Each year, in Europe, nearly 2,300 children and adolescents under the age of 18, including around 1,800 before the age of 15, are affected by cancer. Based in Marseille, the “Sourire à la vie” association supports children and their families. At the Phare des Sourires, Graciela, 12 years old, and her mother Claudine, who are currently receiving support, give their testimonies.
What is pediatric cancer?
Pediatric cancers are rare diseases before the age of 18. They represent less than 1% of all cancers in Europe and they are, for the most part, different cancers from those of adults. They are the leading cause of death from disease in children over 1 year old. According to figures from the national childhood cancer registry, nearly 2,300 children and adolescents under the age of 18, including around 1,800 before the age of 15, are affected by pediatric cancer. In children under 15, the most common types of cancer are leukemia (28%), central nervous system tumors (26%), and lymphoma (10%).
However, the good news is that the vast majority of patients recover. Over the period 2000-2016, the overall survival rate of children under 15 years old is estimated at 92% one year after diagnosis and 83% five years after diagnosis, according to the National Cancer Institute. Moreover, the fight against pediatric cancers is the priority of the institute as part of its ten-year strategy 2021-2030.
To talk about this subject, TipsForWomens went to meet Claudine, the mother and Graciela, 12 years old affected by two pediatric cancers. They testify.
“With Sourire à la Vie, we are happy to be here”, Claudine, mother of Graciela
Graciela’s first cancer was diagnosed last year in February 2022. Ovarian cancer which was treated at Timone hospital in Marseille. “ Very quickly, we became acquainted with the Sourire à la vie association. Several professionals came to see my daughter to take care of her health and also entertain her. She didn’t always want to, but they know how to do it by creating a bond », says Claudine, 51, before adding: “ They offer adapted sports and encourage them to move ».
Graciela undergoes several chemotherapy sessions
After a full week of treatment, she goes home for two weeks of recovery. It was during this “rest” period that Graciela went for the first time to the “Lighthouse of Smiles” in the Estaque district of Marseille for a day reception. On the program: games, sport and care, according to the needs of the sick child. So, last year, the young girl came to the Lighthouse a few times, for a day. “ This was a relief to her because outside, my daughter never talks about her illness. But here, she meets other children, who are going through the same thing and with whom she can share », confides his mother. And, Graciela even rediscovered the piano (which she played when she was younger) and participated in cooking workshops.
Then, in February 2023, leukemia broke out following treatment of the first cancer. A bone marrow transplant is necessary. Luckily, a compatible donor was found in Poland and Graciela was transplanted on June 2, 2023, after several chemotherapy sessions.
After the transplant, a transitional stay at the Lighthouse
His referring doctor then offered him a longer stay, of 4 days at the Phare des Sourire, which sounded like a smooth transition, before returning home. For Claudine, this proposal, after 1 and a half months of self-sufficient life in a transplant unit, is wonderful. ! « It was freedom, because we knew what it was like ».
On site, mother and daughter enjoy a large, cheerful, bright room, with large bay windows opening onto the sea. « For Graciela, it was like a 5-star hotel. Marie, the cook, made us good little adapted dishes. At the hospital, Graciela didn’t eat anything, while Marie managed to make her eat what she didn’t like », remembers Claudine. During the day, they play games, receive visits from professionals or a young patient. A 100% supported stay that offers them a real respite. Moreover, Graciela’s big brother was even able to take over from Claudine for a day and a half. For her, “ it’s a wonderful place. Many bonds are created between children and families. We understand each other ».
Today, looking back, Claudine believes that this stay did her a lot of good as a caregiver and gave both of us a boost of energy. “II could rest and lie down because I knew my daughter was with the supervisory staff. We are happy to be here. My daughter was no longer the same between leaving the hospital and after this stay”. And this summer, Graciela had the opportunity to go alone, this time, with other children her age. Since the start of the school year, she has continued to come once a week, on Thursday, to the “Lighthouse of Smiles”, while waiting for her complete recovery, within 5 years.
“Always be positive, come to the Lighthouse on Thursday for fun, dream… of going to Polynesia with the association, know how to take care of yourself”, Graciela’s mantras
While his smiling face illuminated the communication of Sourire à la Vie during the month of September, dedicated to pediatric cancers, the bubbly Graciela remains true to her image. Flirty, like many young teenagers her age, she confides in all simplicity about her daily life.
« Smile at Life came to me during my first cancer. During my four courses of chemo, I saw them all the time. We did sports, played Just Dance on the Wii, at power 4, Uno…it felt good to get out of my room. Then, when I was in remission, I came here, at l’Estaque, during the day. I had heard a lot about this place.
Like on vacation…
“After the transplant, I came for a long stay so as not to have to come home abruptly. I was like on vacation, I played games, watched television. I felt very good. Then, during the summer , I went on another trip alone, this time. It was a desire on my part. I felt more free, because all the rest of the time I am with my mother (who stopped working) 24 hours a day.. There, I was in a small community (i.e. in a small group) with children my age. We can share our experiences. We even had an escape game outside. This stay was even better than the first ».
Graciela, hardworking and determined
Since the start of the school year, she has returned to the Lighthouse every week. “ It’s my Thursday treat. I’m having fun rather than being at home ». As for her dreams, Graciela has plenty of them : « go with the association to Polynesia, visit New York with your big brother, later settle in a foreign country, be your own boss, have children…“. In the meantime, the young girl, who is following (brilliantly) 5th grade courses, is giving herself the means to believe in her dreams: “ I am diligent in classes, positive and stubborn ». At 12 years old, she admits not having the same vision as other friends her age. Even if she likes to make videos (just for herself), there’s no question of being addicted to her phone. “ I know how to take care of myself, Ilisten to music. I like being by the sea “. Aware of being well surrounded by her family and very attached to them, she has a different, philosophical outlook on life. “ Everything that happens to us in life is to bring us a message, but as far as I’m concerned I don’t yet know which one… », concludes Graciela.
Focus on the Sourire à la vie association
Created in 2006, this association specializes in pediatric onco-hematology, but has expanded to include chronic pathologies. Its aim is to offer support throughout the child’s journey, based on multiple sporting and recreational activities as well as supportive care. On medical recommendation, the association works at the hospital by offering various sports and fun programs. The Lighthouse of Smiles, a medical center located in the Estaque district of Marseille, also welcomes children for the day or for periods of 2 to 10 days. These can be care or collective stays (10 to 15 children). The association also organizes trips abroad (expedition to Lapland, crossing the Mediterranean by catamaran, etc.) for children, preparing them for several months.
A second structure is being renovated in Ste Marthe. The Château, made available by the Ricard family, will be intended to accommodate around fifty children for group stays, around ten for care and respite stays as well as in palliative care, with their families. It is expected to open in 2024-2025. To make a donation, go to the Sourire à la Vie website