Friday, 12 August 2022

Brave Charlie can have hope

THE family of a boy who has spent the past year battling a malignant brain tumour say

THE family of a boy who has spent the past year battling a malignant brain tumour say they now have hope following a clear scan.

Charlie Ilsley, nine, has spent months in and out of hospital and has undergone four bouts of chemotherapy in an attempt to eradicate the disease.

Doctors said that if the tumour hadn’t been found he would have had only weeks to live.

Last week Charlie’s mother Toni and father Mark, of Buckingham Drive, Emmer Green, received the news they had been hoping for when consultants at the John Radcliffe Hospital in Oxford told them an MRI scan showed no further growth. Mrs Ilsley, 46, told the Henley Standard: “They opened the door and there were two doctors there so I thought it was bad news.

“Then the consultant told us it hadn’t changed from the last scan so there’s no growth and they can’t see any tumours. It was just a feeling of relief.”

Charlie now faces scans every three months to monitor his brain. Mrs Ilsley, who is a technician at the pharmacy at Tesco in Henley and the Day Lewis chemists in Sonning Common, said: “We’ve got to get past these three-month scans and this was the first one.

“We could have been coming home with bad news so obviously it’s excellent that one’s clear, although I’ve got the worry of the next 10.

“Although I feel like we’re living on the edge, I think we have hope now.”

Charlie’s latest scan took place on March 24 but the family had to wait a week for the results when they returned to the hospital.

Mrs Ilsley said: “I went to work in the morning at Tesco but on the journey from home to the John Radcliffe my stomach was in a knot.

“We had to wait an hour-and-a-half. I was just praying that it was okay and trying to think how to deal with it if it was not.” Despite the good news, Charlie may still experience the effects of the radiotherapy treatment on his pituitary and thyroid glands and has to have regular tests. He may also need a growth hormone to help with his development.

He is not in any pain but is still weak on his left side, so is having hydrotherapy and occupational therapy at the Royal Berkshire Hospital in Reading to help develop his motor skills.

“They said to me the damage is not now, it’s going to be in the next five years with his memory and stuff like that,” said Mrs Ilsley.

Charlie first showed signs of being ill in March last year when he started being sick in the mornings. After a CT scan, doctors discovered a 4cm by 4cm tumour in the back of his brain. He underwent a 10-hour operation on April 17 in which consultant paediatric neurosurgeon Jay Jayamohan partially removed the tumour. Another tumour was found on his spine.

Immediately after the operation Charlie spent three days in intensive care, where his brain activity was monitored, and then almost another three weeks before returning home.

He was back in the hospital a few days later, when his stem cells were harvested over several days in preparation for his chemotherapy treatment.

He then underwent 31 sessions of radiotherapy to his head and spine at the Churchill Hospital in Oxford. Charlie began his last round of chemotherapy on New Year’s Day at the John Radcliffe after spending Christmas at home with his family and fortunately didn’t suffer any complications.

During his treatment, he was only able to spend about two weeks at home at a time, or sometimes just a few days.

But since leaving hospital he has enjoyed a family holiday to Tenerife and celebrated his ninth birthday at TGI Friday’s in Reading last month.

Mrs Ilsley said: “It was special because he’d got to his ninth birthday. We weren’t sure that was going to happen last year.

“The holiday was lovely and it did him so much good just to sit outside. I think he’s got a lot stronger since the holiday. He doesn’t stop eating and he’s sleeping like a log.” Charlie’s hair has started to grow back and he has been going back to lessons at the Hill Primary School in Caversham.

His mother said: “He has to get back to normal and to see his friends. It’ll do him the world of good. It’s like physio going back to school, moving around, playing with his friends and getting stronger.”

The Ilsleys have set up Charlie’s Fund in a bid to raise up to £200,000 to pay for revolutionary treatment if the disease returns.

They would want Charlie to have proton therapy treatment, so that he doesn’t have to have radiotherapy again. The fund currently stands at more than £14,000.

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. 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.”

The treatment would cost between £150,000 and £200,000 but the couple 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 or towards research.

Mrs Ilsley thanked all those who had treated her son and everyone who had donated, particularly Caversham Working Men’s Club and Church Street Baguettes, also in Caversham.

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