“It felt like the ground had fallen out from under our feet,” Louis’ father Christophe says of the diagnosis. “At that moment, shock took over completely. We could just about manage to function.”
Nowadays, Louis is recovering from his ordeal at home on his family’s farm in Luxembourg. But immediately after the diagnosis, the family was swept up in a whirlwind of treatments, as the little boy was hospitalised again and again over a period of six months. First, Louis underwent chemotherapy at the paediatric clinic in Luxembourg, then he received proton radiation treatment in Essen, Germany. “It wasn’t a nice time at all back then,” Louis says on reflection. “There was something in my body that I couldn’t feel at all.”
His mother Anne experienced the situation from a different perspective. “It is terrifying to see your child going through something like this. It’s so hard not to compare to others when you think about it... while other kids were at school or playing football, Louis was in hospital, receiving chemo.”
It wasn’t just difficult for Louis and his parents; however, as his treatment required extensive travel, his parents were unable to spend much time at home with his sisters, Anne and Aurélie.
Alongside family members and friends, the cancer charity “Fondatioun Kriibskrank Kanner” provided invaluable support to the Ernsters during this difficult time. In 2023, the foundation assisted over 300 children suffering from cancer, as well as supporting their families. The charity is campaigning for couples with seriously ill children to be able to take special leave for personal reasons - in this case, 52 weeks across 2 years per parent - at the same time. Director Anne Goeres explains that in critical situations, it was vital for parents to be able to support their child and each other during treatment and beyond.
“We would also like the count to restart at zero in the event of a relapse,” she says. “If a child has to start treatment a second time, for example, it will take the same amount of time as the first treatment, so the same should apply for special leave.”
Louis has been cancer-free for over a year now after having successful results from the treatment for his tumour. He says he feels good, although he will most likely have to take medication for the rest of his life in order to ensure his body does not immediately excrete any water he drinks.
For now though, all that remains are concentration problems as a result of his illness, as well as regular MRI scans to check that the tumour has not returned. These can be stressful for Louis, as he says the check-ups remind him of the early days of his illness.
Despite the positive recovery, his mother Anne says it has been hard for her to find closure after the experience, not just because the fear of relapse is always present. She says that after the tense acute phase following diagnosis and treatment, is when she started to truly understand what the family went through. “I find myself reliving everything we experienced”
“The wounds are healing,” says father Christophe, “but it’s a story that stays with us, and maybe we just need to learn to cope with it.”
Despite his experiences, Louis has found happiness again, and says he’s looking forward to driving tractors at the farm and playing football with his friends again.
Thursday 15 February is International Childhood Cancer Day. Every day, around 100 children in Europe are diagnosed with the disease. In Luxembourg, around 30 new patients aged 0-17 and their families seek support from the “Fondatioun Kriibskrank Kanner” to help them cope with diagnosis, treatment, and after-effects. The illness and side-effects of the harsh treatments are far from the only burden for families struggling with childhood cancer.
