RURAL REACH 5 ways your donation helps
4 healthy oils to include in your diet
Improve your health through dance
LEADING THE WAY DR. DANIEL HENG IS COMMITTED TO TURNING CALGARY INTO A HOT SPOT FOR CLINICAL TRIALS AND RESEARCH
THE INSIDER ISSUE
HOW TO DEAL WITH CANCERRELATED SLEEP ISSUES
RECORD KEEPING PM 40030911
A NEW APP IS EMPOWERING PATIENTS ACROSS ALBERTA
38 RESEARCH ROCKSTAR Dr. Michael Monument and his team are working to develop new, more effective therapies for sarcoma patients. 42 TRUE CALLING As the newly appointed medical lead for the Tom Baker Cancer Centre’s Clinical Research Unit, Dr. Daniel Heng is focused on growing clinical trials and cancer research in Calgary.
20 THE INSIDER ISSUE We bring you a behind-the-scenes look at the work that goes into creating some of the Alberta Cancer Foundation’s most important initiatives — and the positive outcomes that result. COLUMNS/DEPARTMENTS Bellerose Bike-A-Thon in St. Albert brings high school students together for a cause, scientists are using artificial intelligence applications in their cancer research, and more.
7 FRONT LINE Dr. Chris Venner is helping to expand the study and treatment of multiple myeloma, the COVER: PHOTO COLIN WAY THIS PAGE: CURTIS TRENT
13 YOUR DONATION MATTERS Five ways your donations to the Alberta Cancer Foundation help rural Albertans who are facing cancer.
14 FOOD FOCUS Four healthy oils to include in your diet — and how to make the most of their benefits. 16 WORKOUT Why dancing is great for your mind, body and overall sense of well-being. 18 EXPERT ADVICE Dealing with cancer-related sleep problems and telling your kids about a cancer diagnosis.
32 CARING The Hereditary Cancer Clinic team in Calgary is dedicated to helping Albertans who carry genes linked to certain cancers. 35 LIVING WELL A new smartphone app and a special program just for kids are two initiatives that are bringing an added sense of comfort and security to patients and families dealing with cancer.
46 IMPACT Cancer patient Anabell Marroquin shares her personal experience dealing with acute lymphoblastic leukemia. 47 WHY I DONATE Bill Yuill and the Yuill Family Foundation are long-time supporters of cancer care in Medicine Hat. 49 MY LEAP For the last three years, country band The Dungarees have held an epic, 24-hour gig to raise funds for the Alberta Cancer Foundation. 50 GAME CHANGER When it comes to supporting the Enbridge Ride to Conquer Cancer, employees at National Oilwell Varco pull out all the stops.
myleapmagazine.ca WINTER 2019 LEAP 3
Leigh-Anne Palter (Chair) Rene Aldana Dr. Stanford Blade Dr. Heather Bryant Nancy Guebert Robert (Bob) McGee Andrea McManus Dr. Matthew Parliament Gelaine Pearman Jamie Pytel (Vice Chair) Rory J. Tyler
NEVER MISS AN ISSUITE! VIS
a/leap/ albertacancer.c n tio ip cr bs su leap
4 LEAP WINTER 2019
Sharing Stories A very happy New Year to all of our Leap readers. The theme for this issue of Leap takes you on an insider look at the Alberta Cancer Foundation. If you have ever wondered how some of the Foundation’s biggest fundraising events come together, or how we determine some of our investment priorities, we give you a backstage pass to all the insider information. You’ll see highlights on a year in the making of the Enbridge Ride to Conquer Cancer, and a unique behind-the-scenes look at the Cash and Cars Lottery. We are also proud to feature one of our own, Jane Weller, who during her 30-year career at the Cross Cancer Institute set a high standard for donor relationships while working with staff and volunteers at We are so grateful the centre. Her overall passion for our cause has left a to our donors and lasting legacy. health-care partners We’re also privileged to feature the incredible work for the difference taking place across the province by our partners in they make in the CancerControl Alberta. You will see our ‘True Calling’ lives of Albertans feature on Dr. Daniel Heng (pg. 42) — the newest medical lead for the Tom Baker Cancer Centre’s clinical research facing cancer. unit in Calgary. Dr. Heng’s commitment to improving patient care and leading a team that is helping to discover some of the latest and greatest treatment options for Albertans is truly inspiring. In this issue we also feature dedicated philanthropists from across the province — including Bill Yuill and the Yuill Family Foundation (pg. 47). Their ongoing support for the community of Medicine Hat, specifically at the Margery E. Yuill Cancer Centre, has contributed to an enhanced treatment and care experience for patients across Southern Alberta. We feel honoured to share Albertans’ stories in this magazine, and we are so grateful to our donors and health-care partners for the difference they make in the lives of Albertans facing cancer. We hope 2019 brings you much joy, love and good health. Your friends at the Alberta Cancer Foundation
ALBERTA CANCER FOUNDATION EDITORS
Phoebe Dey and Christiane Gauthier
EDITORIAL DIRECTOR Jill Foran ART DIRECTOR Kim Larson STAFF PHOTOGRAPHER Jared Sych CONTRIBUTORS Wes Bell, Andrew Benson, Colleen Biondi, Breanne Beckie, Tina Chang, Elizabeth ChorneyBooth, Caitlin Crawshaw, Jennifer Dorozio, Spencer Flock, Christina Frangou, Jennifer Friesen, Glenn Harvey, Victoria Lessard, Jennifer Madole, Ryan Parker, Silvia Pikal, Pete Ryan, Emily Senger, Paul Swanson, Curtis Trent, Colin Way, Julia Williams PUBLISHED FOR
Alberta Cancer Foundation Calgary office Suite 300, 1620 29 St. N.W. Calgary, Alberta T2N 4L7
710, 10123 99 St. N.W. Edmonton, Alberta T5J 3H1 Tel: 780-643-4400 Toll free: 1-866-412-4222 firstname.lastname@example.org
Redpoint Media & Marketing Solutions 100, 1900 11 St. S.E. Calgary, Alberta T2G 3G2 Phone: 403-240-9055 Toll free: 1-877-963-9333 Fax: 403-240-9059 email@example.com PM 40030911 Return undeliverable Canadian addresses to the Edmonton address above.
PRESIDENT & CEO Pete Graves GROUP PUBLISHER Joyce Byrne CLIENT RELATIONS MANAGER Natalie Morrison PRODUCTION MANAGER Mike Matovich AUDIENCE DEVELOPMENT MANAGER Rob Kelly
myleapmagazine.ca WINTER 2019 LEAP 5
FRONT ANTARCTIC ADVENTURES | BELLEROSE BIKE-A-THON | THE AGE OF AI
Dr. Chris Venner is playing a vital role in furthering the study and treatment of multiple myeloma in Alberta and beyond
r. Chris Venner has seen vast improvements in treatments for people diagnosed with multiple myeloma since he started his career as a hematologist just seven years ago. In that time, a multitude of new drugs have been approved for treatment of the incurable bone marrow cancer, and patients can live with the disease for 10 years and beyond, compared with two to four years previously. “It is an exciting field to work in,” says Venner, the malignant hematology tumour group lead at the Cross Cancer Institute in Edmonton. “Our understanding of multiple myeloma is expanding.” > DR. VENNER HAS BUILT A POWERFUL DATABASE FOR ONCOLOGISTS
PHOTOS TINA CHANG
myleapmagazine.ca WINTER 2019 LEAP 7
BASED AT THE CROSS CANCER INSTITUTE, DR. VENNER IS NOW LEADING A NATIONAL DATABASE INITIATIVE
However, there is still a long way to go when it comes to comprehending and treating the disease, and Venner hopes the power of big data (the term for extremely large data sets) can help get us there. Myeloma is a cancer of the plasma cells in the bone marrow and can cause anemia, high calcium, kidney failure and bone disease. Around 2,900 new patients are diagnosed in Canada each year. Myeloma is managed like a chronic disease, and patients could be treated with several different chemotherapy drugs 8 LEAP WINTER 2019
during their cancer journey. Stem cell transplants are also an option for some. Since there isn’t one standard treatment course, doctors need to know what has worked best for other patients to inform their decisions. But when Venner joined the team at the Cross in 2012, he realized that multiple myeloma doctors and researchers in Alberta weren’t sharing information as well as they could be. “While we collected the data, it wasn’t housed in a very user-friendly and disease-specific way,” Venner recalls.
There was no Canadian “big data” to consult. Without a provincial or national database, health-care professionals relied on information from other countries. Venner had experience in clinical data tracking from fellowships in the United Kingdom and British Columbia and, in January 2013, he started the Alberta Multiple Myeloma and Plasma Cell Dyscrasia Database, with funding from the Alberta Cancer Foundation. The Alberta project was successful enough that Venner was chosen to chair a national
database initiative, through the Myeloma Canada Research Network, which launched in 2016. “We now have this unified platform to better assess how we are doing with this disease in Canada, and also to inform where we want to go,” says Venner. Today, the MCRN Canadian Multiple Myeloma Database contains anonymized data from approximately 4,500 patients, with legacy data going back 10 years and information from newly diagnosed patients added continuously. Thirteen cancer centres across the country are participating, from Vancouver to Halifax. Clinicians input patient demographics, as well as treatment plans, any adverse effects of treatment, and outcomes. Venner believes information from the database will allow doctors to better assess the effectiveness of new treatments. It could also help determine where to go next with research. “Knowing how well we are doing currently, and what we are doing, helps us position ourselves when we think about new clinical trials,” he says. Venner hopes clinicians will add information from up to 10,000 additional patients to the database over the next 10 years, with the end goal of continuing improvements in patient care. There’s also a chance that, somewhere in the data from thousands of patients, is the information researchers need to find a cure. “We still do have a lot of work to do,” says Venner. “It’s humbling to know that, despite advances, we’re still not curing anybody. There’s still a lot of great effort being made into trying to crack that nut.” LEAP — EMILY SENGER
LAVAL ST. GERMAIN FACED DAUNTING CHALLENGES DURING HIS LATEST FUNDRAISING ADVENTURE
An Extreme Endeavour Adventurer Laval St. Germain has just returned from an epic expedition to Antarctica to raise funds for the Alberta Cancer Foundation IN WHAT HE CALLS “UNFINISHED
business,” Laval St. Germain recently tested his body and spirit again while raising money for the Alberta Cancer Foundation. In 2016, the extreme adventurer braved the Atlantic Ocean by rowing from Halifax to France in support of cancer patients — and, late last year, he embarked on a second fundraising mission, this time to Antarctica, where he set out to ski to the South Pole solo and then climb Mount Vinson, the continent’s highest peak at 4,892 metres. St. Germain kicked off the skiing journey on November 25, travelling from the edge of Antarctica at Hercules Inlet toward the South Pole. Unfortunately, due to gear issues out of his control, he made the difficult choice to abandon the ski-solo mission 13 days in, and instead went on to climb Vinson and a second mountain, Mount Shinn — Antarctica’s third highest peak — the next day.
“[I felt] disappointment, anger and frustration [during the ski mission],” says St. Germain. “But I realize that when you play in the arena of expeditions and adventure sports you will inevitably have to face failures and keep moving forward without dwelling on past failures.” With the intention of raising funds in support of Calgary’sTom Baker Cancer Centre and Edmonton’s Cross Cancer Institute, St. Germain carried out this particular polar expedition in honour of his friends and family who have faced the disease. His previous fundraising adventure across the Atlantic was inspired by the loss of his father-in-law to cancer, as well as the cancer diagnosis of a close friend. Since then, he’s had two more close friends face the diagnosis, and another who lost his battle to the disease — prime motivation for St. Germain to raise funds and awareness once again.
