The family of a Kinross teenager with one of the world’s rarest cancers have pledged to do everything they can to find a cure.
Joscelyne Kerr, 18, was given 12 to 18 months to live after she was diagnosed with a stage four brain tumour in December.
She is thought to be one of just six or seven people in the world with a tumour called an anaplastic pleomorphic xanthoastrocytoma, or A-PXA for short, on the the third nerve.
Radiotherapy and chemotherapy have not worked and while the drugs she is currently taking will hopefully slow the cancer’s spread, there is no cure yet.
Joscelyne’s mum Ann says her bubbly, smiling daughter is now facing her “last chance saloon” with potentially no further NHS treatments left to try.
The normally private family has launched a £250,000 fundraiser in the hope of raising enough money to pay for pioneering brain immunotherapy, which isn’t available on the NHS.
And for this reason they have taken the difficult step of speaking about Joscelyne’s ordeal to raise awareness of her situation.
In the meantime, the Edinburgh University astrophysics student is determined to remain positive and live life to the full.
Enlarged pupil was first sign of brain tumour
Joscelyne attended Auchmuty High School in Glenrothes before she moved to Kinross with Ann, dad Robin and 16-year-old sister Evie .
The straight-A student was preparing for the Kinross High leavers’ prom last summer when she first noticed a problem.
The pupil in her left eye was blown, meaning it was greatly enlarged and unresponsive to light
An optician suspected a virus but when it had not cleared by August, Joscelyne was sent to Ninewells Hospital.
CT and MRI scans revealed what doctors initially thought was a rare but non-cancerous tumour on her third ocular nerve.
“That’s extremely rare,” said Joscelyne. “There have only been 60 cases in the world ever.”
Body was shutting down
Despite her diagnosis, the determined teenager started university, qualified for the competitive dance team and continued to play rugby.
However, a second scan in November showed the tumour had grown substantially and by December 5, Joscelyne was in surgery.
The operation proved extremely complex with the tumour wrapped around the carotid artery and tracking along the nerve to her brain stem.
And while the surgeon was able to remove part of it, Joscelyne lost the muscle function in her left eye, which she can no longer open.
Just four days later, Joscelyne’s body began to shut down and she lost the power of speech and movement.
The family feared the worst. But, according to Ann, she began to “reboot like a computer”.
She has now relearned to speak, regained her movement and is still studying.
Joscelyne Kerr smiling her way through treatment for brain tumour
Ann said: “In hospital she became known as the smiler.
“We’ve had to inject humour into the situation, every step of the way to enable us to cope. You just have to.”
Unfortunately, the family’s resilience was tested further with two more devastating blows.
“Two weeks after the operation, they told us it was cancerous, it was stage four and she probably had 12 to 18 months,” said Ann.
“We decided to have a quiet family Christmas, then Robin’s mum died and we had to plan a funeral.”
Determined to fulfil life plan
But still Joscelyne refused to feel sorry for herself.
She went to Edinburgh Christmas Market, then ice skating with family friends, wearing a helmet and two hats to protect her head.
And she even sat her first university exam online the night before her operation, passing with flying colours.
“I have a life plan,” she said. “It’s to graduate by 22, get a job by 24 and settle down by 27 to 30. I’m not adjusting it.”
And the Kerrs hope their fundraising will allow Joscelyn to fulfil her ambition.
‘Soul searching’ over what to do next
“The operation took away 90% of the tumour but there’s some remaining, wrapped around the carotid artery, which is growing aggressively,” said Ann.
“At the moment she’s on targeted drugs that are extremely expensive to the NHS with the hope they will slow the growth. But there’s no guarantee.
“We’re on an emotional rollercoaster and will find out late May if they are working.
“Even if they work, it might only be for a few months or, if we’re lucky, a few years..
“We’ve done a lot of soul searching over the last few weeks over what to do next.
“Is it ethically right to raise money now if we can’t 100% guarantee she’ll have the immunotherapy, as further surgery would be needed? But we have to try.
“If it can’t happen, Joscelyne has requested the money go into research, in her name, as it may save someone else.”
‘Amazingly brave and positive’
In the meantime, Ann is looking into all the drugs in development and global trials which may enable Joscelyne to have another option.
Joscelyne’s story is capturing hearts and donations are pouring in.
Already, family, friends and complete strangers have helped raise more than £30,000.
Ann added: “There are no words that can sum up how amazingly brave and positive our Joscelyne is.
“And no words of thanks can truly convey our gratitude.”
You can follow Joscelyne Kerr’s journey on Facebook as she continues her brain tumour treatment.
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