Tuesday, 28 September 2021

Brave boy home for Christmas

A BOY battling a brain tumour is spending Christmas at home with his family after months of gruelling

A BOY battling a brain tumour is spending Christmas at home with his family after months of gruelling chemotherapy treatment.

Charlie Ilsley, eight, has spent the last three months in and out of hospital but his parents Mark and Toni say they are delighted to be spending the festive season together as a family.

Charlie, of Buckingham Drive, Emmer Green, was diagnosed with a malignant tumour in April and has undergone three sessions of chemotherapy since late August in an attempt to eradicate the cancer.

A scan after the second bout came back as clear but he still faces one more round of the treatment and will return to the John Radcliffe Hospital in Oxford on New Year’s Eve.

Mrs Ilsley, 45, who is a technician at the pharmacy at Tesco in Henley and the Day Lewis chemists in Sonning Common, said: “We feel like we’re getting through it — we’re just doing what we have got to do and hopefully it’s going to stay away.

“Since the awful diagnosis on April 17, it has been positive so far. The treatment has been okay, it could have been worse. The scan results are brilliant — we count ourselves lucky.”

Since starting his treatment, Charlie has only been able to spend about two weeks at home at a time, or sometimes just a few days.

Mrs Ilsley said: “Even though we have had some ups and downs, there are people in the John Radcliffe worse off than us. There are people who haven’t got such a good chance and it makes you feel lucky in some strange way.”

Charlie, a pupil at Hill Primary School in Caversham, has now been home for three weeks, the longest period since starting his treatment.

Mrs Ilsley said: “It’s lovely because I need to get some weight on him. He doesn’t eat very well in hospital so it gives me a chance to build him up before he’s knocked down for the last time.

“We’re just going to make the most of it while he’s out. I can’t imagine how we would have done Christmas in hospital. They say it’s a lovely day and they make it really special but it’s not like being at home.

“A clear scan forever would be the best Christmas present in the world but having him home is great. We’re pleased to be having Christmas together.”

Mrs Ilsley’s mother Linda Hall, 65, from Binfield Heath, said: “It has really made our Christmas to have him home after such a terrible year.

“We really expected to be spending Christmas Day at the hospital. For us all to be together is extra special and has given us that extra bit of magic.

“He’s going back in on December 31 for his last fight, as we call it, so we’re nearly there.

“Now I want to fast forward to next Christmas so I can see him with his curly hair and I can tell him off again!” Mrs Ilsley was more cautious, saying: “I thought ‘come on, hurry up 2016’ because 2015 was awful, but who knows what 2016 will hold? I’m too scared to think it will be a better year next year.

“When you get a diagnosis like this you prepare yourself for the worst. You’re scared to let the good stuff come in in case you get knocked down again. When you’re in this situation it’s day to day.

“I can’t allow myself to feel or do anything other than just be there for Charlie. Maybe when it’s finished I’ll end up like a mad, crazy person and I’ll have to go into hospital for a little while!”

Charlie is spending Christmas at his 25-year-old sister Jessica’s home in Emmer Green with his parents and brother, Ollie, 18.

Mrs Ilsley said: “Normally I have everyone at my house but this year I didn’t want to plan it just in case something happens.”

Charlie is hoping for a drum kit or an electronic keyboard from Father Christmas after discovering a love for music, especially Christmas songs, while in hospital.

Fortunately, he experienced few side effects from his chemotherapy but had to switch drugs during the first course of treatment as it was causing damage to his kidneys.

The treatment itself takes four days and on the fifth day the stem cells harvested from Charlie before the chemotherapy are reintroduced to his body to aid his recovery.

He then has to stay in hospital for two to three weeks because his immune system is severely impaired, making him susceptible to infection or illness.

After his first bout Charlie experienced nausea and had to be taken to the Royal Berkshire Hospital in Reading, where he spent nearly a week.

He was also unwell after his third bout. His platelet count dropped to below 10 so he was admitted to the Royal Berks for a blood transfusion and ended up having to stay for three days after he suffered a bad reaction.

Charlie first showed signs of being ill in March when he started being sick in the mornings and 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 he 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 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.

His parents have set up Charlie’s Fund in a bid to raise up to £200,000 to pay for revolutionary treatment if the disease returns and have launched a website for people who want to donate.

They 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 fund currently stands at £12,500.

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 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 or towards research.

Mrs Ilsley said: “Charlie was asking me about his lump. He knows that at the moment it has gone. He asked me what happens if it comes back and I said ‘we need to have some more medicine’.”

Earlier this month. the family held a party called Charlie’s Golden Ticket at Shiplake Memorial Hall, which raised £2,500.

About 130 people attended and were entertainedby Mrs Ilsley’s friend Esme Campbell who danced the tango and waltz with her partner Elliot Plate, live music from band Soulger and a raffle.

Mrs Isley thanked everyone who has helped or given money.

To make a donation, visit www.gofundme.com/p7ns5y74

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