At the age of just three and a half months, my son Carter was put on the list for a heart transplant and, at five and a half months, he received a new heart. We were overjoyed. But then this past August, at the age of nine, Carter was diagnosed with non-Hodgkins lymphoma – a cancer that can arise in transplant recipients. His cancer was diagnosed at stage 3 – and tumours were found on his kidneys and bowels. It has been a tricky process for the doctors to treat his cancer because they do not want to add any more damage to Carter’s kidneys or heart. Despite all that he has gone through, he is the sweetest guy you will ever meet.

I was recently laid off from work and I am now collecting Employment Insurance benefits – Compassionate Care. While I am grateful to receive this financial help, it’s still very difficult to make ends meet each month. The children’s Dad and I divorced in 2013 and he wasn’t really a part of their lives. Last year he passed away with the same heart condition as Carter.

We are facing one of the biggest struggles our family has ever faced, but I feel blessed to have such wonderful children: Olivia is 11 and Carter is nine. I also have two adult children Jack, who is 21 and Alyssa who is 20, who have been with us every step of the way. They have been the backbone holding us all together.

We are sincerely thankful for everything that Kids Cancer Care has done for our family. Pizza Night at the hospital has been a favourite of ours over the past many months. We don’t have the proper words for all the support we’ve received, but it has definitely not gone unnoticed or unappreciated. Thank you Kids Cancer Care.

~ Tracy Thompson

Carter’s photo album

Diagnosed with laryngeal cancer at the age of 18, Julie Deleemans remembers the psychological toll of cancer more than its physical hardship. They removed the cancer with a total laryngectomy — a surgical procedure that removed her larynx (voice box), thyroid and surrounding lymph nodes. 

Julie then underwent three rounds of high-dose chemotherapy combined with 30 rounds of high-dose targeted radiation. Although the cancer treatments lasted only three months, the aftermath will last forever. Julie was left with a permanent tracheotomy — a hole in her throat for breathing. The radiation caused extremely painful inflammation and ulceration in her throat and ultimately damaged the tissue, causing her body to reject the TEP valve — a tracheoesophageal voice prosthesis to help her to speak.

“I was left with a tiny whisper of a voice and permanently disfigured by the surgery,” says Julie. “I could no longer speak normally, so I lost my jobs. I lost friends. Travel plans were cancelled. My life was shattered. I had no idea where I fit in anymore or what I was supposed to do.”

With a health care team singularly focused on her physical survival, Julie struggled without the social support of her friendships and without the professional support of a trained psychologist. It was an extremely isolating and painful experience.

Unable to pursue her university plans or land a job, Julie was forced to go on social assistance and continue living with her family. Instead of diving into a newfound independence, which normally comes with young adulthood, Julie was becoming more dependent.

Permanently disfigured by surgery, Julie struggled with her body image. She struggled with severe depression and anxiety and was later diagnosed with post-traumatic stress disorder. For a few years, Julie was suicidal.

After suffering for several years and trying unsuccessfully to get help, Julie decided she needed to make a change and started an undergraduate program in psychology at the University of Western Ontario. “I was looking for answers to questions that others could not seem to give me,” says Julie. “I was searching for a way to heal myself.”

With the help of a Kids Cancer Care Derek Wandzura Memorial Scholarship, Julie is pursuing a PhD in psychosocial oncology at the University of Calgary Cumming School of Medicine. She is investigating the effects of chemotherapy on the gut microbiome to understand how changes in the gut may affect the survivor’s physical and psychological wellbeing.

With this research, Julie hopes to arm researchers and health care professionals with the knowledge they need to develop targeted interventions to prevent or reverse the long-term effects of cancer treatments.

Julie is interested in putting her research into action by developing the interventions herself. She sees a day when cancer treatments may be supplemented by proper nutritional support (i.e., a healthy diet rich in pre- and probiotics), regular exercise and complementary therapies such as mindfulness and yoga. Patients would also receive social and psychological support throughout the cancer journey.

“After nearly a decade I feel I have finally come full circle — from patient to advocate and now researcher,” says Julie. “My experience with cancer is why I do the work that I do. For many years I wondered why I had survived cancer and what my purpose in life is. Now I understand. I firmly believe the reason I survived and endured such challenges was to prepare me for the opportunity to help others navigate the cancer journey.”

Julie draws strength from her research work and from the words of Carl Jung, the Swiss psychiatrist and psychoanalyst, who famously said, “I am not what happened to me. I am what I choose to become.”

My son Jaxon was just four years old in 2017 when he was diagnosed with medium to high risk acute lymphoblastic leukemia. It was a shock to me. What I initially assumed to be growing pains was actually deteriorating bone marrow density and a spinal compression fracture. Whoever heard of a preschooler with a broken back? I had no idea what lay ahead. I was terrified.

The turning point for Jaxon happened within the first month of treatment, which they call remission induction, where they attempt to destroy all the leukemia cells in the patient’s blood and bone marrow. During this time, Jaxon rapidly put on weight due to the steroids. Not only did his skin itch and his body ache, but he was also dragging around all this extra weight. He was on painkillers that didn’t minimize the pain, but made him feel lethargic. This was quite a change from the active boy we knew. As his mother, this was the hardest thing for me to see, such a drastic change in behaviour. I still struggle with this.

Sometimes I worry that I will never get that boy back. I continue to learn more about the immediate and long-term effects of treatment, as we move through the journey of battling cancer. I’ve learned that chemo injections into the spine causes personality and behavioural changes. It also causes learning difficulties. I tried to prepare myself and my other two children for Jaxon’s eventual weight loss, loss of hair, nausea and mood swings, but I’m not sure anything could have prepared us for the personality changes we saw. How do you mourn the loss of the personality and life we knew as Jaxon? This disease greatly alters and rearranges the lives of a family.

