“Nils’ body was cremated. Since Nils was four years old, he and his sister hiked with me in the Colorado Rocky Mountains. The last hike I took with him, once we reached the peak, I promised him we would camp overnight there the following year. I cry, thinking I was not able to keep that promise. Instead, every year since he passed, I take some of his ashes to Loveland Pass on the continental divide in the Colorado Rocky Mountains. I release his ashes to the wind, from dust to dust,” says Leslie Berggren, who found herself face to face with the inconceivable: childhood cancer.
Losing a child is every parent’s worst nightmare realised. For Lesli Berggren, 58, these were the cataclysmic cards life dealt. Nils was a twin—a bond forged in the womb with his sister Claire would never be broken, but he would leave a gaping hole in their hearts and lives. Despite her devastating loss, Berggren persevered to form non-profit charity Love, Nils, Singapore. Nils loved to trek, but no one could have prepared him and his family for the uphill battle he was to fight. The fight of his life. Now his mother’s organisation provides much-needed healthcare guidance, emotional care, plus social and community support for cancer patients and their caregivers every step up that mountain.
Dealing with a devastating diagnosis
“Cancer arrives.” In early 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 from exhaustion post game by his father set off alarm bells. Nils was taken to the emergency room at Mount Alvernia Hospital with the assumption he would be sent home with some meds after a few hours. On the contrary, he was admitted. “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. He was moved to the intensive care unit in critical condition, almost unconscious. His life was at risk. And still, his condition remained undiagnosed. Nils was prodded, poked, scanned, pricked, and endlessly tested, but the only way to know what was going on with his body was to go inside. He needed five exploratory surgeries in one go.” Then on October 24th, just some weeks after the seemingly innocuous cold, Berggren found herself in the pediatric ICU ward surrounded by some very concerned faces. One member of the oncology team spoke, “Nils has cancer—stage 4 anaplastic large cell lymphoma non-Hodgkin’s lymphoma. It’s a rare one. Only one or two cases like this are seen per year in the region. We are sad to say the lymphoma has spread to Nils’s spleen, lymph nodes, and behind his lungs. With treatment, there is a high chance of relapse, and there is a low rate of success beating this. He also has HLH Hemophagocytic lymphohistiocytosis autoimmune disease, which is also life-threatening, with an underlying infection still unknown.” Nils was only 13 years old.
Berggren was at a loss as to how her seemingly fit, young son could be playing football one day and terribly ill the next, “I wanted to believe that this was a nightmare. We will wake up, and all will be back to normal. I will pick Nils up from school, and we will be back to having our great talks in the car about his girlfriends and friends. I will keep telling him to put his shirt on before dinner. I will tear him away from video games and antagonising his twin sister Claire. I wanted our life back. Nils was then moved to the cancer ward. I walked beside his trolley bed as we moved him through the maze of hallways toward his private room. I saw the words written on the wall: Cancer Ward.”
The truth about childhood cancer
According to Dr Krista Francisco, Resident Physician – Paediatric Haematology/Oncology/BMT at NUH, “childhood cancers are so rare that they are often difficult to diagnose. It is not uncommon for symptoms to be present for days or weeks before a diagnosis is confirmed.” And in terms of Nils’ prognosis, “lymphoma is a cancer of the lymphatic system. This includes the lymph nodes, spleen, thymus gland and bone marrow. Nils had an aggressive type of lymphoma, and when he was diagnosed, it had already spread to other parts of his body. Stage 4 means a cancer that is metastatic.” While adolescent cancer is uncommon, “the Singapore Cancer Registry reports that a total of 1,400 cases of childhood cancer were diagnosed from 2008-2017. Leukaemias are the most common, with Acute Lymphoblastic Leukaemia (ALL) being the majority subtype followed by myeloid leukaemias. This statistic also holds true worldwide. Other common types of cancer in childhood include brain tumours, neuroblastoma, and lymphomas.”
There are also distinctions in the disease in minors. “The types of cancers that occur in children are different from adults. Unlike adult cancers, childhood cancers are not linked to lifestyle or environmental risk factors. This is why lifestyle changes do not play a major role. It’s also important to note that only a very small percentage of childhood cancers are caused by DNA (gene) changes passed from parents to their child. We emphasise this because one of the most common questions parents ask us is “was it something we did?” One of the things parents find difficult to grasp is that, most of the time, the cause of a childhood cancer is not known and that there’s nothing a parent can do to prevent their child from getting cancer.”
