Louby's Lifeline: ‘Seeing your child go through this is agony’

She now has a second nickname, the one surgeons and staff who have looked after her for the past six months came up with and, quite simply, it’s ‘Legend’.

The 17-year-old was a bright, bubbly and humorous teenager studying English Literature, accounting and psychology at Norton College sixth form after passing 14 GCSEs.

She loved to socialise – a little more than she should at times according to her mum Emma – and was always the last talking when asked to be quiet.

Louby was always on the go. She had a part-time job as a waitress and was a keen sportswoman. After A-levels, she wanted to study health and social studies at Scarborough before university and eventually become a primary school teacher.

On April 16 Louby and Emma’s lives changed for ever.

Louby collapsed at work and was taken to York Hospital.

“I got a call and managed to get to her before the paramedics,” Emma said.

“At York we were told they were keeping her in overnight to do some tests including an MRI scan. The tests were referred to Leeds and revealed Lou had two Ependymoma tumours in her brain stem.”

Lou was transferred to Leeds General Infirmary for surgery.

“After the first operation Lou recovered well initially, but then went downhill and kept losing her balance,” Emma said.

“I then got a phone call saying I had to be back at the hospital to meet her surgeons and they explained about the cancer.”

Lou’s cancer was so aggressive that even the operation she faced posed huge risks.

The tumours were embedded in her brain stem. Emma had to deal with the news that Lou could die or the operation risked wiping out every nerve in her body.

Emma said: “What choice did we have? The cancer had to be dealt with so we agreed to the surgery.

“Having made that decision, it was made more difficult to stick to when they were told us no one had carried out an operation like this before.”

Lou’s scans were sent around the world with surgeons in Toronto putting forward an operation plan to Leeds neurosurgeon Paul Chumas.

Less then two weeks after her first major operation, Louby was taken into theatre again.

“They predicted the surgery would take about six hours. It took 18-and-a-half hours,” Emma said.

“Paul pulled together a team of five surgeons and led them through the operation, taking out some of the tumour in tiny fragments and phoning me from the theatre every three hours to keep me informed.”

Lou came through but was put into a coma, on a ventilator. She was paralysed down the left side of her body and the right side of her face and could only blink to communicate.

She had just six weeks to prepare to transfer to St James Institute of Oncology for cancer treatment but in that time developed two strains of meningitis and had to have a tracheotomy fitted.

“The staff knew she had to get there for her treatment and they did everything possible for her,” Emma said.

“But they had never dealt with someone of Lou’s age having tumours of these grades.”

Lou went through a gruelling six-and-a-half week course of radiotherapy on her brain and spinal column.

“Her case is exceptionally complicated and we have the best and top men and women in their field working closely together,” said Emma.

“As a mum I have been trained to do things I never thought I would do in my life, including fitting a tracheotomy and giving her the 66 syringes a day she now needs.”

Lou now spends five nights a week at a rehabilitation centre at Chapel Allerton, returning home for the weekend.

Injections into her throat have stimulated her vocal cords but she is unable to eat or drink anything.

“She has lost the use of her central cord which they are teaching her to rebuild. There has been so much nerve damage we are just trying to find out what is left.

“Lou also has short-term memory problems but she each day she is taking huge mini-steps and her goal is to walk around the kitchen and get her own drink,” said Emma.

She added that they could not thank the staff at the LGI and Jimmy’s enough.

“They have all been so wonderful and a true credit to their professions. Without them neither of us would be where we are today,”

Emma said.

“This is a devastating disease that affects every part of you. Watching your child go through this ordeal is agonising.

“We pray for a treatment to be found that is less punishing and aggressive, that will contain the tumours and let Louby get on with living the life she had, and the one she deserves.”

How to help

REPORTER Karen Darley is pictured above with the Louby’s Lifeline t-shirts, priced £7.50, which will be available from the Gazette & Herald office in Yorkersgate, Malton, from Monday.

Wristbands, priced £1 will also be on sale at the office.

Donations, including cheques made payable to Louby’s Lifeline, can also be left at the office from Monday.

Alternatively visit www.justgiving.com/loubyslifeline

Anyone who is organising a fundraising event or who wants to get involved, should phone Karen Darley at the Gazette on 01653 695600 or 07813 726345, or email maltongazette@gazetteherald.co.uk