Preston teeangers’ Guild Wheel challenge for 15 and 25-year-olds battling brain tumours
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Two teenagers are preparing to take on a mammoth walk for two of their young friends diagnosed with brain tumours. Jordan Jones, 25, from Preston was diagnosed with an inoperable tumour covering 80 per cent of her brain in 2021, and now has only 20 per cent vision in her left eye.
Fifteen-year-old Faith O'Toole from Cottam is recovering after gruelling operations to remove a large tumour, which was not cancerous but had wrapped itself around critical areas of the brain, stopping her from growing properly and threatening her sight.
In a bid to help both Jordan and Faith, 15-year-olds Gracie McKay and Camron Lupton, who both attend Ashton Community Science College will be walking the entirety of Preston's 21-mile Guild Wheel to raise funds.
They were ‘heartbroken’ by seeing pictures of schoolfriend Faith in Intensive Care, and know Jordan through Gracie’s mum’s salon.
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Any money raised will be split between funding treatment for Jordan not available on the NHS, and to help Faith have some fun while recovering.
Sarah Copestake, Jordan's mum, said: "I get emotional when I start thinking about it. It makes it so much more special that they're taking time out of their own weekends.
"Teenagers get such a bad rep, but these guys are so selfless and supportive."
Jane O'Toole, Faith's mum, said: "It's absolutely incredible what they're doing. Hopefully we'll be there on the day to take part in some of the walk."
Jordan was a working at the Department of Work and Pensions with dreams of joining the police in 2021 when she noticed blurred vision in her right eye and made an opticians appointment.
Mum Sarah, a community nurse, said: "She asked us to pick her up because they'd put drops in her eyes. While we were on our way home she told me that the optician said they'd be referring her to the hospital, and that she was actually blind in her right eye, but she didn't want to worry us.
"I had a mini meltdown, but I was trying not to panic in front of her.
"Then she said they'd be in touch within 24-48 hours. Well, you don't need to be a nurse to know something is serious when it's that quick."
Within 30 minutes of arriving home, the hospital had called to arrange a scan, and on the following May Bank Holiday, the family were given the devastating results of the MRI – that a Jordan had an inoperable tumour covering 80 per cent of her brain.
A biopsy in July 2021 led to a stroke at the same time, and radiotherapy and chemotherapy made her to ill to continue.
Jordan needed blood transfusions and became very weak, and started having back-to-back seizures, eventually being diagnosed with epilepsy.
Her consultant found a treatment to help get her off steroids that have been causing problems with her mobility due to weight gain, but the drug Avastin is not licensed for brain tumours or funded in the NHS.
Sarah said: “It was like a double-edged sword. There was something that might help, but we couldn’t get it on the NHS.
"I’m on nursing money and Jordan’s dad is her main carer.
"I felt awful for setting up a funding page, you really have to talk yourself into it, but it's what we had to do.”
Friends and family rallied round and raised just under £6,000 for two courses of the treatment, which was carried out privately in June.
The treatment has helped with the swelling and some of the symptoms of Jordan's illness, and Jordan’s family are hoping to be able to raise more funds for more treatment next year.
Sarah added: “"It's a case of watching and waiting. But Jordan is so positive and sometimes I'm humbled by her outlook on life."
Mum Jane, a palliative nurse who lives in Cottam, said her concerns were over the fact that Faith had unexpectedly stopped growing and was small for her age.
Despite Jane having to keep pressing to get Faith an examination, it turned out she was right – a tumour had affected not only the area around Faith’s left eye but also the pituitary gland, which affects growth.
Jane said: "My world turned upside down and I crumbled but had to go and pick Faith up from school, go and get our bags packed for the hospital and act calm for her!
“They said Faith had a rare brain tumour called a cranipharynginoma. It’s not a cancerous tumour and will not spread to other parts of the body ,but it can grow back if not all of it removed.”
Unfortunately her tumour was large and was affecting her optic chiasm, left eye, hypothalamus and pituitary gland.
Neurosurgeons told Jane that Faith needed surgery but there were the risks .
In July she had a nine- hour operation leaving behind only small scattered bits which were too close to vital structures to remove . However, spinal fluid started to leak through her nose and she was taken into surgery the next day to have a lumber drain to relive pressure on the brain.
She then contracted meningitis as a result of the opening from the surgery.
Faith spent six weeks in hospital however has now returned home to recover. Mum of two Jane, who also an 18 year old son, William, said: "I want to raise awareness about parents who doubt their gut feelings that’s somethings just not right.
“You have to fight for your child because you know them better than anyone.