As we celebrate International Women’s Day today, we bring you a series of articles and interviews that are in line with this year’s theme “Each for Equal”. Join us as we celebrate womanhood and challenge gender stereotypes, broaden perceptions and celebrate individual female achievements!
In 2017, Lesli Berggren founded LOVE, NILS, a Singapore-registered charity that provides children suffering from cancer and their caregivers with healthcare guidance, emotional care, social and community support. At age 13, Lesli’s son, Nils, was diagnosed with a rare form of lymphoma stage 4 cancer. Lesli then spent the next 18 months caring for her son as he received medical treatment both in Singapore and in the USA. Lesli quickly realised that while traditional medical care is of utmost importance for children fighting cancer, emotional, psychological, mental, physical and spiritual support are also crucial, although it is not always possible for hospitals to provide this support.
Throughout his battle, Nils maintained his positivity and fighting spirit. He spent time writing letters to family and friends asking for prayers and strength. He always signed off as “Love, Nils”. Although Nils beat cancer after treatment at Singapore’s National University Hospital (NUH), complications arising from a stem cell transplant tragically led to his passing months later. Today, LOVE, NILS stands to embody the hope he showed, supporting other children and their families as they navigate their treatment process. We speak to Lesli to learn more about her work in LOVE, NILS and the woman behind it. To keep all the record in system is an hard task. to make a pd of document and compress that pdf from the sodapdf, which provide the best and easy method for that.
Q: Firstly, thank you for spreading love through your charity LOVE, NILS support for children with cancer, which is incredible considering how you had experienced the loss of your son. Could you share a bit of the ups of downs during that period where you were caring for your son?
Thank you for giving me the opportunity to share.
Taking care of a child with cancer is a 24/7-hour responsibility. There are no babysitters in the hospital to give the caretaker a break to get a cup of coffee or go home to rest, to be with their family. Isolation sets in. It is a very lonely place for both.
You have to answer questions you never thought you would for yourself and the ones your child asks: Why me? Why my child, my family?
You soon come to realise the reality is not the battle to beat cancer, it’s the emotional fall out of cancer…for the entire family. Who knew cancer could affect an entire family? Cancer is family-centric.
The issues of cancer with a child is that it becomes the ‘new normal’. It never goes away until the cancer does, or sadly, if they pass.
But the upside is so incredibly rewarding; to be confidentially close to your child, their every thought, need and idea is with you. Time stands still. It is one of the greatest gifts of an illness, if you can imagine that, to be completely present at the moment. You take advantage of every moment. Life can change in a cancer minute.
The most amazing part of taking care of a teenage son with cancer is the fact that they tell you things they would never normally tell their mother, never in their life. It brought me closer to my son than I ever knew possible. It was the best possible mother/son relationship I could have imagined. I am so blessed to have had that time with him. And later, I have this nature of relationship with his twin sister, my daughter.
Q: How did you and your family manage to cope during that period?
It took me a while for cancer to settle in and for me to seek support. My son needed it, I needed it, my family needed it.
My community rallied. There was a point person I told my needs to and she implemented the outreach. Food was delivered to my home 4 times weekly, 1 time daily to the hospital; people I did not know did our family’s laundry, attended to my daughter’s needs while I was in the hospital with my son, cleaned our home and more.
I looked at the care my son needed besides the medical. How could I bring the normalcy back to his life? I reached out to his school to connect with him via social media, care packages, letters of encouragement. I engaged with TEAM IMPACT who matched him with a USA college football team (his favourite sport to participate in) the Princeton Tigers who wrote him letters monthly. I found him a psychiatrist and me too, physical therapists to come to our home to help him to walk again. I reached out to the priest at our church to help me find ways to support a teenager with cancer who was about to give up. I enlisted college students to come and sit with him to engage him, and a tutor to keep his mind active and off the focus of cancer. I finally had to hire outside nursing staff, when he was immobile, to help me with him. I engaged yoga and mindfulness practitioners, art and music therapists. I continued to tell my son’s story weekly via social media and ask for support, prayers and encouragement. It takes a village to support a cancer child and their family.
Q: How does LOVE, NILS help caregivers with healthcare guidance, emotional care and support?
We provide a Care Coordinator to NUH paediatrics oncology wards. They help guide patients and caregivers through the healthcare system. They work to overcome obstacles in the way of the patient getting necessary care and treatment. They provide emotional and community support through integrative therapies, housing and non-insured needs such as transportation, childcare and outside nursing care.
They help patients/families understand their diagnosis and any other concerns that may arise. The Care Coordinator’s role is integral. It begins at the time of diagnosis and they help encourage and empower, taking the children and their families through every step of the journey.
Open Art Sessions: for the entire family to express their emotions. Many times, it is too difficult to share what is going on internally, the pain, the fear. Delivered by our licensed art therapists, these art sessions are a regular feature on the LOVE, NILS calendar, at two hospitals and help the entire family work through the emotional fallout of cancer and treatment.
Calendar of Hope: We provide free monthly tickets to musical concerts, plays and events. These can help inspire the children and give their entire family a momentary respite from the gruelling cycles of chemotherapy and various medical procedures. A day off cancer.
Pen Pals: We engage student volunteers who write letters of encouragement and compassion to parents, patients, doctors and nurses.
Q: Have you faced any difficulties/speed bumps since founding LOVE, NILS?
Since becoming a newly registered Singapore charity, we have had our challenges. Getting to ‘Yes’ when we have been told ‘No’ has been a hurdle. But my team works tirelessly at getting to Yes.
Being a staff of one person, in the beginning, had its challenges. I did not have inherited money that I could throw into a charity, I had to raise funds by myself and with my dedicated team. I had to find like-minded individuals for support. A huge hurdle was trying to get the public to understand the real story of what it is like to be a child/family with cancer.
Learning to work with administrators and operations of hospitals has been not easy. But we persevere.
Raising funds is always a challenge for a new charity. We aim to support a local need; it does not always register with a Singapore community when an expatriate is the voice of change. But once they hear my passion, it works.
It’s quite difficult when corporates, schools and organisations want to have ‘hands-on’ sessions with kids with cancer. Because we support kids that are critically ill, life and death.
Singapore is the hub for medical excellence in South East Asia, especially for childhood cancer. They need support for the emotional fallout of cancer, and that is what LOVE, NILS is trying to provide. To fill in the psychosocial gaps.
Q: What is your vision for LOVE, NILS for the next 5 years?
Our vision is to be a beacon of hope and resilience for children with cancer and their families, to create awareness about the untold story of childhood cancer, expand our programmes and hopefully provide housing for families being treated with childhood cancer from abroad.
My goal is to institutionalise LOVE, NILS.
Q: What message do you have for families of patients who are currently battling cancer?
Reach out to their community. Let them know you need help. Tell them where you need the help… pickup siblings from school/activities, bring meals to the caretaker in the hospital, ask for them to sit with the patient. Ask them to call, visit and talk to you about your situation.
To take care of themselves so that they can take care of the patient.
Take one day at a time.
To learn more about LOVE, NILS and how you can either support them or reach out if you’re a family going through cancer, please visit their website at https://www.lovenils.org.
Images: Lesli Berggren and LOVE, NILS