On that fateful day, Berggren felt helpless and all she could do was pray, “keep Nils alive, don’t take him. It is not his time to go. Take care of him. Take care of me so I can take care of him. Let him live through this and help me to be strong for him and with him. We can do this, all of us. Thank You for listening to me.” Even though the medicinal and scientific viewpoint is of great importance, so is the human one. As a parent, Dr Francisco feels the impact of having to deliver such a heart-breaking message, “when a child is diagnosed with cancer, it affects every family member and every aspect of the family’s life. It is not just medical. It is a physical, emotional, mental and financial burden. Knowing that you are the bearer of such devastating news, and how you communicate affects how parents cope, is a big responsibility. Being a mum myself, I cannot help but feel their pain. And as doctors, we also worry about how the child will respond to treatment. However, those first few days are the most difficult as parents are still trying to come to terms with the diagnosis. It then becomes our responsibility to remain objective and steadfast for them.”
“Most of the time, the cause of a childhood cancer is not known and that there’s nothing a parent can do to prevent their child from getting cancer”
Taken away too soon
After a year and a half of agonising treatments, chemotherapy, radiation and long periods of isolation, Nils beat cancer. Nevertheless, a short few months later, complications arising from a stem cell transplant tragically took his life. “It was unbearable. There are no words for losing a child to death’s door. I did not want to go on. It took me seven months to pull myself together to start the healing journey. I began with a therapist then I added somatic therapy, trauma release exercises (TRE) and mediation. I did this three times a week for three months. I also sought support from a dear friend, a healing practitioner, who took me on long nature walks, allowing me to be in touch with my emotions and lean on her for support.” Releasing pain was only part of the process for Berggren.
In the words of Dr Francisco “cancer is a long and challenging journey we embark on with the children and their families. As such, we form a lasting bond with them. We consider this bond, together with the amount of trust given to us, a privilege. It is this privilege that I remember most about Nils and his family. Nils was already a teenager when he was diagnosed. He was very strong-willed and I admired how his mom, Lesli, made sure to involve him in the discussions and decision-making about his treatment. He went through so much but he never gave up and just kept going.”
“For patients with cancer, the future is often unknown, and hope is what keeps them alive. Hope is one of the greatest allies supporting quality of life.” It is for this reason, to help provide hope and support for pediatric patients and their families that Berggren founded Love, Nils.
“Hope is one of the greatest allies supporting quality of life”
To help is to heal
And the hope is not unfounded. “What is good to know is that the number of deaths from childhood cancer have remained small throughout the years. And of the 1,400 cases of childhood cancer in Singapore diagnosed from 2008-2017, 75 per cent of them achieved remission and progressed to survivorship.” Dr Francisco describes the fight against cancer like “going on a very long rollercoaster ride with its unpredictable twists and turns. Finishing treatment, and achieving remission, is like finally being able to step off the rollercoaster onto a steady platform. To me, it feels very much like winning the lottery—with overwhelming feelings of gratitude, relief and happiness.”
Of extreme anguish, charitable organisation Love, Nils was born. After Nils’ passing, Berggren stepped away from her own graphic design company and jewellery design business. An annual toy drive started in 2015 for adolescents fighting the disease led her to register her non-profit two years later—the name being symbolic of Nils’ sign off to thank you letters to his supporters. Mental wellness and holistic treatment is Berggren’s focus—to assist in managing the suffering, trepidation and emotional ramifications of dealing with long-term illness. While medical therapies are critical, “guidance, emotional, social and community support are just as crucial. They can sometimes be the difference between life and death. Love, Nils works with respected medical and therapeutic professionals to ensure a holistic range of care and support for children with cancer and their caregivers.” A number of free programs like education support, art sessions (art kits and camps), toy donations, pen-pals, VIP visitors and more are offered for families. Childhood cancer awareness events are provided and the charity also works with corporates, local and international schools for volunteering opportunities, drive initiatives and fundraising for Love, Nils.
A by-product of serving others has allowed Berggren to heal. Now, she is doing wonderfully well. She has climbed the mountain and has a deep perspective and clarity of the view. “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.”
Love, Nils raises funds to support families fighting childhood cancer. Their upcoming annual fundraiser—Travel the World to support children with cancer takes place on Saturday, 4 December. If you would like to donate to Love, Nils, kindly do so at their website here.