“It’s just more inspiration to help,” he says. “It really hit everyone hard.” For St. Germain, mastering the multiday climb to the top of Mount Vinson completed a personal journey years in the making. This summit marked his seventh and final climb of each of the seven continents’ tallest mountains — an achievement known as the “Seven Summits,” and one that puts him in esteemed company among extreme adventurers. Always directing his gaze forward, he says he’s not finished with his quest to bring attention and funding to cancer research. “Awareness is not enough. I’ll keep doing whatever I can to help the Foundation in the future,” says St. Germain. “Bottom line: we need more money for more research, more clinical trials and more hope for Alberta cancer patients and their families.” LEAP — JENNIFER FRIESEN
myleapmagazine.ca WINTER 2019 LEAP 9
Pedal Power Students at Bellerose Composite High School have pedalled the globe approximately 17 times in their quest to raise money for a cure EACH YEAR, ON THE FIRST WEDNESDAY
in March, a plaid-clad bagpiper leads a steady stream of excited students into the cafeteria of Bellerose Composite High School, where posters with catchy team names hang above and stationary bikes sit 10 LEAP WINTER 2019
in waiting. This annual scene is all a part of the official opening ceremony for Belleroseâ€™s annual 48-hour Bike-A-Thon. The biggest event of the year at the St. Albert school, the Bike-A-Thon brings students and faculty together to raise
THE BELLEROSE BIKE-A-THON IS A BELOVED ANNUAL EVENT IN ST. ALBERT
money for cancer research and care. Students sign up in January as teams of 10 to 12, and each team must raise a minimum of $1,500 to take part. They fundraise through bottle drives, bake sales and selling homemade items like badges in front of local grocery stores. They also ask for pledges, creating their own pledge pages through the Alberta Cancer Foundation website. Then, during the event itself, students ride for 48 hours on those
stationary bikes in the cafeteria, taking one-hour shifts among team members. The determined bikers are kept entertained by live bands, movies, competitions and even a hypnotist. The Bike-A-Thon began in 2004 and was kickstarted by Sue Leighton — a social studies teacher at Bellerose and the event’s coordinator — as well as her teaching partner, Dawn Rothwell, and five other staff members. Leighton and Rothwell had joined a Cops for Cancer triathlon team and were brainstorming ways to raise money. Inspired by a bike-a-thon fundraiser they’d heard about at another organization, they decided to take the idea to the school — and a legacy was born. Bellerose’s very first Bike-A-Thon had 10 teams (approximately 90 students) participating. Now, there are around 850 students and staff who take part each year. “The excitement is unbelievable,” says Leighton. “It changes the school climate after the Bike-A-Thon because people have biked for 48 hours, cried during 48 hours and [it] has completely made a difference in how they behave.”
Since the event’s launch in 2004, the students of Bellerose have peddled enough kilometres to travel approximately 17 times around the globe, and have raised more than $2.4 million for cancer research, with the majority of these funds being directed toward the Alberta Cancer Foundation in support of the Cross Cancer Institute. These funds have allowed the Cross Cancer Institute to not only deliver specialized care to those facing cancer, but also to continually push the pace of discovery with cutting-edge technologies and research that provide real-life returns for Albertans. “The Bellerose Bike-A-Thon is an excellent example of what the community can do with the right amount of planning and the right people backing the idea,” says Melanie Dekker, director of community relations with the Alberta Cancer Foundation. “For it to be a school is even cooler because [of] all these young people who are learning about what it means to make a difference.” LEAP — VICTORIA LESSARD
The 2019 Bellerose Bike-A-Thon will take place from March 6 to 8. myleapmagazine.ca WINTER 2019 LEAP 11
the globe are starting to take advantage of the real-world potential available in this swift analysis of large amounts of medical information. Several examples of this can be found in London, England. There, an AI research company
Jikei University Hospital. Each partner will provide results from around 30,000 mammograms (with all personal information removed) to research the possibility of using AI to screen potential breast cancer diagnoses, with the aim of
AI can analyze and segment scans as accurately — and much more quickly — than radiologists can.
Embracing Artificial Intelligence Scientists are researching AI applications to improve diagnosis and treatment in cancer care MORE AND MORE THESE
days, artificial intelligence (AI) applications are being embraced by organizations in a variety of sectors — and the cancer care industry is no exception. AI is the simulation of human intelligence and decision-making by computers.
“Machine learning” and “deep learning” are two subsets of AI that are often used in health care research. Each involves inputting a large amount of data into a computer. The AI analyzes this data and applies what it has learned to new data. Medical researchers around
called DeepMind (a subsidiary of Google) has partnered with the radiotherapy department at University College London Hospitals NHS Foundation Trust to develop and test the use of AI in segmenting and analyzing medical images, such as CT scans, to help head and neck cancer patients undergo faster treatments. Initial findings, published in September 2018, confirmed that AI can analyze and segment scans as accurately — and much more quickly — than experienced radiologists can. Now, researchers are moving on to the next stage of testing, which involves assessing the AI’s performance in a clinical environment. DeepMind is also involved in another cancer research project, in conjunction with London’s Cancer Research UK Imperial Centre and Tokyo’s
reducing missed or inaccurate findings in mammograms. Another advance using AI has been developed by scientists at The Institute of Cancer Research, London and the University of Edinburgh. REVOLVER (Repeated evolution of cancer) analyzes vast amounts of data on DNA mutations and its patterns to help predict the behaviour and development of tumours. The hope is that it will allow doctors to create treatment plans for patients with new levels of precision, including the ability to predict future resistance to treatment or a change in tumours. With the potential for faster diagnosis, more targeted and precise treatments and reduced data work for health care workers, the benefits of AI promise to be deeply felt in the future. LEAP — VICTORIA LESSARD
IT IS PREDICTED THAT THE NEXT FIVE YEARS WILL BRING MORE ADVANCEMENTS IN ARTIFICIAL INTELLIGENCE THAN THE LAST 30 YEARS COMBINED. ILLUSTRATION BREANNE BECKIE
12 LEAP WINTER 2019
Your donation to the Alberta Cancer Foundation helps rural Albertans facing cancer No matter where a patient faces a cancer diagnosis, the Alberta Cancer Foundation is committed to helping ensure that all Albertans receive access to the best treatment and care available. Here are a few examples of how your donation can make life better for rural Albertans facing cancer.
For most head and neck cancer patients, treatment can diminish the ability to swallow and rehabilitation therapy is only available at specialized clinics. The Mobili-T is a portable device that will be able to provide therapy at home, so patients donâ€™t have to travel. Developers are currently conducting feasibility studies.
COMMUNITY ONCOLOGY CLINICAL TRIALS
Clinical trials are the engines that drive life-saving treatment. This community based program allows rural patients to participate in groundbreaking research closer to home.
PUTTING PATIENTS FIRST PROGRAM PATIENT FINANCIAL ASSISTANCE PROGRAM (PFAP)
No patient should have to choose between groceries or treatment options during their cancer journey. PFAP provides rural patients with access to financial support when they need it most.
Learn more about how you can support the Alberta Cancer Foundation at albertacancer.ca
Rural patients are provided with a screening questionnaire that addresses the stress that often accompanies a cancer diagnosis. Once responses are gathered, front-line staff members will work with patients to mitigate the causes of distress.
PATIENT NAVIGATOR PROGRAM
Alberta Cancer Foundation patient navigators are located at 14 cancer centres throughout the province, and help to ease the complexities of a cancer diagnosis by providing person-centred care to rural patients.
One third of Albertaâ€™s cancer patients receive care in centres outside of Calgary and Edmonton. myleapmagazine.ca WINTER 2019 LEAP 13
Healthy Oils OUR BODIES NEED HEALTHY SOURCES
of fat to function properly — namely, the kind of fats that are often found in vegetable oils. A few daily tablespoons of plant-based oils used in dressings or in various cooking methods can help our bodies better absorb nutrients from other food, sustain normal hormone production, protect against heart disease and contribute to good overall health. When choosing an oil, Katie Keller, a dietitian with the Tom Baker Cancer Centre in Calgary, recommends that those undergoing cancer treatment opt for whichever is the most palatable. But, she says, the general population should look for oils that are liquid at room temperature, signifying a greater percentage of healthy, unsaturated fat. These four oils can be particularly useful for everyday meals: EXTRA-VIRGIN OLIVE OIL
The “extra-virgin” in this well-known oil refers to the processing method: unlike a refined olive oil, the extra-virgin version is cold-pressed and not treated with heat or chemicals, leaving all of its natural nutrients intact. The cold-press process also helps the oil to retain its distinctive fruity taste, which makes it ideal for salad dressings and as a dip for bread — unlike some oils, extra-virgin olive oil actually tastes like something. Olive oil’s smoke point (the temperature where it starts to burn) is lower than some oils, meaning it can lose nutrients if it gets too hot, but according to Keller, it’s perfectly fine to use in a home kitchen for stove-top cooking. “It’s a multi-purpose oil,” Keller says. “Which is great, because you don’t have to go out and buy several different oils for different purposes.” AVOCADO OIL
Although it’s less familiar than olive oil to most people, avocado oil is becoming increasingly available in grocery stores, both as a spray and in regular pour bottles. Like extra-virgin olive oil, avocado oil is made 14 LEAP WINTER 2019
with a cold-press process, which means its nutrients aren’t compromised during processing. It differs from olive oil, however, in its flavour — avocado oil has almost no taste, meaning it won’t overpower other foods, whether it’s being used raw in a salad dressing or as a cooking oil. It also has a higher heat tolerance than olive oil, making it appropriate for an even wider variety of cooking tasks. “It actually has the highest heat tolerance of most other oils,” Keller says. “You can use it in frying, in barbecuing as a marinade or as a replacement for butter in baking and it will still retain its nutrients.” FLAXSEED OIL
When it comes to commonly available oils, flaxseed is one of the most nutritious. It’s a great source of omega-3 fatty acids, making it beneficial for heart, brain and eye health, and is also a source of antioxidants as well as lignans and isoflavones, which are phytoestrogens that researchers believe can have a protective effect against cancer. The downside to flaxseed oil is that it is far more delicate than most other culinary oils. It is not shelf stable and must be stored in the refrigerator. It’s also not suitable for cooking — any heat will
destroy its nutritional properties. It does, however, have a distinctive nutty taste that adds flavour to food as well as those health benefits. “You really just need to eat it raw,” Keller says. “It can be used in a salad dressing or a condiment.” CANOLA OIL
Canola oil often gets a bad rap: most canola oil sold in Alberta is certified as a GMO (Genetically Modified Organism), which leads many consumers to believe that it’s an inferior oil. But Keller says that people shouldn’t be scared off of canola, as its one modified protein is destroyed during processing, making GMO and non-GMO canola oil virtually identical. Nutritionally speaking, canola oil contains fewer essential fatty acids than olive oil, but it does have a lower percentage of saturated fat than most edible oils. Plus, it has a mild taste and a high smoke point, making it ideal for all kinds of cooking. “When I’m baking, canola is what I replace my butter with,” Keller says. “It leaves the finished product nice and moist.” LEAP — ELIZABETH CHORNEY-BOOTH
Nutty Slow-Cooker Granola The ingredients in this wholesome granola are tossed with canola or avocado oil so that the oats get crunchy as they cook. Feel free to use a different mix of nuts and seeds for an endless variety of flavour combinations. INGREDIENTS 5 cups large-flake rolled oats 1 cup shelled pumpkin seeds 1 cup pecan pieces 1 cup unsweetened coconut 2 /3 cup whole almonds, roughly chopped 1 cup dried cherries 3 /4 cup honey 3 /4 cup canola or avocado oil 1 tbsp vanilla extract 1 tsp salt 1 /2 tsp cinnamon non-stick canola or avocado cooking spray
LOADED WITH HEALTHY FATS!
DIRECTIONS Combine the oats, pumpkin seeds, pecans, coconut and almonds in a large bowl. In a smaller bowl, whisk together the honey, canola or avocado oil, vanilla extract, salt and cinnamon until evenly combined. Pour the honey mixture over the oat mixture and stir until the dry ingredients are evenly coated. Spray the bowl of a 4- to 6-quart slow cooker with non-stick cooking spray and pour in the oat mixture. Cook for 30 to 60 minutes on high with the lid on, or until the granola is warmed throughout. Remove the lid and cook for another 1 to 1-1/2 hours or until the granola is lightly browned, stirring regularly so that everything cooks evenly. Stir in the dried cherries, then spread evenly on two parchment-lined baking sheets. Let cool completely and then store in airtight containers for up to two weeks.
