A young girl from Pont-Rouge, just 5 years old, struggling with a rare and deadly brain tumor is now in New York City hoping to extend her young life.
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On May 31, Florence Gagné was diagnosed with diffuse brainstem glioma (DIPG), a tumor that prevents cerebrospinal fluid from flowing and causes intracranial pressure. This incurable cancer left him with a life expectancy of between 9 and 12 months.
Faced with this diagnosis, his parents decided to do everything to “save time” and hope that science can pinpoint a treatment. “We try to buy time with different protocols that are promising, that work well,” explains Florence’s mother, Stéphanie Morissette.
Last summer, the little one underwent radiation therapy, which happily reduced the size of her tumor by 20%. In September, she flew to the United States to participate in an experimental protocol aimed at stopping the growth of the tumor and, at the same time, prolonging its life expectancy. “There are children who were six months older, but others who are still there nine years later,” says his mother.
The Florence operation was to take place on September 30 in New York. But the procedure was canceled at the very last minute, due to a medication error. The procedure is postponed to October 13.
“We were very disappointed. Excessively disappointed, ”she said, especially since Florence has to undergo the operation a maximum of 14 weeks post-radiation. “We have until the end of October. After that, we are no longer eligible. ”
In the last few days, Florence began to show symptoms of her tumor, including vomiting, headaches and extreme fatigue. “She slept 18 hours a day,” her mother says.
The little one was taken to the emergency room, where she had to be operated on urgently due to complications. But another difficulty, extremely rare, arises as a result of this intervention. In convulsions following a cerebral hemorrhage, Florence must be intubated and her parents fear the worst. Fortunately, her condition is stable today.
These misadventures, however, have been bad for good. Florence could not have endured this mishap if it had happened after the operation. “It would have been too much for his brain. It would have been catastrophic. They confirmed to us that we would have lost our daughter ”, confides Mme Morissette.
Whether Florence can be operated on remains to be seen now. In addition to this uncertainty, all of these reversals come at a price. The protocol cost US $ 150,000 and the bill for 48 hours spent in intensive care following the bleeding is an additional US $ 150,000. And the counter continues to run.
As insurance companies and the government have so far refused to provide financial support, a crowdfunding campaign has been launched. As of Wednesday, the “Support Flo, the Warrior Princess” page raised nearly $ 190,000 of a goal of $ 375,000.
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