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First published on Tuesday 13 April 2004: Brighton & Hove Argus

Cancer boy's last chance

by Karen Hoy

A boy suffering from an extremely rare form of cancer has been told he could die within weeks unless his parents can find last-ditch funding for pioneering surgery.

Joshua James, 14, has Ewing's sarcoma, an unusual cancer that mainly strikes boys aged between ten and 20, growing in bones and soft tissue.

Only about 30 cases are diagnosed in the UK each year.

Joshua and parents Cindy James and Simon Early have now been told it could kill him within weeks after a second tumour emerged.

They had hoped the past 12 months of intensive chemotherapy, radiotherapy and a stem cell transplant had been enough to save him.

But since receiving the news from experts at London's Royal Marsden Hospital, his parents have been desperately searching the internet for treatments.

Mr Early, 36, who runs web company sussexweb.co.uk from offices in The Lanes, Brighton, discovered potential treatments for the cancer were in use in Russia and Mexico.

But the most promising solution may lie at the University of Michigan in the United States, where a vaccine-type treatment is being tested.

Mr Early, from Peacehaven, has contacted the university with the help of Christof Kramm, a paediatric consultant oncologist at the Royal Marsden.

They are waiting to hear whether Varndean School pupil Joshua would be suitable for the treatment. If so, he would have to travel to the States at a cost of up to £36,000.

His parents believe it could be the teenager's last hope.

Mr Early said: "I'm not proud any more. I'm going to ask anyone for anything I can get. We have nothing to lose.

"It's horrible. You don't expect it to be like this. We have been told he has weeks and months rather than months and years.

"We haven't given up yet. We are not going to sit back and just make his time as enjoyable or comfortable as possible.

"We are going for a highly intensive strategy which will potentially provide a cure.

"We're trying to improve both the duration and quality of his life."

Dr Kramm has called Mr Early up to five times a day to advise him on the information he has been gathering from the web.

Joshua was a typical teenage boy who enjoyed computer games, sports and schoolwork. He developed a pain in his shoulder in August 2002.

His mother, of Birch Grove Crescent, Brighton, said arthritis was diagnosed at first and Joshua was prescribed painkillers.

The pain initially eased but soon returned even more acutely.

Joshua, who has two sisters, Kimberley, 18, and Isabel, eight, would lie on the floor unable to move.

Last May, Mrs James begged the Royal Alexandra Hospital for Sick Children in Brighton to take Joshua in. An MRI scan found lesions in his spine and he was sent to the Royal Marsden, where a primary cancerous tumour was discovered.

Joshua then spent six weeks undergoing chemotherapy, radiotherapy, and a stem cell transplant.

Mrs James, who had to leave her job at Sainsbury's in Lewes Road, Brighton, to take care of her son, said: "He responded so well and was so positive.

"Like many of these kids he has an amazing personality. He got me through it."

Joshua returned home in January but a second tumour appeared in his thigh.

He is undergoing more radiotherapy to shrink the tumour and reduce the pain but doctors have told the family they have no cure.

Mrs James, who is separated from Mr Early and married to John James, a baker, said: "It's another tumour and we're coming to the end of the road. All they can do is control his pain.

"Simon got on to the Internet and became aware there were other things in the world which might save Joshua's life but it's a race against time.

"It's so aggressive the chances are he could get another tumour next week. Joshua has got over the initial shock and he's prepared to do whatever it takes. He's frightened to leave us and his sisters. He wants to live."

For more details or to contribute, call Mr Early on 01273 203000 or visit www.joshjames.co.uk or www.sussexweb.co.uk/josh.

You can assist by visiting the donations page in either of the websites immediately above, or by bidding on items being auctioned online to raise funds at

www.ebid.co.uk - charity auctions for Josh

Many thanks

Gaz

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