Barking parents raise awareness of rare cancer following 18-year-old son’s death
PUBLISHED: 14:00 12 June 2018
A mum and dad are carrying out their son’s dying wish by raising awareness of the rare form of cancer that took his life.
Nikki and Brian Johnson along with brother Tyler were by 18-year-old Bayley’s bedside when he passed away at the family’s Barking Riverside home on June 1 after a two-year battle against adrenal cortisol cancer.
“It’s a horrible, nasty disease which can’t be cured unless caught early. But Bayley took it on the chin. We want people to know how brave he was,” Nikki said.
Bayley first told his mum and dad something was wrong when he came downstairs one day in January last year complaining of a bloated belly.
Later he put on two stone, spots appeared all over his body and stretch marks formed on his legs.
The family went back and forth to the doctor’s not knowing what was going on for five months before they were sent to University College Hospital where an MRI scan showed tumors on Bayley’s adrenal glands.
The cancer had shut down the glands resulting in Bayley’s blood pressure going sky high. He developed Cushing syndrome which saw him become depressed and unable to sleep.
Surgeons removed the tumors - one of which was eight centimeters long - leaving him with 54 staples across his stomach in July last year.
“There was just so much he went through but he never once complained,” Brian, 41, said.
He added there was a one in a million chance of getting the cancer which usually affects people twice Bayley’s age.
A massive Spurs fan, football mad Bayley played for Essex County, Euro Dagenham, Dagenham United, AFC Hornchurch and Billericay Town. And in spite of going through exhausting rounds of chemo and radio-therapies he carried on playing with his mates.
“He made me look silly for two years and I’m his dad. He was terribly worried about it, but he kept on reassuring us,” Brian said.
“He just took it though. He was amazing. He was a different breed of boy,” Nikki said through tears.
But by December last year the cancer had come back.
“It was very aggressive and growing rapidly,” Nikki, 36, said.
Nikki and Brian phoned hospitals up and down the country searching for a drugs trial which could offer them hope eventually getting Bayley onto one at the Royal Marsden. But after a six week trial they were told it hadn’t worked.
“We knew we were at the end of the road,” Brian said.
“We saw how poorly he became. No patent should have to go through this ever,” Nikki added.
Brian, a supervisor at Iceland in Barking, then had to come out of work to help care for his son with Nikki.
It was around this time the former Barking Abbey School pupil got in touch with rap musician Tremz who helped him spread the word about adrenal cortisol cancer by sharing his fan’s story on social media.
“Bayley wanted to help other people. He didn’t want anyone else to go through what he did,” Brian said.
Nikki added: “The cancer’s so rare. No one knows about it. Bayley thought he was going mad before he was diagnosed. In the end he couldn’t fight it as much.
“With everything that was thrown at him he took it like a real man and was always positive,” she said.
Bayley found great support from his friends and family including siblings Tyler, 20, Louie, 14, Teddy, 10 and eight-year-old Ruby-Rose.
“They’ve been fantastic. We’re a close family and do everything together,” Brian said.
“It’s always been the seven of us,” Nikki said. “His brothers and sister adored him. They’re struggling like all of us.”
After he passed away doctors told the family they hadn’t expected Bayley to have survived so long.
“They said he should’ve gone nine months ago. Knowing that made us feel proud. He fought it with all he had. But towards the end he was in a lot of pain,” Nikki said.
“He didn’t want fuss or sympathy. He just carried on,” Brian added before saying how grateful the family felt towards teenage cancer charity Teens Unite and the Willow Foundation for their help and support.
“We’ve had 18 fantastic years with him,” Brian said. “We’re thankful we were chosen to be his parents.”
Nikki added: “Our hearts are broken. We will never be the same again. He was an amazing son and brother. He was the best friend anyone could wish for. We will love him always and forever.”
For more information about adrenal cortisol cancer visit cancerresearchuk.org