Written by 9:06 am Parenting

Taken Too Soon – How Lesli Berggren Honours the Beautiful Memory of Her Son, Nils

Originally from Texas, USA, Lesli Berggren moved to Singapore in 1998. A year later, she joyfully welcomed a pair of gorgeous twin children — a boy, Nils, and a girl, Claire. Sadly, Nils contracted stage 4 lymphoma cancer at the age of 13. After a year and a half in and out of hospitals in Singapore and Seattle, he eventually beat the disease, but succumbed later to complications arising from a stem cell transplant.

10 years on, Lesli walks us through her highs and lows, and how her son’s memory continues to touch the lives of others.

What Motherhood Meant to Me

“I knew I wanted to be a mother eventually. My own mother always found artistic and innovative ways to keep me and my two younger brothers engaged, from teaching us to paint to making seashell candles at the beach. We always sat down for dinner together to discuss our day, and even in my 20s, she made sure I came over for Sunday dinners no matter whom I brought with me. Having worked full-time since I was nine years old, she also taught me the value of work ethic and the balance of motherhood.

The Berggren family

But my parents had also given me an excellent education, so I wanted to ensure I utilised that. My husband wanted children early in our marriage; I wanted to wait, build my career, and secure financial security first. I was 36 when I became happily pregnant.

Finding out I was having twins definitely came as a shock, though. Two months into my pregnancy, I was very unwell, only to learn at the emergency ward that I had an ectopic pregnancy. There were three eggs in my fallopian tubes, and one had burst. I almost lost my other children.

(See also: Condemned to Be Childless After Two Ectopic Pregnancies and IVF Fails – or So She Thought!)

I spent months bedridden to keep my twins safe, which meant I had to learn patience. That experience taught me the patience I would need to care for Nils later on.

Claire and Nils growing up

A Parent’s Nightmare

In October 2012, Nils was kept home from school with a low-grade fever. Nothing out of the ordinary. A few days later, despite feeling unwell, he took to the football pitch to play his favourite sport. But having to be carried up three flights of stairs by his father from post-game exhaustion set off alarm bells.

Nils was taken to the emergency room at Mount Alvernia Hospital, on the assumption he would be sent home with some meds after a few hours. On the contrary, they admitted him.

Intravenous tubes were attached, doctors came and went, tests were run. Nils was getting worse by the day, and no one could understand why. Four days of various tests, scans, blood tests, visits by infectious disease doctors, and on and on — all inconclusive.

Nils in Seattle hospital

They moved him to the intensive care unit in critical condition, almost unconscious. His life was at risk. Yet despite all the prodding, poking, scanning, pricking, and endless testing, his condition remained undiagnosed. The only way to find out what was going on with his body was to go inside. He needed five exploratory surgeries at one go.

Nils had cancer — stage 4 anaplastic large cell lymphoma, a non-Hodgkin lymphoma. It was rare; only one or two cases per year in the region. The lymphoma had spread to his spleen, lymph nodes, and behind his lungs. There is a low rate of success beating this, and even in remission, the chance of relapse is high.

(See also: My Baby was the 7th TAPVR Patient in Singapore’s History)

To compound matters, Nils also had hemophagocytic lymphohistiocytosis, an autoimmune disease which is also life-threatening, plus an underlying infection still unknown. He was only 13 years old.

Your child asks: Why me? What did I do? Why can’t I go to school anymore? The processing of that information was overwhelming, and you break down. Then you have to try to explain it all to your burgeoning teenager.

Nils is cancer free

After spending one and a half years navigating various treatments, chemotherapy, and radiation, Nils beat cancer. But for that, Nils and I were in isolation for 100 days. It was a very lonely place, that one hospital room.

The only thing that kept me going was my ‘pinky promise’ with Nils — he would take care of me when I was old, for as many days as I took care of him.

But, a short few months later, in February 2014, complications arising from a stem cell transplant tragically took his life.