Cancer effects our whole family. Although we all rallied around Jaxon and the well-being of my other sons Ethan and Ryan, my marriage dissolved quickly under the pressure of our new reality. I think Jaxon’s father just wasn’t prepared to see the effects that cancer had on his child. He still has zero interest in dealing with Jaxon’s cancer and the treatments. He even refuses to take the other boys, while Jaxon and I are at the hospital.

My children have shown amazing strength and resilience throughout all of this. Jaxon’s brothers have bonded together to help get us through this in really incredible ways. Jaxon’s twin brother Ryan has become Jaxon’s voice and confidant, while his older brother Ethan takes on a more protective role. When Jaxon’s hair started falling out, Ethan was always there to tell him he looked cool or to stop others from drawing attention to it. As a single mother, I continue to be inspired by how my sons have dealt with the changes Jaxon is going through. They have all played an important role.

Jaxon is still actively fighting this battle and will continue to do so until July 2020. At that time, he will be seven years old and will have battled cancer for most of his life to date. Battling leukemia is long and arduous and even when the treatments are over the battle is not. The treatments can cause depression in kids, which is something Jaxon battles with regularly, saying things like, “Just let me die” and “Aren’t I better yet?” Not surprisingly, he usually says things like this after an extended hospital stay. It’s difficult for Jaxon’s brothers to truly understand just how long treatment is. For most kids, an illness is usually over within a week or two. Being on treatment for three and half years is difficult for children to comprehend.

At this point in Jaxon’s cancer journey, my boys are just grateful for his improved health. We are now more focused on paying what we can forward. We are grateful for the amazing people and organizations who have helped us get through the first very tumultuous year.

I don’t think we would have done as well without the support of Kids Cancer Care. I don’t know how I would give the kids the foundation for emotional healing that Kids Cancer Care provides.

For me, the best decision I made, as a single unemployed parent of three boys, was to focus on my son’s recovery and make sure he was not alone. The support Kids Cancer Care provides our family allowed me to do that. They have been there for me and Jaxon and his brothers through every step of this journey. I know the foundation is there for people just like me, facing the same family crisis that we have faced together. They know the struggles. They know next steps. They have the empathy and the experience of interacting with parents in shock and then throughout recovery. That allowed me to breath, during a time when I felt I was drowning.

I am grateful for my children every day, but as we draw closer to Christmas, I feel even more blessed. I cherish the love of my children and all the love we have in our lives. May you be blessed with health, love, peace and joy this holiday season and everyday of the year.

~ Marie Howell, Jaxon’s mom

Jaxon’s photo gallery

“I woke up at 4 am to hear wolves yapping. I was still pretty groggy, but then suddenly I shot up: ‘They’re yapping because they’re circling me.’ I ran out of the tent to see five sets of eyes in the dark — three on the left and two on the right.”~ Dan Stourac

Dan was 19 years old when he took his first job as a big game hunting guide. He joined his two older brothers Ben and Lorne on a 500-kilometre trek through the Yukon and Northwest Territories. One of the world’s longest trail rides, it would be one of the loneliest and toughest trips he’d ever make, testing his physical and mental stamina in ways that hadn’t been tested in years.

It was their second season up north and, unlike the first season, the weather was unseasonably warm that fall. When Lorne was flown out to do a backpack hunt and Ben and the hunter left to take advantage of the late caribou migration, Dan stayed behind. He was alone with six horses and a promise that they would return in three days.

“Three days! Three days!” says Dan. “They promised they’d be back in three days.”

Horses are essential to the trip, carrying loads of gear and supplies from one campsite to the next. Dan stayed behind to tend to the remaining horses. On the second day, Dan was cooking sheep steaks on the fire when a bear started coming toward him. The bear was about 20 feet away on the other side of the river, jerking his snout in the air, sniffing out his next meal. Dan stood there dumbfounded with a couple of steaks in his hands.

“I started yelling and taunting the bear,” says Dan. “‘Do something! Me or you! Give me a reason!’ I had my shotgun nearby and as I stood there waving and yelling, the bear casually walked on by. I knew he would come back at night, after I untied the horses to graze.”

Sleep didn’t come easily for Dan that night. He eventually dosed off at about 2 am, but was roused from his sleep a couple of hours later.

“I woke up at about 4 am to hear wolves yapping,” recalls Dan. “I was still pretty groggy, but then suddenly I shot up: ‘They’re yapping because they’re circling me.’ I ran out of the tent to see five sets of eyes in the dark – three on the left and two on the right.”

He fired a shot into the night and five sets of eyes disappeared. Losing any hope of sleeping that night, Dan built a large fire and waited for the sun to rise. When the sun did come up, Dan set out to gather the horses. It was a bit unnerving for Dan as he tracked the horses’ hooves, which were overlaid with fresh wolf tracks. He brought back all six horses. They were a bit edgy and nervous, but untouched by the wolves.

“When Ben and the hunter didn’t return after three days, my head went to a bad place,” says Dan. “I wondered if they were hurt. I couldn’t go look for them because you can’t pack and trail six horses on your own. I couldn’t leave the campsite because the wildlife would destroy our gear, rummaging for food. I was pinned down and assuming the worse.”

No strangers to adversity, Dan and his family had already battled their worst nightmare, when at age four, he was diagnosed with leukemia. At the age of seven, still on treatment, Dan and his brothers went to their first summer camp through Kids Cancer Care. The boys grew up going to cancer camp and Dan credits camp with building the strength and resilience he needed to survive his experience in the Northwest Territories.

