A lemon-sized tumour attached to the brain of a 10-month-old baby boy was initially diagnosed as a vomiting bug.
Parents Keira and Tony Johnson rushed Baby Max to Ormskirk hospital in Lancashire in October 2017 because he was vomiting and his eyes kept rolling back in his head.
Doctors told the family the little one most likely had a viral infection and sent them home. They said it should go away on its own in ten days.
Just two days later, Kiera took Max back to the hospital because she felt "in her stomach" something wasn't right, she told the Liverpool Echo.
That decision to return on October 3 2017, doctors told her, was the one that saved his life
The 38-year-old said: "We were in the hospital for hours and one of the doctors said he didn't want us to leave until he saw the funny thing that was happening with his eyes.
"At first they thought it was some kind of water infection but after I showed them a video of what his eyes were doing they took him for a CT scan.
"When they came back they told us they found a 6cm mass on his brainstem and we were transferred to Alder Hey Children's Hospital.
"Our lives fell apart."
Once admitted, doctors diagnosed the 10-month-old with a brain cancer called ependymoma, a rare tumour on the brain or the spinal cord which affects mostly children.
Fluid built up in Max's brain and his condition deteriorated rapidly within days.
Three days after staff admitted him to Alder Hey, doctors performed life-saving surgery to remove the tumour.
The 10-month-old stayed in hospital for four more weeks before he was allowed to go home for just a day.
Tragically, it was far from the end of Max's battle.
Kiera said: "From here Max had 28 doses and seven cycles of chemotherapy over 380 days.
"He rang the bell to symbolise the end of his treatment just over a year later, before doctors found the tumour returned on March 26, 2019.
"We were devastated, our happiness was short lived.
"Fortunately we were eligible for proton beam treatment, so Max had to go back under general anaesthetic every day that he was to have treatment. This was five days a week for six weeks.
"We were given an 80 per cent chance of cure."
Sadly, the tumour has returned twice since he "rang the bell" at Alder Hey - once in January 2021 and again on July 27.
The family, from Lydiate, are searching for alternative treatments to stop the tumour returning.
The cancer has developed into a more complex condition and has been recategorised, Max's oncologist told the family.
Keira and Tony have been "hitting brick walls" since the start of the pandemic as international cancer services deny treatment to foreigners due to travel restrictions.
Max, now four, is still in the Alder Hey hospital, being his "cheeky and chatty self" with the nurses on the ward.
Kiera said: "For the first few years we buried our heads in the sand a little bit, now we need to find a cure for Max.
"We thought, there has to be more we can do than just sit around and wait for somebody to come up with something.
"We're hoping to raise awareness of this type of cancer with his Facebook and Instagram pages and also see if there are any other people around the world in our position who have any ideas."
