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My Fight, My Hope, My Life: Charlotte’s Journey with Brain Cancer Told in the first person by Charlotte’s mother 18.2.97 - 24.2.16 Charlotte’s Diary Living Around Medication and Treatment 7th November 2013 I'm so tired of having to take 50 pills a day. My whole day seems to revolve around medication. Just four months ago, I had no idea that this monster, as I often call it, was growing in my brain. Now, everything about my daily life seems to be dictated by it. I'm becoming increasingly concerned about my vision. It feels as though there is a layer of cling film covering my eyes, and it's getting harder and harder to see clearly. I've mentioned it to someone, and they said they would keep an 'eye' on it! Joking apart, steroids have been mentioned, but I really can't face taking them again. The weight gain seems almost immediate. I'm also having to take potassium tablets, which I'm finding really difficult. They are dissolved in water & the taste is vile that they make me gag. It's so bad that I've made everyone in my family taste it so they can understand what I have to put up with every day! Another thing I'm worried about is that they've stopped my Temozolomide chemotherapy because my platelet levels were so low. They keep reassuring me that radiotherapy is far more important than chemotherapy at the moment. I suppose they know what they're doing, but I can't help questioning it. Sometimes I wonder whether they're all reading from the same script! It's exhausting. Fifty pills a day, constant treatment, worrying about my eyesight, struggling with medication and never really getting a break from thinking about cancer. Four months ago, I was just a teenager getting on with life. Now, my days revolve around trying to manage a brain tumour and everything that comes with it. The reality behind Charlotte's words When I read Charlotte's diary now, I'm struck by how much of her teenage life had been taken over by medication and treatment. Fifty pills a day. Concerns about losing her sight. The side effects of steroids. The struggle to swallow medication. Chemotherapy was stopped because her platelet levels were too low. These weren't occasional inconveniences. They were part of her everyday life at just 16 years old. And yet, even in the middle of all this, Charlotte's humour shines through. Making everyone in the family taste the awful potassium drink is such a little glimpse of the girl she was. I share these entries because I want people to see the reality of living with a brain tumour, not just hear the words 'brain cancer' and imagine they understand. This is why we continue to fundraise through Charlotte's BAG. We want to support research into better treatments, better outcomes and more hope for families facing this devastating disease. If Charlotte's story touches you, please consider donating. Every contribution helps us continue the work in her memory. Sixteen years old. Fifty pills a day. A life that should have been filled with teenage adventures, not a daily battle with a brain tumour. Please help us make a difference for the next generation. We are a self funding charity. No overheads, salaries, expenses or merchandise. charlottesbag.org/

Charlotte - Brain Tumour Diagnosis to Death: 951 days Age 19 18.2.97 - 24.2016 Running a small charity is incredibly hard work, and I’ll be honest, it’s made even harder by the fact that social media isn’t my strong point! I often have to put in twice the effort to navigate it all. Despite the challenges, we are really proud of what we’ve achieved as a small, self-funding charity. We have relatively few photographs of Charlotte, but thanks to her, we do have a deeply moving record of her brain cancer journey through the videos she shared on her YouTube channel. Her voice and her story continue to help us raise awareness. We're determined to reach our £500,000 fundraising target by December 2027. I would rather give ourselves a realistic timeframe and achieve it than set an overly ambitious deadline and risk falling short. If you would like to support a self-funding brain tumour charity, please pop a £ into Charlotte’s BAG. 100% of every donation helps fund vital research at Charlotte’s Lab. King's College Hospital, London Thank you to everyone who continues to support us and help keep Charlotte’s legacy alive. If you’re unable to donate, a RT would be amazing. It would help us spread awareness of another small, self-funding brain tumour charity doing everything it can to make a difference and fund vital research. Every RT helps us reach someone new.  charlottesbag.org/ Some of the comments left on LinkedIn following our presentation at Thursday’s symposium. It means so much to have Charlotte’s story, and the work we do through Charlotte’s BAG, recognised and valued. Your presentation was both moving and inspiring, I have since shared Charlotte’s BAG and her story with my own family and friends. This is a conversation that needs to keep moving and the money needs to keep coming. What you have accomplished with such little resources is truly amazing I am so glad to have been there for your presentation and to understand Charlotte’s story. I have taken away a lot. Thank you so much.   Thank you for taking the time to share Charlotte's story at our symposium. It was a very moving session. Echoing the comments above, I found the video of your Charlotte incredibly moving. It was lovely to see so much of her personality come through. What a legacy she leaves. I would love for us to work with you to help more people hear Charlotte’s story and learn about the wonderful work you do.  Incredible effort as always! Well done Thank you for sharing your time with us today. A hugely moving and memorable session.   I found your session very humbling. Charlotte is an inspiration and you are doing incredible work to improve other people's situations now and in the future. This was such a moving session! Thank you for sharing the brilliant work you do with us today   I was genuinely touched by today’s presentation. Thank you for all that you do and for the difference you make. Your dedication and hard work are truly inspiring.

Charlotte absolutely loved Christmas. She would wrap all the presents and make endless lists of all the foods she wanted to eat. The excitement, the planning and making sure everything was just right were all part of what made Christmas so special to her. I knew Christmas 2015 would be our very last one together. I don't think there are words to describe what it feels like to know you are making memories that you will spend the rest of your life holding on to. Every Christmas since Charlotte died, I have bought her a special bauble for her tree. It's my way of including her in Christmas. The Snowman was one of her favourite Christmas films, so I was fortunate enough to come across a 2026 bauble featuring it. I miss buying Charlotte presents so much. Even now, when I'm out shopping, I see things and immediately think, Charlotte would love that. It's one of the hardest parts of losing a child. You don't stop knowing what they would love, what would make them laugh or what would bring a smile to their face. You still want to spoil them, surprise them and make their Christmas special. Charlotte, was just 19 when she died from a brain tumour in February 2016 Nothing has changed with the standard NHS chemotherapy - Temozolomide licensed back in 1999. Nothing has changed in the standard six-week course of radiotherapy. But one thing has changed: Charlotte’s BAG has raised £414,000 directly funding research at Charlotte’s Lab, King’s College Hospital, Londo The big difference with our charity is simple: we self-fund everything. No salaries/overheads/advertising/merchandise If your thinking of donating to a brain tumour charity pop a pound in Charlotte's BAG charlottesbag.org/ kch.nhs.uk/news/kings-neuros…