“Camp is so much more than putting a smile on a kid’s face,” he says. “A smiling face is just a small glimpse into the impact you’re having as a donor. You’re building a foundation for growth. You’re building character. You’re building courage and resilience. Camp is showing kids, who will grow up and show others, that life is amazing. It isn’t just fueling an environment where kids can rest and have fun. It’s fueling an environment of human potential and growth, showing kids how to believe in themselves and how to become better people. That’s what camp was for me.”

Alone in the wilderness with little more than his thoughts, Dan started missing cancer camp badly that September. “My head space was really bad,” he says. “That summer was the first time I hadn’t been to summer camp and I missed it. I missed my friends. I missed the counsellors. I missed everything about it. I decided that if I couldn’t be at summer camp, I would bring it to me. I was trying to keep my head straight, so I started writing to divert my thoughts. For days, all I did was eat and write in my journal. I knew if I got out of there alive, this would be my first novel and I would dedicate proceeds to Kids Cancer Care.”

On the seventh day, Ben and the hunter returned, all smiles and swagger, showing Dan the sheep and caribou they harvested.

Eventually, Dan’s cancer-related health issues would force him to quit guiding for a living. With a bad heart and Raynaud’s syndrome, his body struggled to tolerate the shock of subzero temperatures.

“We were tenting in minus 20 overnight,” recalls Dan. “I started having really bad heart palpitations that third season. My heart was beating 230 beats per minute. You could see my chest vibrating. I lost 23 pounds of muscle and had to cut my third season short. I had to pick a different path in life.”

Eliminating the possibility of ever guiding again, Dan returned home, taking on odd jobs, while finishing and self-publishing his first novel, Grim’s Prodigies, under the penname Remmy Stourac. Facing his own mortality on more than one occasion, in his first novel, Dan takes on death once again — this time on his own terms.

Grim’s Prodigies is the first book in a fantasy series called The Reaper’s Inception. Dan’s playful spirit and love of language are evident from the start. Its lively energy and easy humour stand in stark contrast to its serious subject matter.

The Grim Reaper in Dan’s story is no static character. He struggles and grows over the course of the book. He transforms from a soulless demigod, ruthlessly taking the lives of his victims, into a being who cares about the people he takes.

“I wanted to change the perception of death,” says Dan. “Death changes the perception of himself in the book. He’s trying to make these kids, the four prodigies, appreciate life and keep the world going even with all its pain and suffering.”

Cancer and the chance to go to camp each summer similarly changed Dan’s perspective on life and death. “Camp totally transformed me. It gave me a new appreciation for life and a willingness to totally embrace life and all its setbacks.”

Later, as a counsellor and volunteer at Camp Kindle, Dan saw the transformative power of cancer camp in the lives of young campers. But this time he was able to see it as an adult.

“Camp Kindle has this challenge-by-choice philosophy and it is incredible to see how this seemingly insignificant thing is so meaningful and life-changing for kids,” Dan says. “The summer I was a counsellor, there was this little girl who was terrified of heights. She must have been about 10 or 11. She’d lost her brother to cancer and it was super terrifying for her to go on the giant swing. There was a lot of talking with her, when suddenly she decided: ‘I’m gonna’ do it for my brother.’ She went right to the top. That moment on the giant swing literally became a choice for her and it was a life-defining moment. Tears were streaming down her face when she came down. She was so happy: ‘My brother and family are sure going to be proud of me.’”

Dan believes you need to give young people a chance to choose and then wait to see what they do. If you give them a choice and a chance to step outside their fear, they may not be so afraid to stand on their own when the peer pressure sets in later in life. This is what camp did for Dan and why he is dedicating a percentage of the proceeds from his first book to Kids Cancer Care.

“Camp will always be my home,” says Dan. “I will always take the opportunity to give back to Kids Cancer Care. Everyone should have the chance to see camp in action and watch these kids grow.”

If you’re looking for a Christmas gift for that person who has everything, why not order a copy of Grim’s Prodigies? Ten per cent of the proceeds will go to Kids Cancer Care and you’ll be opening a door to an epic new world of monsters and mortals and a refreshing and authentic new voice in sci-fi fantasy. To order your copy or for a full book review, visit http://remmystourac.com/.

Photo gallery

Your gifts helped build an innovative research space that is pushing the bounds of laboratory design and scientific collaboration

It took leadership and a few design risks, but pediatric cancer researchers in Calgary now have a modern, open-concept collaborative research space to call home — thanks to you.

The new laboratory space provides the perfect environment for researchers, grad students and postdoctoral scholars to investigate the biology of childhood cancer and blood disorders.

Challenging how we think about lab design: modifiable workspace 

Guided by her vision for a transformative lab, Dr. Jennifer Chan, the Kids Cancer Care Chair in Pediatric Cancer Research, worked with IBI Group Calgary and the University of Calgary Facilities team of architects and planners to push boundaries and challenge traditional notions of laboratory design.

The result is an open-concept lab with shared workspaces equipped with fully configurable benches, specialized research rooms, student workspaces accessible through sliding glass doors and glass-walled supervisor offices along the outer edges to create an unbroken sight line across the facility.

“Our new space is very different than any other on campus,” says Chan. “The lab design allows for easy reconfiguration to accommodate future technology or new equipment — it’s like Lego. That’s the beauty of it. We’re working as we intended in a modifiable space. Although complete future-proofing is a challenge, we can still anticipate that change will happen.”

Jane Ferrabee, the U of C architect, and the U of C Facilities team that designed and built the space pushed themselves to think about their standards more critically to provide a space that allows researchers to work more efficiently and collaboratively.

“We saw this as an opportunity to explore innovation and go to new places in lab design,” says Ferrabee. “It challenged everyone involved — from electrical, IT and lighting to the lock shop and furniture — to think differently about the way we do things.”

