Logelheim: A fundraiser to help the parents of a child with a rare cancer
In mid-April, Nicolas and Lucie's lives were turned upside down. Their seven-year-old son Ethan was diagnosed with rare, difficult-to-treat acute T-cell leukemia. Since then, the couple from Logelheim have been living day and night at their only child's bedside at the Hautepierre Hospital in Strasbourg. To compensate for the loss of their wages, among other things, a friend launched a Leetchi fundraiser.
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Nicolas, Lucie and their son Ethan are taking advantage of one of the rare four-hour shared leave (the second in 18 weeks) at the Ronald McDonald House adjacent to the Hautepierre hospital where the young boy suffering from a rare leukemia is hospitalized, to get some fresh air. Photo DR
When Ethan, a seven-year-old boy from Logelheim, suffered from recurring fevers and swollen lymph nodes in April, his parents, Lucie and Nicolas, initially believed, as their doctor had told them, that the child had the flu or Covid. When his condition didn't improve, Ethan was admitted for the first time to the pediatric emergency room in Colmar. "We were poorly received there. At the time, he didn't have a fever, we waited from 7:30 p.m. until after midnight without seeing a doctor, and then we went home," Lucie fumes.
Between blood tests and another visit to the doctor, the worry is far from fading. On the contrary, during another visit to the pediatric emergency room, Lucie and Nicolas learn that Ethan has an infection or cancer. When the little boy is transferred the next day to the hematology oncology department at Hautepierre Hospital in Strasbourg, "we understood right away," Lucie recalls.
Seven-year-old Ethan spends entire days in his hospital room, hoping that a transplant can cure him. Photo DR
The harsh verdict falls: Ethan has acute leukemia , an extremely rare type T, of which "four cases have been treated at Hautepierre in thirty years, with only one saved," Lucie says. Since May 18, Ethan has been hospitalized, and his parents have left their home in Logelheim to live with him, staying at the McDonald house, adjacent to the hospital, which welcomes parents of sick children.
Ethan has already undergone two rounds of chemotherapy, lumbar punctures, treatments that leave him tired and don't relieve his pain. Vomiting and aplasia are his daily lot, not to mention epileptic seizures and thrombosis.
And yet, his father is surprised and admiring: "On a mental level, he is doing quite well; despite some downturns in morale, he is even quite cheerful, fighting his illness with incredible strength and resilience."
Still ill, Ethan would need more chemotherapy, but, his father explains, after consulting a specialist in Montreal, who believes that the staff at Hautepierre are just as qualified as he is, "the risk-benefit ratio would be too dangerous and could cause irreversible brain damage."
"We don't want our son to die," Lucie worries. One hope remains: a bone marrow transplant, already scheduled, which will depend on a new test that Ethan is scheduled to undergo this Monday, September 8, the results of which will not be known for another ten days. The chances of him entering a new CAR-T treatment protocol (injection of genetically reprogrammed cells) are minimal.
However, Lucie and Nicolas want to believe it. Their perception of life has changed. "We spent a lot of time renovating our house , probably not enough time with him. If he recovers, we will enjoy life to the fullest with him and fulfill his dream of going to Tahiti," Lucie hopes.
In the misfortune that has befallen them, the two spouses count on precious support and thank the nursing staff, who do all they can "despite lack of resources", work colleagues who offered them days off so that they could stay at Ethan's bedside and Franck Muller, a colleague of Nicolas.
The latter has set up an online Leetchi fundraiser (named for Ethan) to help the couple compensate for their lost wages or to help with the housework, which has become secondary. Selflessly, they both promise to also donate a portion of the fundraiser, which now stands at around €15,000, to research and the oncology department at Hautepierre Hospital.
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