By Olivia Piché
Every cancer journey has its highs and lows; it can be challenging, yet can also hold vital pockets of hope. Some patients become active volunteers, and some family members create long-lasting legacies on behalf of their loved ones, all while holding onto hope for the future of cancer research. The patient experience continues to evolve, bringing positive change, including dedicated supports and resources for the younger population, a state-of-the-art cancer centre with improved patient-focused care and promising cancer clinical trials.
Patient experiences help to shape and advance more excellence in cancer care today and in the future.
More excellence in pediatric cancer care: Evelyn Roy.
Eleven-year-old Evelyn Roy loved Star Wars, Harry Potter and dance parties. She had a quick, dry sense of humour and is described as “bright, joyful and so much fun to be around.” In early 2020, Evelyn passed away from stage 4 neuroblastoma, a cancer that starts in immature nerve cells and commonly affects babies and young children. Her legacy is remembered through the impactful work she inspired, helping other children facing cancer.
Evelyn’s family — mom Heather, dad Mike and sister Harper — stood by her side through every step of treatment — holding her hand during chemotherapy, MRIs, X-rays and CT scans. But radiation therapy is different. Children must face it alone, and the unfamiliar sights and sounds of the cancer centre can feel anything but kid-friendly.
“The feeling of that big steel door closing behind Evelyn just made my heart sink. I wanted to be with her, but I couldn’t safely be in there,” recalls Heather.
While anxiety-inducing for both parents and children, Heather explains how the staff went above and beyond to make Evelyn feel less alone by playing her favourite music and talking to her through the speaker.
“It means so much, and we are forever grateful for how much compassion they put into her treatment.”
Heather continues to be an advocate and local leader in the pediatric cancer community. Driven by her desire to ease the cancer journey, she strives to equip cancer centres with vital resources that make a lasting impact. Through her support of programs and projects inspired by Evelyn, Heather helps to reduce the stress of treatment, bringing more comfort and more hope to young patients and their families.
“Childhood is supposed to be wonder-filled and fun,” she says. “If we can do what we can to improve these experiences and to honour childhood by giving them some control back and valuing their experiences, we are reducing those long-term deficits of trauma and anxiety, and we are giving them some wonder back in their days.”
Much of Heather’s philanthropic work focuses on making the radiation process more kid-friendly, which includes advocating for child life specialists in cancer centres. Child life specialists are uniquely trained positions that provide trauma-informed care; these specialists teach kids strategies to get through hard things. Providing this support is standard of care in children’s hospitals, but not at major cancer centres like the Arthur J.E. Child Comprehensive Cancer Centre (Arthur Child), where children receive their radiation. Radiation is intimidating. Having a child life specialist present during cancer treatment means pediatric patients have one more person on their team to help them cope with the experience.
“Ev used to always say when she was having radiation, ‘This would be so much easier if I had a Cindy here,’” recalls Heather, referencing Cindy Baxter, Evelyn’s child life specialist at the Alberta Children’s Hospital.
Heather and her family have been raising funds for a child life specialist at the Arthur Child, something Evelyn wanted not only for herself but also to support other children. Thanks to Evelyn and her family, a child life specialist is now working at the Arthur Child.
“We just love knowing that the child life specialist is there and honouring this dream of Evelyn’s,” affirms Heather. “Ev has really inspired all of this through her words and her actions. We will always be immensely proud of her for taking really hard times and channelling that energy in such a positive way toward helping people. Ev cared very, very deeply about other people and their experiences.”
More excellence in small moments of hope: Nashrin Mitha.
When Nashrin Mitha was diagnosed with stage 1 breast cancer in 2010 at the age of 46, she was given a private room to process the news and weigh her treatment options as her family arrived to gather around her. She was told to take as much time as she needed. “It wasn’t like one of those appointments where you’re just kind of rushed through the door,” she recalls. “What has really stayed with me throughout my journey were the small moments of humanity.”
Although difficult, Mitha recalls her cancer journey in a positive light, one with excellent care, encouraging results and moments of hope and humanity: a doctor holding her hand and saying, “We’re in this together,” a nurse wiping a tear rolling down her cheek, an anesthesiologist reminding her, “You have cancer, cancer does not have you.”
“As small as these gestures may seem, they were moments of hope for me,” says Mitha.
