Ben's brave fight for a normal life

SCHOOL finished an hour ago and Ben Todd is phoning round his friends to see which of them wants to come round and play on his new Xbox. His big brother flies through the front door, asks his mum where his football kit is for his training, and goes into the kitchen to make himself a snack.

The atmosphere is happy and lively; a typical scene in households up and down the country. But things haven't always been so carefree for this Penicuik family. Ben, diagnosed with leukaemia at the age of five, has beaten the disease not once but three times. He has endured dozens of intensive chemotherapy and radiotherapy sessions and just over a year ago, he was given a life-saving bone marrow transplant.

"Ben has struggled with the leukaemia and the side effects of the treatment for half of his life," says mum Dawn, 39. "But he has hardly ever complained. He's done brilliantly."

Ben was half way through primary one at Cornbank Primary when he started feeling unwell. He felt tired and started being sick. At first his mum put it down to a bug, but it lasted for weeks and on Easter Sunday 2002, she took her youngest son up to the Sick Kids.

Dawn recalls: "I thought it was just something all kids get, but it didn't go away and I started thinking, this just isn't right.

"At first the doctors thought it was a burst appendix. Then a scan showed what they initially thought was a cancerous tumour near his appendix." In fact it was a mass of leukaemia cells in his stomach, and Ben was diagnosed with acute lymphoblastic leukaemia.

Dawn says: "You don't expect this kind of thing and I'm not sure if it hit me until I got taken up to the ward where Ben was going to have his chemo. Then I saw all these kids with no hair and drips and realised just what was happening. It was devastating."

But before the chemotherapy sessions started, things took a turn for the worse when Ben had a fit at the hospital. "Sometimes I forget this part, probably because I just want to block it out," sighs Dawn. "But his face was all twisted and he was out cold. They thought it happened because his body was weakened by the cancer. He was taken into intensive care and on a ventilator for four days."

After Ben had recovered from his fit he underwent intense chemotherapy sessions for three months, before starting a 'maintenance' chemotherapy programme. The family were delighted when doctors told them he was in remission, and Ben went back to school. He had to start primary one again but in many ways a fresh start was exactly what he, and his family, needed.

But in November 2004, Ben started feeling unwell again. Dawn recalls: "He started being sick. He didn't even tell me about it at first, because he didn't want to worry me. But I knew something was wrong and so we went up to the Sick Kids again."

Nothing could have prepared Dawn for the news she was about to hear. The leukaemia had come back, and Ben was told that he would need to undergo more chemotherapy sessions, plus radiotherapy. "The news was shattering," remembers Dawn.

Dawn was given leave from her job at Standard Life, allowing her to travel to hospital appointments with Ben, and look after her two other sons, Jack, now 14, and 17-year-old Sam.

After further treatment Ben went into remission again.

"I didn't think it would come back again after the second time because the doctors seemed so positive," said Dawn.

Two years after Ben was given the all clear, the family were enjoying a holiday in Majorca. Dawn recalls: "Ben got sick towards the end of our time there."

The Todds returned to Edinburgh and were told the harrowing news: the leukaemia was back. Ben had more radiotherapy but by now needed a bone marrow transplant. "It was devastating," says Dawn. "It had been such a hard fight for four years, and it seemed nothing had worked. We were back to square one."

None of the family were suitable donors and an agonising wait began. But in the autumn of 2006, the Anthony Nolan Trust called with the news they had been longing for. A suitable donor had been found and Ben's transplant was carried out at Yorkhill Hospital in Glasgow.

Dawn says the transplant has turned their lives around. "It's made an incredible difference," she smiles. "Ben still takes pills every day and visits the bone marrow clinic every month for check up tests, but his life is so much easier now.

"For months we weren't sure it was going to happen. Do donors realise what they do and how much they help people like Ben? I hope they do."

She doesn't know who the donor is – rules on bone marrow donations means it can be up to two years before donor and recipient can find out each other's identities – but says she hopes to meet them one day. "We've had all the treatment and the worries, and the bone marrow transplant.

"But it still feels like there's part of the jigsaw missing. It would feel complete if I could meet this amazing person. I don't know what I'd say, but I know it would be very emotional, meeting the person who saved my son's life."

A year on, Ben is enjoying the kind of life other ten-year-olds do. "We've had everything: no hair, no weight, feeding tubes, the transplant," Dawn says. "It's been hard for Jack and Sam too, when they were younger I don't think they really understood. They used to try to play around with Ben and I'd get worried. Now they can all get on and they look out for him."

Ben has taken up his beloved football again, and wants to be a footballer when he grows up. His hero is ex–Hibs player Scott Brown and he's been a mascot twice at Easter Road.

"Ben's a brilliant wee player," Dawn grins. "When I've seen him playing recently there's been a flicker of how he was and I think he'll be getting there again soon, scoring loads of goals.

"We'll never know of course if the cancer will come back but now that a year has passed we have every reason to feel hopeful for the future. To have beaten cancer three times at Ben's age shows that he is an exceptional person. In fact he is our hero."


A VITAL SOURCE OF DONORS

FORMED in 1974 as a pioneering register of volunteers, the Anthony Nolan Trust provides a list of potential life-saving donors for patients in need of a bone marrow transplant. To date it has helped give more than 5800 children and adults a new chance of life.

The trust seeks to find a "match" for patients – a donor whose tissue type is compatible. Now holding one of the largest databases of unrelated donors in the world, it still requires more people to join, and especially young men.

The importance is not so much pinned on quantity but on diversity: theoretically, anyone could be a match for one of the 7000 patients waiting for a transplant.

The trust was founded by Shirley Nolan, whose seven-year-old son Anthony died of the extremely rare Wiskott Aldrich Syndrome, for which the only known cure was a bone marrow transplant from a compatible donor.

At that time there was no such thing as a bone marrow register, and Shirley, who died in 2002, created the first.

Allan Johnson, regional fundraising manager at the Anthony Nolan Trust says: "I am absolutely delighted Ben Todd is doing so well. It is amazing that a complete stranger has given him a new chance of life."