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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Niall Kavanagh

Niall Kavanagh, of Newmarket, Suffolk, was diagnosed with a brain tumour in October 2021 after being rushed to A&E with sudden forgetfulness and an inability to speak. He had been unwell for several weeks, having felt sick and collapsed after playing a game of football. He was also becoming increasingly tired, but his symptoms were dismissed by out-of-hours doctors who attributed them to a virus or ear infection. He died just three weeks after diagnosis, aged 19. 

Here is Niall’s story, as told by his mum Claire …

Niall was a typical teenager. He had lots of friends, often went to music festivals, loved designer clothes and was mad on football. He actually did a sports qualification at West Suffolk College and would play football every day if he could. He also enjoyed horse racing and had just moved in with his girlfriend, an apprentice jockey, before being diagnosed.

“He was really happy and enjoying his life.”

The first sign that anything was wrong came after Niall played a game of football in September 2021. He rang me that night and said he’d just been sick and collapsed and was going to go to A&E. He actually went to see out-of-hours doctors at Addenbrooke’s Hospital, Cambridge, on two consecutive Saturdays but was looked over and sent home with a suspected virus or ear infection. In between these visits, he continued to see friends and was leading a normal life, despite being quite sick.

“With Niall no longer living at home, I wasn’t fully aware of what was happening.”

He did tell me he wasn’t going into work because he was sick and he asked me to pick him up after an ambulance he called was taking too long. I couldn’t accompany him into Addenbrooke’s because of COVID-19 restrictions, but know he was sent away with medication. 

“My mum had a brain tumour when she was young and is 87 now.”

I felt certain the doctors would be aware of that and wasn’t too worried until things still weren’t right with Niall three weeks later. I could see he hadn’t been on social media and he told me he had been feeling really sleepy. He wasn’t registered with a GP because he had just moved, so I phoned his local doctor’s surgery and went through the necessary process in order to get him an appointment straight after the weekend.

“Alarm bells really started ringing when Niall phoned and couldn’t remember talking to me.”

At first I thought he was joking, but he was scrolling through his phone in disbelief. Niall’s brother went over to his house the same day and called to tell me there was something wrong with him and he was going to put him to bed. I live in Balsham, Cambridgeshire, and when I got there, he was conscious and sat up gesturing, but he couldn’t speak.  

“I called an ambulance and sat at the top of the stairs with him for an hour because I was worried he was going to fall.”

In the end, we lifted him into the car and drove him to Addenbrooke’s ourselves. He couldn’t walk or talk and the staff there thought he’d taken something. Anybody who knew Niall would have known that wasn’t possible because he never took tablets. He was like a cat when it came to pills, he would put them in his mouth and then spit them out to avoid being sick.

Then there was some talk about him having had a seizure because he just wasn’t responding. He was able to move but he couldn’t coordinate anything. Then he was taken for a scan and we were told there was a lesion on his brain. He had emergency surgery that night and the surgeon who came to see us after said he didn’t think Niall was going to make it through the night.

“He told us he’d never seen anything as aggressive as Niall’s tumour and left us with almost no hope.”

I had to go home and tell Niall’s two younger brothers they needed to say goodbye. I’m separated from their father but he came too. I was surprised when the doctors started talking to me about tomorrow as I didn’t think Niall had that time, but they said he was stable for the moment and they would take things one step at a time and see what happened.

Over the following week, I kept going in to talk to Niall. He was in the ICU on a ventilator and went from not being able to do anything, to being able to play on his phone. They took him off assisted breathing and when his friend came to see him, he appeared to let go of his hand and try to do a fist bump. I looked at his brother and asked if he’d just done that because it was such a turnaround. 

“Niall came back to the point where he could talk to us, use his phone and breathe on his own.”

His surgeon said it was incredible to see him get to that stage but reiterated that his condition wasn’t curable. He said they would have to wait three weeks before deciding what kind of treatment he could have. Niall was moved from the ICU to a neurological ward, bypassing the high dependency unit altogether.

Whether he survived two months or two years, we were told he wouldn’t be the same Niall. He had two drains in his head and his short-term memory was gone but we all hoped he was going to be around for a while longer. The alternative didn’t seem possible as we watched him look through his phone for links to places he wanted to go. 

The ward Niall was on got COVID-19 and instead of everybody being able to go and see him, we were restricted to just one visitor. There was a day when I didn’t see him at all, but then he was put his own room and I was able to visit again.

The next thing we knew, one of the shunts in his head had been removed and he hadn’t woken up since. He was returned to the ICU and when I saw him the following morning, he wasn’t responding like he had before. He just gradually faded after that.

“I was told Niall’s brain was swelling and they couldn’t do anything to stop it.”

Essentially, he was dying. The next day, it was obvious he just wasn’t there. Previously when we had held his hand, he had held ours back, but by the end of that day he was just flat and didn’t respond. The surgeon did some tests to determine brain stem death and told us he had died. I knew what the results were going to be but prayed he’d pull through. I wanted a miracle but his surgeon agreed that having him back for those three weeks was a miracle in itself.

It was a huge shock for us all. In true Niall fashion, he donated his organs to help save the lives of four other people, and contributed to ongoing research in tissue donation. I’ll never understand how he went from being a fit, healthy 19-year-old, playing football and living with his girlfriend, to dying three weeks after diagnosis. We didn’t even get the chance to bring him home. It was horrific.

“I look back sometimes and wonder what would have happened if they’d scanned him earlier, but I don’t think anything was ever going to save Niall.”

The type of tumour he had was something his surgeon hadn’t seen in more than 20 years of working in his field, but it was linked to the glioblastoma (GBM) group. Niall was diagnosed 8 October and died 1 November, just three weeks before his 20th birthday.

“The only consolation for me is that I don’t think he knew anything about what happened.”

It's been very difficult for us to process. I had a pacemaker fitted shortly after Niall died and spent six weeks in hospital. I’m convinced it was brought on by the shock and stress of everything and found it horrendous being back there. Niall’s death blew our whole family apart and trying to support each other through it was horrendous. One of my sons moved in with his girlfriend, I think in part because we couldn’t all cope with dealing with it and living in the same house.

“One positive is how both Niall’s brothers have been motivated by what happened to him to go out and live their best lives.”

One was training to be an electrician and is now an apprentice jockey, whilst the other is about to leave school and go off to be a jockey down in the West Country, which is where I’m originally from. I’m very proud of them both for how they’ve managed to cope with it. I’m the opposite. Work’s still a struggle and I feel like it’s destroyed my life.

Last year, Newmarket Racecourse, where Niall worked, put on a race in his name, which was incredible, and a friend and I did a skydive in aid of Brain Tumour Research, raising almost £3,000.

“It’s hard to think of others going through what we have, and the hope of a cure someday is all we have now really.”

Claire Kavangh
June 2023 

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.

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