By SGN | 22 May 2023
When Nils was diagnosed with stage 4 lymphoma, his treatment was only meant to last six months.
“But of course, cancer has its own journey and it doesn’t always work out the way the doctors think,” Lesli shares. As her son’s cancer grew more aggressive, the doctors performed a transplant of stem cells from his father, which were a partial match. Months later, Lesli was in isolation with Nils when good news arrived.
“The doctors came in with this look of astonishment and said Nils had no more cancer in his system,” she recalls. “I started crying. And Nils just looked at me with this big smile, like, ‘Yeah, I knew this was going to happen, Mom.’”
To celebrate, Lesli rushed home to make a neutropenic diet cake piped with the words ‘Nils Cancer Free’. “I stuck a candle in it and drove back as fast as I could to the hospital,” she says. “It was a great day.”
In the weeks to come, however, things took a turn for the worse and Nils developed graft-versus-host disease. The new cells in his body were attacking his tissues, causing his skin to shed and his weight to plummet.
On February 7, 2014, Nils succumbed to the disease and passed away. He was 14 years old.
The impact of a care coordinator
As cancer progresses, the patient’s experience is often characterised by loneliness and a loss of control over the situation. Treatment can become excruciating and difficult to endure.
“A child with cancer can’t attend school or be with their friends because of their suppressed immune system,” Lesli explains. “It becomes very isolating for the family as well because the parents are taking care of the child, and the siblings sometimes get left to fend for themselves.”
After her son’s passing, Lesli sought ways to support other children with cancer. “I went back to the doctors at the National University Hospital who treated my son and said, ‘What is your greatest need?’ and they said, ‘Care coordinators.’”
She knew first-hand the impact a care coordinator can make, having encountered the role at Seattle Children’s Hospital, where Nils had been transferred in his final months. “Every floor had a care coordinator that helped families through any needs they had, from housing to transportation to medical understanding,” she says. “They created so many opportunities for families to feel cared for.”
Since there were no dedicated care coordinators in paediatric oncology in Singapore, Lesli started the charity LOVE, NILS in 2017 and began raising funds with the help of high school volunteers. The first S$100,000 raised went directly to hiring a care coordinator at the National University Hospital, a role that the charity has supported for four years and counting.
It’s the smiles on their faces
Subsequently, LOVE, NILS launched a slew of programmes that bring love and support directly to children with cancer. These include monthly toy donations to the hospitals and a pen pal programme that delivers letters of encouragement.
Through regular sessions led by licensed tutors and art therapists, the charity provides academic support and avenues for self-expression. “Art is the canvas for many of these children who don’t have the verbal ability to express the emotional difficulty and trauma they’re going through,” Lesli says.
At the same time, partnerships with schools and corporations have created fun programmes such as movie nights and holiday camps. In a monthly series called Calendar of Hope, children receive sponsored tickets and backstage passes to delightful experiences and theatrical performances.
Art is an avenue for children to express the emotions they cannot verbalise.
In an event series called Calendar of Hope, children receive sponsored tickets to experiences and performances.
Over the years, the work of LOVE, NILS has touched hundreds of young lives, helping them stay hopeful and resilient. Lesli notes that survival rates for children are high and generally well over 80% in Singapore – a medical hub for cancer research and treatment – and yet, psychosocial care that is critical to quality of life is often not built into the hospital system.
“We want to surround them with a community that serves as the emotional, psychological and social support they lean on,” she says. “Kids get to be with other kids like them. Parents are able to befriend other parents that are on the cancer journey.”
And at the end of the day, what brings Lesli a sense of fulfilment can be something as simple as a smile. “It’s the smile you see on a child’s face when you pass them a toy, seeing these kids smile at a concert and singing the songs afterwards. And it’s the smiles that I see on the parents’ faces when they see their children being happy.”
Distribution of toys at hospitals brings delight to children undergoing treatment that often lasts for months.
A new chapter begins
In mid-2022, during a period of rising rental prices, Lesli decided it was a good time to return to the US, after 25 years of living, working and raising her twins – Nils and his sister Claire – in Singapore.
Reflecting on her time here, the native Texan marvels at the beauty of the city and its multicultural society. She notes that growing up in such a culturally diverse environment was a valuable experience for her children that broadened their horizons, especially having attended both local and international schools.
“Just being able to connect to people based on who they were, and not based on their beliefs or the colour of their skin, was an extremely special and rare opportunity,” Lesli says.
Now, she’s based in Washington DC, where Claire graduated from university and where Lesli’s brother and his family also reside. The move initially involved a great deal of reverse culture shock. “As an American who’s lived in Singapore for 25 years, I felt really disconnected,” she says.
One day at the gym, Lesli got terribly excited when she overheard a woman telling someone she’s from Singapore. “I went up to her and said, ‘I’m so sorry to bother you. I know this is inappropriate. But would you have lunch with me?’ And so we started having lunch once a week. I just felt more connected with Singaporeans than with Americans.”
Before relocating to the States, Lesli ensured that LOVE, NILS was on a stable footing and in the hands of a capable team. “I had built the charity up to a place of sustainability, and we were finally able to afford a centrally located office,” she says. “I’ve stepped back from running the daily operations. But I know that we have a strong staff, a team of enthusiastic and unwavering volunteers, and an amazing board of directors.
“In my new role of advisor, I meet with the team on a weekly basis, and I’m trying to create awareness about what we do and raise funds in America. LOVE, NILS gives me purpose. I don’t think that will ever go away.”
Support Children with Cancer
Lesli is the founder of LOVE, NILS, a Singapore-based charity that brings hope and support to children with cancer. Dedicated to the memory of her son, the organisation runs programmes in partnership with the National University Hospital and KK Women’s and Children’s Hospital.
Connect with her here.