How car crash could have saved brain tumour victim Tyler

MPs are to discuss brain tumour research funding after 100,000 people signed a petition. Catherine Scott meets families affected by the cruel disease.

Tyler Manley, 11, who had a brain tumour

Tyler Manley was like any other eight year old. She liked spending time with friends, going to Brownies and laughing with her mum.

Then in August 2013 she was with her mum when their car was involved in an accident.

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“The car hit us on the side and I noticed after the crash that she had started squinting and had been sick a couple of times, but nothing that I was too worried about,” says Tyler’s mum Liz Green from Glusburn.

“I took her to the opticians in Keighley just to see what was going on and she sent us straight to Bradford Royal Infirmary.”

The optician had spotted pressure behind Tylers eyes which raised alarm bells.

“I still thought it was something or nothing but when we got to the hospital and they took Tyler off for some scans they came back and asked if there was anyone who could be with me. I knew then that it was going to be bad news.”

Tyler was transferred to Leeds and doctors broke the news that she was suffering from a brain tumour. “She’d obviously had it for some time but really hadn’t shown any symptoms. The car hitting us from the side had moved the tumour and that saved her.” The trip to the optician ended up being a five month stay in hospital for Tyler, her mum and partner Jimmy. 
“I don’t know how we would have coped if we had any other school age children.”

Surgeons took 12 hours to remove the tumour which was around 5cms in size.

“Nothing prepared us for how she was after surgery, this was the hardest and longest day of our lives and the start of our battle against this cruel disease.” The surgery was only the start of Tyler’s long battle to recovery.

“Tyler was on a ventilation machine with a drain on her brain to ease pressure. The Macmillan nurse and surgeon came to see us and we were told the heartbreaking news that the tumour was malignant.

“She had gone from seemingly healthily to being only able to squeeze our finger, because following surgery she had developed a condition called Posterior Fossa Syndrome. The speed of everything happened just made it really hard for us to accept. I left work to take Tyler to the opticians and didn’t got home for five months.”Posterior Fossa Syndrome can happen in children who have undergone surgery to remove brain tumours. It means the right hand side of Tyler face is paralysed and the left side of her body is weak, her eyes can only move up and down rather than side to side and her balance is affected which means she has to use a wheelchair most of the time, although her mum is encouraging her to be more independent and walk with sticks. After the surgery Tyler spent nearly a week in intensive care and then a week and a half on a high dependency ward.

“She was so poorly we really feared we might lose her, but as a parent you are determined you will take your little girl home.” When Tyler became stable Liz was advised she would have further surgery to relieve pressure on the brain, which was then followed by a high dose of chemotherapy, and radiotherapy,.

“Whilst undergoing twice daily radiotherapy, Tyler still continued with her intense rehabilitation. Her sheer determination and strength amazed us all,” says Liz.

“We finally went home on the March 24, 2014 and Tyler started 18 months of maintenance chemotherapy which finished in February 2015. She now has regular scans to check the tumour hasn’t returned.

“For Tyler this has been and still is a very hard battle. But she is such a determined girl. She is 11 and goes to school full time although she does need to some extra support. She goes to Guides and is always busy. She is looking forward to going to high school in September. She won’t let anything hold her back.

“As a parent nothing can prepare you for this journey. You become a carer overnight, instead of protecting your child you are allowing them to have medicines which make them sick, holding them whilst doctors and nurses insert needles and there is nothing you can do but sit and watch and hope and pray that she beats it.”

During brain Tumour Awareness Month the family is backing a petition calling for more money to spent into research. Brain tumours kill more children and adults under 40 than any other cancer. Unlike most cancers, brain cancer incidence is rising. Less than 20 per cent of those diagnosed with brain cancer survive beyond five years. In 2014, brain tumours received 1.5 per cent (£7.7 million) of the £498 million national spend on research into cancer.

More than 100,000 people signed a petition calling on better funding for brain tumour research and that is now to be debated in Parliament on April 18. They would also like to see more awareness . “In Tyler’s case she wasn’t symptomatic but in many cases where children do have the symptoms they are misdiagnosed,” says Liz

York mother Julia Holding knows only too well the problems with diagnosis. It took 18 weeks for her daughter Ruby’s brain tumour to be diagnosed. Ruby has been left blind since she had an operation remove the tumour in 2012. “I believe the delay in diagnosis led to Ruby losing her sight,” says Julia who has been very involved in trying to educate GPs about brain tumours in children. Most definitely needs to be done, especially when it comes to children and so I welcome the fact that this is now going to be debated.”

As for Tyler Manley she, her family and school friends are supporting Flat Cap Friday tomorrow organised by Brain Tumour Research and Support across Yorkshire.

As part of Brain Tumour Awareness month in March, Brain Tumour Research and Support across Yorkshire (BTRS), are raising awareness and funds for the charity through a celebration of the flat cap, in homage to their Yorkshire roots. BTRS are asking organisations and individuals to host their own Flat Cap Friday event on Friday 18 March 2016, to raise awareness and funds of BTRS and the vital work that they do in Yorkshire funding brain tumour research and supporting those affected by a brain tumour. It is estimated that over 1000 brain tumour patients are newly diagnosed across the Yorkshire and Humber region each year; around 10% of these are under the age of 18.

www.btrs.org.uk