenario. He told me her red and white blood cells were low—very low. He said it was likely cancer but they didn’t know what kind. He called ahead to the hospital in Sudbury and sent me straight there.

My husband, Joel, met us at the Northeast Cancer Centre and after a few more tests, we were told they were sending Isabelle to Toronto immediately. Only one parent could accompany her on the plane so being the more experienced driver, Joel made the six-hour drive to the city. I made arrangements for my best friend and my mom to pick up and take care of the kids, and we left. I had no idea I would not return home again for another 48 days.

“The first few times Isabelle got a lumbar puncture, I couldn’t breathe. Parents are not allowed in the room during the procedure and I just stood on the other side of the door paralyzed.”
– Stephanie Lacasse

Isabelle was diagnosed with acute lymphoblastic leukemia (ALL). The doctor told us the prognosis for kids with ALL is typically very good and the survival rate is high. We were so relieved; we decided to keep our sights on the end and buckle down for a fight. But the next few weeks were hideous and challenged us all in many ways. The intravenous needle in Isabelle’s hand kept coming out in her sleep and blood would spurt everywhere. She developed high blood pressure, severe pains in her belly due to constipation from the drugs and an infection where the port was implanted to deliver her meds. Isabelle also contracted C-difficile, a bacterial infection causing diarrhea, which completely wiped her out to the point she had no muscle mass in her legs and she had to learn to walk again. But the scariest thing for us was her non-responsive episodes which lasted for several minutes each time. Tests revealed that Isabelle had developed a blood clot in her brain from the original chemotherapy and she would require blood thinners delivered by needle twice a day for over a year. Joel took a month off work, but when we could not handle that financially anymore, he returned to his job and I stayed in Toronto to care for Isabelle by myself.

What Price Do Families Pay When a Child has Cancer?

I haven’t been able to go back to work. Joel works out of town, one week on and one week off, so when he is not with us I am the one navigating this world of blood tests and chemotherapy while coordinating care for the rest of my family.

Luckily, most of Isabelle’s care takes place an hour away at the POGO Satellite Clinic at the Northeast Cancer Centre in Sudbury. This saves me the gruelling six-hour drive with a nauseous child in the back seat and means more time at home with my kids and my husband. The nurses at the clinic go above and beyond when it comes to connecting us to resources, especially when I do have to make the trip back to Toronto for aspects of Isabelle’s treatment that cannot be handled in Sudbury. Our family is incredibly grateful for the support that we have received.

Read more to learn how POGO Interlink Nurses support children with cancer and their families.

Having a child with cancer takes its toll on the other kids, the household, the marriage, but we seem to be getting back to normal lately—or at least a new normal. My beautiful little girl is four years old now. She doesn’t need to sit on my lap anymore when she gets her blood work done and loves taking the bus to school by herself. She is one tough little cookie.

Surviving Childhood Cancer: From Confidence Buster to Confidence Builder

Posted on December 16, 2020 by Claire Slaughter

By Barb Williams

It is surprising to many to hear that childhood cancer does not end with “being cured.” Childhood cancer and brain tumour survivors can develop learning difficulties resulting from their disease or treatment. These late effects may be further complicated by long-term physical effects, as well as emotional problems and mental health issues. It is easy to see how and why these young survivors face struggles in the worlds of work and school. Despite their physical and cognitive challenges, childhood cancer survivors have high aspirations for themselves and are motivated to achieve their goals. The POGO Transitions Program was developed as the result of parents’, patients’ and doctors’ concerns about young students, many with invisible disabilities, falling through the cracks at a critical time in their academic lives—graduating high school and moving on to college, university or work.

The Ups and Downs of Disclosing That You Are a Childhood Cancer Survivor

I want to point out that not all survivors struggle to meet their academic and professional ambitions. For some, the obstacles they experienced due to their childhood cancer have helped build their resilience, discipline and confidence. But there are a significant number of childhood cancer survivors who are grappling with emotional and mental health issues, including anxiety, depression, low self-esteem, low confidence and self-worth—sometimes accompanied by social isolation and bullying. And these issues, as much as their learning challenges, can severely impact their ability to achieve their goals and become independent young adults.
As one of five POGO Counsellors across the province, it is my job to strengthen my clients’ confidence through realistic goal planning and facilitate their transition to post-secondary school and work. While there is a practical element to this in terms of job preparation and academic pathway information and navigation, there is often an emotional component. This is to say, I provide early guidance and career planning, help clients access the appropriate accommodations for school and work, and work with them to ensure their dreams and goals align with their strengths and skills. However, my colleagues and I also help our survivor clients address self-confidence and anxiety issues by listening without judgment and showing we care, and when further psychosocial intervention is required, we make the appropriate referrals. This one-on-one emotional support and encouragement POGO Counsellors provide is highly valued by survivors, as well as their family members who support them.

