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Welcome new POGO Board Chair – James Scongack
Hon. Stephen Goudge and the Board of Pediatric Oncology Group of Ontario (POGO) are pleased to announce James Scongack as the new Chair of the POGO Board of Directors.
For a number of years, James and his wife, Jenny, have been actively involved on several fronts to further POGO’s mission. They have provided advice, raised awareness and secured support from many community champions of childhood cancer care. James will continue to serve as Chair of the POGO Development Cabinet, a volunteer advisory committee supporting POGO’s fundraising and outreach goals and strategies. He is also an advocate within Canada’s cancer care space, as a longtime and ongoing supporter of the Brain Tumour Foundation of Canada and as Chair of the Canadian Nuclear Isotope Council. He also serves on the Board of Directors of LifeLabs.
Outside of his volunteer work, James is currently the Chief Development Officer and Executive Vice-President of Operational Services at Bruce Power and has been recognized as one of Canada’s Top 40 under 40®.
“I’m honoured to continue my volunteer involvement with POGO working with my Board colleagues, a strong management team, committed volunteers, families and passionate care providers to ensure we do everything we can to support children, youth, survivors and their families who are impacted by cancer,” says James. “POGO has made a profound difference to my family and many others across the province and I want to recognize the Hon. Stephen Goudge for his leadership as POGO Board Chair, and Dr. Mark Greenberg, one of POGO’s founders, who treated my wife when she was diagnosed with cancer at the age of two. I also thank the countless others who built this great, internationally recognized organization that is so important to so many families. Under the leadership of Jill Ross as Chief Executive Officer and Dr. David Hodgson as Medical Director, we will all continue to build on the POGO success story.”
As POGO welcomes James, the Board and organization also thank Hon. Stephen Goudge for seven years of remarkable leadership. We are extremely grateful for Stephen’s guidance through the completion of our fifth Childhood Cancer Care Plan in 2018, a new strategic organizational plan in 2019 and his support of our important work in diversity, equity and inclusion. In handing the reins to James, Stephen says, “I am delighted that James will be taking over as Chair. I have every confidence in James, whose ability to build consensus will serve POGO well in the years to come. His commitment has been unwavering, his business acumen extraordinary and his vision strongly aligns with the organization’s goals.”
Please join us in welcoming James and thanking Stephen!
A Search for Health Care beyond Survival: Rabi’s Story
My name is Rabi Qureshi. I am 33 years old and I am a three-time cancer survivor who feels as though I’ve fallen through the cracks.
I was 15 when I was diagnosed and treated for thyroid cancer. By all accounts, my life should have returned to normal. Instead, I gained 40 pounds in just two months, developed cystic acne and my grades plummeted.
At 21, I finally lost the weight but was still struggling with depression when the thyroid cancer came back. It had spread to my lymph nodes. The surgeries that followed left me with chronic pain in my head and neck that had me stuck in bed for the better part of three years, contemplating suicide daily. I promise that is not an exaggeration.
Rewiring my Brain Came Years after Treatment
By 2012, at 24 years old, I was feeling better. Nearly all the weight was gone. I had found a new passion and returned to college to pursue my dream of becoming an events specialist. And though everything seemed to take triple the effort or more than it used to, life seemed livable again. So I ignored the small bump under my skin that was slowly getting harder and bigger, and delayed the biopsy until the summer of 2013. What caught me off guard was that this time it was breast cancer. After five surgeries and some aggressive chemotherapy, I felt like a fraction of the person I once was. Mostly, I was living in a haze of foggy thoughts and fractured logic. It took several years out of treatment for me to rewire my brain so that I could articulate my thoughts and speak my mind confidently.
I can’t summarize all that cancer took from me, but I can tell you peace of mind was definitely among the body count. Turns out PTSD among cancer survivors is a more common issue than it is common knowledge.
It’s 2021 and I have a very limited number of functional hours in the week. I am still struggling to take care of my body and brain. I have been ping-ponged from one doctor to another who seem not to know what programs, resources and next steps are available. I work hard every day to teach myself ways of healing on my own but I can’t help but feel that the system is fractured and I am the collateral damage; I don’t believe I should have had to face this alone.
Up to this point, I experienced a severe disconnect between programs and services and my healthcare specialists. I believe the result is an unassembled Mr. Potato Head model and that interdisciplinary coordination and cooperation among fields of medicine should be at the centre of a more efficient patient care model.
Discovering POGO AfterCare
I recently spoke about my health struggles and lack of support from the healthcare system at the 2021 POGO AfterCare Education Day. I was encouraged by how receptive the doctors, nurses and psychologists were to what I had to say and how supportive everyone was. A friend of mine, another survivor who also spoke at the POGO event, convinced me to make an appointment at the POGO AfterCare Clinic in Toronto, something I had only recently become aware of and had yet to explore. It has only been a couple of weeks since that first intake call, but already there seems to be a plan in place for an integrated approach to treating the variety of issues that my cancers have left me with; I will have to keep you posted. I am cautiously optimistic, in spite of myself.