EXTRA-VIRGIN OLIVE OIL IS LOADED WITH HEALTHY FATS
myleapmagazine.ca WINTER 2019 LEAP 15
Dancing for Health Tap, swing and sway your way to health with rhythmic-focused dance classes by JENNIFER DOROZIO DANCING TO THE BEAT IN A WORKOUT
or dance class is definitely fun, but it’s also good for your mind, body and emotional well-being. From a Latin American-inspired rhythmic movement class at a local gym to a 40-minute-long workout that incorporates a ballet barre, there are rhythmic-move-
ment-style classes for everyone — even for people who grapple with an oftendebilitating illness like cancer. “When you’re physically active and moving your body [in dance], you’re expending energy, and that’s helpful for all of the systems of the body,” says Sarah Kenny, assistant professor in the faculties
of Kinesiology and Art (dance) at the University of Calgary. Participating in exercise classes regularly, such as dance, can help improve functional fitness, including the ability to engage more in daily life and maintain energy throughout the day, says Dr. Nicole Culos-Reed, professor, health and exercise psychology in the Faculty of Kinesiology and adjunct professor in the Department of Oncology in the Cumming School of Medicine at the University of Calgary. Dancing can help people feel happier and calmer. Many medical studies link fitness at varying levels, including dance, to a lessening of anxiety and depression, better sleep and improved stamina. “If you think about the social nature of dance, whether it’s done in a group or done with a partner, there are many benefits we see, especially around mental well-being,” says Culos-Reed. Dance-style fitness classes can introduce people to a more motivating and challenging fitness community instead of working out alone, she says. For cancer patients, the positive outcomes of participating in dance stack up, too. It’s a myth that engaging in fitness when going through cancer treatment is harmful. In fact, the opposite is true, says Culos-Reed. “It’s no longer the ‘Oh you’re sickly, we want you to sit and rest,’” she says. “We know when [cancer patients] rest, they de-condition, they feel worse overall about themselves. There’s a loss of control that often happens when it comes to a chronic disease like cancer.” ILLUSTRATIONS ANDREW BENSON
16 LEAP WINTER 2019
DANCE CAN BE AN IDEAL EXERCISE FOR PEOPLE WHO ARE ILL OR RECOVERING BECAUSE SPECIFIC MOVES CAN OFTEN BE MODIFIED TO SUIT A PARTICIPANT’S LEVEL OF FITNESS.
Now, cancer patients are encouraged to engage in a level of fitness they’re comfortable with. “Exercise during treatment can help alleviate some of the common side-effects during cancer treatment, things like fatigue and pain, as well as emotional well-being components,” says Culos-Reed. Dance can be an ideal exercise for people who are ill or recovering because specific moves can often be modified to suit a participant’s level of fitness. Barbara Cunnings, co-founder of Wellspring Calgary — a community resource centre offering programs and support for those touched by cancer — is 75 years old and teaches multiple weekly dance-based
movement classes designed for cancer patients. Cunnings, who is a classically trained dancer, had stage three non-hormonal cancer in the 1990s. Ten years after being declared cancer-free, Cunnings began leading classes in Calgary because she knew first-hand how being active can offer physical relief from treatment side-effects. Cunnings’s classes include Moves and Rhythm and Healthy Step, where students use chairs to both help with balance and sit down on if they need a break. “[I’ve seen] immense progress with my students, they all love it,” says Cunnings. “[The classes] help with their balance and
range of motion, and are really a good emotional relief for them.” Cunnings says many of her students also comment on improvement with their lymphedema — swelling in the body that can happen as a result of treatment. In addition, remembering steps also helps to alleviate “chemo brain” and general fogginess of the mind, and the classes (which usually consist of 10 to 15 students) tend to inspire a genuine sense of community among the participants. “It’s just plain fun,” says Cunnings. “I believe that you can surmount most anything if you’re willing to get out there and work.” LEAP
Dance & Rhythmic-Based Movement Classes to Try Get your heart pumping and body moving to the music with these diverse offerings DECIDEDLY JAZZ DANCEWORKS Calgary-based DJD holds jazz classes for beginners all the way to advanced dancers. decidedlyjazz.com
PULSE STUDIOS This Calgary spot offers adult drop-in sessions for both hip hop and breakdancing. pulsestudios.ca
EDMONTON SCHOOL OF BALLET Select from ballet, tap, jazz and modern-style adult classes at varying levels at this long-established dance academy. esbdance.com
J’ADORE DANCE West African Dance, contemporary, dancebased boot camp classes and more — this Edmonton-based dance studio offers a variety to try. jadoredance.ca
myleapmagazine.ca WINTER 2019 LEAP 17
We ask the experts for advice on sleeping better when facing cancer and telling your children about your cancer diagnosis. by JENNIFER DOROZIO
DR. AMANE ABDULRAZZAK
Q: What are some common sleep challenges that arise for cancer patients? The most common types of sleep issues would be in the insomnia camp, which may be experienced as difficulty falling asleep, waking up in the middle of the night and having difficulty falling back asleep, or waking up earlier than desired.
Q: Why do people who have cancer often encounter problems sleeping or resting?
SLEEPING AND CANCER For nearly half of people with cancer, falling asleep is an ongoing challenge. Dr. Amane Abdul-Razzak, medical director of the Intensive Palliative Care Unit at the Foothills Medical Centre and a palliative care consultant at the Tom Baker Cancer Centre, works with the Complex Cancer Management Service to help cancer patients with issues that affect their quality of life. Here, she touches on why cancer can cause sleep issues and what to do about it.
There are multiple reasons. Pain or other symptoms such as cough caused by cancer can interfere with sleep. In addition, mood issues such as depression or anxiety are common in patients with cancer and cancer-related fatigue — which is this overwhelming feeling of tiredness that doesn’t improve with rest. These can lead to daytime sleepiness and nighttime sleep disturbance. Lastly, medication, such as the hormonal therapies used in treating cancers, can cause hot flashes that lead to sleep disturbance. Steroid therapies, too, can cause high cortisol levels, which can interfere with sleep.
Q: What kind of help should patients seek when dealing with cancer-related sleep issues? Firstly, look at the underlying causes: are medications, pain or other symptoms such as cough or nausea triggering the issue? If mood is an underlying issue, a patient can ask their oncologist for a referral to a service that can help. Sleep medications may be helpful in the short term, but it’s best to treat the underlying depression and anxiety if these exist. Counselling is a key part of treating moods.
Q: What are some practical things a patient can do at home to improve sleep? Strategies could include avoiding stimulants like caffeine or nicotine close to bedtime, avoiding stimulating TV shows or bright screens like smartphones or computers, and avoiding clock-watching — all of which can cause a little bit more anxiety. There are meditations and white-noise apps that can help people as part of their relaxation, or relaxing music. Sometimes a fan in your room can help, too, as having a higher body temperature or hotter environment can interfere with sleep.
Q: Any final advice on bedtime routines to adopt or other tricks to try? Even simple things like earplugs and eye covers can help with stimulus control. And adopting a really relaxing bedtime routine, such as having a bath, reading a book or stretching, can help. ILLUSTRATIONS JENNIFER MADOLE
18 LEAP WINTER 2019
expected to go. If there’s an expectation that the child’s help may be enlisted with doing a few more chores and things like that, it’s a good idea to mention that then. DR. GUY PELLETIER
SHARING A CANCER DIAGNOSIS WITH A CHILD Dealing with a cancer diagnosis can be challenging enough without the added worry of how you’ll tell your kids. There is, however, a way to go about the conversation that can minimize familial distress and maximize reassurance, according to Dr. Guy Pelletier, a clinical psychologist in the department of psychosocial and rehabilitation oncology at the Tom Baker Cancer Centre. Here are some of his guidelines for navigating a cancer conversation as a family.
Q: How should you approach your child with the news of your cancer diagnosis? Progress the type of information [you share] depending on the age of a child. For children four and under, they don’t need to be getting a big story out of it. Just knowing that mom or dad is sick and that it’s nobody’s fault, that it can happen once in a while, and that the parent will be routinely going to the hospital — generally, that’s enough. [For kids] around Grade 1, you’re going to need to give more information. Using the word “cancer” starting at that age is wise. Around Grades 4 to 6, the child will need more specifics about the kinds of treatment and how long things may be
Q: And how should older kids be told? Teenagers 15 and older can be informed at an adult level. In fact, I’ve often recommended for the young person to be present at a medical meeting with the parents, because sometimes it’s better if they get the information themselves from a physician, in terms of what should be expected. If a young person doesn’t want to go, that’s understandable, but if they can go, it can be advantageous.
Q: Is it always best to use the word “cancer” when talking to your children about your illness? Many people are horrified at using the word cancer around children of any age. I tell them children hear about cancer all the time, or [at least] have heard the word already. It’s better for parents to start using the word cancer when it’s apparent that the child has a possibility to understand what the word might imply. I’ve seen many circumstances where there is a lot of clear evidence that a parent is quite unwell. Children will come up with the idea that their mother/father has cancer on their own. That’s why it’s better to approach the child directly — a child’s imagination is often much more cruel than the truth.
Q: Should you address the possibility of dying from cancer with your child? People are very afraid of what I would call “the big question.” Even at a young age, cancer is associated with death. It all depends on what type of disease and what type of situation the person is facing. If we’re talking about cancer that can be treated and may very well result in a cure, then parents can say something
like, “The doctors say the treatments are going to work and we hope that everything is going to be okay.” If the cancer is more aggressive, and the future is quite uncertain, I recommend saying, “We don’t know.” The message [to share] here is that the parent is going to do everything they can to get better.
Q: What kind of reaction should a parent expect after informing their child? When you talk to kids officially about your cancer, often the response of a younger child [under 10] might be something along the lines of, “Okay, can I go watch TV now?” Many parents find a reaction like that to be rather callous, like the kid doesn’t care. But actually, that’s the response you want. You want the child to hear what the situation is, to understand it as best as possible, and to be so sufficiently reassured that the next thing they want to do is go back to activities that are normal to them.
Q: What are some strategies for addressing a child’s fears while dealing with your own? One of the best things a patient can do is maintain routines as best as possible. Generally speaking, when the routines in the family are not changing very much, the children calm down. They tend to be less concerned, and they focus on their own lives and on their own activities, rather than worrying about the parent. Depending on the situation, a parent might also require some additional assistance. It’s very difficult on parents, and the atmosphere in the home can get increasingly tense. This is where you can reach out to a professional group like psychosocial oncology at the Tom Baker for help. LEAP Visit albertahealthservices.ca for more information on booking an appointment with the Psychosocial Oncology department. myleapmagazine.ca WINTER 2019 LEAP 19
LUCK OF THE DRAW
THE INSIDER ISSUE Have you ever wondered how the Alberta Cancer Foundation’s biggest fundraising events come together, how the Foundation determines where to allocate funds, or how new programs and initiatives are devised? Over the next 12 pages, we bring you behind the scenes, sharing insights, stories and insider information about some of the work that happens — thanks to the generous support of donors. >
20 LEAP WINTER 2019
It takes a great deal of work to put the Cash and Cars Lottery together every year, but the inspiring results are absolutely worth the effort by ELIZABETH CHORNEY-BOOTH illustration PETE RYAN Most Albertans have heard of the Alberta Cancer Foundation’s Cash and Cars Lottery. It’s one of the Foundation’s most heavily promoted fundraisers for good reason: since launching almost 20 years ago, Cash and Cars has raised more than $30 million that’s gone directly to supporting cancer research, treatment and care at the 17 Alberta Health Services cancer centres including the Tom Baker Cancer Centre in Calgary and the Cross Cancer Institute in Edmonton. Every year, a team at the Foundation spends an entire 12 months putting together a tempting list of approximately 3,000 prizes, ranging from watches and luggage sets to oncein-a-lifetime trips and, of course, two
grand prize packages, each consisting of cash, a new car and a luxurious, fully furnished new home. Many of us follow along as the draw results are announced on live TV each fall, but few people know what the prize-granting process is like for those behind the scenes. On the opposite page, Sean Capri, the Foundation’s former annual giving manager, sheds some light on what happens on the days surrounding the big draw.
