Wednesday, 08 July 2020
A BOY given months to live is to fly to Mexico for cutting-edge cancer treatment which has proved successful in eradicating the disease in mice.
Charlie Ilsley, 13, of Buckingham Drive, Emmer Green, is battling cancer for the third time after he was first diagnosed with a brain tumour in 2015. He now has tumours on his spine.
Earlier this year, his parents Mark and Toni were told that chemotherapy and immunotherapy treatment had failed.
Since then they have been searching for a trial that could save their son’s life.
Now the family are to fly to Mexico City on June 18 for Charlie to start a new form of immunotherapy which will last three weeks and cost almost £20,000.
Charlie, who currently has no symptoms, is being helped by Dr Jason Williams, an award-
winning doctor and the director of interventional oncology and immunotherapy at the Williams Cancer Institute, which also has branches in America and China.
Mrs Ilsley said she believed the treatment had only been used on small number of patients previously and was hopeful it would help her son.
She said: “It has been done in mice and has been really successful, killing all the medulloblastoma. It’s supposed to wipe it out. It’s brilliant because we can now move forward. I think being so cutting-edge, this is what we need. I know it’s not at clinical trial stage, it’s very, very new.
“Nothing has worked so far so let’s try a bit of experimental therapy. We can’t go down the chemotherapy route as it’s not going to work.
“This is time ticking away now. I’m just sitting here waiting thinking, ‘is he going to get worse? Is he going to get paralysed before we can go?’. I think, ‘look how well he is, why can’t we just go now?’ My head plays games with me all the time.”
The Ilsleys will fly with Charlie on Thursday so that they have time for a stopover. The treatment will begin on June 22.
Charlie told the Henley Standard that he didn’t mind travelling to Mexico and was looking forward to trying tacos.
Mrs Ilsley said searching for a trial on which her son would be accepted had been an “absolute nightmare”.
She hs previously been told Charlie was ineligible for trials at hospitals in both Memphis, Tennessee and in Seattle, Washington.
He was ruled out of the first because it was for brain cancer rather than disease of the spine, and the latter, known as CAR T-cell therapy, a type of immunotherapy, because Charlie’s original tumour didn’t have the protein which the treatment targets. He was also not suitable for two trials in Philadelphia.
“It was worrying me to death because I lost all these trials,” said Mr Ilsley. “Now we’re actively doing something, we have got hope again. We’re in good hands and it’s something Charlie has never had before. I feel we’re really lucky with the people we have met on this journey.”
Charlie, who attends Highdown School in Emmer Green, has enjoyed being off school while it had been shut during the coronavirus pandemic, except to children of key workers.
His mother said: “His hair’s growing and I’ve cut it twice and I’m pretty sure he’s getting taller. He’s right up by me now.”
Charlie was given the all-clear for the second time in August after undergoing specialist radiation treatment in Turkey which his family had to raise the money to pay for. But in November they were told the disease had returned after a lumbar puncture showed cancer cells in his spinal fluid and a scan in March showed the disease prominently in his spine and in other areas.
Charlie had been receiving the drug etoposide through a reservoir inserted under his scalp in January and topotecan but these treatments have ceased.
In 2015 he was diagnosed with a brain tumour and another on his spine. He underwent a 10-hour operation and had 31 sessions of radiotherapy followed by chemotherapy before being given the all-clear in March 2016.
Then in spring 2018 two tumours were discovered on his spine.
The family still need to raise £9,000 to ensure all of the treatment, plus accommodation and expenses are covered.
12 June 2020
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