Modern Health Care Should Aim for Quality of Life
Class, ability, gender, a safe home, pre-existing conditions and race/culture can all contribute to unique challenges in survivorship. My story, only one of many, is evidence that it is more important than ever to create holistic systems designed with compassion at their roots, as a complete and comprehensive patient care model, systems that take the whole person into account—mind, body and circumstance. Modern health care, after all, shouldn’t stop at quantity of life; it’s well past time to prioritize quality of life.
Access to primary care in a shared-care model with AfterCare is critical for survivors
Rabi Qureshi is an author, advocate and three-time cancer survivor. She is also a special events manager and an artist who is outspoken in matters of mental health care and holistic and preventative medicine.
POGO AfterCare Clinics promote health and health education, and monitor survivors regularly for late effects of cancer treatment, identifying these effects as early as possible. Ultimately, POGO AfterCare Clinics contribute to advances in cancer care; if a particular form of treatment is found to cause a certain long-term effect in cancer survivors, current treatment practices can be modified, ultimately improving outcomes of future survivors.
It’s a Privilege to Care for a Child with Cancer
Denise Mills, MN, NP Pediatrics
My introduction to POGO started 20+ years ago when I attended my first POGO Symposium. Back then, I craved learning more about pediatric oncology, and there were many POGO educational opportunities from which I could choose.
So, one day (and I am not sure of the exact details of how this happened), I found myself in a car with Dr. Mark Greenberg, a founding member of POGO, Corin Greenberg, POGO’s Executive Director at the time, and another staff nurse. We were on our way to the CBC to participate in an interview about childhood cancer awareness. They wanted a novice nurse’s side of the story along with Mark’s expert thoughts.
I was so nervous. Then came THE question.
“How can you work in pediatric oncology when it is such hard work?”
All of us who work in pediatric oncology either dread or welcome this question. It can be a conversation stopper or it can lead to an opportunity to educate the public about this important cause.
“It is a privilege to care for a child with cancer,” I remember saying.
At the time, I actually thought that I understood what it meant to do this work and I probably did to an extent.
I continued along in my nursing career gaining more knowledge and expertise. I felt good about my practice; I understood my purpose.
Fast forward to six years ago, nearly 15 years after that CBC interview. I found myself caring for my mom in a hospice. I spent hours there watching the healthcare providers at work, wondering, how do they do this?
One day, I was talking with a nurse.
“What kind of nursing do you do?” she asked.
“Pediatric oncology 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.”
Finding Strength by Embracing my Vulnerability
Dealing with trauma, anxiety and depression as a two-time leukemia survivor, Marell Tomeh shares her story
When I was 19, I was starting to make decisions about where my life would take me. I was planning a trip with friends, working hard at university and thinking long-term about my aspirations. This came to a sudden halt the moment I was diagnosed with acute lymphoblastic leukemia.
I cancelled my trip, but didn’t want to burden my friends with my bad news. I had always been the one to support other people, rarely asking for help myself. To protect my vulnerability and preserve some sense of normalcy, I kept my diagnosis private, and in retrospect, this is probably the worst thing I could have done.
I spent much of the next two years of my treatment worrying about who knew what, and about people seeing me without hair and potentially judging my significant weight gain, not knowing the steroids I was taking contributed to this. The medication caused my mood to fluctuate, making my mental health harder to manage. I had trouble managing my expectations of myself, comparing myself to my peers and feeling a sense of urgency to “catch up.”
I fell into a deep depression and it took some time to acknowledge it and admit that I was struggling. I became more and more anxious in public and social settings. I developed a stutter and felt as though I had lost my sense of humour and ability to engage in conversation. Socializing became awkward and uncomfortable, and schoolwork became frustrating.
A few years after my treatment ended, I relapsed. This time, I needed a bone marrow donor and had no choice but to open up about my cancer. This made a huge difference in my mental health and my healing. I stopped seeing vulnerability as a weakness and, as a result, quit being so afraid.
A cancer diagnosis interrupts life. As a young adult with cancer I feel like my life milestones have been pushed back and I am falling further behind all of my peers. Before my diagnosis, I took pride in knowing I worked well under pressure and could multitask with ease. I thought getting back to school would help me get back to ”normal,” but I am still struggling with “chemo brain’” and dealing with the repercussions—mental and physical—that come with cancer, and find it all too stressful and overwhelming.
Surviving Childhood Cancer: From Confidence Buster to Confidence Builder
After going through something as traumatic as cancer, my stress response has become more sensitive. So, I have decided to take some time away from school and work to care for myself. I am re-examining my priorities and figuring out how to build a meaningful life that can also support my real-world concerns, like finding health coverage for my ongoing medical expenses.
My goal is to use my cancer experience to help other people. I want to create a safe space for other patients and survivors to express themselves and support their healing. Nothing good comes from leaving your wounds unattended but we can find strength in acknowledging and embracing them.
Marell Tomeh is a two-time leukemia survivor and bone marrow transplant recipient. As a young adult cancer survivor, Marell shares her story and hopes to shed light on the obstacles associated with trauma, anxiety and depression.
Marell shared her story first-hand on May 14 at 2021 POGO AfterCare Education Day, where she spoke about The Lived Experience: Navigating School and Work after Cancer.
Virtual Counselling to Help Childhood Cancer Survivors
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.