He fell asleep at school in the middle of class. But there was also another symptom that Emily had developed that alarmed her mother: the heachache. When Karen Kinsellaof Greater Manchester, has decided to submit the daughter to more detailed checks received a shock diagnosis: tumor to the brain. After the doctors reported the results of her tests, Karen recalls feeling sick, devastated, numb, lost.
Mom Karen reports that it all started with those sudden sleeps. She opened up and told Emily’s story to the British newspaper Manchester Evening News: she said that she often came home to find her daughter asleep with her homework notebooks open on the table. It was 2021 and the woman decided not to give too much weight to those episodes archived as tiredness, or worse as adolescent find not to do homework.
But then the headaches came, frequent and strange, accompanied by involuntary grimaces on Emily’s face. What did Karen do then? She decided to take a picture of her daughter and send it to her doctor. A few minutes after sending the photo to the doctor, the alarmed response arrived: “Take her to the emergency room as soon as you can”. Once in the hospital, the family received shocking news: Emily had a brain tumor.
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The 14-year-old girl was immediately transferred to Manchester Children’s Hospital and underwent surgery to remove the brain tumor within days. It was January 2021. Karen said: «Three days later they came to tell us that the tumor was very serious. They told us they were unable to say how much longer Emily might live.”
The family were told Emily’s cancer was ‘treatable’ but not ‘curable’ and she was referred to Christie Hospital in south Manchester for six weeks of radiation therapy. She should have started a cycle of chemotherapy of 12 months, but a brain hemorrhage and the development of shingles delayed life-saving treatment by several months. Karen said: ‘Emily was the only person in Manchester to finish her chemotherapy. Most children’s bodies could not tolerate it for more than six months. My daughter hasn’t complained once.” After finishing the chemotherapy cycle, the tumor stabilized for a while and Emily was able to go back to living a relatively normal life.
She was unable to resume school but her art teacher kept in touch with her and Emiliy sometimes went to school for lunch to see her friends. Why exactly his prof. did you take art to heart? Simple: Emiliy has a marked artistic sensibility. Before she started treatment, before she found out she was sick, before she knew a brain tumor was growing inside her, Emily had been selected as the BBC’s Young Artist of the Year.
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“When he finally got the call to cast, it broke my heart when I realized his life had changed,” Karen said. So no casting and new problems instead. Emily began to have difficulty swallowing and doctors at Manchester Children’s Hospital advised her to have another CT scan. The original tumor had returned and a secondary tumor had appeared, rendering it inoperable. Karen said: «Christie’s agreed to have 10 radiotherapy sessions at a lower dose, but then she ended up in intensive care because she could not breathe and was put on oxygen. She was there for six days and we were told to prepare for the worst twice. By then she had pneumonia and her lung had collapsed. But she didn’t give up. They thought she wasn’t going to make it. Her friends have all come to say goodbye. Then all of a sudden she started breathing on her own and they managed to cut off her oxygen. The doctors and nurses said that it was a miracle».
Emily, now 16, has finished radiation therapy and was able to spend Christmas at home with her family. Karen says now they’re betting everything on an experimental drug, which is currently only available in America or France. She said, “The hope is that she can keep Emily alive until something comes along. It won’t cure her, but it may prolong her life and that’s all we want for her. We’d like Emily to be on the drug for a few months and then we’ll start lobbying the UK government to give her access.”
The latest updated news dates back to December 20, 2022. Mother Karen says she arrived in France through the Channel tunnel which is the safest way to travel due to the pressure of the tumor in her brain. “We spent the day at the Gustave Roussy Cancer Institute in Paris and we returned with a month’s supply of the investigational drug ONC201. Hopefully, we will return to France for another month’s supply on January 24, 2023. We are aware that there is currently no cure for the nasty tumors in Emily’s brain, especially the new brainstem tumor, but this drug it has the ability to curb the rapid fatal growth and even, in some circumstances, reduce the size of the tumor,” Karen writes on Facebook. “We intend to lobby our MPs to get the drug in the UK, on the same basis as in France, Switzerland and the Netherlands. So people with very sick children won’t have the anxiety of dealing with costs in excess of £4,000 a month. It took a Frenchman 10 months to obtain the drug: too late and in any case not in time to help her son », she writes again recalling the fundraising started for Emily, in order to allow her the last possible cure.
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Brain tumor, fell asleep at school and didn’t know why: shock diagnosis for a 14-year-old girl
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