In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Having ruled out meningitis as the cause of his headaches and vomiting, 10-year-old Charlie, who has a twin sister, was scanned. A mass was discovered which turned out to be a craniopharyngioma brain tumour. He underwent surgery and proton beam therapy and is now on hormone replacement medication and hoping he won’t need further surgery or treatment.
Here is Charlie’s story as told by his mother Stacy…
Charlie had been complaining of headaches and feeling tired for about a year and was being monitored by the GP, while we looked for patterns which might indicate the cause. We had also taken Charlie to the optician to have his eyes checked.
In March 2020, when his headaches became more frequent and Charlie was off school for a few days, being sick, we phoned 111 and were told his symptoms could indicate meningitis and to get him checked out at the hospital. It was a Friday and we took him to Worthing Hospital. After various tests, we were sent home with the proviso that if his headaches continued over the weekend to bring him back.
By Monday, Charlie felt well enough to go to school. He and his twin sister Megan are both at West Park CE Primary School, where I am a teaching assistant
Around 10.30am that morning, the first aid lady let me know that Charlie had been sick again. I called my husband, Chris, and together we took Charlie back to hospital where he was admitted and also booked in to have an MRI scan the following day. I was able to stay with Charlie overnight and Chris returned to the hospital in the morning to take over, so that I could go to work. He remained with Charlie for his scan.
Around 3pm that day, Chris called me and asked me to come to the hospital, but not to panic. Of course, I did!
When I got to the hospital, doctors took us into a room. We were told they had found ‘a mass’ in Charlie’s brain and that he was being transferred to a specialist neurology team at Southampton General.
“It was such a shock. We broke down and cried. All sorts of thoughts went through my head. Will Charlie need an operation? Will he survive? How are we going to tell Megan? Who will look after her?”
We then had the heart-breaking job of explaining the situation to Charlie. Amazingly, he took the news very well.
At Southampton, we had a meeting with Charlie’s doctors who showed us the scan of his 3cm x 3cm tumour and told us that it was a craniopharyngioma, which usually forms at the base of the brain near the pituitary gland and can therefore have a large impact on hormone levels. The tumour was very close to areas controlling his eyes and other functions, so we were told the likelihood was they wouldn’t be able to remove all of the tumour.
Charlie underwent surgery while Chris and I spent the five hours it took getting something to eat and doing some shopping to give our minds a focus away from what was going on in the hospital.
The neurosurgeon called us to let us know that the operation had gone well and that they had succeeded in removing as much as they had expected.
“I went in to see Charlie in recovery and it was such a relief to see him awake, talking and able to recognise me. Having been given some worst-case scenarios by the surgeon beforehand, you can’t help being fearful that one of those could happen to your child.”
The UK was on the verge of going into a national lockdown because of the coronavirus pandemic, which meant that only one parent could stay with Charlie and there were no rooms available at the Southampton Ronald McDonald House. Chris booked into a hotel for a few nights, but then was forced to go home as all the hotels were shut down because of the pandemic and hospital rules dictated that only one parent could stay with their child without the option of switching parents.
Charlie remained in hospital for a week, including a couple of days in intensive care to get his fluid levels under control. He was put on steroids and even now he has to limit what he is drinking each day to no more than three litres.
Meanwhile, as we have no family who live locally to us, Megan spent eight weeks in Devon with her grandparents, as because of COVID-19 restrictions, she wasn’t allowed to travel back home. She seemed to enjoy the one-to-one attention and spoke to Charlie frequently on the phone. We didn’t tell her until afterwards that Charlie was having surgery so that we could say he was OK. Fortunately, she took it all in her stride.
During his recuperation, Charlie got into gardening. He told us he would like a vegetable plot and we sorted out a new shed for the gardening tools, as well as various planters. Charlie grew a variety of different produce, including courgettes and carrots, but I think the runner beans were his favourite.
During September and October of 2020, Charlie had proton beam therapy (the most advanced and accurate form of radiotherapy) at The Christie in Manchester to help shrink the tumour further.
“Charlie’s brain tumour has affected his hormones and it is very likely that he will remain on hormone replacement throughout his adolescence. We were told that the radiotherapy could affect his fertility and result in short-term memory loss and that he might find solving problems more difficult.”
Fortunately, however, Charlie seems to be meeting expectations at school, which, considering the amount of education he missed last year because of his surgery, treatment and coronavirus on top of it all, is pretty amazing. It’s also a blessing that SATs aren’t happening this year, which is one less thing to worry about.
We are hopeful that Charlie won’t need further surgery or treatment, but obviously, he will be scanned regularly to monitor for any growth.
When we learnt how underfunded research into brain tumours is and saw that Brain Tumour Research was launching its 10,000 Steps a Day in February Challenge, Charlie and I decided to sign up as we try to walk most days anyway for exercise. Charlie was also happy to share his story to raise awareness.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been inspired by Charlie’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.