Losing a Child to Death’s Door

It was unbearable. There are no words for losing a child to death’s door. I did not want to go on.

My daughter Claire and I stayed home for five days without anyone knowing we were back in Singapore. We spent much time walking in the park together, going to places we had never been, where we wouldn’t see anyone we knew, and just spending time with each other.

Lesli and Claire

What was I supposed to do with my life after witnessing my own child’s death? I just lost the best job I could ever have — taking care of my son. It was the most intense work I had ever done, and the most fulfilling days I have ever spent. A year and a half in which I banked rich memories. Now it had stopped. All over. Just like that.

It took me seven months to pull myself together to start the healing journey. I began with a therapist and added somatic therapy, trauma release exercises, and meditation.

(See also: Where’s Heaven?: Explaining Death to Children)

The most helpful tool I had was writing. The more I wrote, the more I realised I was in control of my life. It helped me understand the new direction I needed to take: to help other children with cancer, and their families. One hundred and forty thousand words later, my story was on paper.

Now, I am doing wonderfully well. I have learned to take one day at a time, be present, and not sweat the small stuff. Having a purpose in my life seems to help everything else fall into place.

What motherhood means to me has not changed. Having children later in life allowed me to stop working and be a full-time mother. I never took it for granted that my children were precious gifts to me to take care of and to love unconditionally. After losing my son, it was imperative that I was there for my daughter, and still here for her today. Motherhood is magical.

Discovering New Purpose

Back when my twins were four, I started my own jewellery business, Lesli Berggren Design, creating, manufacturing, and selling jewellery in retail stores across Asia and in the USA.

When Nils fell sick, I stopped working. Childhood cancer demands full-time care; it is a 24/7 job. Cancer does not take a break, and nor can a caregiver. I felt there were few choices during the cancer journey as a caretaker, and even fewer choices available to Nils.

Lesli and Nils

I had less time to spend with my daughter, a budding teenager who needed me more than ever. There was certainly no time for friends or family members living abroad. I stopped exercising; my life as I knew it before stopped existing.

My sole focus was keeping my son alive, advocating for him in the hospital, and keeping him engaged and hopeful.

After Nils passed away, I tried to go back to designing jewellery, but the passion was no longer there. I had a new mission: to help children like Nils and their families.

Even in our darkest moments, I remember my son always reaching out to children he perceived to be suffering more than him. That’s why I started LOVE, NILS — to reach out to families fighting cancer and to have their back every step of the way. My son always said, “Never give up!”

Nils at 9 years old

Families navigating childhood cancer find themselves in an overwhelming situation, confronted by a staggering amount of medical information, isolated from others, and detached from their daily lives. Chemotherapy, radiation, and stem cell transplants may be the medical terms of hope. But healthcare guidance and emotional, social, and community support are just as crucial.

(See also: Are You a Caregiver for Your Child? – Please Read This (+ True Life Stories))

Throughout the ordeal to keep my son alive, I learned deeply about the reality for children with cancer and their caregivers, and the healing power of relationships and a community. I have had first-hand insight into how doctors and nurses work, the good, bad, and ugly of both Eastern and Western medical systems and the hospitals that house them.

As a Singapore-registered non-profit organisation, LOVE, NILS aims to share knowledge, resources, and a community, to give shelter both physically and emotionally, and to provide a foundation for resilience and hope. Since 2017, we have grown to operate six support programs in two hospitals (NUH and KKH) and the community.

If you’re a cancer parent or caregiver, reach out to your community. Let them know you need help. Tell them where you need the help… For example, bring you meals in the hospital, sit with the patient so you can take a break, or pick their siblings up from school. Ask them to call, visit, and talk to you about your situation. Look after yourself, so that you can take care of the patient. Take one day at a time.

Lesli Berggren, Founder and Co-Chief Executive Officer of LOVE, NILS
Nils Dean Berggren, plaque, Colorado
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