DONATIONS AT WORK HIGHLIGHTS 2024/25
Cancer Care and Research for Kids
Meet Mads
From the time he was born ten years ago, young Mads has faced more medical battles than many people see in a lifetime — from severe breathing issues that required him to have a tracheostomy for the first two years of his life to stomach and bowel disease that required surgical interventions, his mom, Sydney, says “It’s been a lot to say the least”.
She recalls getting the news that her then two-year-old son had neuroblastoma — one of the most daunting cancer diagnoses a child could ever face. “It was hard to comprehend at first. How could this be happening to my boy? He’s already dealt with so much.”
Thankfully, there was a treatment protocol in place that would get Mads into remission — a state in which there was no more evidence of cancer in his body. While that was promising news, the prospect of relapse was high and weighed heavily on Sydney’s mind.
When Mads’ primary oncologist, Dr. Melanie Finkbeiner, approached the family about participating in a clinical trial for a drug that was showing promise by reducing the likelihood of relapse by fifty percent, Sydney was all in. Through online parent forums, she had heard about the drug and was thrilled to know that it could be offered to Mads through the clinical trials program at the Alberta Children’s Hospital.
“It means the world that our hospital has the means and expertise to offer these trials to children like mine. It’s critical that we keep looking for ways to make these treatments more effective and less painful for kids.”
— Sydney, Mads’ mom
Knowing that Mads’ experience with this drug is going to inform the standard of care for children facing this diagnosis in the future gives Sydney pause. “It’s great to know that it might be helpful for Mads, but knowing that he’s contributing to the science that shapes the future of cancer care for kids, that’s pretty incredible.”
Advancing Care Through Clinical Trials
Thanks to our generous community, the Clinical Trials Program at the Alberta Children’s Hospital is making great strides. With the addition of donor-funded clinical research experts to the team, pediatric oncologists in Calgary can launch more local pilot studies and take part in a growing number of national and international research efforts. These studies aim to discover new ways to improve survival for children facing hard-to-treat cancers and blood disorders, while also helping them better understand and reduce the short- and long-term side effects of current treatments.
“The additional team members have made a remarkable difference in our ability to open and offer clinical trials,” says Dr. Lucie Lafay-Cousin. “As a clinician with a full roster of patients, I would not have the time – nor the expertise – to navigate the applications and approvals required. It’s been a game changer to have this support.”
Recently, Dr. Lafay-Cousin put the team to the test. She needed to get a trial opened quickly for a baby who presented with an extremely rare brain tumour. “These kinds of cases only come along once or twice a year. It was critical that we get the study opened quickly so we could offer the trial to the parents.”
Dr. Lafay-Cousin is collaborating with colleagues at SickKids Hospital and BC Children’s Hospital to find out if it’s possible to spare young patients the harmful effects of brain radiation. The study is designed to test whether using a special method to deliver chemotherapy directly into the fluid around the brain, followed by regular low-dose maintenance chemotherapy, could be a safer and more effective treatment for babies and children with high-risk brain tumours.
“Clinical trials like this one are all about making cancer treatment less harmful for young, developing brains and bodies While it’s our ultimate goal to save a child’s life, we absolutely must do everything we can to save the quality of the rest of their life.”
— Dr. Lafay-Cousin
Thanks to donor support for specialized resources and staff, the hospital’s Pediatric Oncology and Stem Cell Transplant program is able to offer more clinical trials than ever before – giving hope to more young patients and their families.
“We couldn’t do this without our community,” says Dr. Lafay-Cousin. “Their support allows us to offer cutting-edge therapies and shape the future of pediatric oncology care — not just here in Calgary, but across Canada and beyond.”
Did you know?
Participating in a clinical trial can mean additional trips to the hospital or lengthy stays in Calgary for out-of-town families. Thanks to donor support for the Research Accelerator Fund, qualified families can be reimbursed for additional expenses such as travel or accommodations to ensure there are no financial barriers to enrollment.
Dr. Lucie Lafay-Cousin was recently awarded the Kids Cancer Care Chair in Pediatric Oncology. As a highly-regarded national expert in pediatric neuro-oncology, Dr. Lafay-Cousin will direct funds from her chair to support:
Clinical innovation – including a focus on mRNA vaccines as a means to treat pediatric cancer as well as advancing CAR-T cell therapies for brain tumours
Research catalyzation – training up the next generation of clinician/researchers while also streamlining the preclinical to clinical application process
Program advocacy – positioning the ACH and Calgary-based experts as national leaders in pediatric neuro-oncology
Hospital at Home
Thanks to the donor-funded Hospital at Home program, Jaylee is able to receive much of her cancer treatment surrounded by her favourite comforts — her family, home-cooked meals and cuddles from her dog, Piper.
LEARN MOREImproving Care and Outcomes for Kids with Cancer
Over the past year, the IMPACCT (Improving Psychosocial and Cognitive Care Trajectories) initiative at Alberta Children’s Hospital has made significant progress in its mission to improve the quality of life for children undergoing cancer treatment and those who have completed therapy. Building on the strong foundation laid in previous years, the team has expanded its research, improved data collection, and taken important steps toward developing new tools to support patients and families.
One of the key areas of progress has been in patient engagement. The team has identified and begun using new tools to better understand how children feel — physically, emotionally, and mentally — while they are receiving cancer treatment. These tools, such as SSPedi and the Distress Thermometer, help healthcare providers recognize when a child may be experiencing distress and allow for timely support.
A new study is underway to test how well these tools work in real-world settings. The team is also preparing to interview patients, families, and healthcare staff to learn how to best include these tools in everyday care.
Since the last report, the number of clinical trials that include quality of life and brain health assessments has grown. Eight new trials have been launched, and a total of 271 children are now participating in 32 studies. Data collection has improved, with nearly 14 percent more assessments completed compared to the previous year. The team has also expanded the types of information they collect to include topics like financial stress, health literacy, and how families feel about treatment decisions.
The IMPACCT team has also made important progress in studying the long-term health of childhood cancer survivors. They have completed a major analysis showing the increased risks of early death and new cancers among survivors in Alberta.
To strengthen future research, the team is building a comparison group of children from the general population who did not have cancer. This will help researchers better understand how cancer and its treatment affect survivors over time.
In addition, the team has updated its survivor database to include children diagnosed with cancer up to 2022 and has tracked their health outcomes through 2024. A new study is also being developed to explore how lifestyle habits — such as exercise, sleep, and diet — affect survivors’ long-term physical and emotional health.
The development of a mobile health (mHealth) app has entered its next phase. After a competitive selection process, Cambian Business Solutions Inc. was chosen to build the app. This tool will allow patients to report how they are feeling in real time, helping care teams respond more quickly and effectively.
Currently, the app is undergoing a privacy and security review to ensure it meets all data protection standards. Once completed, this app will be one of the first of its kind designed specifically for children with cancer and their families.
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