Life prolonging cancer treatment

My name is Karen Kinsella and in January 2021 our family lives fell apart, we had the heartbreak of discovering our beautiful daughter Emily, (aged 14) had a very nasty brain tumour. Within days of diagnosis she had brain surgery at Manchester Children's Hospital to remove the bulk of the tumour, followed by 6 weeks at The Christie on combined radiotherapy/ chemotherapy. ( which Emily thoroughly enjoyed ) yep did I mention she’s a bit weird. During this time she also dealt with seizures due to the area of the brain that was operated on, unknown brain bleeds and bleed within the tumour itself, throughout she has been amazing, and she has an exceptional team of professionals caring for her, all of this was during COVID conditions which meant as a family we were torn apart when we needed each other’s and our friends support more than ever. After many delays Emily is now coming to the end of a gruelling further 12 months of intensive chemotherapy, she has broken through so many trajectories at every stage, nobody at the hospital has ever got this far on the chemotherapy treatment, at the level she has tolerated and she WILL finish her last month. It has come at a massive price to her body and in particular her mental health, we are dealing with these issues on a day to day basis. Her strength and determination continues to be awe inspiring and we are proud of her every single day not only in her treatment, but everything else that’s been thrown at her these last few months.

Emily’s tumour has shrunk from the size of a tangerine to the size of a finger nail ! However Emily’s tumour is aggressive, ‘Rapidly fatal’ stage lV midline glioma , unfortunately we have now been told that scans don’t show the full picture, it’s highly likely that the cancer is within the brain stem, and clinically proven will recur. There are no further treatments available in our country, but Emily’s team have given us a glimmer of hope with a trial drug in America (ONC201) we are still awaiting costs and details of what will hopefully be a life prolonging drug, but we know we have to travel and self fund. We have been saving up since day one, we are in the process of putting our home on the market and down sizing, and I don’t want to ask for money at this difficult time that everyone is going through but We would ask our friends and family to share our story in an attempt to think of fundraising ideas we can do, hopefully Emily will be well enough to get involved too and have the company of friends she’s missed that will help take her mind off this next stage of treatment, and we can only hope she will get her wish to live in a house, in a field with 2 goats ❤️