“One day you’re running your own business and you’ve got two kids in school who are happy, playing soccer and doing well. Your son catches a cold a few times a year but then, this one time, he doesn’t bounce back. So you take him to the emergency room, where he gets sicker and sicker, and 10 days later, he is in the ICU. Then you get a diagnosis: stage four lymphoma with a rare autoimmune disease.”
Her son Nils, then just 12, was dying.
“The processing of that information was overwhelming, and you break down. Then you have to try to tell that to your 12-year-old,” she says. “Your child asks: Why me? What did I do? Why can’t I go to school anymore?”
During an interview with Options, Lesli — who is American but has lived in Singapore since 1998 — is warm and open, with a smile that puts us immediately at ease, even though her grief is still palpable. The former public relations practitioner is also unflinchingly honest when she says the disease wreaked havoc in the lives of her and her family.
The disease became the new normal, she recalls, and so did seeing him hooked up to machines and wires, and dealing with the side effects of the medications on his young body. Reprieve came when a stem cell transplant succeeded in eliminating the cancer, but for that, she and Nils were in isolation for 100 days. “It was a very lonely place, that one hospital room.” The only thing that kept her going was her “pinky promise” with Nils — he would take care of her when she was old, for as many days as she took care of him.
However, when complications from the stem cell transplant arose, the doctors at the National University Hospital (NUH), where Nils was being treated, recommended that they go to the Fred Hutchinson Cancer Research Centre, a leading cancer research hospital in Seattle.
Over there, Lesli says, support came in the form of a care coordinator. The coordinator helped not just the children, but also the family members, taking care of their needs such as accommodation and travel. The hospital also had an incredibly well-equipped childrens’ cancer ward, one which Lesli describes as “Disneyland for children with cancer”. There were tutors and an incredible community support system that helped Lesli and Nils get through the worst days.
Sadly, Nils lost his battle with the disease in February 2014, and Lesli returned home to Singapore to be with her daughter Claire and to pick up the pieces of a life forever changed.
“The greatest, most amazing part of being a parent with a kid with cancer is that time is at a standstill. You are so present because life is so precious that you don’t take advantage of not being with your child. You almost become married; you don’t even have to speak because you are so in tune with that other person,” she says, and her voice breaks. “It was the greatest experience I ever had and I would do it again in a heartbeat.
“So, to keep his memory alive, we started doing toy drives a year after he passed away. I just sent out messages over SMS and Facebook to collect toys and raise awareness of how kids need toys to be entertained in the hospital, and we called it the Love, Nils toy drive.”
She had no intention of starting a charity until Claire’s teacher suggested she present Love, Nils to a group called “100 Women Doing Good”, which is part of an expat charitable network called 100 People Doing Good.
“She put together a PowerPoint slide, and we went and pitched it and we won $5,000. I was in a bit of a shock, actually,” she says. “They said, ‘We’ll see you in September and you can tell us what you’ve done with that money.’” It was then she thought it was time to make a difference, and Love, Nils was finally registered as a charity last year.
Today, Love, Nils has expanded, doing more than toy drives. It takes a holistic approach towards support for families with children who have cancer, offering guidance, emotional care and social and community support, including art therapy, housing and school student involvement programmes. Working closely with hospitals in Singapore (NUH being one of them), it also provides “patient navigators”, who help support the cancer ward, similar to the care coordinators at Fred Hutchinson.
“Our core work is to be a beacon of hope and light for kids who are struggling with cancer, and their caregivers. I think our mission is to empower them, to encourage them with social community support and psychological support,” she says. “And we do that in ways that I feel would work, as a mother of a child with cancer.”
A superhero-themed “anti-gala” is being planned for Nov 16, during which funds will be raised for Love, Nils. At this event, everyone will be given capes to wear; no suits, ties or ballgowns necessary. “We wanted to celebrate the real heroes: the children,” Lesli says.
“Nils told me once, he didn’t ever want to be forgotten. With Love, Nils, now he never will [be].”