A WINNER’S PERSPECTIVE Christine Zurburg’s life was certainly changed by the Cash and Cars Lottery. A long-time Foundation volunteer, Zurburg was diagnosed with cancer herself in 2011. Even though she had to leave her job to undergo treatment at the Cross Cancer Institute, she was insistent on buying a 2012 Cash and Cars ticket (though
the cost at the time, $100, was a strain on her budget). Winning a grand prize wasn’t even on Zurburg’s mind — she simply wanted to give back to the Foundation. “I just wanted to help the people at the Cross,” she says. “I knew that the money from the ticket would be used in a good way.”
Q: Are you also the person who lets the winners know they won?
Q: Only the top prizes are drawn live on TV. What is the process for drawing the other thousands of prizes like? It’s [a bit] monotonous, but we have a good time because we have to make it fun to get through it. It takes three days. If you can imagine drawing 3,000 tickets and having to rotate the drum and scan in each ticket between every single draw… it’s a process. When I’m drawing, I can’t even look at the drum. I have to look forward but reach backwards. It’s terrible from an ergonomic point of view!
I do the full flow-through: I draw the tickets and then I get to go into another room and call the person to tell them they just won a $10,000 prize or a new car. And you can hear just pure joy and excitement, or maybe you can hear them doubt and suspect that this is a scam and I’m not who I say I am. You just get a whole slew of reactions from people and it’s the best part of the job.
On the day of the 2012 Cash and Cars grand prize draw, Zurburg was at the Cross for her treatment when a friend who had been watching Global News texted to tell her she won a prize. Assuming she’d won something small, Zurburg didn’t think much of it, but after receiving a call from the Foun-
Q. Do you have any stand-out memories?
Q: What kind of reactions do you get from the people who win the really big prizes? I’ve gotten all sorts of different reactions. People often completely lose their minds, crying and becoming hysterical and thanking us and saying, “I never win anything” over and over again.
dation, she learned she’d won the $1.3-million Calgary show home, a new Acura and $20,000 in cash. The prize has allowed Zurburg to continue with her ongoing treatment without having to work or worry about making ends meet. Through it all, Zurburg continues to buy
One gentleman won a cash prize and he was really struggling to provide for his family. He said to me, and I’ll never forget it: “Whether we stay in the house we’re in or if we move to a new house, I’m just happy that I’ll be able to finally make our house a home.” He just wanted his kids and his family to feel safe and comfortable. The cash allowed him to do that and make it a cozy place for his family, and it changed the trajectory of their life. Handing over those cheques to people and watching them realize that this is changing their lives forever is the coolest thing.
Cash and Cars tickets for the same reason she has all along: to contribute to the cause. “I will always buy a ticket,” she says. “And with no expectation of winning. I just want to support people with cancer. If I do win again, I [will] use the prize to help others around me and do something for them.” LEAP
myleapmagazine.ca WINTER 2019 LEAP 21
THE INSIDER ISSUE
A COLLABORATIVE APPROACH The Mickleborough Interfacial Bioscience Research Program has embraced a new approach for funding medical research by ELIZABETH CHORNEY-BOOTH photography CURTIS TRENT
It’s not uncommon for philanthropists to make a donation through the Alberta Cancer Foundation with specifications on how they would like it to be used. The family of the late Dr. Murray Mickleborough thought they knew what they wanted when they created a fund to help patients with head and neck cancer, but they learned that the world of medical research can be complicated and things don’t always go according to plan. Dr. Mickleborough was a well-respected maxillofacial surgeon who practiced in the Edmonton medical community for more than 20 years, working with patients suffering from cancer of the jaw — sadly, the same disease that Mickleborough himself was ultimately diagnosed with. But before his death in 2011, Mickleborough declared that he wanted $1 million donated in his name toward head and neck cancer research at Edmonton’s Institute for Reconstructive Sciences in Medicine (iRSM). The intent was that the money would be used to hire a dedicated research chair to work out of the University of Alberta (U of A) in partnership with iRSM, driving research projects related to reconstructive surgery. The Mickleboroughs’ donation was matched by the Alberta Cancer Foundation, the Covenant Health Foundation and, with some additional donations, the endowment eventually landed at $3 million. But that research chair position proved to be difficult to fill. A recruitment process took place in 2012, but the team at U of A couldn’t find the right candidate and they
also determined that securing a long-term chair would require more funds than the endowment had to offer. In order to get the money working as soon as possible, the Alberta Cancer Foundation floated the idea of abandoning the academic chair and letting the people within the head and neck cancer community collectively identify projects to be funded by the endowment. The Mickleborough family and iRSM both liked the idea. “Murray was never about doing things the standard way,” says Ross Porter, Mickleborough’s son-in-law. “The family decided that if there was a better way of leveraging our gift with the matching funds from the Foundation, then we should explore that.” In 2014, iRSM and the Foundation identified two projects to receive funding through a panel of scientific and medical experts and members of the Mickleborough family. Then, in 2016, the two parties assembled a group consisting of physicians, researchers, patients and family members and asked them to put together a list of research priorities for head and neck cancer, with a focus on improving patients’ quality of life. From there, interested researchers, as well as some of the patients and family members, put together project proposals guided by those priorities. The proposals were presented to a panel that included representatives from the Foundation, iRSM and the Mickleborough family, as well as patients, independent researchers and clinicians who recommended which projects would receive funding. Through the two rounds, a total of five proposals have now received funding,
including a project looking at the possibility of generating nasal cartilage in a lab and support for a clinical trial of a screening tool that uses saliva samples to detect HPV-related head and neck cancers. What makes the review and selection process unique is the diversity of viewpoints that helped to identify what kind of projects would best help patients. “The playing field was flat and there was no hierarchy. We used first names only [rather than titles] and had a vigorous debate. I felt and knew that I belonged there,” says Bernie Krewski, a patient who participated in the consultation process after receiving treatment for throat cancer. “The intensity of that process often helped me to forget that I am affected by cancer and continuing to recover from it.” This collaborative process highlights the collective strengths of the Alberta Cancer Foundation and iRSM, and what can happen when institutions think beyond traditional models and take a more practical approach. Dr. Sam Nakhla, an aerospace engineer at Memorial University of Newfoundland who was brought onto the project as a scientific reviewer, perhaps sums it up best: when people come together in the spirit of genuine collaboration and listen to the very people who are most impacted by what’s being discussed, amazing things can happen. “The iRSM is a big institute and the Alberta Cancer Foundation is one of the most developed cancer foundations in Canada or even in North America,” Nakhla says. “You have two giants collaborating. You’re double-scoring on the outcomes.” LEAP
RESEARCHERS AND PROJECTS FUNDED BY THE MICKLEBOROUGH INTERFACIAL BIOSCIENCE RESEARCH PROGRAM IN 2017/18 DR. VINCENT BIRON Early detection of HPV-related head and neck cancers Clinical trial recruiting 120 patients for a saliva-based test to detect HPV-related head and neck cancers. $552,440
22 LEAP WINTER 2019
DR. ADETOLA ADESIDA Engineering cartilage for nasal reconstruction Developing high-quality personalized cartilage for nasal reconstructions better matching the patient’s facial contours. $481,776
DR. HADI SEIKALY Head and Neck Research Network Developing a sustainable model to support the Head and Neck Research Network tracking patient outcomes. $100,000
“THE INTENSITY OF [THE SELECTION] PROCESS OFTEN HELPED ME TO FORGET THAT I AM AFFECTED BY CANCER AND CONTINUING TO RECOVER FROM IT.” — BERNIE KREWSKI
myleapmagazine.ca WINTER 2019 LEAP 23
THE INSIDER ISSUE
FUNDRAISING FOR THE CURE During her 30-year career, Jane Weller helped transform the Alberta Cancer Foundation’s fundraising efforts from a one-person operation to a community effort that raises millions of dollars every year by CAITLIN CRAWSHAW photography RYAN PARKER
When Jane Weller began her career at the Alberta Cancer Foundation, her job as Foundation coordinator consisted simply of receiving donations at her office in the Cross Cancer Institute. “It wasn’t very proactive,” she says. But that was back in 1988 — the Foundation was still in its infancy, with just a handful of staff members in Edmonton and Calgary (that number has since grown to about 60). In that year, Foundation donations amounted to about $500,000 for the whole of the province, a sum that has since grown to tens of millions. >
24 LEAP WINTER 2019
“WE ONLY HAD OUR EYE ON ONE THING, AND THAT WAS THE VERY BEST FOR CANCER PATIENTS AND THEIR FAMILIES.” — JANE WELLER
myleapmagazine.ca WINTER 2019 LEAP 25
THE INSIDER ISSUE “The donations have just skyrocketed,” says Weller, whose career path has paralleled the growth of the Foundation, not to mention cancer research and the fund development profession. During her 30-year tenure — including the first decade she spent as the Foundation’s sole development officer — Weller worked in every aspect of fundraising, helping to grow and launch many important initiatives. From organizing events and writing thank-you letters to donors, to matching donors with projects in need of funding and overseeing all of the organization’s fundraising efforts, Weller did it all — and loved it. “I originally wanted to be a nurse, but after volunteering as a candy striper in a hospital, I thought, ‘I don’t think so!’” she says with a laugh. “I just wanted to be on the periphery [of medicine], and the perfect job just kind of fell into my lap.” Not one for the spotlight, Weller has happily worked behind the scenes with staff, volunteers and patients to raise the funds needed to improve cancer research and care in the province. “We only had our eye on one thing, and that was the very best for cancer patients and their families,” she says.
As years went by, the job became easier, in some ways. On top of growing public awareness about cancer, it helped that Weller had far more research successes to share with prospective donors. “I think back to my early days, and I didn’t have much to tell them,” she says. Because research hadn’t yet impacted survival rates for many cancers, many donors felt a cure was impossible and insisted their donations go to equipment investments rather than research efforts. This changed as the years passed and research efforts both in Alberta and elsewhere had enough time to bear fruit. “Now there are so many amazing therapies and immunotherapies. It just takes a long time,” Weller says. Not surprisingly, Weller doesn’t measure her accomplishments by the many millions of dollars she has helped raise over the years. More gratifying, she says, has been working with talented teams of people toward a cause she believes in, and seeing huge changes to cancer treatment and patient outcomes. While one in two people will now get cancer in their lifetime, a number that has doubled during her career, “there’s never been a more promising time in cancer research,” she says.
Weller is now experiencing treatment improvements first-hand after discovering a lump in her breast two years ago. Following her diagnosis, she found herself being treated by clinicians she knew through her work as a fundraiser. She just recently made the difficult choice to step down from her post to continue her healing, though she will still volunteer with the Foundation, where her impact has been profound. “No one has played a more significant role in the great successes in fundraising for the Foundation and in particular for the Cross Cancer Institute than Jane Weller,” says Bob Bentley, past chair and long-time supporter of the Foundation. “Highly respected by staff and donors for her passion and devotion, Jane became the heart and soul of the Cross. She has left an enduring legacy at the Foundation.” Weller says her own circumstances make her think of the late Frank Sojonky, a wellknown philanthropist, grateful patient and Foundation fundraiser whose signature line to potential donors to the Alberta Cancer Foundation was, “You never know, the life you help save could be your own.” “I’m just so thankful now,” says Weller, “because obviously I’m on the receiving end.” LEAP
LEAVING A LEGACY
Discover why a long-time donor decided to make a legacy gift to the Alberta Cancer Foundation
To learn more about leaving a gift to the Alberta Cancer Foundation in your Will, or to inform the Foundation that you have already done so, visit albertacancer.ca/legacy.