Throughout it all, Mitha remained optimistic, believing that attitude is 50 per cent of the challenge. “I strongly believed if you had a positive outlook, there would be positive outcomes,” she says.
After a lumpectomy, she received 16 rounds of radiation therapy, countless scans and bloodwork, Dr. Kevin Hay MRIs and seven years of medication. Doctors officially declared her in remission, and for Mitha, this meant it was time to give back for the loving care she had received.
An active volunteer her entire life, Mitha’s community involvement took an even more personal turn after her cancer journey. Her strong faith has always nurtured a commitment to giving back and caring for others. “I have always felt volunteering to be in my DNA. It’s not something you have to do; it’s something you want to do,” she says.
She joined a group of dedicated volunteers that came together in 2014 to form the Patient and Family Advisory Council for what is now the Arthur J.E. Child Comprehensive Cancer Centre (Arthur Child). The council, composed of individuals facing or who have faced cancer and family members of patients, helped to inform, advise and advocate for patient-centred care.
“We were given the opportunity to help cultivate the environment that we were looking for in the new centre,” she says. “We wanted you to feel like hope was floating wherever you are. We wanted a building that would house courage and research, state-of-the-art equipment and facilities, but most importantly, a building that felt like a home away from home for all who came through its doors.”
And that is just what the Arthur Child is. Beyond cutting-edge equipment and world-renowned talent, Mitha affirms that the staff, as stewards of the centre, are the heart and soul of the building and make it feel like home. As a council member, she and her team remind staff how impactful even the smallest kind gestures or discussions can be for patients. Mitha truly believes that when we accept disappointment, we should never lose hope. By sharing her journey, Mitha aspires to see more patients experiencing moments of hope, just as she did.
More excellence through cancer clinical trials.
Two years after a dirt biking accident caused an injury to one of his sit bones, Greg Forchuk was still dealing with serious pain. He had to use a cane when the pain worsened. In 2014, to try to remedy the pain, a then-46-year-old Forchuk went in for an X-ray, where doctors discovered he had multiple myeloma, a blood cancer that forms in the plasma cells mostly found in bone marrow.
Forchuk underwent a successful stem cell transplant at the end of 2014, keeping his cancer markers (substances in the body, when in increased amounts, may indicate the presence of cancer) quite low for years. Currently, there is no cure for multiple myeloma, and patients experience relapse, even after being in remission. That’s why Forchuk had his bloodwork done every eight weeks following his transplant to monitor his health. In 2022, Forchuk faced the news no patient wants to receive: his cancer markers had increased, and his multiple myeloma had returned.
Thankfully, eight years after Forchuk’s initial diagnosis, and thanks to advanced research, new treatment options became available for multiple myeloma. That includes the clinical trial MagnetisMM-5, a phase three study looking at different drug regimens to identify which show the most promise in treating relapsed multiple myeloma. Although skeptical at first, Forchuk joined the trial.
“When I was told that my previous drug had quit working, that was pretty hard to take,” says Forchuk. “There are few other options for treatment with this cancer, so I just decided to go with it. I jumped in with both feet and told them to do what they had to do, and I’m glad I did. I’ve had good results. I’m just thankful for it.”
Since joining the trial, Forchuk’s numbers have remained very low, even lower than the first time he was considered in remission. He confirms the clinical trial drugs are working better than his previous medications.
At first, Forchuk received a dose of two drugs every two weeks as part of the trial. He then moved to a threeweek frequency, and today, he goes every four weeks to the Arthur J.E. Child Comprehensive Cancer Centre for his dose. This regimen continues to successfully keep his cancer at bay. These results hold great benefit not only for Forchuk, but also for people who will face multiple myeloma in the future.
In 2018, Forchuk and his wife, Kim, started participating in the Enbridge Tour Alberta for Cancer (Tour) as part of the support team for a family friend. While they don’t ride, they donate, attend fundraisers and cheer her on during the Tour and at the finish line. All cancer clinical trials in the province are supported by the Alberta Cancer Foundation, including Forchuk’s, so he knows all too well what that investment means. “Funding is very important to do the research to hopefully come up with these new medications that can help people survive,” he says.
Beyond raising funds for critical research like clinical trials, events like the Tour help create a sense of community, one that the Forchuks are proud to be a part of. “When these fundraisers come together, and you get that many people that come out to support, it’s really something incredible,” Forchuk affirms.
