A senior regional journalist has spoken out for the first time about the loss of his nine-year-old son to cancer in a bid to raise awareness of the disease.

Saul Chapman, son of Trinity Mirror group development director Toby Chapman, died in September 2014 after an 11-month battle with a rare form of cancer that affected just 15 people in the UK between 1985 and 2009.

Now Toby, of Helmshore, Lancashire, has written at length about his experiences for the first time in a piece to mark the start of Childhood Cancer Awareness Month.

His moving account of Saul’s battle with the illness was published in the Manchester Evening News and some other TM regional titles yesterday.

Saul, left, with mum Deborah, dad Toby and brother Archie at Christmas 2013

In the piece, Toby writes of the moment he and his wife Deborah were told “the words no parents ever want to hear.”

Doctors at Blackburn Royal Infirmary told them “we think Saul has cancer” after the boy was admitted to hospital suffering from a distended stomach.

Wrote Toby: “Nothing can prepare you for hearing those words and for families affected by this cruel disease nothing is ever the same again – whether your child survives or not.

“Saul was taken straight to a specialist childhood cancer ward at the Royal Manchester Children’s Hospital – and straight into a world we never really knew existed – children fighting for their lives and undergoing horrendous procedures day after day while the normal world just carries on outside.”

Saul was eventually diagnosed with a form of cancer called desmoplastic small round cell tumour (DSRCT) – a very aggressive and extremely rare disease with poor survival rates.

Over the ensuing months, he underwent chemotherapy, radiotherapy, surgery and a stem cell transplant in a bid to beat the condition – but to no avail.

Wrote Toby: “Just when we began to think he might be a miracle boy – he was hit by another body blow. A scan showed the tumours hadn’t shrunk enough to have surgery. And without surgical intervention there was no hope of a cure.

“With no alternative treatment plan we had to make the heart-breaking decision to put Saul’s quality of life first. We decided not to complete the final two courses of chemotherapy and instead started upon what was possibly going to be our last summer together.”

Saul celebrated his ninth birthday in August 2014 but his health steadily deteriorated over the following weeks and he died on the morning of Tuesday, September 16, 2014, with his mum and dad at his side.

Toby and Deborah have set up a fund-raising page with the Children’s Cancer & Leukaemia Group charity in memory of their son to help fund vital research into rare childhood cancers.

Said Toby: “Research and funding into childhood cancer is woeful in comparison to adult conditions. This is true of the United Kingdom, Europe, America and across the rest of the world. A better understanding of children’s cancer would inevitably lead to improved care and advances in cures for all.”

Toby’s piece, together with a video of him talking about his experiences, can be viewed in full here.