26 LEAP WINTER 2019
Laurie Wohland has never had cancer, but the disease has shaped her life. Her grandmother, mother and husband all died from cancer-related causes, and her sister and daughter are breast cancer survivors. Wohland has been a donor to the Alberta Cancer Foundation for more than 20 years. Each time the disease struck another family member, she and her husband increased their annual donation — no matter how tight money was. “Our contributions weren’t huge, but we gave every single year,” Wohland says. Then, in the same year that her husband passed away from Non-Hodgkin’s Lymphoma,
Wohland learned that many of the women in her family carried an inherited gene mutation that is linked to an increased risk in breast and ovarian cancer, and she wondered if she could do more. Around three years ago, with the encouragement of her daughter, Christy Soholt (who is the manager of legacy giving at the Alberta Cancer Foundation), Wohland attended a seminar, hosted by the Foundation, where she learned that if she made a bequest to the Foundation in her Will, her estate would receive charitable benefit. Wohland had always assumed leaving a large donation to charity would mean leaving a small estate for her children. But, thanks to the seminar,
she understood that the tax advantages resulting from the donation would allow her to make a major gift without significantly diminishing her children’s inheritance. To make the bequest, Wohland is in the process of amending her Will. She plans to leave a percentage of her estate to support cancer research in Alberta, rather than a dollar amount. She hopes her gift will help to improve early detection procedures and advance treatments, which she credits with saving her daughter’s life. Now, she’s trying to convince her friends to consider legacy giving. “They say, ‘Oh, I’ll leave [my estate] to my kids,’ but they can do a whole lot better than that,” Wohland says. LEAP — JULIA WILLIAMS PHOTO PAUL SWANSON
A YEAR IN THE MAKING
It’s a big operation to ensure every rider in the Enbridge Ride to Conquer Cancer pedals triumphantly past the finish line by JENNIFER DOROZIO illustration GLENN HARVEY
The Enbridge Ride to Conquer Cancer (ERTCC) is a signature cycling event, and to put it together each year, it takes a truly skilled and mighty village of volunteers, participants and leadership teams. The two-day, 200-plus-kilometre charity ride — which has more than 1,900 participants — has taken place in Alberta every summer for a decade, and has raised more than $74 million for the Alberta Cancer Foundation since its inception. The work that goes into bringing it all together is both rewarding and epic. “It’s 365 days a year,” says Ryan Campbell, director of corporate relations at the Foundation. Turn the page for a closer look! >
myleapmagazine.ca WINTER 2019 LEAP 27
THE INSIDER ISSUE
EARLY SEPTEMBER Once a Ride wraps up in August, it’s full steam ahead into planning the next year’s event. Things kick off with a mass email survey sent out to all riders who participated in the justpast event, with the aim of gathering valuable feedback to shape the next Ride.
LATE SEPTEMBER A series of “debrief” meetings takes place with key event leads, including Foundation staff, Ride Committee members, riders who participated and other stakeholders. Once again, these are held to gather feedback and develop a strategy for the next year.
“We want to [keep making] an event that is world-class, accessible and incredible,” says Julian Brown, director of event production for the Enbridge Ride to Conquer Cancer.
EARLY OCTOBER A new Ride location is secured — one that can handle upward of 2,000 bikes, 500 spectators and all the sponsors, volunteers and infrastructure required.
“We always have safety as our top priority,” says Brown. “Number two is providing an experience. We want it to be an epic route, but riders still have to be able to complete it strongly.”
MID-OCTOBER The Foundation hosts Rider Recognition Night as a thank-you to the previous Ride’s participants, including some of the top fundraising teams, both in Calgary and Edmonton.
MARCH THROUGH MAY Riders begin to train more intensely — a typical, early-spring distance benchmark is 20-25 kilometres per ride.
JUNE THROUGH AUGUST Training kicks into high gear for riders; the typical training aim at this point is to reach 100 km per ride.
“It’s worth it. No matter how hard [the whole Ride] might seem, you don’t do it all in one day, it’s baby steps,” says Majer, who is a seven-time Ride participant.
Riders receive their event jerseys and continue training and fundraising.
ONE WEEK TO GO Ride infrastructure goes up, including the campground and dining centre, pit stops, bike racks, and various information and vendor tents.
A “check and double check” process takes place for every permit, vendor, medical team and crew team involved. Volunteers put up route markers 24 hours before the Ride begins.
28 LEAP WINTER 2019
INSIDER TIP: THROUGHOUT THE YEAR, THOSE SEEKING FUNDS FOR THEIR RIDE CAN USE THE ERTCC TEMPLATE EMAIL TO REACH OUT TO FRIENDS, FAMILY AND CO-WORKERS. Also around this time, The Foundation does a Team Up Challenge to get teams to re-register for the Ride together. “The team aspect is really important,” says Campbell. “[On a team] people are much more likely to meet their fundraising minimum [$2,500] because you have that team supporting you.”
Teri Majer, Enbridge Leadership Committee member for the ERTCC, adds that many corporations, including Enbridge, want longevity for the teams they create. “We’re trying to build teams [that will last] three, four, five years down the road. We think very far into the future.”
LATE OCTOBER TO DECEMBER Permits for the new Ride location are acquired. Brown’s team also coordinates with community representatives, government representatives and local businesses to invite them as partners in the Ride.
The work begins on recruiting crew members (those who volunteer over the entire Ride weekend) and other volunteers. “We rely on a phenomenal group of volunteers,” says Brown.
All vendors and services required for the event are also secured, including buses, portable toilets, tents, catering companies, hotels and much more.
JANUARY To fire up the fundraising cycle in the winter, when a lull can happen since there are still many months until the Ride, the Foundation launches a Gear Up challenge where participants raising money can win swag as incentive for monetary benchmarks.
RIDE WEEKEND Before the start, cyclists perform final checks on their gear, and all teams mobilize.
Route safety is managed by police and traffic management professionals, as well as the volunteer motorcycle crew who review the route, give encouragement, relay real-time updates and provide direction to riders. As soon as the last rider passes, streets are quickly turned back over to vehicles.
Foundation staff members fill in the gaps and maintain communication with the organizational teams, as well as interacting with riders and volunteers.
AT THE FINISH LINE The finish line on the final day is buzzing with emotion and energy. Riders take photos in front the “I Conquered” wall alongside team members, friends and family.
THE DAY AFTER As soon as the last rider passes, signage is taken down, traces of the Ride are cleaned up and the streets are returned to normal within 24 hours.
“The Ride is an amazing challenge bolstered by an incredible community of people whose passion and dedication support a Foundation and a cause that is making a difference in people’s lives. That is an incredibly powerful thing to be a part of,” says Brown. LEAP
myleapmagazine.ca WINTER 2019 LEAP 29
THE INSIDER ISSUE
ACCESSING RELIEF The Patient Financial Assistance Program brings much-needed support to cancer patients across Alberta by CHRISTINA FRANGOU photography JARED SYCH
In the winter of 2013, Garnet Greipl spent most days on the road, travelling away from his family in Didsbury, AB, to work as a contractor for oil companies. But that spring, his life turned upside down. He was diagnosed with multiple myeloma. As a result, he still spent many days on the road, but now it was in order to travel back and forth to Calgary for treatment. Self-employed but unable to work fulltime, Greipl and his wife drew from their retirement funds to cover their bills. Those bills, unlike their savings, seemed endless. By fall, they were struggling to cover their mortgage and the costs associated with his frequent trips for treatment. “Cancer pretty much took everything that we had,” Greipl says. But a boost arrived — in the form of financial help from the Alberta Cancer Foundation’s Patient Financial Assistance Program (PFAP), a relief program for cancer patients who are undergoing active treatment. Funded by donor dollars, PFAP covers costs like housing, food, childcare and transportation — things often omitted from other kinds of financial aid. Greipl heard about the program through Holly Minor, a social worker at the Tom Baker Cancer Centre in Calgary. They’d been introduced after Greipl answered a standardized form — part of the Putting Patients First Program, an initiative the Foundation has also invested
in — given to all cancer patients in the province. In it, he’d ranked financial hardship as a major stressor. On their first meeting, Minor completed the paperwork for his PFAP application. About six weeks later, Greipl began receiving regular financial aid to cover his hospital parking and transportation to and from Calgary. Greipl says PFAP reduced the burden of financial stress during one of the hardest periods of his life. “It helped me get through a lot of tough times,” he says. Many cancer patients earn a reduced income or no income at all during treatment and even after treatment. But costs of everyday living — things like mortgages, groceries, utilities — don’t change. If anything, cancer brings additional bills. Things like hospital parking, medications and transportation to and from hospital add up quickly. “Cancer can be impoverishing,” says Minor. “The research shows that when there’s financial stress, it’s often greater than the stress of a cancer diagnosis and the treatment that people are facing. I can vouch for that. I’ve heard people say, ‘The cancer diagnosis is nothing compared to my concerns of how to feed my children.’” Researchers use the phrase financial toxicity to describe financial stress related to cancer, an acknowledgement that disease-related debts cause enough burden to qualify as an adverse side-effect, much like
the toxicity of chemotherapy. Running for more than 15 years, PFAP is designed to reduce this financial toxicity by providing relief to patients from costs that are directly associated with cancer treatment. Most patients who receive PFAP are referred by doctors, nurses or pharmacists, often based on the questionnaires patients fill out at the cancer centre. Social workers then conduct a detailed assessment of each applicant, taking into account things like income and savings, number of dependents, assets and eligibility for government funding. Funds are allocated based on detailed guidelines created by the Alberta Cancer Foundation. Often, PFAP is a way to help cover a person’s expenses while they are waiting for insurance or government assistance to begin. “It’s a fund of last resort,” says Minor. “It can’t replace an income. But when someone has nothing else, we use this if they qualify.” The amount of money given is based on a person’s need: for some, that may mean covering a utility bill; for others, it’s helping with ongoing costs related to treatment. According to Minor, PFAP is especially helpful for self-employed patients or those from rural areas whose treatments require living away from their homes for months. “What this fund does is vitally important,” she says. “We help people negotiate that period of time where they are really in shock.” LEAP
PFAP is available to adult patients who are residents of Alberta. In 2017, the program was used 4,962 times by patients who received more than $1.2 million in assistance.
30 LEAP WINTER 2019
PAYING IT FORWARD Last August, when the Enbridge Ride to Conquer Cancer was cancelled due to smoke from the British Columbia wildfires, a team of riders entered the Tasty Thai restaurant that Garnet Greipl runs with his wife. To express his heartfelt gratitude for their fundraising efforts, Greipl bought all of their meals.
