A three-year-old cancer victim has inspired his grandmother to campaign for more research into childhood versions of the disease.
Logan Maclean, from Largs in Ayrshire, died less than a year after he was diagnosed with the brain tumour diffuse intrinsic pontine glioma (DIPG) in November 2016.
The youngster’s family was warned no child had ever beaten the disease, with the only option being radiotherapy to buy him an extra few months of life.
Logan’s grandmother Fiona Govan, 50, has since launched a campaign pushing for more funding into childhood cancers with the worst survival rates.
Brain Tumour Research, which supports Govan’s petition, claims brain tumours kill more youngsters than any other form of the disease but receive just 1% of the national spend on cancer research.
‘We quickly learnt it was incurable’
Logan’s family suspected something may be wrong when he started limping.
“We thought he’d strained his ankle, but it wasn’t getting better quickly enough,” Govan told Yahoo UK.
Her daughter and Logan’s mother Sapphire Maclean took him to the GP twice and finally to A&E.
The youngster was referred for a scan of his hip and blood tests.
It was not until he saw a consultant that medics picked up on weakness in his right arm.
Logan underwent an MRI scan, which revealed a mass in his brain.
A biopsy at Glasgow’s Royal Hospital for Children confirmed it was DIPG around 10 days later.
“We quickly learnt it was incurable, that no child had ever survived a DIPG and the only treatment was palliative radiotherapy,” said Govan.
“Because of the tumour’s position on the brain stem, surgery for DIPG patients is rarely an option.
“In any case the median survival prognosis is eight to 12 months. Logan passed away just 11 months later.”
‘One child every fortnight is diagnosed with DIPG’
“There is not a parent or grandparent who wouldn’t take their child or grandchild’s tumour for them,” said Govan.
“To lose a three-year-old in this way is obscene.
“Logan was denied the opportunity to have an education or to graduate, to have an adult relationship.
“He didn’t get to grow up with a dream to become something specific, he didn’t get to have his own travel adventures, and he will never marry and have his own children.”
After losing her grandson, Govan is determined to help more funding be allocated to childhood cancers with poor survival rates.
“I had often donated to childhood cancer and hospital charities, believing the vast majority got better,” she said.
“I never realised how awful it could be, never imagined there were cancers that were untreatable.”
The petition has amassed more than 100,000 signatures, enough for a debate to be considered in parliament.
“Our hearts go out to Fiona and to all of Logan’s family whose world has been shattered by this cruellest of cancers,” said Hugh Adams from Brain Tumour Research.
“We would urge anyone and everyone to get involved and to make a difference by signing this petition.
“It is vital we continue to raise awareness of the shocking lack of investment for research into this disease.
“Brain tumours kill more children and adults under the age of 40 than any other cancer yet, historically, just 1% of the national spend on cancer research has been allocated to this devastating disease.
“It is unbearable to think that, here in the UK, one child every fortnight is diagnosed with DIPG.”
What is diffuse intrinsic pontine glioma?
DIPG is an aggressive, cancerous brain tumour that usually affects children between five and nine.
It is always classed as fast-growing and grade four, meaning the cancer has spread from where it started, typically to other regions of the brain or spinal cord.
DIPGs make up between 10% and 20% of all childhood brain tumours in the UK. Around 400 brain tumours are spotted in youngsters every year in Britain.
Symptoms include: an eye turned inwards, double vision, drooping on one side of the face, loss of control of certain body movements, poor co-ordination, struggling to speak clearly, reduced strength, overactive reflexes, and the sole of the feet feeling tickled or the big toe bending upwards. The latter is common in babies but not children.
DIPG’s exact cause is unclear, however, it has been linked to genetic mutations.
The survival rate is poor, with most patients living just eight to 12 months post-diagnosis. Around 30% are alive a year later, 10% at two years and less than 1% at five years.
Radiotherapy is commonly used to prolong life. The position of the tumour often means surgery is too risky.