Lab design fosters environment for improved teaching and learning

With the new research facility, Chan saw an opportunity to create an improved team environment, to cultivate new ways of teaching and learning in the lab and to strengthen the connection between medicine and basic science.

“We’re changing the culture of how we work — any time there’s a change, there’s an opportunity to improve the work culture,” says Chan. “We’re promoting the culture of the group with our decisions.”

Chan explains how the new lab set-up fosters collaboration: With the old lab space, it was like “sitting at a bar, facing forward with your food in front of you — you’re in your own compartment. This new approach is like a dinner setting, where everyone is facing each other with food in the middle, and everyone is communicating and collaborating around the table. We took our then-current notion of open concept and looped it into a circle.”

With private spaces on the outer edge, common spaces in the middle and sliding glass doors connecting everything together, students can get their work done in the quiet workspaces, while still keeping an eye on what’s happening in the lab. This spatial layering means students are close to their group, their work and their supervisors’ offices, allowing for close-knit interactions and mentorship between student and supervisor. The set-up also facilitates passive supervision, which is important for safety and productivity.

“It builds a sense of community,” says Chan. “You see someone working and it inspires and motivates you to work.”

Jennifer Chan, MD, is an associate professor in the departments of Pathology and Laboratory Medicine, Oncology and Clinical Neurosciences at the Cumming School of Medicine. She is the Kids Cancer Care Chair in Pediatric Cancer Research, a member of the Terry Fox PROFYLE initiative, Alberta Children’s Hospital Research Institute, the Arnie Charbonneau Cancer Institute and the Hotchkiss Brain Institute.

The new research space was made possible by generous donations from you through the Alberta Children’s Hospital Foundation, Kids Cancer Care Foundation of Alberta and the Alberta Cancer Foundation.

— Revised with permission from the University of Calgary

The speed of the car picks up and they enter what racers call the 100-mile-an-hour club. It is at that moment that Connor’s whole face lights up.

Sitting in a coffee shop in Calgary’s inner city on a chilly February afternoon, Brent Thorkelson describes one of his most memorable days.

In the sunny Okanagan on a gorgeous May long weekend, Brent is behind the wheel of his 2007 GT3 Porsche. A Porsche lover since he was five-years-old, Brent knows this car well.

His passenger is a young man named Connor. Earlier that day, Brent had met the shy preteen. Brent says, “Connor seemed so sad, he was quiet, almost depressed” as he climbed into his race suit, put on his helmet and was strapped into the five-point harness.

And he had every reason to be. This weekend was a rare break from his childhood cancer treatments.

Brent and Connor are driving up Knox Mountain as part of the Knox Mountain Climb, an annual event in Kelowna. Trees blur past them and the road winds. In just two minutes they have travelled 5km and climbed 800 feet. They’ve hit most of the ten turns on the route. The speed of the car picks up and they enter what racers call the 100-mile-an-hour club.

It is at that moment that Connor’s whole face lights up.

Brent can’t help but smile. It’s not the first or the last time he will venture up Knox Mountain. In fact, he does it every year.

Hands Together for a Cure is a passion project for Brent, his wife Lenora and their son Ben. Brent has always been involved in motorsport and wanted to use his passion to give back.

As an Advanced Care Paramedic for over 28 years, Brent finds himself on the scene of countless “accidents.” But he doesn’t love the word: “The term accident infers that nothing contributed to the event. More importantly, that the event was not preventable. As a practitioner, we see numerous incidents, but very few accidents. You can’t get a truer definition of this word than a child being afflicted with cancer. He or she did nothing what so ever to be “saddled” with this unforgiving disease.” The Thorkelsons wanted to do something to bring joy and laughter into these children’s lives.

That’s where the Knox Mountain Hill Climb comes in. Brent has been going to the Knox Mountain Climb since he was five. The event includes a beer garden, car show and the competitive climb. His dad, now 88, still joins him every year. He knew that something that brought him so much joy could also bring some happiness to these kids, if even just for a day between treatments.

Brent and his Porsche do about 12 to 13 drives up the hill through Hands Together for a Cure each year. The ride is unique in that it gives children an experience they wouldn’t otherwise get and at the same time it is a fundraiser. The kids ride for free, thanks to year-round fundraising through Hands Together for a Cure and donations from other drivers in the Knox Mountain Hill Climb. Brent sells the remaining spots at $500, with all the proceeds going to childhood cancer research, including Kids Cancer Care.

Humbly, Brent shares what goes into making the event a success: a website to maintain, pounding the pavement to sell rider spots, coordinating the kid spots with charities in British Columbia and Alberta, organizing transportation for the families (thanks to CanWest Air Charters), silent auctions, appearances, picking up cheques from donors. That doesn’t even touch upon the upkeep of the car, which is covered in handprints of children who have had cancer – a constant reminder for Brent and those involved as to why they do this every year.

And it’s all worth it.

Last year, Hands Together for a Cure broke $115,000 total raised in 6 years.

Connor and Brent are at the top of the course and start heading back down the hill. The other drivers unbuckle (no easy task) and get out of the cars. Marshalls line the route and give a standing ovation.

And on the way down, all Connor could say was, “Wow!” Brent can still hear the words clearly in his mind, like it was yesterday.

All the funds raised from Hands Together for a Cure are making a difference in the lives of children affected by cancer. The funds donated to Kids Cancer Care research to change the course of childhood cancer for the approximately 1,400 children diagnosed in Canada every year.

Brent smiles as he shares that Connor is cancer-free today, something he hopes for every child fighting cancer. And that is no accident.

To book your ride with Hands Together for a Cure at The 2018 Knox Mountain Climb, click here.