“[PFAP] HELPED ME GET THROUGH A LOT OF TOUGH TIMES.” — GARNET GREIPL
myleapmagazine.ca WINTER 2019 LEAP 31
TRUE DE T HEIDI HOGG GENETIC COUNSELLOR
KIMBERLY DORNAN GENETIC COUNSELLOR
NATASHA LEMISKI GENETIC COUNSELLOR
The Hereditary Cancer Clinic team helps
32 LEAP WINTER 2019
TECTIVES PAULIEN VAN GALEN GENETIC COUNSELLOR
MARY-ANN WIENS STEPHANIE DESMARAIS
MISSING FROM PHOTO
RENEE PERRIER GENETICIST
Albertans at risk make informed choices > by CHRISTINA FRANGOU photography JARED SYCH
myleapmagazine.ca WINTER 2019 LEAP 33
THE HEREDITARY CANCER CLINIC TEAM HELPS WITH SCREENING AND PREVENTION
It’s a bit of detective work, a bit of cutting-edge research and a lot of one-onone counselling — all under the title of the Hereditary Cancer Clinic team. From its office on the third floor of the Alberta Children’s Hospital in Calgary, this team of genetic counsellors pores over family histories, looking for Albertans who carry genes linked to hereditary cancers. “If we can identify someone through their family history and give them the opportunity for genetic testing, it’s empowering for them,” says Paulien van Galen, a genetic counsellor on the team. “In many ways, nothing has changed because they’ve had this gene since the day they were born. What’s changed is now we have the information moving forward to be proactive rather than reactive,” says van Galen. 34 LEAP WINTER 2019
The likelihood of hereditary cancer is low — inherited genetic mutations play a role in five to 10 per cent of all cancers, so genetic testing is not helpful for most families. Testing is resource-intensive and can be stressful for families. The hereditary cancer team offers appointments for individuals or families with a history suggestive of a hereditary cancer predisposition. “We want to focus on that piece of the pie and make sure that we can serve that group of families as best we can in terms of screening and prevention,” says another member of this crucial team, genetic counsellor Stephanie Desmarais. Most patients are referred to the Hereditary Cancer Clinic by family doctors, surgeons or oncologists. A genetic counsellor will then discuss if genetic testing is appropriate and identify
who in the family is best to test. If testing is offered, the team interprets the results in the context of family history, both for the individual and their relatives Desmarais encourages eligible patients to meet with a genetic counsellor even if they don’t feel ready for testing. “Everyone deserves to make an informed decision about whether testing is right,” she says. Many genes have been identified that may predispose individuals to developing certain cancers. The most common hereditary breast cancer genes are BRCA1 and BRCA2, which are linked to breast and ovarian cancer, while Lynch syndrome is the most common hereditary colon cancer condition. Historically, the advantage of genetic testing was solely in identifying people who had an increased risk of developing cancer. These individuals could undergo more frequent or specific surveillance or risk-reducing surgery if appropriate. But recently, a new therapy for women with breast or ovarian cancer who have a BRCA1 or BRCA2 mutation — PARP inhibitors — was approved in Canada. “More and more, we’re starting to see an advantage for patients to know up front if they have a specific gene mutation that creates risk in terms of opportunities for screening but also for treatment decisions for patients with cancer,” says van Galen. Research looking at genetics and cancer is changing quickly. That has implications for everyone, says van Galen. “We very much stress to all our patients that this is an evolving field. What we have available now might be different from what we have available in three to five years.” LEAP
THE LEARNING THROUGH LOVE TOUR TAKES KIDS RIGHT BEHIND THE SCENES
Learning Through Love An interactive tour at the Cross Cancer Institute brings a sense of comfort and understanding to children whose families are facing cancer by EMILY SENGER
FINDING THE RIGHT WORDS TO TALK TO
kids about a family member’s cancer diagnosis and treatment can be difficult, but a group of dedicated nurses at the Cross Cancer Institute in Edmonton is trying to make it a little easier. Nurses Lisa Zawaski and Rachel Burroughs run the Learning Through Love Children’s Tour, a program for children ages six to 18 who have a family member receiving treatment at the Cross. The goal is to show the kids the facilities and to educate about different facets of cancer care, making the situation a little less scary.
Zawaski got involved with Learning Through Love a year ago when her own husband, Trevor, was diagnosed with cancer for the third time, this one in his parotid (saliva) gland. Her kids, aged seven and nine, were getting older and had more questions than before, so she signed the family up for the program. “When things are unknown, children are scared,” Zawaski says. “Going in to see the physical space where their dad gets treatment lessened their fear. They got an understanding of where [he’d be going] every day for six weeks. It opened up a
whole new channel of communication.” This sense of understanding is exactly the result nurse Karen Saban (recently retired) hoped for when she started planning Learning Through Love in 2003. Around that time, Saban, and other in-patient nurses, had watched a young mother of three kids pass away unexpectedly from cancer. “It just tore us apart,” recalls Saban. “I realized then that the Cross didn’t have enough resources to support children.” Saban was inspired. She set to work, volunteering her own time to line up supporters from multiple departments within the Cross, and then launching the first set of tours in 2005. Today, Learning Through Love runs at least three times per year, on Sunday afternoons, and relies largely on volunteers. Children and their parents or caregivers visit the chemo/medical daycare unit, talk about IVs and ports, see the medical lab and microscopes, and check out a linear accelerator unit, the X-ray department and the hair and wig salon. The tour wraps up with snacks and balloon creations from Glen The Balloon Guy, an Edmonton artist who has volunteered with the program since its early days. Kids get photos and a swag bag to take home, which the Alberta Cancer Foundation helps to fill with note pads, sunglasses and other small items. Saban gave her last tour in October 2018. She retired in January 2019, after a 40-year nursing career. She knows Learning Through Love will continue. “I feel I’m leaving this in good hands,” she says. Burroughs says she and Zawaski hope to live up to Saban’s legacy. “[We intend] to continue Karen’s work,” says Burroughs. “She has done such a great job and it needs to continue. Kids need a place for this.” LEAP To get more information about Learning Through Love, or to register, contact the Cross Cancer Institute’s Psychosocial and Spiritual Resources Department at 780-643-4303. See page 19 for more information on how to speak to your child about a cancer diagnosis. myleapmagazine.ca WINTER 2019 LEAP 35
May has promised a gift of life. Her 52-year marriage cut short, May wants future generations to be free from cancer. A gift through her Will can honour her late husband and help save lives. This will be part of her legacy.
Thank you May!
Leave a legacy. Consider a gift of life in your Will. albertacancer.ca/legacy
Revolutionizing Oncology Consultations A new recording app empowers cancer patients by JENNIFER DOROZIO
ON A TUESDAY EVENING IN
Calgary four years ago, Robert Douglas’s doctor pointed to several spots on an X-ray of Douglas’s lungs and explained that he had cancer. “I was in shock,” says Douglas. The next morning, Douglas went to the Tom Baker Cancer Centre in Calgary for a CT scan and received a call back later that day urging him to go immediately to the Rockyview General Hospital for surgery. The next week was a blur of tests, scans, ultrasounds and procedures — often while having to fast. “By the time I started chemotherapy and had really sat down with my doctors, I’d lost almost 40 pounds, I hadn’t eaten much, I’d had fluids injected in me, I hadn’t slept, I’d had surgery, I was on opioids,” says Douglas. “You’re not necessarily at the highest cognitive level, and your shortterm memory tends to become incredibly unreliable.” A corporate lawyer who is accustomed to being able to count on his memory, Douglas considers himself lucky that his wife, an engineer and a “copious note-taker,” was able to attend his doctor’s appointments and keep track of the tidal wave of information coming their way.
But not everyone has a copious note-taker to rely on, and being inundated with important medical information at a vulnerable time can be overwhelming. This very fact is what led Dr. J. Dean Ruether, a medical oncologist at the Tom Baker Cancer Centre, and Dr. Tom Hack, a researcher at the University of Manitoba, to look into ways to help. In the early 2000s, and again in 2013, they held randomized control trials and evaluation studies that examined ways that certain patients could change and improve upon their cancer treatment participation. One such study looked at the impact and benefits of letting patients record their doctor consults. It found that patients who did record their consults were generally more present during their consult conversation, because they didn’t have to worry about remembering everything they were hearing. The majority of those same patients also claimed to have felt better prepared to make treatment decisions after the fact, and were even more likely to consider participating in clinical trials later on. Recently, the results of Hack and Ruether’s research inspired the development of
a brand new app that allows patients to record oncology consults. Called My Care Conversations and officially launched in late November 2018, the app is fully funded thanks to the support of Alberta Cancer Foundation donors and was developed by CancerControl Alberta and Alberta Health Services. “I know first-hand from many patients how overwhelming it is to go into a cancer consult and hear so much information. You cannot remember anything after the words, ‘You have cancer,’” says Dr. Linda Watson, lead of person-centred care integration with CancerControl Alberta and the oncology nurse in charge of developing the app. “[This app] is such a patientempowerment strategy.” The app is still new, but Watson says it will soon become a
key part of patient orientation programs. Its main recording feature offers options for electronic note-taking and the ability to pre-populate prompts for common questions a patient may want to ask. It also includes privacy initiatives explaining who the recordings can be shared with, a builtin reminder to tell the care provider a recording is being made, and tips on where you can record and how to best position the phone to get the best quality recording. “Cancer is a different thing to everybody who has it,” says Douglas, who was part of the first round of user testing for the app. “Being able to get a better understanding of your disease, a better understanding of your treatment options … I think that’s very empowering to patients.” LEAP
ILLUSTRATION SPENCER FLOCK
myleapmagazine.ca WINTER 2019 LEAP 37
38 LEAP WINTER 2019
DR. MICHAEL MONUMENT IS COMMITTED TO BRINGING NEW, MORE EFFECTIVE THERAPIES TO SARCOMA PATIENTS
STAR by COLLEEN BIONDI photography COLIN WAY
umours that originate in bone, muscle or connective tissues are called sarcomas. They are rare and account for only one per cent of malignancies. Sarcomas are compelling because of their size — they can be up to 30 centimetres in length and take up to 10 hours to remove — as well as their intimate and dangerous connection to the skeletal structure. Doctors who perform sarcoma surgery need the fine motor skills of a pianist, the physicality of a carpenter and the coordinated approach of an engineer. This is a perfect description of Dr. Michael Monument, an orthopaedic oncology surgeon in Calgary. >
myleapmagazine.ca WINTER 2019 LEAP 39
“You remove the tumours with life-saving intent and reconstruct whatever is left behind,” explains the 38-year-old. Monument had a childhood dream of becoming a professional hockey player, but his love of sciences made medicine a more suitable career path. He received his undergrad in cellular biology and genetics at the University of Calgary (U of C). After securing his medical degree and residency, also at the U of C, Monument travelled to the University of Utah to study sarcoma research and surgery through a threeyear fellowship program. He has been in practice since 2014. Monument is also an assistant professor. He teaches orthopaedic oncology courses, operating room procedures and small group anatomy to medical students and residents at the Cumming School of Medicine. He has a hip and knee replacement practice and leads a research team with a focus on the causes and treatment of sarcomas at the Cumming School of Medicine. “I am busy,” he admits. “But I think if I was more efficient with my time, I could do more.”
most common soft tissue sarcoma found in adults. Currently, there are no effective systemic therapies for UPS, and invasive surgery is usually recommended — this involves removing large amounts of tissue and, often, intricate reconstruction. Immunotherapy is being used successfully in treating melanoma and lung cancers, so Monument was keen on exploring its viability for sarcomas. For the last five years, he and his team of four core researchers have been engineering muscle sarcomas in mice, in an effort to best mimic a human tumour. A pathologist studies these engineered tissue samples and conducts genetic testing to determine which tumours are sufficiently similar to the human variety. Only up to 70 per cent meet the standard. The team then tracks the growth of the selected tumours, which are engineered to express fluorescent proteins with bio-luminescent components. “You use a camera to look at them in live animals,” says Monument. “The cancer cells glow in the dark.” At that point, the team injects a type of drug called a Stimulator of Interferon
“AS AN ORTHOPAEDIC SURGEON, THE CHALLENGE IS NOT SIMPLY TO LOOK AFTER THE DAY-TO-DAY CLINICAL CARE OF THE PATIENT, BUT TO INTRODUCE NOVEL IDEAS AND GENERATE HIGH-QUALITY RESEARCH.” — DR. MICHAEL MONUMENT
One could argue this statement — Monument plays recreational hockey twice a week, is a long-distance runner and is in a committed relationship. He is also a gardener but is not totally feeling that love. “I am trying to test my green thumb out,” he says. “But I am having limited success so far.” But challenges do not thwart him. In fact, they motivate him. His research is a case in point. Monument is studying whether immunotherapy (a strategy used to boost the body’s natural immune function to treat cancer) might be useful in handling undifferentiated pleomorphic sarcoma (UPS), a.k.a. muscle-derived sarcoma. UPS is a high-grade, aggressive malignancy and the 40 LEAP WINTER 2019
Genes (STING) receptor agonist directly into these tumours to disrupt blood flow and activate the cancer-killing properties of the immune system (this therapeutic strategy has already demonstrated such effects in other solid cancers). In their first pilot experiment, four out of six mice treated with a single STING dose had their tumours disappear within three months. Plus, efforts to re-activate the malignancies have failed. “It is almost like they are now immune. This preliminary data is extremely exciting,” says Monument. He and his group are pioneering experimentation by injecting the STING agonist drug directly into sarcoma tumours — this category of therapy has never been attempted in sarcomas, specifically.
