Parents of a 10-month-old boy described how their "lives fell apart" when doctors discovered their son had a lemon sized brain tumour.
Keira and Tony Johnson, from Lydiate, took baby Max to Ormskirk Hospital after he started vomiting and his eyes began rolling into the back of his head.
Doctors told the concerned parents he likely had a viral infection which would go away on its own in ten days, Liverpool Echo reports.
However, Kiera returned to hospital just two days later after 'feeling in her stomach' something wasn't right.
By taking Max back to hospital on October 3, 2017, doctors say that decision saved his life.
The 38-year-old told The ECHO : "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."
After being transferred to Alder Hey, Max was diagnosed with a rare brain tumour called an ependymoma, which is a cancer mostly seen in children.
Due to an excessive brain fluid build up, Max deteriorated extremely fast within days of being diagnosed.
On the October 6, 2017 Max had life saving brain surgery to remove the tumour and four weeks later was allowed to go home for one day.
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% chance of cure."
Sadly, Max - who is now four - has seen his tumour return twice since, in January 2021 and again on July 27.
The family began researching alternative treatments, therapies and diets that could help stop the tumour coming back again.
Max's oncologist found out the boy's tumour had been recatorgorised as an Ependymoma PFA with a gene mutation in the BCORL1-ELF4 fusion, which is what the family is trying to find alternative treatments for.
Since then the family has been 'hitting brick walls' as practices overseas are not taking patients from abroad due to coronavirus.
Max is still in Alder Hey and is being his "cheeky and chatty self" and bantering with the nurses on the ward
Kiera told The ECHO: "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."
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