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For the first time in Canadian history, more than 30 pediatric cancer research and funding groups have joined forces through the Terry Fox PROFYLE initiative, a pan-Canadian project that will give young people with high-risk cancers a fighting chance.

Short for PRecision Oncology For Young People and spearheaded by the Terry Fox Research Institute (TFRI) in Vancouver, PROFYLE is providing $16.4 million to date to establish molecular profiles of patients’ tumours, which have resisted conventional therapies, in order to identify potential new avenues for treatment.

Thanks to your support, Kids Cancer Care is a partner in this national research effort that is pooling resources and bringing together research and clinical expertise to give kids with no more treatment options hope.

PROFYLE was developed with kids like Joel Zukowski in mind. Joel was 10 years old when he was diagnosed with medulloblastoma, a type of brain cancer. He relapsed at the age of 15 and exhausted all treatment options. Sadly, Joel passed away in October 2015 at the age of 16, after a long courageous battle with the disease.

One of the hardest days in Ed Zukowski’s life was telling his 16-year-old son there was no hope left in his battle with cancer. “It’s one of the most difficult discussions I had with Joel, figuring out how to tell him there was no more hope. He didn’t give up. He kept trying. That’s why research is important. You can’t give up.”

“We think about the day Joel was first diagnosed,” says his mother Dale Zukowski. “What if there was no understanding of chemotherapy, or radiation or surgery. If they didn’t do research, Joel may not have made it more than six months after being diagnosed.”

Project lead Dr. David Malkin, based at The Hospital for Sick Children (SickKids) in Toronto, says PROFYLE is bringing together the entire pediatric and young adult national clinical and research expertise to offer precision medicine in a way that has never before been offered in Canada.

University of Calgary clinician-researchers Dr. Victor Lewis and Dr. Jennifer Chan will co-lead the research project in Calgary. Lewis will help identify and treat patients, who may benefit from being enrolled in PROFYLE. Chan will ensure the collection of and access to the right kind of tissue and fluid samples for research into treatment options. The nationwide bio-specimen collection protocols are being developed by Chan, as is the associated clinical data repository, which will be facilitated by the Clinical Research Unit at the Cumming School of Medicine.

“We now know brain cancers in adults are not the same cancers that develop in children,” says Chan, who holds the Kids Cancer Care Chair in Pediatric Oncology Research. “We’ve learned that while the tumours may appear the same to the naked eye, and even under the microscope, at the molecular level, they are very different, and that means we need to develop new treatment protocols for kids.”

Chan’s lab is supported by investments from the Alberta Children’s Hospital Foundation and the Kids Cancer Care Foundation of Alberta made possible by you.

“We are thrilled to see the Terry Fox PROFYLE initiative come to life,” says Christine McIver, Founder and Chief Executive Officer of Kids Cancer Care. “If we are going to make any progress in treating incurable children’s cancers, we need collaboration at all levels of society – government, industry, universities, hospitals, charitable organizations, individual and corporate philanthropists. PROFYLE is that collaboration and will bring hope to Canadian families who currently have no hope for a cure. We’re so grateful to our generous community for making this possible.”

“It’s generous support from the community that makes innovations and advancements for kids possible,” says Saifa Koonar, President and CEO, Alberta Children’s Hospital Foundation. “Working alongside partners like Terry Fox PROFYLE and Kids Cancer Care helps us keep kids’ health a research priority.”

While there has been dramatic improvement in treatments and outcomes for many pediatric cancers over the last three decades, for the 20 per cent of young people whose cancers continue to spread, return, or resist treatment, outcomes remain grim.

“Maybe in 20 years a child with the same cancer as our Joel-Bear survives. I wish that was my kid, but Joel lived six years longer than a kid 20 years ago and we’re very grateful for that,” says Joel’s mom.

Thank you for bringing hope to children by supporting research.

Jennifer Chan, MD, is an associate professor in the departments of Pathology and Laboratory Medicine, Oncology and Clinical Neurosciences at the Cumming School of Medicine and is a member of the Alberta Children’s Hospital Research Institute, the Arnie Charbonneau Cancer Institute and the Hotchkiss Brain Institute.

 Victor Lewis, MD is an associate professor in the departments of Oncology and Pediatrics at the Cumming School of Medicine and a member of the Alberta Children’s Hospital Research Institute and the Arnie Charbonneau Cancer Institute.

In early 2008, my five-year-old daughter Madeline started feeling unwell. She seemed to be catching lots of colds and was often complaining of stomach trouble. At first, the doctors believed she was having some digestive problems and sent her for a variety of tests, but all the tests they ran came back indicating that nothing was wrong. Seeing as Maddie was just five years old, the doctors then started to consider that maybe her symptoms were more emotional and that maybe she was just trying to get our attention.

By May, Maddie’s symptoms were getting worse and she was throwing up every single morning. When this first started happening, she would throw up right after she woke up, but then she’d be fine and able to carry on with the rest of her day. As things progressed, she would throw up two or three times after waking up. We were really starting to worry, but because Maddie always felt better by lunch time and was not really losing any weight, the doctors were stumped. We were then referred to a pediatrician and sent for some ultrasounds. Six weeks passed. Then Maddie started complaining of headaches and being dizzy.

On Sunday, June 15, 2008, Father’s Day, she got so sick and dizzy overnight she couldn’t sleep, so in the early hours of the morning I took her to the emergency centre at Children’s. The nurses did an assessment in triage and said Madeline was showing the signs and symptoms of meningitis because she had jittery eyes, which they call nystagmus, and her head was tilted to one side. A CAT scan was immediately ordered. After the CAT scan was finished, we went back to our room in emergency and I heard them page an emergency room doctor to come to radiology. I looked at my sister, who was there with us, and said “It’s bad.”

