Of cicadas and cancer

By Caroline Arbour

On a sticky September afternoon, from the Potvin family’s backyard in Montreal North, a cicada is heard singing nearby. The eldest child, Léa, produces a perfectly preserved specimen of the insect, cautiously kept in the freezer in a vial that once contained one of her many medications. “Cicadas all die at the end of the summer,” says the girl with the same matter-of-fact tone she used a few minutes earlier to describe acute lymphoblastic leukemia (ALL). At 9 years old, she knows something of the disease. Too much, really.

It all starts with pain in her legs, in November 2013. Léa’s parents naturally think she is experiencing a growth spurt, but after a week of persistent discomfort, they take her to Sainte-Justine Hospital. The diagnosis: transient synovitis, a temporary form of arthritis not uncommon in children. Anti-inflammatory drugs do little to dull the pain and a few days later at school, it becomes unbearable. “I had tears streaming down my face,” she recalls.

Sainte-Justine swiftly admits her for further tests, including a bone marrow aspiration. Less than 24 hours later, doctors meet with her parents to inform them that Léa has cancer and she will not be going home that night. Caroline Duclos immediately imagines the worst: death. From one moment to the next, “you lose control of your life, you lose control of what happens to your child,” she explains. Claude Potvin adds, “they made you sign the medical treatment consent form and they left with that. That’s all we did, they decide the rest.”

The war is on

ALL is characterized by the abnormal proliferation of immature white blood cells in the bone marrow and the blood. The cause is still unknown. This malfunction interferes with the production of healthy ‘immune soldiers’ responsible for fighting infection in the body. To stop tumorous cells in their tracks, Léa is subjected to a highly effective chemotherapy regimen developed in Boston, in the early 1980s. It kicks off with high doses administered daily during 31 days of hospitalization.

Poked and prodded, fatigued and nauseated, Léa kept her smile and never once complained, says her mother. And although visiting hours were very limited, the bubbly little girl did not feel lonely. “There are clowns, educators, you can make friends.” Her favourite part? Occasional late nights when the kids were allowed to stay up past their usual bedtime. Meanwhile, the Potvins’ second child was having a rough time without his accomplice. Alexandre, 7, says mischieviously [together] “we have fun creating problems. Without Léa, I did not know what to do with myself anymore.” In all seriousness, he confides that he had trouble sleeping.

Caroline and Claude take turns watching over their sick daughter and caring for Alexandre and toddler Andréanne. She requests a six-month leave from her job as an administrative assistant. He, a building engineer, stops working for a month. They no longer see each other. “We had twenty minutes in the afternoons to talk,” says the father.

The best Christmas present

On the 31st day of treatment, December 23, 2013, doctors have fantastic news: Léa’s cancer is in remission. She is allowed to celebrate Christmas Eve at home and is finally discharged about a week later, but the Boston protocol additionally calls for two years of less intensive chemotherapy. It means weekly injections at either the local CLSC or Sainte-Justine Hospital.

Life, nevertheless, gradually returns to a certain normalcy. Some restrictions apply: swimming in lakes, petting animals, and eating sushi because her immune system is not able to protect her against bacteria. Also, “I still have to be careful because my bones are more fragile,” says Léa. Yet, she returns to school and to being a top student, plays soccer, practices her strokes during Saturday morning lessons at a nearby pool.

Bright and precocious, Léa talks about her cancer with the abandon of youth and with humour, except when asked about hair loss. When her formerly long, straight locks began falling out in clumps, “I was embarrassed to show myself. I wore bandanas,” she explains, barely audible. Her hair grew back, curly, which greatly pleases her, but the months of baldness are clearly a sore subject. “There were people at school who did not understand. A boy said to me ‘you are a boy, why do you wear a skirt?’”

Leucan and the future

It is one reason why Léa loves the recreational activities organized by Leucan, the association that supports families like hers. She finds herself with other children who have battled leukemia and “it is rare there to be the target of insults”. Thanks to the charity, Léa, her siblings and her parents have been able to escape ALL for a moment, at the sugar shack, a Cavalia show, a summer camp stay in Lac-Beauport, and during a hospital visit by the Montreal Canadiens.

Leucan plays an important role in their lives and it may be somewhat indirectly even more significant in the future, as the organization continues to fund research. Science has yet to come up with answers to questions on what awaits Léa in adulthood. Right now, “they do everything they can to save the children, but my understanding is that they are not there yet,” says Caroline Duclos. Doctors have evoked the possibility of side effects linked to chemotherapy, but she admits “we do not know much”. For now, the Potvins would rather not think about that. They are focused on an upcoming, happy milestone: the end of treatment on December 23. What does Léa hope to do then? It is simple. “Pet animals.”

Participate in the local challenge on September 17th at Alexis Nihon shopping centre

The Shaved Head Challenge benefitting Leucan will take place September 17, from 12 p.m. to 3 p.m. at Alexis Nihon shopping centre. A minimum donation of 50$ is required and participants are encouraged to sign up online ahead of time at tetesrasees.com/en.

Alexis Nihon shopping centre is owned and managed by real estate investment fund FPI Cominar. A company executive has committed to raising more than $5,000 in donations and to go under the razor at the event. Find out who he is and why he feels compelled to act next week.