Monday, 22 October 2018
THE parents of a boy whose cancer has returned after two years in remission say they will never give up on their son.
A new scan has revealed that Charlie Ilsley, 11, has three small tumours on his spine.
He is now undergoing a six-month course of chemotherapy but his parents, Mark and Toni, have been told there is no cure.
Further radiotherapy treatment has been ruled out and the couple are now exploring whether their son would be suitable for a clinical trial.
Charlie had been in remission since March 2016, a year after having a brain tumour about the size of a snooker ball removed.
When discovered, doctors said he might have only weeks to live and he was in and out of hospital for months as he underwent four bouts of chemotherapy before being given the all-clear.
Now the Ilsleys, of Buckingham Drive, Emmer Green, have received the news they had been dreading.
Mrs Ilsley, who works at the Day Lewis pharmacy in Sonning Common, said: “The John Radcliffe Hospital phoned me and asked if we could go up and discuss the results face-to-face, which they had never done before so we knew then it was bad. We got in the car and went straight up there. Before I went in I said to Dr Kate Wheeler, the consultant paediatric oncologist, ‘is it back, Kate?’ She said, ‘yes’.
“Charlie had a few tears because he thought he was going to have an operation again.
“I felt cheated and I just feel gutted for him. If they’d said, ‘it’s back and there’s a tumour in his brain’ I could have understood that because that’s where it started.
“Every time you have a scan, you get the results in the post. This one said there’s no long-term cure.
“I looked at it, I cried and then I burnt it because I didn’t want to see it any more.
“Charlie can’t have the same radiotherapy treatment again. He has had the maximum and it would damage his spinal cord and paralyse him. The chemotherapy he had — the harvesting of his stem cells and reintroducing them — his body couldn’t take that again.”
The bad news was broken to the family just before Easter and only weeks after Charlie’s birthday.
Mrs Ilsley said: “In that week I couldn’t eat. I was crying, I saw his funeral, I saw him dying, the whole lot.”
Charlie said: “I felt kind of scared and a bit upset because I thought I would have to have another operation.”
He said he felt well and enjoyed playing on his PlayStation and relaxing in the family’s hot tub=, adding: “I feel like I’m getting stronger.
“I’ve been catching up with my friends at school.”
He began his treatment this month, taking one tablet of temozolomide a day for five days followed by a three-week break. He has to repeat the course a further five times.
Mrs Ilsley explained: “This chemotherapy isn’t to cure him, it’s just to hopefully shrink the tumours.
“Everybody says relapse is harder than the first diagnosis but I think where it’s a little bit easier for us is that Charlie had two years clear whereas if you relapse right after treatment it shows that the cancer is really bad.”
She said there were four clinical trials which might help her son. She is most hopeful about the possibility of a drug called Afatinib, which targets a particular protein.
The tumour removed from Charlie’s brain is currently being analysed in Germany to see if this protein is present.
Mrs Ilsley said: “It’s a waiting game and more new stuff is coming out all the time.
“I feel like we have a fighting chance. Charlie’s so well in himself that it makes you feel better — he’s eating, sleeping and running for the first time and I think that’s encouraging.
“What I have learned is everyone’s so different and Charlie’s so strong. He had a course of chemotherapy and it was like he’d had paracetamol.
“I read something which said ‘you’re only as strong as you have to be’. We have to do the best we can and make sure he gets all the treatment he can have.”
Charlie returned to The Hill Primary School in Caversham soon after his latest scan.
“I realised that we sit here all day and he’s so bored and all he wants to do is see his friends,” said Mrs Ilsley.
“We just have to keep stuff normal for him. Every day we just do something he loves. You can’t give up on him because he’s not giving up on himself.
“While he’s well we’ll do everything we can as long as the doctors agree with it.”
30 April 2018
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