Soon after, a social worker and the doctor came into the room. The doctor knelt down in front of me and said, “We have found a brain tumour.” At that point, all I could do was say, “Thank you,” as it had been six longs weeks of illness and suffering for Maddie. I was just so relieved that they were finally acknowledging something was really wrong with my child and now I knew it was something that could be fixed.

Maddie was admitted right away and scheduled for immediate brain surgery to remove the tumour. Within 48 hours she was brought into the operating room for surgery. The eight hours it took to finish her surgery were some of the longest hours of my life. I remember thinking that day that the surgery to remove this tumour was taking longer than she took to come into this world.

Going into the surgery they didn’t know what the results would be. They told me Maddie might not be able to walk or talk again as they did not know how badly the tumour was enmeshed into her brain. As soon as the neurosurgeon came into the waiting room, I immediately jumped up and ran over to him. The first thing he said to me was that I could “Sit down.” I replied, “No, I am okay. I do not need to.” The doctor gave a back sigh and jokingly replied to me, “Well after that long of a surgery I need to!”

The results of Maddie’s surgery were super positive. She was breathing on her own and the surgeon told us that the tumour wasn’t quite as stuck as they had thought it would be. At this point we really believed everything was going to be all right!

The first thing Maddie asked for when she woke up in the ICU was Swiss Chalet. At this point we didn’t know if the tumour was cancerous or not. We spent ten more days in hospital, while she was recovering, waiting for pathology.

The results came back: Maddie had cancer.

She was diagnosed with an ependymoma anaplastic tumour. Because this type of tumour is a chemo-resistant tumour, the only option for recovery was surgery and radiation. Even though they had removed all of the tumour during the surgery, Maddie would have to do six weeks of radiation therapy as well, because they explained to us, removing the tumour is like scraping a bowl of ice cream and they needed to ensure they got every last bit of it.

We were also told Maddie had a 50% chance of the tumour reoccurring, but that if it was to reoccur, it would most likely happen in first year or so. The neurologist told us they would be monitoring her with MRI scans every four months, so if the tumour started to regrow, they could catch it quickly and she wouldn’t get that sick again.

Maddie started radiation about a month after her surgery. We went over to the Tom Baker Cancer Centre every day for radiation. At the beginning, the radiologist said she would have to be sedated as she was so young, but it was really important to us to work with Maddie, so she would not have to be sedated. The first time they tried to do her treatment she was far too scared and wiggly. I asked them if she could take a break and try again. While we were there, another little girl came down the hall who we had met on the unit. She also had a brain tumour. She was arriving for her daily radiation treatment. Her mom and I talked about it and her mom thought maybe if Maddie could watch her daughter have radiation, Maddie might be able to do it too. Maddie went in and watched this brave little girl on the screen and then she decided she would be able to go in and do her radiation – wiggle-free.

Maddie finished treatment on September 30^th, 2008 and then waited. We returned to normal life and moved on. Every four months Maddie would go in for an MRI and the results always came back with no evidence of disease. We were absolutely thrilled. We hit the first year milestone – nothing. And then the second year milestone – nothing. We believed this is it, we’ve beaten it. So we let our guard down.

In 2010, everything was going so well. My husband and I bought a new house and soon after found out we were pregnant with our son. Maddie was super excited to be a big sister!

Maddie was scheduled for her routine MRI in April 2011, but we pushed it back a couple weeks, so I was able to go with her, as my due date was also around that time. A few days before she was to have her MRI, she vomited before school. At first I just thought she had the flu as it had been three years since her treatment and I never really worried anymore that the tumour could be back. After she threw up, she asked if she could go out to play because she said she felt much better. My stomach dropped and I started to worry. But then I convinced myself I was just being silly, because Maddie had just had a clear MRI in December.

Early the next morning, Maddie came into my room and told me her head hurt and she threw up again. I was on the phone with oncology by 8 am that morning. After hearing my concerns, the primary nurse told us that since we had an MRI scheduled on the following Monday, we should just wait for the MRI unless something changed or she got worse. Shortly after hanging up, her primary oncologist called me to see what was going on. I told the oncologist that Maddie was throwing up in the morning again and I could see that her eyes were doing the jiggling again. The doctor said she couldn’t justify an emergency MRI because one was already scheduled, but suggested we bring Maddie to the clinic the next day and they would do a CAT scan.

The oncologist who was on call in the clinic that day did a quick check and said Maddie looked really good and probably just had a cold. She went for the CAT scan and we sat there waiting and waiting and waiting. Finally, the doctor came out and gestured for me to come into his office. Once inside, he told me it looked like the tumour had come back. He explained they couldn’t see the extent of it on the CAT scan, but they said Maddie would probably be scheduled for surgery right away. An MRI was planned for that afternoon to see how bad it was.

One of the hardest things I have ever had to do in my life was return to the waiting room and tell Maddie that her cancer was back. She was just eight years old. I said to her, “Don’t worry, you beat it the first time. You can do this. And we’ll get through it.”

That afternoon they did the MRI and after another agonizing wait, our regular oncologist gestured to my husband and me to come in and talk with her. Just us.

On May 12, 2011, my husband and I were told the tumour had relapsed and metastasized to Maddie’s brain and all down into her spine and that the neurologist had determined that the tumour was inoperable. We were also told it was unlikely they could do more radiation due to the fact that Maddie had already had so much.

We were in total and absolute shock. We had a six-week-old baby and a daughter with an inoperable tumour. Our oncologist told us she would bring Maddie’s case to the tumour board next week and that she would see what options they could find for us.

They didn’t tell us that day that Maddie was going to die, but we all knew her prognosis was not looking good.

