When Lesli Berggren, founder of charitable organisation LOVE, NILS, was told that her then-12 year old son, Nils, had a rare form of aggressive cancer, she remembers her entire world being turned upside down.
“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,” she says. “So you take him to the emergency room, where he gets sicker and sicker, and ten days later, he is in ICU. Then you get a diagnosis: stage four lymphoma with a rare autoimmune disease.”
It was overwhelming to process that information, and Berggren broke down then. She was faced with the task of explaining to her young child that he could no longer go to school, even as he asked “why me?”
As their entire lives changed, the disease became the new normal, she says, and so does seeing Nils hooked up to machines and wires, and dealing with the side effects on all the medication on his young body. It was a lonely time, even though there was a glimmer of hope when a stem cell transplant succeeded in eliminating the cancer initially. But for that, Nils and her were in isolation for a hundred days. “It was a very lonely place, that one hospital room.”
The only thing that kept her going was her ‘pinky promise’ with Nils, that he would take care of her when she was old, for as many days as she took care of him.
When complications arose from the stem cell transplant, 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 or travel. The hospital also had an incredibly well-equipped childrens’ cancer ward, one which Lesli describes as “Disneyland for children with cancer.”
There were also tutors and an incredible community support system which 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 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. “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 to raise awareness of how kids need toys to be entertained in the hospital, and we called it the LOVE, NILS toy drive,” she recalls.
While she did not initially intend to set up a charity, her daughter’s teachers suggested presenting LOVE, NILS to a group called ‘100 Women Doing Good’. One thing led to another, and LOVE, NILS was officially registered as a charity in 2018.
Today, LOVE, NILS has expanded to do more than toy drives. They take a holistic approach towards support for families with children who have cancer, offering guidance, emotional care and social and community support, including art therapies, housing, school student involvement programmes and more.
Working closely with hospitals in Singapore (NUH being one of them), they also provide ‘patient navigators’ who would 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.”
LOVE, NILS also held an ‘anti-gala’ last November to raise funds, and that went incredibly well, raising about $170,000. They’ve also grown in strength and size since, adding a programme director, more volunteer staff and two new board members (bringing it up to five) to further strengthen their direction and strategy.
“With the new volunteers and our new programme director, that has given me the capacity to really focus on our strategic plan and budget for our next three years. In order for us to be sustainable, we have to figure out a way beyond living from hand-to-mouth,” she says. “So we need to institutionalise some of our programmes, make them more readily available, team up with large corporates, pharmaceutical companies or even like-minded charitable organisations so that we can come together and tap into [resources].”
“Nils told me once that he didn’t ever want to be forgotten,” she adds. “With LOVE, NILS, now he never will.”