Jackie Aziz passed away at the age of 23 after a five-year battle with sarcoma | Lynn (right) and Randy Aziz are honoring their daughter’s wish to effect positive changeThe new Jackie Aziz AYA Program at Cedars addresses the unique needs of young cancer patients Michèle LaForest June 18, 2023 1834 Cancer strikes people at every age. Unfortunately, when it strikes someone in their teens, twenties or thirties, it comes with a unique set of medical and psychosocial consequences. For teens, a cancer diagnosis can lead to feeling “left out:” missing school, missing parties, looking different, and being treated differently by friends – the very things that teens dread the most. For young adults, a cancer diagnosis can lead to feeling “left behind.” It can derail their studies, their career path, their relationships, and their family life. What’s more, cancer treatments can cause fertility problems and put an end to some patients’ dreams of conceiving children. These young people fall into what’s called the “AYA (Adolescent and Young Adult) gap,” because they don’t fit neatly into either the pediatric or adult healthcare system. Their issues are not the same as those of younger or older patients. And, sadly, their survival rates are not rising as quickly as those of younger or older cancer patients either. Their challenges don’t stop when their treatment ends. It’s daunting to return to school or to the workforce after several years, without your former peer group, and difficult to return to a carefree “normal” when you live with the uncertainty of a potential recurrence. This probably explains why young adult cancer survivors often have more difficulty finding employment than young adults who have never been ill, and why they are more likely to be underemployed and to rely on social assistance to make ends meet. Lynn and Randy Aziz want to change all that and to improve the quality of care and of life of young Montrealers who are living with cancer. Their daughter, Jackie, was in the so-called AYA gap. She passed away at the age of 23 after a five-year battle with sarcoma. “Jackie was caring, genuine, and very social. She loved bringing people together,” says her mom, Lynn. “Although she was brave and positive during her long battle with cancer, she also felt sad and lonely at times.” Jackie once wrote: “Effecting positive change is all I ever wanted to do.” To honour that wish, Jackie’s parents teamed-up with the Cedars Cancer Foundation to create the Jackie Aziz Adolescent and Young Adult Program at Cedars (AYA Program), which will effect positive change for AYA cancer patients and their loved ones at the MUHC. “Through this program, we aim to reduce barriers to research, improve survival rates, and enhance the well-being and quality of life of AYA patients,” says Cedars President and CEO, Jeff Shamie. “Our goal is also to provide them with better support at every stage of their journey: diagnosis, treatment, survivorship, and, if required, end-of-life.” Funds raised through the AYA Program fund have already enabled the MUHC Cancer Care Mission to create two key positions, which will ensure that patients have access the best medical resources and have help navigating their way through their medical and emotional journey: • A Patient Care Navigator, who supports patients, helps them with their medical, psychosocial and practical needs, and coordinates their clinical care; and • A Clinical Research Associate, who facilitates the participation of AYA patients in clinical trials, which are often difficult to access. Cedars and the Aziz Family will continue to fundraise to support and expand this important initiative for years to come. “Jackie would have been very proud of this program,” says Ms. Aziz. “Her legacy will be to support other young patients and their families as they navigate this difficult experience, and to help improve AYA survival rates.” To find out more about the Jackie Aziz Adolescent and Young Adult Program at Cedars, visit: https://www.cedars.ca/en/what-we-do/funds/jackie-aziz-legacy-fund-at-cedars. A few stats about cancer and AYAs in Canada Every year, approximately 7,600 Canadians aged 15 to 39 years are diagnosed with cancer. The most frequent types of cancers in AYAs are thyroid cancer, breast cancer, Hodgkin lymphoma, non-Hodgkin lymphoma, testicular cancer, and melanoma. Many survivors live 50 to 60 years beyond their diagnosis and treatment. About The Cedars Cancer Foundation The Cedars Cancer Foundation (Cedars) is a charitable organization that is the funding arm of the MUHC’s fight against cancer. It aims to ease the pain and suffering caused by cancer, regardless of the patient’s age. Cedars supports the hospital’s Cancer Centre, which bears its name, as well as the Cancer Research Program of the Research Institute of the MUHC. Cedars is also a founding partner of the Rossy Cancer Network, which brings together McGill University and its teaching hospitals to improve the quality of every patient’s experience and care outcome. For more information, visit www.cedars.ca. Testimonials from AYA cancer patients and survivors (NB: all names are fictitious, to protect patient anonymity) “When I was hospitalized, there were lots of activities for little kids, but not much for teens. Like, a visit from clown was fun for them, but not for me.” – Matteo, age 15 “When I had to stop going to school, my friends tried to visit me and include me in things. But they didn’t really know what to do or say when they saw me, because I was sick. Sometimes I preferred being alone, because I looked awful, and they couldn’t understand how I was feeling, and it was really awkward.” – Megane, age 18 “I hate my chemo appointments. I’m almost always the youngest patient in the ward. There’s no one my age to talk to. I feel like people are looking at me and feeling sorry for me because I’m young but sick.” – Brandon, age 22 “I was just about to start my first job when I got diagnosed, and I was really looking forward to it. Instead, I was stuck getting treatments and feeling sick for nearly two years. All my friends were beginning their careers and having fun, and I had to start all over, by myself. It was really hard.” – Juliette, age 25 “I was diagnosed when I was 29. I had just had a baby. I was so weak that I couldn’t look after her. My husband and my mother had to do everything for the baby and for me for a while. I hated that so much. All I wanted was to be a super-mom, but I felt useless.” – Eva, age 32 “When I was young, I just assumed I was going to live long enough life. I never imagined I’d get cancer. I nearly died. It was really hard for my kids and my parents. I actually felt guilty for causing them so much stress, even though it wasn’t my fault. Honestly, I’m scared every day that the cancer might come back. It wasn’t supposed to be like this.” – Thomas, age 36 Sam Finn (right) with his late brother Cédric Honouring his brother’s memory Sam Finn also knows firsthand the challenges that young adults experience when they have cancer. His brother Cédric was only 27 when he died of sarcoma. “He had a great career, and he had just built his dream house with his fiancée,” says Sam. “He had so many plans, but he had to drop everything.” Sam has since gone to pretty extreme lengths to ensure that Cédric’s death was not in vain. In 2019, he raised over $70,000 for the Cédric Finn Fund for Sarcoma by breaking the world record for the most burpees performed in twelve hours (5,324). This fall, he’ll be at it again, this time trying to break the record for most burpees completed in one hour. “Cédric taught me the importance of making every day count,” adds Sam. “I want to ensure that his life counts, too.”