Seven-year-old Mason Aaron Mackenzie from Elphinstone, East Lothian, was diagnosed with choroid plexus carcinoma (CPC), a rare and aggressive form of brain cancer, following a routine optician’s appointment. His diagnosis came just weeks before the tumour could have caused irreversible damage, including vision loss or seizures. After a successful surgery in March 2024 to remove the tumour, Mason has undergone intensive chemotherapy with the hope that the cancer may never return.
Here is Mason’s story, as told by his mum, Carly…
Mason has always been different from other children, in a way that makes him truly unique. He has autism spectrum disorder, which means he sees the world differently and thrives on routine. One of his biggest joys in life is Sonic the Hedgehog — he can tell you everything about Sonic and all the characters, and his favourite colour is Sonic’s royal blue.
In January 2024, Mason had a routine optician’s appointment in Vision Express Opticians at Tesco, Musselburgh. Everything seemed fine at first as he didn’t need glasses, and there were no signs of vision problems. The optician asked if Mason had been feeling dizzy or seeing stars, and I mentioned that he had been complaining about headaches and feeling unusually tired. The optician advised me to keep an eye on things and to contact our GP if the symptoms got worse.
Just a week later, Mason woke up with a terrible pain in his neck and couldn’t get out of bed for school.
This was so unlike him and, as soon as he tried to move, he screamed in pain. I called the GP immediately, and after a visit to A&E, we were told it was torticollis, a muscle spasm in the neck, and that he would be fine in a few days with ibuprofen.
At the end of the appointment, I mentioned Mason’s headaches again, which weren’t accompanied by dizziness or vomiting. The doctor suggested an MRI scan just to be safe so we did this at the hospital.
A week later, I was driving home when I got a call from Edinburgh’s Royal Hospital for Children & Young People. They asked me to come in right away as there were findings in his scan that needed to be discussed. My heart sank as I immediately knew something was wrong.
I’ll never forget sitting in that room with Dr Mark Brougham, the paediatric oncologist, and Vicky Knox, the oncology nurse specialist. They showed me Mason’s brain scan and there it was — a white mark that clearly didn’t belong.
The doctors explained that Mason had a tumour on the left side of his brain, and it wasn’t just any tumour — it was an aggressive one.
How could my little boy, who was so full of life, have something so dangerous growing inside his head?
Telling Mason was one of the hardest things I’ve ever had to do. He thrives on routine, and I knew this news would turn his world upside down. At the time, we didn’t have all the answers, and more tests were needed to determine exactly what type of tumour we were dealing with.
When I finally sat Mason down in front of the computer to explain, I told him: “You’ve got a ball in your head that shouldn’t be there, and we need to figure out how to get rid of it.” His response? He just shrugged and said: “Umm, I feel fine.” I laughed and cried at the same time because, to him, nothing had changed. It was surreal that life still had some sense of normality.
A few days later, Mason was admitted to the hospital for blood tests and a lumbar puncture. The results confirmed it was a choroid plexus tumour, but we wouldn’t know how severe it was until after his surgery, which was scheduled for March.
The tumour was incredibly close to his vision centre, just one millimetre away. If we had found it any later, Mason could have lost his eyesight.
I didn’t want to scare him, so I just told him the amazing neurologists were going to take care of the lump in his head. He didn’t ask too many questions, and I didn’t want to overwhelm him with details. In the weeks leading up to the surgery, I kept thinking: “How am I going to help my autistic child navigate life without his sight and while battling cancer?”
On 20th March, Mason went into surgery. It was the longest day of my life. The surgeon told me: “I can’t even tell you how it’s going to go until I’m in his head.” I didn’t see Mason again until 9pm that night, and the relief I felt when the surgeon told me they had successfully removed the entire tumour was overwhelming. When Mason woke up the next morning and could see and speak to me, I was beyond grateful.
In April, just a week after his surgery, Mason underwent procedures to place a Hickman line to administer chemotherapy. The treatment was intense, and we were warned that Mason would lose his hair, vomit frequently, and feel very unwell. They prepared us for what was to come, explaining that his treatment had to cross the blood-brain barrier, meaning it was particularly harsh.
Mason has now completed six months of chemotherapy, and his most recent scans have been clear.
If his October scan is clear, we hope to trial Mason on no chemotherapy and see how his body responds. That’s where the real test begins.
The doctors have made it clear that there is very little research on this type of tumour.
Unlike more common cancers like leukaemia, there isn’t enough data to predict how CPC might behave.
The biggest message I want to get across to other parents is to trust your parental instinct. If you feel like something is wrong, even if it seems minor — like a cough, cold, or something simple — take your child to the GP and get it checked. For us, it was something as basic as a routine visit to the optician that ultimately led to the discovery of Mason’s life-changing brain tumour.
Carly Mackenzie
October 2024
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Mason’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