Research trial saved my son’s life

A 14-year-old who was the first child in the country to take part in a global drug trial has returned to school after being in remission for over a year – a fact his mum puts down to his participation in the trial.

At the age of 11 James Morley started seeing red wherever he looked. Knowing something was wrong his parents took him to see an optician, who could see blood cells bursting in his eyes. James, from Sutton-in-Ashfield, was then rushed to the Queen’s Medical Centre in April 2012 where he was diagnosed with Philadelphia positive acute lymphoblastic leukaemia – a rare illness in children.

Dr Emma Astwood, Paediatric Haematology Consultant at the Nottingham Children’s Hospital, said: “Acute lymphoblastic leukaemia is the most common type of leukaemia seen in childhood, but Philadelphia positive only accounts for three to five per cent of childhood cases.

“It means the leukaemia is more difficult to treat than normal and the prognosis for sufferers can be worrying. It’s difficult to know, but previously the prognosis was about 40-50 per cent survival.

“A lot of children have previously needed a bone marrow transplant, which replaces damaged bone marrow with healthy bone marrow stem cells, but transplants are complicated and have significant risks.”

James’s chemotherapy treatment began almost immediately following his diagnosis and for his mum, Pam Morley, the diagnosis and subsequent treatment proved a difficult time for the family.

“The first year of the illness was the worst – we were back and forth between the hospital, often at a moment’s notice. It was like a rollercoaster – you didn’t know when you were getting off or where you were going,” she said.

“At first it was a shock, but you get used to it. You’ve got to get a grip on life and carry on – you have to pull yourself together.”

Shortly after James’s diagnosis the family was approached by a consultant about taking part in a research trial for a new drug, known as Dasatinib. The drug, which was already available for adults, works by blocking a signal that tells leukaemia cells to grow.

After agreeing, James became the first child in the country recruited to the global research trial. During the next two years he underwent regular chemotherapy, while taking the new drug once a day.

Now aged 14 James has been in remission for over a year – a fact his mum puts down to his participation in trial.

“I believe it saved his life. Without the drug James would most likely have had to have a bone marrow transplant, something I know is complicated and risky” said Pam.

She added: “I would tell everybody to get involved in health research if they or their children are offered – it could save your kids life.”

Dr Astwood added: “While results from the Dasatinib drug trial are not yet known James has been in remission for over a year now since completing his treatment and will be undergoing regular monitoring. It is too early to say what difference the trial has made to James, but he has made really good progress to date.”

James, who returned to Beech Academy in Mansfield earlier this month, is very proud to have been part of the drug trial. He said: “To be honest it feels brilliant to be part of the trial. All-sorts could come out of it and knowing I can help other poorly children is brilliant. If you get the chance to be part of a trial definitely do it.”’s-life/