In November 2017, 4-year-old Lev was diagnosed with Acute Lymphoblastic Leukemia (ALL), Philadelphia chromosome-positive, a rare and aggressive form of childhood leukemia. What followed was a years-long battle that took Lev and his family across continents in search of life-saving treatment. During their four-year period living in Finland, Lev underwent two transplants and received CAR-T cell therapy. Later, after achieving a long-held dream of immigrating to Canada, the family settled in Richmond Hill, Ontario, where Lev continued receiving specialized care through The Hospital for Sick Children (SickKids) in Toronto.
For years, monthly appointments provided reassurance that Lev was doing well. Then came a relapse, leading to additional clinical trials in both the United States and Canada.
In Canada, most early-phase academic clinical trials are concentrated at a few pediatric cancer centres, such as BC Children’s Hospital in Vancouver, CHU Sainte-Justine in Montreal and SickKids. Given Canada’s vast geography, this leaves many children unable to access these trials and the cutting-edge treatments they offer. The STEP-1 program, in partnership with Hope Air, provides upfront support for essential travel, accommodation, meals, gas and parking expenses so that children and their caregivers can travel to participate in a clinical trial in Canada without added financial stress. Hope Air provides crucial support for families and important coordination for the national program. The national program is supported by ACCESS, a pediatric cancer research network advancing equitable access to the latest scientific advances, innovative therapies and optimal care.
Through the STEP-1 program, Hope Air helped Lev and his family stay in Toronto for the treatment he receives as part of his clinical trial participation, reducing the financial and logistical burden during one of the most challenging periods of their lives.
While the distance itself was manageable, balancing treatment with everyday life was not. Lev’s father worked full-time while helping care for his son, managing household responsibilities, and spending long periods in the hospital. “Time and effort are the most difficult,” he explains. “I had to work every day including weekends given that I had to support and take care of Lev.”
When the STEP-1 team introduced the family to Hope Air, it became an important source of support. “It was excellent and not something we took for granted,” Lev’s father recalls. “Thank you so much for all your help and support. I don’t want to think about going through this without you.”
The support provided through Hope Air and STEP-1 helped cover accommodations and travel-related expenses, allowing the family to preserve their limited savings while remaining focused on Lev’s care. Just as importantly, it reduced the time spent commuting, giving Lev’s father more opportunities to work and spend time with his son. “What STEP-1 and Hope Air made possible is that you guys cut the commute drastically and I was able to both work and be around my kid. This was a phenomenal help.”
Today, now 12-years-old and nearly nine years after receiving a diagnosis that changed their lives forever, Lev continues to move forward with strength and determination. His father reflects proudly on everything they have overcome together: “It’s been almost 9 years since we learned about a deadly diagnosis and we are not only standing strong, but also have Lev growing as a kind and supportive kid, attending school and working on becoming a useful member of society.”
For families navigating pediatric cancer clinical trials, Hope Air and STEP-1 helps remove barriers to clinical trials so they can focus on what matters most: healing, hope, and time together. As Lev’s father puts it, the support was “an invaluable help that reduced the high level of stress from the treatment program. We had several heavy-lift things less to worry about.”