This year, Monument hopes to further his study by exploring the benefit of injecting more than one dose into the sarcoma tumours. He is also looking to test this therapeutic strategy on multiple different sarcoma subtypes. Will such attempts boost effectiveness, including keeping tumours from developing elsewhere? And what about the idea of sarcoma immunization — could the drug be used to prevent metastasis or to prevent sarcoma from recurring years down the road? Answers to these questions could fundamentally alter the trajectory of the development of novel systemic therapies for sarcoma. Many funding bodies are committed to this research. The Canadian Orthopaedic Foundation, the Alberta Cancer Foundation, the McCaig and Charbonneau Research Institutes with the Cumming School of Medicine and the Section of Orthopaedic Surgery at the U of C have provided a total of $300,000 to date. “The long-term goal of this research is to use these [laboratory] experiments to see if STING agonist therapy is a viable therapeutic strategy for treating sarcomas, and in doing so justify building clinical trials looking at STING agonist therapy for human sarcoma patients who are metastatic or have little therapies available to them,” says Monument. Colleagues are supportive and proud of Monument’s work and commitment to sarcoma advances and better outcomes for patients. “Mike is a rockstar because he can relate a message about research to many audiences — students, colleagues, researchers, patients and the lay public,” says Kevin Hildebrand, fellow orthopaedic surgeon and professor at the U of C. “He is passionate about his work and direction and connects well with people.” For Monument, it is less about rockstar status and more about the big picture and the greater good. “As an orthopaedic surgeon, the challenge is to not simply look after the day-to-day clinical care of the patient, but to introduce novel ideas and generate high-quality research,” he says. And to execute that passion and dedication in his hometown is a bonus, says Monument. “It is a privilege to work in Calgary.” LEAP
DR. MONUMENT 1. Describe what you do in 10 words or less. I’m a musculoskeletal oncology surgeon and scientist. 2. What’s the biggest misperception about what you do? The surgery is harder than the science. 3. Where do you get your best ideas? Airplanes and road trips. 4. If you weren’t an orthopaedic surgeon, what would you be? A professional hockey scout. 5. What’s the hardest lesson you’ve learned? Balancing clinical, research and personal time is not easy. 6. What motivates you? Being better today than I was yesterday. 7. What do you do to recharge? Travel and ice hockey. 8. Why does your research matter? Sarcoma patients desperately need new, effective therapies.
myleapmagazine.ca WINTER 2019 LEAP 41
LEADING THE WAY Dr. Daniel Heng is devoted to strengthening Calgary’s cancer research community by SILVIA PIKAL photography COLIN WAY
AS A MEDICAL ONCOLOGIST WHO IS INTER-
nationally recognized for creating the world’s largest database of kidney cancer patients treated with targeted therapies, Dr. Daniel Heng keeps a very busy schedule. Not only does he travel to hospitals and medical conferences around the world to speak about his work on this database, he also sees patients two days a week in clinic, and participates as a principal investigator on several kidney cancer clinical trials each year. “I love my job,” Heng says. “I love when a patient is full of gratitude and when someone says, ‘Thank you for taking the time to call me personally.’” It’s this passion for patient care, coupled with valuable leadership skills and an extensive research background, that led to Heng’s recent appointment as Medical Lead for the Tom Baker Cancer Centre’s Clinical Research Unit. In this role, he oversees the department that coordinates all cancer clinical trials for the centre. Born in Brunei, Heng immigrated to Canada with his family when he was three years old, and was raised in Calgary. He dreamed of working in the medical field from a very early age. “I wanted to help people, and medicine always interested me,” Heng says. In high school, while trying to decide on a specialty, he job-shadowed an 42 LEAP WINTER 2019
ophthalmologist and quickly decided that ophthalmology was a good fit. “I worked really hard to get into medical school so I could become an ophthalmologist, and then, on the first day of medical school, I realized, ‘Oh, wow, there’s so much more to medicine than just the eyeball,’” he says. Heng found himself drawn to oncology because he wanted to participate in the research of a rapidly changing field. After graduation from the University of Calgary in 2005, he spent a good part of the next five years learning as much as he could from institutions in Vancouver, Cleveland and Boston, with the goal of eventually bringing all of this knowledge back to his hometown. “I knew I wanted to come back to Calgary because this is where my family is and where I grew up,” Heng says. “I got a great scholarship back in the U of C days, when I was an undergrad, and had a lot of support through volunteer work, and said to myself, ‘The city has given me so much, I want to stay here and contribute as much as possible.’” Heng completed his residency training at the University of British Columbia in 2006, where he confirmed his hunch that oncology was the right fit for him, primarily because of the relationships oncologists can build with their patients.
He believed — and continues to believe — that oncologists have an opportunity to provide a more hopeful outlook to patients who feel they’re facing a dark and difficult path ahead. “We can make a patient’s journey brighter, more informed, and really help with symptoms,” Heng says. “We can improve quality of life.” BUILDING A VITAL RESOURCE
Upon completing his residency, Heng entered the medical oncology fellowship program at the University of British Columbia. It was during this time, as an oncology fellow, that he began his work in creating the world’s largest database of metastatic renal cell carcinoma patients. (Renal cell carcinoma is the most common kidney cancer in adults, and metastatic means the cancer has spread from its primary site.) Heng had long been accustomed to collecting cancer data for research projects, and the lack of a kidney cancer database stood out to him. He decided to address the problem. Heng says that, while kidney cancer is one of the top 10 most common cancers, it’s still rarer than breast or lung cancer, which means there’s a smaller population of patients in each city. He recognized that collecting a large sample size >
DR. DANIEL HENG, MEDICAL LEAD FOR THE TOM BAKER CANCER CENTREâ€™S CLINICAL RESEARCH UNIT
myleapmagazine.ca WINTER 2019 LEAP 43
through worldwide collaboration was critical to better understanding and treating kidney cancer. He began building the database while visiting his family in Calgary during the holidays. When a snowstorm thwarted a planned outing to the mall to take advantage of Boxing Day sales, Heng pulled out his laptop and got to work. While snow blanketed the city, he spent hour upon hour collecting data from kidney cancer patients. Today, Heng’s database, called the International Metastatic Renal Cell Carcinoma Database Consortium (IMDC), has grown from about 60 cancer patients to more than 9,700, all of whom are treated with targeted therapies from dozens of cancer centres worldwide. The IMDC is now used by researchers around the world to help them determine which drugs to use to treat patients and in what sequence, and whether the benefits outweigh the risks for a patient with metastatic kidney cancer to have a kidney tumour removed. “I’m really proud of it, and it’s housed right here in Calgary,” says Heng, who also developed a prognostic tool, called the IMDC Criteria (a.k.a. the Heng Criteria), which predicts how metastatic kidney cancer patients will fare with treatment. When the IMDC was still in its early days, Heng, wanting to gain more experience in kidney cancer research, moved to Cleveland, Ohio, for a fellowship in experimental therapeutics at the Cleveland Clinic Cancer Center. There, he trained to be a clinical investigator, learning about new therapies under investigation and following the progress of patients on clinical trials. To further build on his statistical skills, he also spent three summers in a row earning a masters of public health from Harvard University. Then, when an opportunity at the Tom Baker Cancer Centre came up, Heng applied right away. He was hired on as a medical oncologist in October 2008 and has been working at the Tom Baker ever since. “I’ve never looked back,” he says. “This is definitely the place I want to be.” A NEW FOCUS
Heng was officially appointed medical lead for the Clinical Research Unit (CRU) 44 LEAP WINTER 2019
in September 2018. In this newly minted role, he provides strategic leadership and direction to CRU and Tom Baker Cancer Centre researchers, with the goal of growing capabilities for all clinical trials and research at the centre. This includes industry-led trials sponsored by pharmaceutical companies, as well as investigator-initiated and cooperative-group trials (involving multiple hospitals and cancer centres) that don’t have pharmaceutical backing but are funded by other organizations, including the Alberta Cancer Foundation. “I’m so excited to lead it and cultivate it,” Heng says. “Alberta is in a great position to be able to do these trials.” The CRU — funded in part thanks to generous donors of the Foundation — currently has 65 employees, and recruits more than 500 patients to clinical trials each year.
When it comes to treatment, Heng encourages patients to “think trials.” Not only do clinical trials provide patients with the opportunity to try cutting-edge therapies not on the market yet, he says, they can also give greater access to medical support. Dedicated teams of research nurses and trial coordinators guide patients carefully through study protocols and potential side effects of a therapy. In illustrating the power of potentially positive outcomes for clinical trials, Heng points to a recent industry-led clinical trial for renal cell carcinoma patients. This past September, a news release announced that a combination of two kidney cancer drugs improved progression-free survival in advanced renal cell carcinoma patients more than the drug usually prescribed. “We have patients on that clinical trial here,” Heng says. “We get to tell those
“We can make a patient’s journey brighter, more informed, and really help with symptoms. We can improve quality of life.” — DR. DANIEL HENG
Dr. Sunil Verma, medical director of the Tom Baker Cancer Centre, believes Heng’s international credibility with the IMDC, and the connections he’s made through his training, will help accelerate the growth of the CRU by leading to more opportunities to collaborate in clinical trials with different global institutions. Verma is also excited to see the ways in which Heng will mentor new investigators and researchers. “Danny has established himself as somebody who will be a tremendous leader,” says Verma. “His leadership style, his mentorship, and his collaborative approach are really going to help junior investigators, and senior faculty as well. He also has humility, which I think we need [when dealing with] a disease such as cancer, because it’s a disease that sometimes teaches us lessons on how tough it is to manage and to treat.”
patients, ‘The new drug combination you’re on has been shown to be helpful and better than the other drug, and thankfully you’ve been on it for the last year already.’” Success stories such as these are a major motivation to continue working hard in making Calgary an attractive research destination. “Not just attractive for industry and patients, but also for new staff, oncologists and researchers from other parts of the world,” Heng says. Even with all of his responsibilities, Heng is careful to maintain a work-life balance, making sure to spend time with his husband and four-year-old son, whose adorable photos are a key part of his office decor. “Every little milestone he does is just incredible,” Heng says. “He [recently] started using ‘For example,’ in his sentences. Little things like that are the highlights of my week.” LEAP
DR. DANIEL HENG CAREER HIGHLIGHTS ° Created the International Metastatic Renal Cell Carcinoma Database Consortium (IMDC) in 2006, comprised of data from more than 9,700 patients with kidney cancer from more than 30 cancer centres worldwide ° Developed the “Heng Criteria” in 2009, which predicts how metastatic kidney cancer patients will fare with treatment ° Completed a masters of public health from the prestigious Harvard University in 2009 ° Won the department of oncology’s Mentor of the Year award in 2014 at the University of Calgary ° Named one of Avenue magazine’s Top 40 Under 40 in 2015 ° Awarded a Meritorious Service Cross in 2017 from the Governor General of Canada on behalf of Her Majesty Queen Elizabeth II, for work in kidney cancer research
myleapmagazine.ca WINTER 2019 LEAP 45
ANABELL MARROQUIN IS DEDICATED TO SHARING HER STORY
A Smooth Transition as told to JENNIFER DOROZIO
In 2016, after being admitted to the emergency room to determine why she’d been feeling so unwell, 29-year-old Anabell Marroquin was given a scary diagnosis: she had acute lymphoblastic leukemia. She began her cancer treatments at the Tom Baker Cancer Centre in Calgary, and finished them at the Margery E. Yuill Cancer Centre in her hometown of Medicine Hat. Now in complete remission, Marroquin is committed to sharing the story of her cancer journey, both to encourage patients to advocate for themselves and to help encourage others to raise funds for improved cancer treatment and care.
Anabell Marroquin: “I had just moved back to my hometown of Medicine Hat from Calgary, and had started my dream job in community development — then that all came crashing down. “[At first I thought] it was just a flu, but I just kept feeling worse. I remember meeting with three different doctors in the ER, and they just couldn’t figure out what was happening. One doctor said, ‘You need to see a specialist at the Foothills Medical Centre.’
