THE parents of an eight-year-old boy with a brain tumour are trying to raise up to
THE parents of an eight-year-old boy with a brain tumour are trying to raise up to £200,000 to pay for revolutionary treatment.
Charlie Ilsley, from Emmer Green, has had to endure surgery and many hours of radiotherapy since he was diagnosed earlier this year.
And last week, he began four months of gruelling chemotherapy in the hope of beating the cancer.
His parents Mark, 46, and Toni, 45, want him to have proton therapy treatment — a type of particle therapy that uses a beam of protons to irradiate diseased tissue — so that he doesn’t have to have radiotherapy again.
The couple, who live in Buckingham Drive, Emmer Green, have set up Charlie’s Fund and launched a website for people who want to donate.
Mrs Ilsley said: “If he has a recurrence, if the tumour comes back, which in a lot of children it does, I don’t want him to have radiotherapy again.”
Charlie, who attends the Hill Primary School in Caversham, first showed signs of being ill in March when he started being sick in the mornings.
Mrs Ilsley, who is a technician at the pharmacy at Tesco in Henley and the Day Lewis chemists in Sonning Common, said: “He would get up in the morning, be sick about three times and then by about midday absolutely healthy once again, playing with his Xbox and eating and drinking.
“The first week I thought it was a bug and the second week I thought he was being bullied at school.”
When Charlie continued to be ill for a third week his mother took him to Emmer Green Surgery, where a doctor concluded he had a virus.
When he failed to get any better, the family returned to the surgery for another check-up and Charlie was given a blood test but nothing showed up.
He was then referred to the paediatric department at the Royal Berkshire Hospital in Reading.
But before the family could make their appointment Mrs Ilsley found her son lying on the sofa at home.
She recalled: “He said, ‘I couldn’t play outside, I really don’t feel very well. My head hurts, I’ve got a headache’. I thought he had viral meningitis.”
Mrs Ilsley immediately took him back to the surgery where they took a urine sample which revealed that it contained protein. Charlie was then referred to the Royal Berks where he saw a consultant.
Mrs Ilsley said: “As soon as I told her the symptoms of him being sick in the morning and better in the afternoon they knew. He had a CT scan.
“One of the consultants came in and said there was a 4cm by 4cm tumour in the back of Charlie’s brain. Then it was blue lights to the John Radcliffe Hospital in Oxford.
“I was in shock and don’t remember anything. I lost a good few hours.”
Charlie underwent a 10-hour operation on April 17 in which consultant paediatric neurosurgeon Jay Jayamohan partially removed the tumour.
Mrs Ilsley said: “You don’t want to see your child having brain surgery but on the other hand I wanted it because he had no choice.
“They said if it hadn’t been found, Charlie wouldn’t be here in four to six weeks. They scraped away three other little ones as far as they could but one is wrapped around a blood vessel.
“The surgeon was an absolutely lovely man and I felt so comfortable with him. He came and talked to us after the operation.
“It’s the most horrendous walk going into that little room. He told us he couldn’t remove it all and it didn’t look like it was benign.”
Charlie was diagnosed with anaplastic medulloblastoma, a malignant tumour. Another tumour was also found on his spine.
Mrs Ilsley never left her son’s side and was there when he woke up the next day.
She said: “The surgery was risky because they were operating on the brain so I didn’t know if it was going to be Charlie when he woke up. He tried to say ‘where’s my friend?’ He couldn’t say it so he spelt it out and I thought ‘excellent, he can spell’.”
Immediately after the operation Charlie spent three days in intensive care, where his brain activity was monitored, and he spent a total of three weeks in the John Radcliffe before returning home in early May. He was back in the hospital on May 6, when his stem cells were harvested over several days in preparation for chemotherapy.
He then underwent 31 sessions of radiotherapy to his head and spine at the Churchill Hospital in Oxford.
His mother said: “One of the side effects is that in years to come you can get tumours in the areas where radiotherapy comes out, so throat cancer and possibly stomach and bowel cancer. Radiotherapy is tiring but he coped with it really well.”
Charlie’s hair fell out and he suffered cracks behind his ears as a result of the treatment. His speech is impaired and he now has trouble walking and smiling.
He returned to the John Radcliffe to undergo physiotherapy, speech and occupational therapy.
Charlie uses a wheelchair, can’t see long distances out of his left eye and his balance isn’t good.
Mrs Ilsley added: “We don’t know how much of it will come back, it’s too early to say.”
He is undergoing his chemotherapy treatment at the John Radcliffe.
Mrs Ilsley said: “I’m not looking forward to going into hospital for four months. It’s a long time and I’m going to see Charlie being really ill but apparently we have to fight this disease hard first time around.
“It’s the worst thing that any parent could go through. They are expecting Charlie to become very ill with the chemotherapy because it’s some serious drugs.”
Her mother Linda Hall, 65, who lives in Binfield Heath, added: “It’s going to wipe out every injection or inoculation he’s ever had and he’s going to be so open to any infection.
“Hopefully he’ll be out before Christmas — we want to fast forward. It’s a battle we have to win.”
The proton therapy treatment would cost between £150,000 and £200,000. The family say that if in several years’ time Charlie is in remission and the money is not needed it will be donated to a children’s cancer charity.
Mrs Ilsley thanked her colleagues for their support and fund-raising. Staff at Day Lewis raised £962 for the Kamran’s Ward at the John Radcliffe, where Charlie has received treatment.
They also thanked Caroline Fairbrother, secretary of Shiplake Memorial Hall committee for her fund-raising efforts for the ward.
To make a donation, visit www.gofundme.com/p7ns5y74