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A mother-of-four, whose youngest son faced a fight for life when a golf-ball sized tumour was found in his brain, is now fighting to save the planet.
Sam Dickenson was a key figure in an Extinction Rebellion protest in Maidstone, and revealed it was her family’s battle which inspired her to join and protect her childrens’ future.
When he was aged three doctors discovered her son, Seth, had cancer. But it took several months to get to this diagnosis.
In September 2017, Seth began vomiting in the morning.
Mrs Dickenson, from Maidstone, first thought he had a sickness bug, but when the bouts became more frequent and were coupled with a headache she took him to the doctors, who recommended pepto-bismol, a nausea relief.
When nothing worked, she tried visiting opticians and introducing numerous diet changes, but was left at her wits’ end.
In desperation she rang the doctor, begging for help and suggesting a head scan or blood tests.
She said: “The thought of a brain tumour had entered my head but I had talked myself out of it because he had no other symptoms I knew of.”
The doctors agreed to a blood test but before it happened, the mum was out with a friend and their children, in December, when Seth came over to her and fell asleep in her lap and she knew something wasn’t right.
She said: “My friend asked me ‘What do you need to do so you can sleep tonight?’ and I said ‘I need to know he hasn’t got a brain tumour. I need to take him to A&E.’”
The family took Seth to the Tunbridge Wells Hospital and, after thorough checks, his neurological tests came back fine. But the consultant was concerned about his headache and booked him in for an MRI at Maidstone Hospital.
A few days later the youngster underwent two scans and doctors discovered a tumour.
Mrs Dickenson said: “I can feel the fear in me now as I went through the consulting room door, I thought this is really bad.
“They didn’t pull any punches, they just said I’m really sorry, he’s got a brain tumour, we’ve sent the MRIs to King’s College London and they’re going to operate tomorrow, you can’t go home and you can’t be without medical supervision.
“I burst into tears but there was a bit of me that was relieved. I thought: ‘Ok it’s terrible but now we can fix it.’”
That night Seth, now five, Sam and her husband James, 39, were bluelighted to the London hospital and within 12 hours of diagnosis, the youngster was on the operating table having the tumour removed.
Surgeons worked for more than 12 hours and after successful surgery, Seth was taken to the high dependency unit and remained in hospital over Christmas and the New Year.
Despite the surgery, the cancer had spread to his spine, known as Medulloblastoma, and Seth was referred to The Royal Marsden hospital in Sutton, Surrey, where doctors informed his family he would face six weeks of radiotherapy and chemotherapy every day followed by two different types of chemotherapy for six months after that.
His mother said: “The doctors’ description of the tumour led us to believe we were looking at it being malignant and we were quite prepared.”
The boy was then referred to The Royal Marsden hospital in Sutton, Surrey, where he had to have six weeks of radiotherapy every day followed by two different types of chemotherapy during six months.
Mrs Dickenson said: “They sat us down and told us it can cause deafness, cataracts, cognitive delay, burns and hair loss.
“You’re kind of prepared for the hair loss but none of the other stuff.”
The ‘little trooper’, as his mother refers to him, underwent all the treatment and in October 2018 rang the ‘no sign of disease’ bell.
He is still treated as high risk and has regular check ups.
Speaking about the experience, Mrs Dickenson said: “You feel guilt as a parent. Should I have gone sooner? Did I do enough? Am I giving enough attention to the other children? Until you’re in that situation it’s very hard to describe.
“We’ve been lucky because it’s been very intense in a short space of time. My heart goes out to families and people we have met who are still fighting because it just takes such a long time and it’s heartbreaking.”
The family have been on the hunt for a new cause and settled on Extinction Rebellion and raising awareness of the threat climate change poses to the future of the planet.
Mrs Dickenson and three of her sons, Rufus, nine, Arthur, 12, and Seth, joined a March for Life in Maidstone last week which saw protesters walk through the town centre holding a makeshift coffin, wearing mourning colours and waving banners.
It was the same day fellow Extinction Rebellion supporters clambered on top of tube trains in the capital only for furious commuters to pull them off.
The group in Maidstone hoped to spread the message that they weren’t anarchists but normal people with jobs.
Mrs Dickenson said: “We spent a year fighting for Seth’s life. He is better, which is great, but it feels like we’ve been given a second chance and when you have looked death in the face like that you realise how terrifying the possibility is the future will not be easy.
“Its about our children knowing we’re happy to stand up and say this is something we believe in and we want a better future for you.
“It’s no good sitting at home and moaning about everything going wrong if you’re not prepared to stand up and be counted.”
Speaking about the London incidents she added: “I think what they did was quite misguided but their intentions were good but with the wrong outcome.”
The Dickenson family also includes Isaac, 14.
They have undertaken several challenges for charity, including walking 50 miles in two days for the Brainstrust, a brain tumour charity, and a Hike4Houses for the Ronald McDonald House Charities with Isaac.
Family members and their friends also shaved their heads and charity quiz nights have been held at Vesuvius Café in Market Buildings, Maidstone.
Mrs Dickenson said: “I feel strongly kids deserve a better chance than they’re getting.
“If our work means a child only has to have surgery and doesn’t have to have all the follow-up treatment because they caught it early then that’s a win.”
