2023-09-14 15:17:48
When the diagnosis falls, the life of an entire family is turned upside down. Arthur suffers from leukemia. His mother talks regarding their daily life and the difficulties they face.
On the morning of September 13, Ingrid Leborgne should be at work and her son Arthur at school, but the six-year-old boy was unable to return to school and the mother was unable to resume her activity. “Our schedule has changed since the illness. We’re both at home“. Arthur suffers from leukemia, blood cancer. The diagnosis fell in April 2022, a date that no one will ever forget.
Since that fateful day, the life of an entire family has been turned upside down. That of a little boy who is no longer at school, but at home or in the hospital, with all that that entails, chemotherapy, lumbar punctures, medications.
Arthur’s state of health is in flux, the family is awaiting medical results: “it’s always the waiting, the stress. It’s very disturbing.“ And as if that were not enough, a multitude of problems are added: “we have to justify to our employer why we are no longer working from one day to the next. You return to the hospital on a Wednesday evening, but on Thursday morning everything stops. Afterwards, you have to do paperwork that you’re not used to doing, that you simply don’t know.“
If Arthur doesn’t go to school, it’s because his immune system is too weak. However, the mother points out needs in terms of schooling: “there is one thing on which I felt a little neglected, it was especially with regard to schooling. We must not kid ourselves, the first year of treatment, we spend a lot of time at home, in the hospital and the fact of not having this follow-up is still complicated. We are not teachers. Each his trade.”
Arthur was unable to return to school. His immune system is too weak. • © Lucie Martin / FTV
Arthur suffers from the situation. When we ask him what he thinks of this life, his answer is clear: “it’s rubbish“The little boy can’t wait to get back to school.”I want to play with my boyfriend. His name is Pierre.“
This is why several dozen associations, researchers, health professionals and families have come together. Thus, Growing Up Without Cancer has made September a golden month. The opportunity to raise public awareness of this cause and all its issues. Throughout the month, media actions are organized throughout France.so that we are listened to even in the highest spheres“, says Dr Elise Quillent, member of Growing Up Without Cancer.
The association advocates in particular for family homes. “When a child becomes ill, household costs increase and specialized centers for treating children with serious cancer are so specialized that they are often very far from the families’ homes. explains Elise Quillent. This sometimes requires relocating a parent, or even the entire family, to rent apartments near hospitals. There is a family hotel for €90 per night, but for children who are hospitalized for several months, or even a short year in wards, these are significant costs.“
Added to these economic difficulties are those of schooling. “It’s a double punishment. Isolation and dropping out of school, sometimes with difficulty returning to the usual school cycle. There are systems, but there is simply a lack of staff. And this is information that we report to the Ministry of Education.”
Furthermore, the foundation also fights for research. Far fewer treatments are on the market for children than for adults. “Finding medications more suited to pediatrics is essential, assures Elise Quillent. Over the last 15 years, only 15 drugs compared to 150 for adults have been authorized for pediatric oncology. It’s really too little.“
All the information on the manifesto for the creation of a public fund dedicated to research into childhood cancers is available on the website Growing Up Without Cancer.
500 children die of cancer every year. It is the leading cause of death from disease in children over 1 year old.
Many events are scheduled as part of Golden September. You can find them on the Facebook page of Growing Up Without Cancer Sum. Among them, one match ice hockey which will pit the Gothics once morest the Dukes of Angers on Tuesday September 19 and a foot race, the Race of smiles which will take place on Sunday September 24. Registration required and free.
With Sophie Picard / FTV
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