Sam’s Story: Focusing on Ability, Not Impairment

When I describe my job as working with childhood cancer survivors who experience challenges with school or work as a result of their disease or treatment, the most common reaction I get is how it must be such difficult or depressing work. On the contrary; I get to meet young people on their journey of surviving childhood cancer and planning for their futures, even if there are obstacles to overcome. We envision their next steps and talk about their dreams. I get the opportunity to engage with them in something positive, and if they are not feeling positive, there is a chance, with the rest of the healthcare team, to intervene and set them up for success. These are the things that make our Program so unique, so important and so uplifting. The most exciting thing for me as a POGO Counsellor is to watch my survivor clients’ self-confidence and ability to advocate for themselves increase, witness them rise to challenges they didn’t think themselves capable of, and see them achieve their goals and aspirations.

Barb Williams is the Provincial Coordinator and POGO Counsellor in the Hamilton area for The POGO School and Work Transitions Program (POGO Transitions Program). The Program facilitates a smoother transition for childhood cancer and brain tumour survivors moving on from high school to appropriate post-secondary and work opportunities. This post is based on Barb’s professional experience and the 2020 report The Transition to Meaningful Activity for Childhood Cancer Survivors: Understanding the Role of The POGO School and Work Transitions Program.

POGO Childhood Cancer Data Informs New Cancer Statistics Reports

Posted on September 4, 2020 by Claire Slaughter

This year, POGO data will inform three Canadian cancer statistics reports—an important milestone in POGO’s efforts to monitor and publicly report on the impact of childhood cancer in Ontario, in alignment with one of the five goals of our Childhood Cancer Care Plan 2018-2023.

Later in September, for Childhood Cancer Awareness Month, POGO will release Childhood Cancer in Ontario: The 2020 POGO Surveillance Report, an update of our comprehensive and detailed provincial childhood cancer surveillance statistics. This report continues to confirm that Ontario’s childhood cancer survival rates are among the highest in the world and that all types of childhood cancer are rare (less than 6 per 100,000 children per year). It also provides information about the number of Ontarians each year who were diagnosed with cancer as children (prevalence). In addition to updating the data and trends, new details about cancer subtypes and age groups have been added.

August 2020 marked the first-ever inclusion of childhood cancer statistics, generated based on analyses by POGO from data in POGONIS (POGO’s childhood cancer database), in the Ontario Cancer Statistics report, which was released by Ontario Health (Cancer Care Ontario). This report provides a comprehensive summary of the burden of cancer in Ontario residents of all ages and helps to answer vital questions such as: What types of cancer occur in children in Ontario as compared to adults? How does childhood cancer, mortality and survival compare to adult cancers?

In addition, POGO continues to collaborate with the Public Health Agency of Canada by providing timely and high-quality childhood cancer data from POGONIS to populate the Canadian childhood cancer surveillance database, Cancer in Young People in Canada (CYP-C). This ensures that the Ontario childhood cancer population data is included in national reports, such as the CYP-C Data Tool, to yield key information, such as how childhood cancer incidence in Ontario compares with other provinces/territories and Canada overall.

POGO ensures that the latest, high-quality childhood cancer data from POGONIS is available to generate childhood cancer statistics for use by healthcare professionals, researchers, system and program planners, and policy- and decision-makers to help drive an effective childhood cancer care system. By working in partnership with organizations like Ontario Health (Cancer Care Ontario) and the Public Health Agency of Canada, as well as with the hospitals that treat children with cancer in Ontario, to monitor and report on the burden of childhood cancer in the province, POGO aims to achieve the best childhood cancer care system for children, youth, their families and survivors in Ontario and beyond.

We hope you find these reports to be helpful references in your efforts to champion childhood cancer care!

POGO

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Author: Claire Slaughter