The reality of motherhood as a cancer patient

In 2017, Michelle Burleigh was thriving. Fit and healthy, the Georgetown, Ont. resident enjoyed a successful career in the investment management industry and had created a happy blended family with her partner Marvin McDoom and their two five-year-old daughters.

But late that year, Michelle fell ill. She began suffering from debilitating fatigue and stabbing headaches. Then nine days before her 37th birthday, things got worse.

“The morning after going to the gym one day, I had severe pain in my back and, by the middle of the next day, I couldn’t walk,” recalls Michelle.

She went to the local emergency department, where she was diagnosed with a locked muscle in her hip and prescribed painkillers. Her family physician offered the same diagnosis. But soon, she was covered in bruises and her blood vessels started bursting.

After a call to what was then Telehealth Ontario, she was urged to go back to emergency. A doctor took some blood samples and then came back and asked how old her children were.

“That was it,” she says. “I knew I was in trouble.”

It turned out that Michelle had acute promyelocytic leukemia (APL), a rare and aggressive subtype of acute myeloid leukemia (AML). According to The Leukemia & Lymphoma Society of Canada (LLSC), APL causes an overproduction of promyelocytes, which are immature white blood cells, preventing the development of normal blood cells in the bone marrow. The main symptom is bleeding, with the disease most often appearing in people aged 20-50.

Michelle was admitted to hospital for three weeks. “I was told that if I had not taken myself to the emergency room, I very likely would have died of a brain bleed within 24 hours,” she says.

She spent four months receiving chemotherapy as an outpatient, then two years of intermittent maintenance treatment, which had its own challenges.

While many people believe that once intensive treatment ends, individuals are cured and “back to normal,” maintenance therapy can still cause side effects such as fatigue, nausea, weakness and loss of appetite. Even after treatment ends, people may continue to feel different because of the trauma of having experienced an acute cancer.

Michelle is currently in remission and hopes to be declared cured by December this year.

Facing pain and anxiety

Michelle’s experience highlights some of the many challenges and stresses faced by people with blood cancers, challenges compounded as a mother raising young children.

Being diagnosed with a serious illness she knew nothing about resulted in “an incredibly painful amount of isolation,” says Michelle. Once she was discharged from hospital, she had very little energy to take part in activities, which was difficult for the kids.

“It was nearly impossible to explain to them that my bones ached from the inside out and that I did not have the strength to dance with them anymore,” she says. “We had to come up with new ways to be together to help close that gap to help them feel loved.”

Informing children when a parent is diagnosed with blood cancer is a particularly delicate act, says Connie Scuccimarri, a pediatric psychologist who has worked for the Montreal Children’s Hospital for more than two decades and also runs a private practice.

“Parents need to have guidelines on how to announce this diagnosis. They are very stressed; it’s a very difficult time,” she says. While some parents want to “open up the floodgates and tell their kids everything,” she adds, others want to keep it to themselves because they don’t want to stress their kids.

“We know that kids do better when they have information about what’s going on,” Dr. Scuccimarri says. “We have to just sit and listen to them. Often parents go to this problem-solving mode, but we have to validate the most important thing which is, yeah, this sounds scary.”

Embracing a new normal

Michelle says that she and her spouse realized they need to talk to their children about her illness after one of their daughters hit her sister, which was completely out of character.

“One day, I asked her how my being sick made her feel. Her reaction was immediate. She completely melted down into deep heavy sobs. She had been carrying all that emotion all that time,” remembers Michelle. “From that point on, we had to really change the way we communicated with the kids about their emotions. We became very intentional about encouraging them to share.”

Meanwhile, Michelle says, she was “absolutely terrified” of not being there for them, especially because they were still so young.

“In fact, I’m quite positive that is the reason I’m still here today – sheer will. I simply could not accept the idea of my kids growing up without me. I had to live to be here for them,” she says.

Michelle says that the LLSC was a great source of support in the early days of her illness. After her diagnosis, she emailed the LLSC and got a quick and helpful response. When loved ones asked about her illness, she was able to refer them to the LLSC website for more information.

The LLSC also raises money for blood cancer research and provides a range of services, including peer and support groups and one-on-one personalized support with staff who will help individuals navigate their blood cancer experience.

After her treatment, the LLSC invited Michelle to talk to staff about her experience, which led to an invitation to participate in three art therapy videos for the LLSC website. She says these experiences helped her decide to expand her career beyond finance to a focus on patient relations. Michelle, now 41, is currently writing a book about her experiences.

“[LLSC] provides fabulous resources for people affected by a blood cancer, and I wish more people supported their efforts. They need more visibility,” she says.

To learn about the signs and symptoms of blood cancer, go to bloodcancers.ca.

Advertising feature produced by Globe Content Studio with The Leukemia & Lymphoma Society of Canada. The Globe’s editorial department was not involved.