In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Richard Moon, a keen rugby player from Speldhurst in Kent, was diagnosed with a high-grade medulloblastoma in February 2008, just one month after celebrating his 14th birthday. He had been suffering with headaches, sickness and fainting spells for about five months and was told he had glandular fever, Hepatitis B and norovirus before being accused of making himself sick in order to miss school. He underwent surgery, chemotherapy and radiotherapy and went into remission twice before dying in August 2013, aged 19.
Here is Richard’s story, as told by his sister Hannah…
Richard was a gentle giant. When he died in August 2013, he was 19 years old and about 6ft 4in tall. He was a rugby player and, although quite shy, had lots of friends. At least 50 boys turned up at his funeral dressed in school uniform to honour him by singing their school anthem. It was an incredible sight. Richard was also incredibly intelligent and knew things you wouldn’t expect anyone to know. You just couldn’t fail to love him. To me, he will always be my big brother.
“Richard’s problems started towards the end of 2007 when he began throwing up pretty much every morning.”
I’d often get ready for school and have to change because I had vomit on me. He also had to come off the rugby pitch a couple of times after fainting. We were told he had glandular fever, Hepatitis B and norovirus before the GP told us he was making himself sick because he didn’t want to go to school. This was clearly not true because Richard loved school and was upset about having to miss it.
In the end, my parents had to put their foot down and, after about five months of symptoms, Richard was finally given a scan at the Tunbridge Wells Hospital in Pembury. Sadly, this revealed he had a golf ball-sized tumour at the top of his brain stem. He was transferred to King’s College Hospital, London, and operated on the following day.
“The surgeons managed to remove about 95% of Richard’s high-grade medulloblastoma but its location prevented them from getting it all.”
He was in surgery for about eight hours and in King’s College for at least a month after. He had to learn to walk again after and suffered from double vision for a while, as well as nausea. Despite this, he continued to work towards getting his GCSEs.
After he recovered, he had six weeks of combined chemotherapy and radiotherapy at the Royal Marsden Hospital in Sutton. My parents still have his green radiotherapy mask, which was moulded around his face and shoulders to keep his head still on the bed. As well as losing a lot of his hair and dropping a lot of weight, throughout this Richard was still trying to learn to walk and dealing with a lot of sickness. He also developed peripheral neuropathy, a type of nerve damage that caused him such severe pain he couldn't even have a cotton sheet over his feet and needed to have methadone.
“When his cancer came back, the doctors thought he had just one tumour but there was another hidden behind it, both wrapped around his spinal cord.”
It was horrible. He was just getting on his feet again and starting to feel more normal and the realisation we’d have to go through it all again was really upsetting. After a further surgery and another course of chemo, which wasn’t successful, Richard was given high-dose chemo. Before starting this, he had to have his stem cells harvested, which were transplanted back after he completed his treatment.
Having high-dose chemo meant Richard had to stay in an isolation room at the Marsden for about six weeks. Once again he lost his hair and his skin also changed colour. It went bright red at first and then much darker, making him look really tanned, almost black. It was so weird to see and I refused to go at first but I gave in after he called and bugged me.
“I was scared because he looked like an alien with a bald head, dark skin that was beginning to flake and loads of tubes and wires attached to him.”
He got bored whilst in hospital and decided to sit his GCSE maths exam, and passed. He wanted to prove to himself that he could do it and did amazingly well. Once again, though, he had to learn to walk and needed a lot of physiotherapy.
“Richard tried to get his life back on track again and managed another year in remission before wispy tentacles of cancer were found all over his spine and brain.”
His surgeons said there were too many to operate on. Richard wasn’t able to have radiotherapy again and had run out of options for chemo. Instead, he was offered some hope in the form of a new trial drug. It was still in the testing stages but we were told Richard could join the trial and, as someone who loved science, he said he wanted to do it. Unfortunately, it almost paralysed him and he quickly had to come off it.
“The only other option he had was to take a drug to slow or maybe even halt the growth of his tumours.”
We were told the effects of this wouldn’t last forever but when Richard went back six months later, the doctors told him it had got rid of his cancer. They’d never seen anything like it but couldn’t guarantee the tumours weren’t just too small to see. Despite that, the signs were promising so Richard stayed on it as long as he could.
“In the meantime, he made the most of life, even learning to fly a plane.”
He also went back to secondary school to do his A-Levels and took an Open University course in graphic design. He wanted to do as much as he could with the life he had.
Things started going downhill in February 2013. Richard had been playing snooker with Dad but came home feeling unwell. He began bum-shuffling up the stairs and, about halfway up, became unresponsive. Mum and Dad managed to get him into bed but he was completely out of it. My grandmother lives in an annex next to their house so I was rushed to hers whilst they called an ambulance to take Richard to hospital.
“This time they found two large strips of tumours which were pushing on parts of his brain and causing seizures and serious headaches.”
The doctors said they’d exhausted all options with medication and Richard probably had as little as six weeks left. In fact, he held on for another six months but he continued to have seizures and his memory and mobility were also affected. Towards the end, he split his time between our family home in Speldhurst, Kent, and the Hospice in the Weald, in Pembury.
“Eventually, he had so much brain damage he couldn’t eat or drink and did little but sleep.”
I saw him have a seizure one day and thought he looked as if he’d had a stroke. The whole left-hand side of his face had dropped and he had raspy breathing. I was about 15 at the time and thought he looked like he was dying. It was awful but then, all of a sudden, it stopped. We all expected Richard to pass away after an operation I had in July but he died on 22 August 2013, the same day I got my GCSE results. We believe he held on for them because Dad went to see him in the hospice and about an hour after telling him what I’d got, he was gone.
“I’m keen to share Richard’s story because I want others going through a similar thing to know they’re not alone, particularly other siblings.”
I was three years younger than Richard and my parents desperately wanted to shield me from what was happening to him. I didn’t want that, however. I wanted to know everything and hearing it from them was preferable to overhearing bits of conversations. It’s important for a family going through something like this to feel like a team and that’s not possible when one or more of you feel like things are being hidden from you.
“There was a lot going on with Richard besides his cancer, things other families should be prepared for, as a result of his weakened immune system.”
Twice he suffered from clostridium difficile (C diff), a type of bacteria that causes severe diarrhoea. He caught methicillin-resistant Staphylococcus aureus (MRSA), shingles, which had to be treated with IV antiviral drugs, and he had a severe bleed in his intestine, both of which nearly killed him. He also developed cataracts, hearing loss and damage to his taste buds. He had different feeding tubes connected to his stomach, a port-a-cath device for drawing bloods and giving treatments and then a Hickman line. He had blood transfusions throughout his chemo and it felt like he was constantly being poked and prodded, but he coped well and I really admired his strength.
I was shocked to learn how severely underfunded brain tumour research is, especially considering it’s the biggest cancer killer of children and young people under the age of 40.
“I look forward to the day a cure is found for this truly horrific disease.”
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 touched by Richard’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.