His mum, Lisa Callaghan, 38, said that he had been “blinking sensitively” with his eyes getting irritable to light since he was eight months old.
Prior to his diagnosis he was “misdiagnosed” with a number of other ailments including sinus problems and blocked tear ducts.
However, as Varden grew older his symptoms worsened, to the point where he was unsteady on his feet and began to have accidents in bed during a holiday to Ireland in March 2020.
Following an urgent MRI scan, Lisa received the news two days later that her son had a large mass on his brain.
Lisa said: “We went on holiday to Ireland around Easter 2022 and realised Varden was starting to lose his balance when he blinked.
“He’d be doing something and stop still as if trying to steady himself. He also started wetting the bed again, despite being fully potty-trained since the age of two.
“The regression was so severe there were periods he’d wet the bed every single night. We ended up having to put nappies on him again, which he was really upset about.
“I booked an urgent appointment with a private doctor for our return and it was then I asked if we could have an MRI.
“Less than 48 hours after the scan, as I was getting ready to do the school run, I received a call telling me they’d found a large mass on Varden’s brain.”
The mass measured 3cm wide and was considered “too large” to leave in, requiring surgery which he underwent in October 2022.
Since the ordeal, Vardan is beginning a phased return to school plan this month and is regularly being monitored with scans.
Inspired by his journey, Lisa and six of her colleagues at Network Rail are planning to embark on a 4km run to raise money for Brain Tumour Research tomorrow (December 7).
The run, named Santa in the City, is set to take place in London, passing by famous landmarks like the Tate Modern, London Eye and St Paul’s Cathedral.
For Lisa, the run is a way to raise funds for an illness that receives “little funding” and that has personally affected her family.
She also added that had her son been referred earlier in the process for an MRI, the treatment plan could have looked a lot different for him.
Lisa said: “I did the Crystal Palace Triathlon with my older son in May and decided I’m going to try and do one or two fundraising events each year.
“The Santa run will be great because it will enable us to have fun whilst raising money for a worthwhile cause and awareness of possible brain tumour symptoms.
“We’re a mixed ability group. There’s one who has had a knee replacement and another who used to do marathons regularly, but at least two have also been affected by brain tumours.”
She added: “I’ve never done anything like this before and am definitely not fit enough but I’m looking forward to it anyway.
“I think afterwards, it’ll be such a good feeling to know we’ve done something positive and raised money for and awareness of brain tumours.
“I was really shocked by how little funding goes into brain tumour research, especially considering how many young people the disease affects.
“Another thing I’ve learned is that GPs can refer patients for MRIs. If my son had been referred sooner, we would have caught his brain tumour when it was a more manageable size, so I think it’s really important for GPs to feel empowered to make those referrals.”
Although the worst is over for Varden, now six-years-old, there are fears that the tumour could potentially emerge again in the future.
Lisa, Network Rail’s programme manager for Sussex Capital Delivery Projects, said: “It’s such a relief to know that the worst is over.
“Varden is now six and although his tumour is slow-growing, we’ve been told it could come back.
“However, if it does, it will be the same type of tumour and is unlikely to grow past his adolescent years.
“Varden will continue to be monitored and if another surgery becomes necessary then we’ll deal with that then.
“We recognise how fortunate we have been and know many children do not have the positive outcome Varden has had.”
The charity Brain Tumour Research conducts research into brain tumours, and campaigns for the Government as well as larger cancer charities to invest more into research for brain tumours.
The charity is calling for an annual spend of £35 million in order to improve survival rates and patient outcomes, in line with other cancers such as breast cancer and leukaemia.
Charlie Allsebrook, community development manager for Brain Tumour Research, said: “Varden’s journey to diagnosis was a long one but it’s great to hear how well he’s doing now.
“Brain tumours 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.
“We’re determined to change this but we can’t do it alone.
“We’re really grateful to Lisa and her colleagues for taking on this challenge for us and wish them a lot of fun on the night. Together we will find a cure.”
