Each year, dozens of children living in Luxembourg are diagnosed with cancer and have to seek treatment in a neighbouring country, leaving families far apart and juggling supporting a sick child, siblings at home, work and the household.

Last year 31 children and teenagers were diagnosed with the disease and most of them needed to travel to Nancy, Brussels or Saarland for specialised treatment.

The Fondatioun Kriibskrank Kanner – a foundation which has existed in Luxembourg for 35 years – helps families when a child is diagnosed with cancer. It provides psychological support to the whole family, takes care of administrative aspects such as filing for special leave from work, and pays medical bills for families.

The foundation’s psychologist, Katya Gonçalves, holds consultations with patients, their parents, siblings, those who are in remission, as well as cancer survivors and their families who want ongoing psychological support years after receiving the all-clear. Gonçalves also supports adults who were diagnosed with cancer as children and are feeling the psychological effects years or decades later.

“A cancer diagnosis on a child shakes up the whole family,” Gonçalves said. “Children with cancer do know about their illness. They know something is wrong because they stop going to school and they often know how to explain it and know it is a serious illness. It’s important the child knows where he or she is at in the treatment.”

Impact on the whole family

Gonçalves holds a first consultation with the parents to find out what the child knows and what the parents consider to be the particular challenges for that child. She then meets the child, either with a parent present or alone.

“I see what the child has understood from the doctor,” she continued. “I need to adapt my words according to the child’s age. The consultation is different if the child is six years old or a teenager, and I also explain to the parents how to say or announce certain things to their child.”

Stock photo of a doctor speaking to a parent © Photo credit: Fondatioun Kriibskrank Kanner

Parents are entitled to a so-called “extraordinary” long-term leave for family reasons if their child suffers an “exceptionally serious illness or disability” such as cancer or a condition requiring hospitalisation for more than two consecutive weeks, the CNS website states. Only one parent can take the leave at any given time but they may relay the leave.

It is particularly difficult for siblings to see their brother or sister go through cancer and the healthy sibling must stay in Luxembourg and continue to go to school.

“They often miss their sibling and the parent who are in hospital,” Gonçalves said. “It can cause them emotional and physical distress to be so far apart. I sometimes see a regression in their behaviour – they may start to wet the bed at night, be absent-minded in school, cry often, feel lonely and sometimes become aggressive. I try to give the sibling a free space to identify where these emotions come from and allow them to express their feelings.”

Luxembourg pediatric cancer diagnosis 2024

The most common types of cancer diagnosed among children and teenagers in Luxembourg last year were leukemia (8), brain tumour (8) and Hodgkin’s lymphoma (3), data from the Fondatioun Kriibskrank Kanner shows.

The highest proportion of the 31 youngsters diagnosed last year sought treatment in Nancy in France (8), followed by Homburg in Saarland (4) and Huderf hospital in Brussels (3).

Gonçalves advises a parent who is away from the family home for extended periods to record themselves reading a bedtime story, for example, or call the sibling at a specific time to continue a routine with that parent.

How the foundation helps

Fondatioun Kriibskrank Kanner pays all the bills linked to the child’s treatment and contacts the CNS themselves for their reimbursement. This means families do not need to pay for medication, treatments or transport to hospitals. The foundation has allocated rooms near the Brussels hospital where the parent accompanying the ill child can stay. For those seeking treatment in other hospitals, the foundation can rent a room for the parent.

Many bordering hospitals know about the Luxembourg foundation and put them in touch with the parents, but not everyone is aware of the different ways the foundation can help. All parents whose child is diagnosed with cancer may contact the foundation.

Psychologist Katya Gonçalves © Photo credit: Foundatioun Kriibskrank Kanner

The foundation also takes care of administrative procedures such as applying for the extraordinary leave from work on behalf of parents, allowing families to focus on their child without having to worry about filing paperwork.

They can also send specialised educators to the family home to help out with the healthy sibling.

Families tend to go to the hospital which is best equipped for the type of cancer their child has, and they also take into consideration the linguistic aspect, choosing between France, Belgium and Germany according to the language they understand best.

Finding the right words

“Daily life is turned upside down,” Gonçalves said. “The parent who stays at home has to go to work, look after the house, look after the sibling, take over the role of the other parent, they both have to be present for the ill child, and they have to look after their own relationship as parents and a couple. They are not in the same place and they both have so many things to manage and juggle. They are scared for the ill child and they struggle with their own emotions, they often go into autopilot mode.”

When doctors announce a terminal diagnosis, it is important for parents to explain to the ill child and siblings what is going to happen using the correct terminology, Gonçalves said.

“We recommend that a child knows if they are going to die,” Gonçalves said.

The foundation’s psychology consultation room © Photo credit: Fondatioun Kriibskrank Kanner

It is better if a doctor or the parents tell the child and Gonçalves can either advise the parents how to go about it or be present during the conversation. Some parents do not want to use the word dying when telling siblings and prefer to explain that their brother or sister is going to go to the sky or will leave.

Using words such as leave, the sibling might think they will come back or that they can see their brother or sister in the sky if they take a plane one day, the psychologist said.

“It’s important to use the right terminology so they know what’s happening,” she added. “It’s very difficult to use the correct words, but it’s important for the child’s comprehension. It is essential that the ill child knows, otherwise he or she will know something is happening but won’t know what.”

Through donations and various fundraising events, Fondation Kriibskrank Kanner supports research into pediatric cancers. Research into adult cancer does not necessarily apply to childhood cancer as they are very distinct and require different treatment. What could work for an adult often has no effect in pediatric cancers, according to the Pediatric Cancer Research Foundation.

The Luxembourg foundation will organise its annual Lëtz Go Gold event on the 27 September this year. Participants will gather sponsorships to run 1.5km, 5km or 10km to raise money for research into pediatric cancer.