Emily Brown, 11, and her mom Deborah Potts share a hug pool-side in their Toronto backyard.Glenn Lowson
In fall 2014, four-year-old Emily Brown was planning to look out her hospital room window to see the lanterns of Light the Night, an annual event held by The Leukemia & Lymphoma Society of Canada (LLSC). That night, roughly 6,000 participants of the Light the Night Walk were outside the windows of children going through cancer treatment.
But the kindergartener had her first dose of chemotherapy that day.
“She was too sick to go to the window,” remembers her mother, Deborah Potts. That was the beginning of more than two years of gruelling rounds of treatment for the young girl’s acute myeloid leukemia (AML), a disease of the bone marrow and blood can progress rapidly without treatment.
Just weeks before, Emily was active, cheerful and social. But around the time she started school near the family home in Toronto, Emily seemed tired and complained that her legs hurt, Deborah says.
Then, she started limping and a golf-ball sized lump appeared under her arm, prompting a trip to SickKids Hospital to find out what was wrong. Deborah and Emily were preparing to head home after the appointment when Deborah’s phone rang. “They called me while we were still in the parking lot, asking me to come back up,” recalls Deborah of that October day Emily got her diagnosis.
It all happened so fast that Deborah had to call her husband, a lawyer, in court to tell him the bad news. Emily was admitted to hospital the next day to begin treatment.
Emily is now 11 and her cancer is in remission. But years of treatment have taken a toll on her, as well as her parents, two sisters and the extended family.
“There’s a little bit of fear that you live with for the rest of your life,” Deborah says. “I don’t think our lives will ever go back to the way they were before.”
Sadly, the emotional, physical and cognitive effects of cancer treatment can impact kids for years, even the rest of their lives, says Dr. Jason Berman, vice president research at CHEO in Ottawa CEO and scientific director of the CHEO Research Institute.
“Now that we’re in the fortunate situation that we have large numbers of children that are survivors of childhood cancer, we’re now dealing with the consequences of the treatment,” he says.
Dr. Berman and others in the field of pediatric cancer are researching ways to help kids both survive cancer and feel fewer effects later on.
Emily is excited to be taking part in The Leukemia & Lymphoma Society of Canada’s annual Light the Night fundraising event.Glenn Lowson
The costs of treatment
Just a few decades ago, doctors could not successfully treat pediatric blood cancers such as AML.
Thanks to advances in chemotherapy, the five-year survival rate for AML is now 68 per cent for kids and 66 per cent for teens. It’s even higher for some other kinds of blood cancer; acute lymphocytic leukemia (ALL) has a 90 per cent five-year survival rate.
“We’re now [asking]: what’s the cost of cure?” says Dr. Berman. “Can we peel back some of this chemotherapy or use more targeted agents to get the same success rate without some of the long-term side effects?”
For Emily, the effects started early. She developed selective mutism as a coping mechanism while undergoing treatment, only speaking to family members – this lasted for nearly two years.
“To this day, she still doesn’t take the initiative and speak up for herself,” says Deborah, noting that her previously very social daughter is much more shy now.
Medications weakened Emily’s immune system and she developed numerous illnesses during her treatment, including respiratory syncytial virus (RSV); hand, foot and mouth disease and pneumonia – which she has had four times.
Emily received powerful chemotherapy, some of it to her brain, and now has learning challenges. That, plus missing nearly three years of school, has made it tough for her to catch up. Since she has difficulty processing verbal instructions, online learning during the pandemic was brutal. “Are you dumb because you had cancer?” a classmate asked her once.
Medications affected her muscles, and Emily still finds it difficult to run. And having to carefully time meals around her cancer treatments has made Emily highly resistant to any food rules or restrictions, Deborah says.
Dr. Berman says cancer can take a huge psychological toll on kids and teens. Treatment can be harsh and it’s lonely to be stuck in a hospital bed, away from friends. Many kids with blood cancer must take steroids, which impacts their weight and their body image, he says.
Survivors of childhood cancers can be at risk for developing a secondary cancer later on, an effect of some types of chemotherapy.
“These can be very aggressive and very hard to treat,” Dr. Berman says. Cancer treatment can damage the heart and kidneys and some medications impair hearing, he adds, and that’s often permanent.
A different future with less side effects
Research in pediatric blood cancers focuses on maintaining or increasing success rates while reducing the effects of cancer treatments, Dr. Berman says.
One line of study looks to reduce how much chemotherapy children get, either lowering the dose or lengthening the interval in between rounds, with fewer rounds overall.
Precision medicine, also called personalized medicine, involves using medications to target genetic abnormalities in cancer cells. Already, a drug called imatinib is being used to impact the protein that causes the cancer growth in chronic myeloid leukemia (CML).
Dr. Berman says great advances are being made in immunotherapy. “The idea is to have the immune system specifically target the cancer cells.” He says there’s one immunotherapy drug being used to treat ALL, with many others in development.
In his own lab, Dr. Berman is developing protective drugs people can take while getting blood cancer treatments to help protect organs such as the heart and kidneys from the ill effects of chemotherapy.
“That’s a potential game-changer,” he says. “These drugs could allow us to give higher doses of chemotherapy.”
Hope for kids with blood cancer
Researchers working on blood cancers and other cancers too are getting closer to finding safe, effective treatments that also help young people live happier and healthier lives afterwards.
Emily still has to contend with the effects of her cancer treatment, but there have been victories too. She has been able to take up hockey, which she loves, and plays regularly in a local league.
Every year, she and her family band together as Emily’s Entourage to raise funds for blood cancer and take part in Light the Night, the LLSC’s flagship fundraising event. Emily is excited to participate in this year’s virtual event, happening Saturday, October 23rd.
At last year’s Light the Night, Emily achieved something of a milestone when she got up and addressed a small crowd at a scaled-down version of the event in her neighbourhood.
Says Deborah of the experience: “This was a big deal for a kid who was not talking for a long time.”
To learn more about The Leukemia & Lymphoma Society of Canada’s annual Light the Night fundraiser, go to lightthenight.ca
Advertising feature produced by Globe Content Studio with Leukemia & Lymphoma Society of Canada. The Globe’s editorial department was not involved.