Helping others... for the love of Adam

9:36am Friday 15th August 2008

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His photograph is everywhere.

Sometimes he is with his brothers; others, with his parents or friends. Then there are the ones of him alone, always smiling, confident. So much to look forward to. You also smile at the photographs, then you remember why there are so many.

Adam Rogers was 13 when he died. He had an inoperable brain tumour – cancer – and there isn’t a day that goes by when his parents do not miss him.

But grieving wasn’t enough. Mark and Fiona Rogers wanted to do something which would help other children and their families who, once that diagnosis is made, have their lives turned upside down – and they saw a lot of that while Adam was in Addenbrooke’s Hospital, Cambridge.

“In a practical sense, we were lucky,” said Mr Rogers. “We do not have money worries and I could take as much compassionate leave as was necessary. We also have a very strong network of family and friends so our other children were looked after while we were at the hospital with Adam.

“But few others have that. I saw a single mum with a very sick child. She did not get visitors which implied she was facing this on her own.”

Addenbrooke’s takes all children from the east of England – including north Essex – and north London who have cancer.

These children could be at the hospital for quite some time which throws up all kinds of problems for one-parent families and those with financial concerns, especially as travelling from north Essex to Cambridgeshire, sometimes on a daily basis, isn’t cheap.

Many need advice on how to get grants and benefits, but, currently, that doesn’t happen. Neither does the kind of support Adam received exist for the vast majority.

The reason Adam had a specialist nurse assigned to him was simple. He was dying; his palliative care was priority. But most children don’t die. More than 70 per cent are eventually cured. They leave Addenbrooke’s to continue treatment at local hospitals or at home, but there is no automatic support network. Which is where Adam’s parents come in.

They have set up the Adam Rogers Trust charity, in part to create a team of paediatric cancer carers – target £800,000 – to work with children and their families.

That care won’t stop when the children leave Addenbrooke’s. It will carry on back home and it will include all that advice which was so missing for the single mum Mr Rogers saw at Addenbrooke’s.

“But there is another part to the trust,” said Mrs Rogers. “One of our sons, Felix – he’s 13 – has Down’s Syndrome, so we decided the trust should also help adults with learning difficulties to live and work in the community.”

Adam, she said, would be all for it.

“We know Adam would agree with what we hope the trust will achieve,” she said. “He would want it to help others.”

The family – mum, dad, Felix, Fergus, 12, Mungo, nine, and three dogs, Ouzo, Marble and Reggie – live in Little Horkesley in a house full of exposed beams, wooden floors and big, open brick fireplaces. It is a warm, comfortable place to be, and the children are relaxed and curious. Mungo looks at me shyly and wonders if he is going to make the front page.

“When Adam was taken into hospital, it was tough on his brothers,” said Mrs Rogers. “It is tough on all siblings, because, for however many weeks or months, the family is split. The mother or father – and sometimes both – stays in hospital with the child who is ill. It is very hard for everyone and very traumatic for the child in hospital.”

Adam was taken ill in February, 2006. It was a Friday. He had been playing football at school and that night he collapsed.

“The next morning he was OK again, but his co-ordination was really bad,” said Mr Rogers. “We took him to our GP who sent us to Colchester General Hospital for a brain scan. We were told it was a brain tumour. Adam was admitted to Addenbrooke’s the same day.”

By Sunday night Adam could not speak and was paralysed.

“He was deteriorating very quickly. He had no sense of what was going on at that stage because everything was happening so fast. The hospital did not think he would survive more than a day or two.”

Adam responded to the steroids and got through the first week. Then came the radiotherapy, which shrank the tumour and released the paralysis. Seven weeks later he was home. But his time was limited. By June his condition was deteriorating. He died in July, 2006.

“We wanted to give Adam as much as we could in the short time he had left,” said Mrs Rogers, “and we are grateful he was able to die at home where he grew up thanks to the specialist nurse assigned to him.”

The nurse liaised with community health teams at the then Essex Rivers Healthcare Trust and organised all his medical care. But she did much more. She helped arrange travel insurance so Adam could visit America, and even talked about his illness to his schoolfriends.

“This is the kind of care we want for all children suffering from cancer, not just for those whose condition is terminal,” said Mrs Rogers.

It was difficult for them to talk about Adam in such a matter-of-fact way, but they understood it was essential if they were to get across the message that, for the trust to succeed, people have to donate money.

“Adam knew he had cancer. He did not need to be told,” revealed Mr Rogers. “In fact, it was Adam who told one of the doctors of his condition.”

Mrs Rogers nodded.

“Adam was amazing,” she said. “He was extremely courageous.”

As I left, I looked again at the photographs. There is one of Adam alongside his cricket hero, Kevin Pietersen, now the England captain.

Pieterson was one of the people Adam had wanted to meet before he died. Even though that wasn’t far away, Adam is still smiling, still confident.

WHAT THE CARE TEAM WILL DO

When the Adam Rogers Trust Care Team begins work in January, 2009, it will be the first of its kind in the UK and is being heralded as a “groundbreaking” step forward in paediatric cancer care.

The team will be based at Addenbrooke’s Hospital.

It will consist of:

• a psychologist
• a play occupational therapist
• a paediatric palliative care consultant, the first such consultant in the UK
• a specialist nurse
• a specialist physiotherapist.

The team’s remit includes:

• Liaison – with family and all those involved with the child’s care (Addenbrooke’s, local district hospital, GP, school)
• Social support – ensuring patients and families have access to state help and community support organisations
• Therapy – including physiotherapy, occupational therapy and language therapy
• Psychological support – includes preparing children for surgery, support through treatment for the child and family
• Palliative care – to achieve the best quality of life for as long as possible
• End of life care – for child and family.

For more information about the Adam Rogers Trust, how to make a donation or fundraise visit the website (see links), e-mail info@adamrogerstrust.org or write to: the Adam Rogers Trust, PO Box 10129, Great Horkesley, Colchester, CO6 4WF.