He fell asleep in the middle of class at school. But there was also another symptom Emily had developed that alarmed her mother: a headache. When Karen Kinsella, from Greater Manchester, decided to get her daughter a more thorough check-up received a shocking diagnosis: brain tumor. After the doctors reported the results of the tests, Karen recalls feeling sick, devastated, numb, and lost.
Mama Karen reports that it all started with that sudden sleep. She opened up and told the British newspaper Manchester Evening News Emily’s story: She said she often comes home and finds her daughter asleep with her homework books open on the table. It was 2021 and the woman decided to give too much weight to episodes archived as fatigue, or worse, not doing homework as a teenager.
But then the headaches came, frequent and strange, accompanied by involuntary grimaces on Emily’s face. Then what did Karen do? She decided to take a picture of her daughter and send it to her doctor. Minutes after the photo was sent to the doctor, the alarmed response came: “Take her to the emergency room as soon as possible.” At 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 within days underwent surgery to remove the brain tumour. It was January 2021. Karen said: “Three days later they came to tell us that the tumor was very serious. They told us they couldn’t tell how long Emily would live.”
The family were told Emily’s cancer was “treatable” but not “curable” and was referred to Christie Hospital in south Manchester for six weeks of radiation therapy. He was scheduled to begin 12 months of chemotherapy, but a brain hemorrhage and development of shingles delayed life-saving treatment by several months. Karen said: “Emily was the only person in Manchester to have completed her chemotherapy. Most children’s bodies couldn’t take it for more than six months. My daughter never once complained.” After completing the chemotherapy cycle, the tumor stabilized for a while and Emily was able to lead a relatively normal life again.
She couldn’t go back to 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 professor did you take art to your heart? Quite simply: Emiliy has a strong 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 voted Young Artist of the Year by the BBC.
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“When he finally got the call to audition, it broke my heart to realize that his life had changed,” Karen said. So no casting and new problems instead. Emily began having trouble 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 emerged, rendering him inoperable. Karen said: “Christie agreed to have 10 radiation therapy sessions at a lower dose, but then she ended up in intensive care because She couldn’t breathe and was given oxygen. She was there for six days and we were told twice to prepare for the worst. By that time she had pneumonia and her lungs had collapsed. But she didn’t give up. They thought he wouldn’t make it. Her friends have all come to say goodbye. Then she suddenly started breathing on her own and they managed to cut off her oxygen supply. That’s what the doctors and nurses said it was a miracle».
Emily, now 16, has finished radiotherapy and has been 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 he can keep Emily alive until something comes along. It won’t cure her, but it might prolong her life and that’s all we want for her. We want Emily to take the drug for a few months and then we will be lobbying the UK Government for access.”
Latest updated news is from 20th December 2022. Mom Karen says she came to 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 came back with a month’s supply of investigational drug ONC201. Hopefully we will return to France on January 24th 2023 for another month’s supply. We are aware that there is currently no cure for the nasty tumors in Emily’s brain, particularly the new brainstem tumor, but this drug has the ability to stem this rapid deadly growth and even reduce the size of the tumor in certain circumstances,” writes Karen on Facebook. “We intend to get our MPs to get the drug in the UK on the same basis as France, Switzerland and the Netherlands. So people with very ill children need not worry about dealing with costs in excess of £4,000 a month. It took a Frenchman 10 months to get the drug: too late and definitely not in time to help his son,” he writes again, recalling the fundraiser launched for Emily to give her the last possible cure make possible.