Brain Tumour Awareness Month

We speak to Charlotte Hillyard as she shares her personal experience navigating her daughter's battle with a brain tumour, shedding light on the realities faced by many families during Brain Tumour Awareness Month.  

Trigger Warning: Emotional Distress, Childhood Illnesses, Cancer 

Because we never think it’ll be us until it is...  

Hello – I’m Charlotte and I’m a Certified Infant Sleep Consultant based in Essex. I’m mum to Jessica and Joshua and wife to my incredible husband, Lee. 
 
March marks the start of Brain Tumour awareness month. A month full of events to raise awareness of this devastating disease that kills more children and adults under the age of 40 than any other cancer. 1 in 3 people know someone affected by a brain tumour and I’m one of them. 
 
May 7th 2023 started out like any other day for my daughter Jessica, who was 3 at the time of her first ever seizure and subsequently devastating brain cancer diagnosis.  
 
Jess woke up around 6.15am that morning and came into our bed for cuddles as she did every morning when her mouth started twitching. At first Jess found it funny, typical 3-year-old! But then it got worse, and she couldn’t stop the involuntary twitching. We took her downstairs and called 111 and tried to calm her down (she was quite distressed by this point) and we were waiting for them to call us back. My instinct just knew this was bad and so we called 999 and in the meantime, we gave her some milk to drink to see if she could swallow and she dribbled it all out, she couldn’t swallow. We then gave her a pen and tried to encourage her weaker side to colour, but she couldn’t hold the pen and we then called 999 again and an urgent ambulance was sent.  
 
By the time we got into the ambulance, her symptoms had eased, and we thought whatever had happened had passed. We were blue lighted to our local hospital ER in any event, and we were greeted with around eight doctors and nurses who did several checks. They arranged for an urgent MRI scan, sedated Jess and began the scan. Then at lunchtime we were told the devastating news, Jess has an ‘abnormality on her brain’ and they are arranging to transfer us to Great Ormond Street Hospital (GOSH) where we arrived at 5pm that same day.  
 
Less than 48 hours after her seizure, Jess was taken down to surgery. The operation lasted all day and we were thrilled to hear her tumour was removed. However, we then had the agonising wait to find out what type of tumour this was. A few days later we were taken into a side room where she was diagnosed with atypical teratoid rhabdoid tumour (ATRT). Her type of cancer is incredibly rare and makes up only 1-2% of brain cancers in children.  
 
After further scans, we were told that the tumour was localised to her brain and even though this was now removed, we had to begin a preventative treatment regime that included nine rounds of Chemotherapy and six weeks of Proton Beam Therapy. We finished treatment and Jess rang the bell at GOSH in December 2023.  
 
Prior to her seizure, Jess had no other symptoms of a brain tumour and in fact went swimming the day before and then we walked to our local library and made our coronation crowns, and she was really happy.  
 
Every year 400-500 children are diagnosed with a brain tumour. Brain and spinal tumours account for approximately one quarter of all childhood cancers - the most common, after leukaemia.  
 
This month, help us ‘shine a light’ on brain tumours so more research is done into childhood brain tumours and more lives are saved. 

For further information and ways in which you can support, please visit: https://braintumourresearch.org 

Photo of when Jess rung the bell at Great Ormond Street Hospital