“It was February 4 when an oncologist [at the Foothills] came in and told me that I had acute lymphoblastic leukemia, that it was very aggressive, and that if I didn’t move forward with treatment right away, I had two weeks to live. Over the next 24 hours, I had to let my co-workers, family and friends know what was happening. “I started treatment the very next day. I stayed at the Tom Baker Cancer Centre for a whole month. [My mother] actually had to stay in Calgary for a year. I was on the Dana Farber Consortium Protocol (DFCP) treatments [a multi-stage intensive method of chemotherapy that uses a combination of medicines at different points in treatment]. It was pills, and I had a PICC line because of the different types of chemo I was receiving. In the midst of that, because of the type of chemo I was receiving, I had really low platelets and had to receive blood transfusions as well. “The medical staff were so kind, genuine and compassionate. They knew that Calgary wasn’t home for me, but made sure I felt at home. The days I was feeling really sick, they listened. There was humour involved as well. It was nice to laugh during moments I wasn’t feeling well. “After a year [on Oct. 29], I was given the okay to complete the rest of my treatment at the Margery E. Yuill Cancer Centre. “I didn’t know what to expect [with the transition], but it was amazing. The staff at Margery E. Yuill Cancer Centre are basically like family to me. There, I had the opportunity to work with the Alberta Cancer Foundation’s Patient Navigator Program, which made sure I was receiving support. [My patient navigator] connected me to a social worker if I needed someone to talk to. She even supported my family in the new transition of me being back home. As I ended my treatment and transitioned into a new normal, she even made checks during the summer. “My last day for treatment was May 9, 2017. I actually scheduled my appointment so that most of the staff I knew were working, to share that moment with them. “As of September 2018, I am working again, and that has been exciting. I had the best of both worlds being supported by the Tom Baker and Margery E. Yuill Cancer Centres.” LEAP PHOTO WES BELL
46 LEAP WINTER 2019
WHY I DONATE
Town Builders by JULIA WILLIAMS
The Yuill Family Foundationâ€™s ongoing support for cancer care in Medicine Hat is a long-held tradition >
PHOTOS WES BELL
myleapmagazine.ca WINTER 2019 LEAP 47
BILL YUILL, SHOWN HERE AT THE MARGERY E. YUILL CANCER CENTRE, IS COMMITTED TO IMPROVING THE CANCER EXPERIENCE FOR PATIENTS
WHEN BILL YUILL’S GRANDFATHER SETTLED
in Medicine Hat in the 1880s, there wasn’t much of a town to settle into — he had to help make one. “Back then, folks would get together with friends and neighbours to try and build a town and a community,” Yuill says. That entrepeurial attitude has stayed in the family for generations, and continues to shape Yuill’s own desire to work with local causes. Through the Yuill Family Foundation, Bill Yuill and his family support a variety of causes in Medicine Hat, including education, youth sports, and cancer care and research. In 2011, their foundation committed $2 million to the Alberta Cancer Foundation in honour of Yuill’s mother, for whom the Margery E. Yuill Cancer Centre is now named. Margery Yuill, a nurse and volunteer, died of pancreatic cancer in 1965. Yuill remembers her as a kind person — the sort of low-profile, community-building mom who might not always stand out in a region where prominent men dominate the spotlight. “I just thought it was appropriate to name [the cancer centre] after her,” he says. Two years after that generous donation, the Yuill Family Foundation announced it would match proceeds raised by the Royal LePage Breast Cancer Golf Classic. The annual tournament, which takes place at the Medicine Hat Golf & Country Club, supports the Margery E. Yuill Cancer Centre. The 22nd annual golf tournament in July 2018 raised a total of $77,100 48 LEAP WINTER 2019
(including the Yuill Family Foundation’s matching donation), funds that will be used to help improve the treatment experience for cancer patients at the Margery E. Yuill Cancer Centre. For Yuill, the decision to commit to this matching annual donation was a straightforward one. He has been involved with the golf tournament as a participant and informal advisor since his friend Debra Cantalini-Gallant founded the event 23 years ago. The late Cantalini-Gallant was a breast cancer survivor and a tireless fundraiser for breast cancer research and treatment. After she died in 2013, Yuill thought it would be a fitting tribute to support the tournament that had meant so much to her. In fact, the Royal LePage Breast Cancer Golf Classic is important to the entire town. Yuill describes it as one of Medicine Hat’s major summer events, a well-run community tradition that unites participants, local businesses, volunteers
and supporters. The tournament directly affects the lives of many local people. “It’s amazing the number of people who have played in that golf tournament, who have subesequently been treated in the Margery E. Yuill Cancer Centre,” Yuill says. “It’s good to see local people get involved, and to see the proceeds stay in the community to benefit the local people.” For Yuill, it’s rewarding to know that his family’s contributions are helping the people of Medicine Hat and the surrounding region access excellent care without having to travel to Calgary or Edmonton. He’s glad the Margery E. Yuill Cancer Centre makes it possible for people to stay close to their families and friends. For him, it’s part of the community-building work that his family has always done. “I like to think of it as investing in your own community,” he says. “You look after what you can for your friends and your neighbours.” LEAP
MY LEAP MEMBERS OF THE DUNGAREES, FROM LEFT: KIRON JHASS, BEN SHILLABEER, JAMES MURDOCH, ROBB ANGUS AND DARREK ANDERSON
A few years ago, the band wanted to give back to the local community that had supported them from the beginning. “When you’ve been a band for years and years, you’re always asking a lot from folks,” says Jhass. “Like, ‘Come to our gigs’ and ‘Vote for us on the radio.’ So, we asked ourselves, ‘What could we do to give back?’”
Rocking Around the Clock At their annual Gig-a-thon cancer fundraiser, The Dungarees perform for 24 hours straight by CAITLIN CRAWSHAW
IF YOU’VE EVER STAYED UP ALL NIGHT TO STUDY FOR AN EXAM OR
soothe a colicky baby, you know that sleep deprivation is gruelling but ultimately survivable. Still, few of us would volunteer to stand on a stage and perform to a crowd for 24 hours straight. “I don’t think I’ve ever been so tired in my life,” says James Murdoch, a singer and bass player with the country band The Dungarees. For the last three years, he and his bandmates have performed at Gig-a-thon, a 24-hour fundraiser in Edmonton they created in support of the Alberta Cancer Foundation. Murdoch says by the last few hours of the event, everyone is falling asleep on their feet, and the performance takes a decidedly weird turn. “You’re starting to play songs you’ve never played before to change things up, or you play songs you’ve played a million times before, but it starts to feel like you haven’t because you’re forgetting the words,” he says. The Dungarees are a five-member, self-described “true-grit country band” comprised of Murdoch, guitarist Kiron Jhass, drummer Ben Shillabeer, guitarist/vocalist Robb Angus, and steel-player Darrek Anderson. Seven years ago, the seasoned musicians came together to form a band that paid tribute to the musical stylings of classic performers like Dwight Yoakam and Rodney Crowell, moving away from the heavily pop-influenced country music of their time. Over the years, The Dungarees have developed a reputation both within the Canadian country scene and abroad, including Australia, where their single “Anywhere With You” held a place on the music charts for many weeks.
[The Dungarees] decided to put a twist on the tried-andtrue concert fundraiser by playing for 24 hours straight, launching the Gig-a-thon. Raising funds for the Foundation was a clear choice, as Jhass works as a registered nurse at the Cross Cancer Institute, and the band has friends and family members who are cancer survivors. They decided to put a twist on the tried-and-true concert fundraiser by playing for 24 hours straight, launching the Gig-a-thon and recruiting a number of local bands to join them in their efforts. In its first two years, the Gig-a-thon raised $30,000 in total. This year, the show, held at the Have Mercy Southern Table & Bar in October, raked in just over $21,000 via ticket sales, website donations, and silent auction bids. All of the funds go to the Foundation’s Patient Financial Assistance Program, which helps cancer patients in dire financial straits (see page 30 for more information). Murdoch explains that while most health-care costs are covered by Alberta Health Services, many people lose their income because they’re sick and unable to work or need to relocate to Edmonton for treatment. Patients can also face unexpected costs like expensive prescriptions or childcare. “Especially if you’re in a position where you’re just making ends meet, any set-back like that can be disastrous,” he says. After three years of Gig-a-thon, performing for 24 hours straight remains gruelling, but the band has no plans of stopping. Jhass points out that, as the fundraiser becomes better known in the community, it brings in larger contributions for the fund. But beyond the dollars raised, the event is simply good, wholesome fun. “You’re very tired by the end, but you feel like a million bucks, too,” Murdoch says. LEAP myleapmagazine.ca WINTER 2019 LEAP 49
IN 2018, TEAM NOV FUNDRAISED MORE THAN $210,000
Team Spirit Employees at National Oilwell Varco are passionate supporters of the Enbridge Ride to Conquer Cancer by JENNIFER FRIESEN
FOR MANY YEARS, WHILE TAKING LONG SUMMER DRIVES WITH HIS
wife, Tom Hewitt would come across the steady string of cyclists making the 200-kilometre trek for the annual Enbridge Ride to Conquer Cancer. “I kept saying to my wife, ‘I should do that sometime, I should get involved,’” Hewitt recalls. And four years ago, that’s exactly what he did. In 2015, as the regional manager of National Oilwell Varco (NOV) in Calgary, he recruited 40 of his co-workers to join him as a part of Team NOV — and that was just the beginning. The team has continued to ride ever since, and has been one of the top 10 fundraising teams every year. “It just keeps growing. We’re so passionate about it,” says Hewitt. “There are so many people affected by cancer. Everyone on our team knows someone or has a family member who has or has had cancer, so it’s special to be a part of this.” The Enbridge Ride to Conquer Cancer has been running for 10 years in support of the Alberta Cancer Foundation. Every year, 50 LEAP WINTER 2019
thousands of cyclists make the two-day, 200-km journey through Alberta roads as spectators cheer them on. The Alberta Ride has raised more than $74 million since its inception, in support of cancer research, clinical trials and enhanced care programs offered at the 17 cancer centres across Alberta. In 2018, more than 1,800 cyclists started the Ride at WinSport after collectively raising a record-breaking $8.12 million. Unfortunately, poor air quality, caused by blowing smoke from B.C. wildfires, made it unsafe for the riders to continue and the Ride was cut short just a few hours in. “We had some first-time riders on our team,” says Hewitt. “So it was kind of sad that they didn’t get to experience crossing the finish line. You get goosebumps when you cross that finish line. I’ll never forget the first time I crossed it — everyone on the team had tears in their eyes.” Despite the shortened event, Hewitt says the important part was that money was still raised for the Alberta Cancer Foundation. In 2018, NOV’s team of 66 riders fundraised more than $210,000. Team NOV’s riders fundraise for themselves, but they also work together to come up with fun and creative ways to raise money, including a past venture they call “Game of Thrones.” For that effort, the team decorated eight toilets and mounted them on pallets that were sent to people’s yards or businesses. Each toilet was designed with different themes and included a sign reading “Help us flush cancer.” The eight toilets were first sponsored by someone close to the team to be sent to an address of their choice. Once a toilet was delivered, recipients could “re-gift” it to a friend by donating some money to the cause. Members of Team NOV were on the move six nights a week delivering the toilets to new locations across Calgary. Over the two years it ran, the initiative brought in $30,000. Hewitt also takes it upon himself to reach out to NOV’s vendors and customers for sponsorships, and in 2018, raised $57,000 from those donations. The company also sponsored the 2018 finish line by paying to have banners and flags brandishing the NOV logo placed there for both days. By the time the 2018 Ride was called off, 10 riders from Team NOV, including Hewitt, were only 40 km away from the finish line in Sundre and opted to brave the smoke and finish the day’s journey. They were the only team members to bear witness to the NOV banners, but Hewitt said it was wonderful to see. The company is set to sponsor the finish line again for the 2019 Ride. Since 2015, Team NOV has raised $617,000 in total, and shows no signs of slowing. More than 40 riders are already signed up for the 2019 Ride, and Hewitt says they’re committed to breaking the million-dollar mark. “We’re pretty proud of what we’ve done,” he says. “It’s so rewarding, and it puts it into perspective when you see the research and trials that the money goes toward.” LEAP
Together weâ€™re creating MORE MOMENTS for Albertans facing cancer
The magazine of The Alberta Cancer Foundation.