A week later we found out that the tumour board had agreed to enroll Maddie for a clinical trial, which was a chemotherapy trial for this specific type of tumour relapse. So we enrolled in the trial and went to the Stollery Children’s Hospital in Edmonton, where we started chemotherapy treatment. Luckily Maddie was able to do this type of chemo at home, so the treatment wasn’t too invasive.

All of the doctors and social workers started talking to us about quality of life for Maddie. We decided from then on, we would ask her every day what she wanted to do and, whatever she decided, we would do it. So we went to the Science Centre, we went to the Titanic Exhibit, we went shopping, we went to West Edmonton Mall and stayed in a theme room, and she dyed her hair pink and purple.

Maddie told us that what she wanted most of all was to see the ocean. We booked a trip to the Mayan Rivera for Maddie and 16 of our family members. Right before we were scheduled to go, she was so sick I debated cancelling the trip. Our doctor said to us, “She can vomit at home or she can vomit with an ocean view.” So we went. And she never got sick once. She was on the beach from sun up to sun down basking in the sun, enjoying her family and dancing. Every day at noon we went back to the room so she could take her chemo – otherwise it was the most memorable and wonderful family vacation.

On Saturday June 25^th, 2011, just six days after returning from Mexico, Maddie collapsed at home and was rushed to the Alberta Children’s Hospital by ambulance. She had severe hydrocephalus, an accumulation of fluid on the brain. In six weeks the tumour had grown five times the size it had been at diagnosis. It had blocked her ventricles. It was at this time that we were finally told that Maddie was palliative and there was nothing more the doctors or treatment could do for her.

They told us to prepare ourselves; Maddie was going to go.

In the middle of July we moved into the Rotary Flames House. Shortly after, we discovered that Maddie was blind. She didn’t even tell us. She was so brave and strong she did not want us to be upset. We only figured out, because she was missing the bowl with her spoon.

Near the end, Maddie was withdrawn and quiet most of the time. One evening she suddenly had a wonderful burst of energy. She asked for pizza and told us she wanted to go home. We washed her hair and went for a nice walk. Our preference was for Maddie to pass away at home, and since her pain was finally under control, we started preparing to go home.

But the next day, July 25^th 2011, Maddie couldn’t seem to wake up, and was in and out of sleep for most of the day. She was able to talk and communicate with us, but she was just very sleepy. She did ask for dinner, she wanted chili and bannock, but when her dinner arrived, she just said, “Ok,” and went back to sleep.

In the evening, I was about to give my infant son a quick bath, when my sister called out to me to ask me if Maddie was breathing because her lips were turning blue. The Nurse came in right away and checked on Maddie. She told me it was time and to get my husband into the room right away. Maddie passed away quickly and peacefully with all of us by her side and we were so extremely relieved that she was no longer in pain or suffering.

We were first introduced to Kids Cancer Care when Maddie was first diagnosed. She went to camp SunRise that summer. Our family has also attended Family Camp at Camp Kindle since 2008 and we now go to Bereaved Family Camp each year too.

We have met so many amazing people through the foundation. They have all been so wonderful to us, right from first diagnosis.

Maddie was registered for her first overnight camp in summer 2011 after being at Kids Cancer Care’s SunRise day camps for three years. She was so excited. They used to make pillow cases for all the campers with their name on them. Maddie was too sick to attend camp, so Kids Cancer Care staff members Mary and Sharlene came to see us at Rotary Flames House. They brought Maddie her yellow camp bucket hat and her camp pillow case. Maddie loved that they brought this little piece of camp to her.

I just love Mary. Mary was the first staff person that connected with Maddie at our first Family Camp. Maddie was shy and took a while to warm up to adults, after what she had been through. But she adored Mary right from the start and was glued to her side the whole weekend at camp. Mary even did Maddie’s hair and nails at a make-shift spa session at the camp. We had such an amazing time.

Kids Cancer Care is still there for us and I still attend everything I can.

After Maddie passed away, we went on to have another son in 2013, and a year later, we adopted a little girl from birth. Our kids attend all the Kids Cancer Care events and functions and we can’t wait for next summer when all three get to go to camp SunRise together for the first time!

I sit on the Parent Education Committee that was developed last year and have also done media interviews for Kids Cancer Care. Any way I can help and give back, I do. People sometimes say to me “Why do you still go to all those things? Why do you put yourself through that?”

This is why: so we can continue to support other families who have been through what we have been through and so we can surrounded ourselves by people who truly understand.

At Kids Cancer Care, you don’t have to apologize for the way you feel, or for being emotional. Everyone just knows and it’s okay, and it’s accepted. And all the kids are just so resilient and wonderful. Their bravery and strength inspire me to do better every day.

Most importantly, I always want our children to have an appreciation and an understanding of the life their sister had. They get to do all these amazing things that not a lot of kids get to do, because of everything their sister went through. To me, this is and will always be, Maddie’s lasting legacy to them.

– Allison Campbell, Maddie’s mom

The above blog first appeared on Kids Cancer Care’s website in 2017.

Here is a 2022 update from Allison:

Right now, across Alberta, hundreds of kids are getting excited to attend summer camp at Camp Kindle for the first time since the pandemic and make a lifetime of memories. 

It breaks my heart that Maddie never got to attend sleepover camp, but this year, your donations will send Maddie’s siblings to overnight camp! They get to attend their very first sleepover camp with other children who have or have had a brother or sister with cancer.

With your support, Calgary researchers are investigating an aggressive brain cancer with the hope of slowing – and one day stopping – its fatal progression.

Last year, Lyndsay and Kevin Heaton faced the unimaginable. After a year of aggressive cancer treatments, their daughter Jessica passed away just after her first birthday. Losing Jessica is devastating for the Heaton family, but they are confident her short life will have purpose. When asked if they would consider donating her tumour to medical research, the Heatons knew exactly what that purpose was – to advance glioblastoma research for children like Jessica.

