Emily Piszton was diagnosed with a type of brain tumour called craniopharyngioma in 2022, aged 11. Now 12, Emily explains how her tumour and its treatment caused her to gain weight, and what she did in response to this.
Before my diagnosis, I was really active. I enjoyed horse riding, roller skating and swimming, and I loved school. But life changed for me when I began getting headaches at the end of 2021, and these became increasingly intense as time went on. I initially thought they might have been due to COVID-19 or bumping my head while horse riding, but my mum became worried when they didn’t get any better. I also put on quite a lot of weight, which was put down to stopping playing sport during the COVID-19 pandemic.
After going to the GP several times, my parents took me to Slovakia to stay with my grandmother and undergo further investigations for my headache. While there, I had an MRI scan which showed I had a brain tumour, and an operation was performed to remove it. Since then, I’ve also had treatment with proton beam radiotherapy in London.
I’ve experienced a lot of physical and emotional challenges from my tumour and its treatment. Craniopharyngiomas lead to an increase in appetite and make it very hard to resist food. They can also cause problems with hormones and reduce metabolism, making it easier to put on weight. This happened to me, and I put on quite a lot of weight in a short amount of time.
My metabolism wasn’t working properly, and I was also always hungry and couldn’t really control that hunger. That led to extra little snacks, and me eating at night and hiding food, too. Emotionally, this was a really tough time for me. I was very self-critical and really didn’t like what I did or how I did it. I felt guilty, but I just couldn’t control it.
Then, one night, my mum found me eating in the pantry. We had a tough yet honest conversation about everything and then we started to learn how to control the food and what to eat. We made a plan to help me not eat as much, or make healthier versions of things I was eating, like really cool desserts.
Mum really helped me and made these nice, healthy breakfasts and lunches. I ate loads of salads, vegetables and fresh fruits, cut out sugar and had no takeaways or fast food. Everything was fresh and homemade, with little seasoning and no oil. We swapped biscuits for sugar-free versions, and because I love to bake, I then started baking my own with banana and oats. Mum swapped potatoes for butternut squash, and tried to replace high-calorie foods with foods low in calories and that helped a lot.
I also had problems with digestion and at one point I was constipated for a long time and had to go to hospital. I then stopped eating meat and haven’t done since spring this year and have felt much better since. I’m still sometimes eating fish to get some protein and eating lots of walnuts to help my memory and brain function, and Brazil nuts to help my thyroid.
Mum’s been great and gives me so much comfort and support. She searches all the time to find new ways of helping me. I know for some children, it’s hard to talk to their parents, but I’d say try to if you can. Don’t hide a problem, as it will only get bigger. I also want to tell them to keep going. Be resilient, never give up, but be kind to yourselves, too.
Emily has managed to take control of the situation in a truly inspirational way. It’s a remarkable achievement for her to lose weight despite her diagnosis. She has an amazingly positive attitude and has shown incredible strength and determination.
Dr Ren Manias, Emily’s consultant
From Contact magazine issue 101 - Winter 2023
