March 16, 2021
Photos by: Caroline Chia | Words by: Aditi Ravi Balasubramanian
(Photo above) Ms Lesli Berggren founded LOVE, NILS to help give emotional support to cancer patients and their families. She lost her son to complications that arose after beating cancer seven years ago.
For 10 days, Nils Berggren could not shake off his cold, prompting his mother to take him to a medical specialist. The diagnosis was devastating. The 12-year-old had Stage 4 lymphoma, a type of blood cancer, along with a rare autoimmune disease.
He was prescribed stem cell treatment at National University Hospital (NUH), but for the teenager, the worst part was not being able to attend school, said Ms Lesli Berggren, recalling her ordeal back in 2012.
After a long search, she found a tutor who enrolled Nils at Brigham Young University in the United States, to be schooled online as a 13-year-old.
At NUH, Nils enjoyed the ad hoc art therapy sessions. But his mother had a bigger worry: finding him a psychiatrist as the cancer medication was causing depression and suicidal tendencies.
“The situation was hard on me emotionally because I was his primary caregiver. I was staying 24/7, for weeks at a time, in his hospital room, sleeping on the sofa.”
Ms Berggren, founder of LOVE, NILS
“The situation was hard on me emotionally because I was his primary caregiver. I was staying 24/7, for weeks at a time, in his hospital room, sleeping on the sofa.
“It was also difficult having to leave him to meet potential art therapists and psychiatrists to discuss his condition and needs,” recounted Ms Berggren, who has called Singapore home since 1998.
The mental and emotional toll was worse than the physical, she added.
After receiving a life-saving stem cell transplant, Nils beat his cancer. It was short-lived, however.
Complications from the transplant led mother and son to fly to Seattle to seek help from the Fred Hutchinson Cancer Research Center, which has links with Seattle Children’s Hospital.
Nils’ five-month stay at the hospital was an eye-opener. Ms Berggren saw the significant role a hospital can play in helping families deal emotionally with the daunting demands of caring for their cancer-stricken children.
“In Singapore, I had felt so alone, isolated. But in Seattle, there was a care coordinator just down the hallway whom I could turn to for all kinds of help.”
College students and residents also volunteered to be friends with the children, allowing caregivers like Ms Berggren to take a break “and nap in my car or go grocery shopping.”
For the children, the hospital was like Disneyland, buzzing with activities for them. “There was art therapy, music therapy, free tickets to events, free psychiatrists, hypnotherapists, and more. Nils could do creative writing and even write movie reviews.”
Nils died in February 2014, at age 14, but his hospital stay left his mother with a lasting memory of the mental and emotional support she and her son received.
It inspired her to start a charity a year later to provide such support. She named it LOVE, NILS, in memory of her son, and in 2017, it became a Singapore registered charity.
Given her Seattle experience, her first goal, she said, was to help NUH find a care coordinator, a person who patients and caregivers can turn to for support. “The position did not exist at NUH.”
LOVE, NILS raised money to help create the position and actively lent a hand to find a person who fits the bill. It found head nurse Laura Tan, from NUH’s Paediatric Oncology Department, who had been with NUH for 30 years.
The charity has since attracted attention, Ms Berggren said, adding that LOVE, NILS now supports KK Women’s and Children Hospital (KKH) as well.
“For instance, we need volunteers to sanitise the donated toys. And when Covid-19 measures are lifted and people can be with the kids, we will need many volunteers for our activities to bring cheer to the children and their caregivers.”
Ms Berggren, founder of LOVE, NILS
Both hospitals treat most of the children with cancer in Singapore, with 120 new cases each year.
LOVE, NILS holds a range of activities for the children, including a pen pal programme, regular art therapy sessions, and toy markets, as well as organising auctions and live music performances to help build a pool of care coordinators.
An Education Support Program has also been launched to provide one-to-one tutoring sessions for the children.
With Covid-19 safety measures, the charity has gone online to raise funds, including holding virtually its annual banner event The LOVE, NILS Superhero Benefit.
Even as LOVE, NILS heightens people’s awareness of the needs of kids with cancer and their families, it has yet to convince enough people to volunteer their time, said Ms Berggren.
“For instance, we need volunteers to sanitise the donated toys. And when Covid-19 measures are lifted and people can be with the kids, we will need many volunteers for our activities to bring cheer to the children and their caregivers.”
How you can help: Be a volunteer, donate money or partner LOVE, NILS to support and help raise funds. Register at its website: lovenils.org