With your support, the Childhood Cancer Research Program has recruited a bright new cancer researcher to Calgary. Dr. Marco Gallo recently joined the Experimental and Applied Therapeutics research effort at the University of Calgary and Alberta Children’s Hospital Research Institute, where he is investigating the epigenetics and epigenomics of brain tumours, with a special emphasis on glioblastoma (GBM).

GBM is a highly aggressive cancer that begins in the brain and almost always recurs after treatment. Most GBM patients do not live longer than a year after diagnosis and fewer than five per cent are alive after five years.

Dr. Gallo is hoping to change this.

Studying the DNA structure of GBM cells, Dr. Gallo and his research team have discovered that GBM stem cells have a characteristic way of packaging their DNA. Armed with this knowledge, Dr. Gallo hopes to develop targeted drugs, capable of altering this DNA packaging to minimize, and one day prevent, the chances of relapse.

While their ultimate goal is to eradicate GBM altogether, their immediate goal is to turn GBM into a chronic illness – something that is no longer life-threatening but requires life-long management.

First, they must learn how to keep the cancer from growing and spreading. To do this, Dr. Gallo and his team are studying GBM samples from U of C’s Tumour Bank. Generously donated by families who have lost loved ones to glioblastoma, these tumour samples are vital to Dr. Gallo’s work. They are accelerating the progress of finding a cure.

“We are so grateful for the families who have made the very emotional decision to donate tumours to support our research,” says Dr. Gallo. “We take this responsibility very seriously and we are determined to reduce the number of families who face this diagnosis and provide more options and more hope for the ones who do.”

Knowing that researchers are working to help families like their own gives Lyndsay and Kevin hope. “Their fight is our fight and through Jessica and the wonderful researchers who work with her legacy, we’re able to have hope that someday other families won’t have to experience the loss of their children,” says Lyndsay. “This work very much helps keep our hope alive and underscores for us that Jessica’s life was so incredibly special and meaningful.”

Thank you for keeping hope alive 

Adapted with permission from the Alberta Children’s Hospital Foundation.

When CANA partnered with Kids Cancer Care to celebrate its 75^th anniversary year, they knew their employees would jump in to raise funds and meet their $75,000 fundraising goal. What they didn’t know was that even the children of CANA would get involved.

CANA launched its 75 for 75 fundraising campaign in December 2016 and within months the kids of CANA employees were already rolling up their sleeves to help. They sold firewood, held bake sales and bottle drives. Six-year-old Clayton McLeod even turned his birthday into a fundraising moment, encouraging friends and family to donate to Kids Cancer Care in lieu of birthday gifts through our Give More Birthday program. Clayton raised over $900 for Kids Cancer Care.

Three-year-old Zoey Van Staalduine also rose to the occasion. “We sold bundles of firewood, collected bottles and cans and made cookies and brownies for a kids bake sale at CANA,” says Zoey’s mom Christie Simpson of Shepard Development, a CANA Group company. “I wasn’t sure if Zoey would understand what we were doing, because she’s only three, but I was amazed at her level of understanding, interest and compassion. We had a lot of fun doing our Kids Cancer Care projects on weekends as a family. Zoey was quick to remind us on Saturday morning what we had to get done for Kids Cancer Care each weekend! She was our chief baker, firewood bundler and bottle depot unloader.”

After a full year of fundraising, CANA employees raised $101,704, far surpassing their $75,000 target. CANA employees held bake sales and yard sales, shaved their heads, ran in the Calgary Marathon and sponsored a table at the Dad and Daughter Gala. Their president Fabrizio Carinelli took part in Kids Cancer Care’s High Hopes Challenge and finished as the top fundraiser.

But that’s not all. CANA employees and sub-contractors also gave their time, carrying out renovations at Camp Kindle at no cost to the foundation.

“There is no other place on earth quite like Camp Kindle,” says Luke Simpson, Director of Business Development and Marketing at CANA. “When I came to my High Hopes Challenge reunion this year and I got to see the kids at the camp and see the smiles on their faces again, the feeling was magical; I knew right then that this was going to be the charity we worked with for our campaign. I was overwhelmed by the response we got from our clients and sub-trades. Without them none of this would have been possible, so I want to thank all of them for making this campaign the success it was.”

There’s no doubt, that CANA is creating a culture of giving right from the top. When the company launched the fundraising campaign, John Simpson, Chairman of the Board, Owner and CEO of CANA, promised to match his employees’ fundraising efforts dollar for dollar. With Mr. Simpson’s generous matching gift, their total contribution to Kids Cancer Care this year is $203,408.

“We are so grateful to everyone at CANA,” says Christine McIver, Founder and CEO of Kids Cancer Care. “Each summer, we send about 485 kids to camp and these funds will help send 135 those kids to Camp Kindle next summer. Thank you CANA! Happy 75^th Anniversary!”    

A YEAR OF GIVING

CANA’s 75th Anniversary BBQ – CANA employees, sub-trades and their families experienced the magic of Camp Kindle firsthand during a company BBQ. Photos by Don Molyneaux Photography.

Spruce Meadows – CANA hosted families from the Kids Cancer Care community at their suite at the Spruce Meadows Masters Tournament.

CANA Stampede Event – After months of fundraising, Luke Simpson and Dwayne Dubois of CANA shaved their heads for children with cancer at CANA’s annual Stampede party.

High Hopes Challenge – CANA president Fabrizio Marinella took part in Kids Cancer Care’s High Hope Challenge and raised more than $20,000, making him the top fundraiser of the 15 corporate leaders who participated. Photos by Brangwyn Jones Photography.