Leukaemia: Life after near death

There should have been omens. Thunder, a plague of frogs, comets in the sky; it isn't every day a little boy is picked out to combat death with weapons that present threats of their own. But this day starts much like any other in our family's calendar. By noon, it stands out only because baby Dominic is sampling fruity rice for the first time - fed to him by Jack, aged five. Jack is laughing because Dominic prefers the spoon to mashed pear, but Jack has been listless all weekend and we are waiting to see if our GP can cure his sore throat. There should have been dark clouds, ripped by lightning. But it is sunny as we walk to the surgery, with me promising: "The doctor will soon sort you out."

The locum's prescription is in my hand when, as an afterthought, I ask, "Do you know what these are?", lifting Jack's top to reveal a scattering of tiny red marks under his arm. "It looks as he's been poked hard with a sharp pencil." She frowns, and takes a long look at the pinpricks and his other bruises - the ones we viewed as badges of boyness. "Probably nothing but we should get it checked. Can you take him to the children's hospital? I'll give you a note."

Owls should have trailed us, hooting in daylight. But Jack is fascinated by the medics and their strange contraptions. Blood tests. Reflex tests. Eye tests. Stethoscopes. A thermometer that goes in his ear.

Tony arrives and we move to a side ward. I think I know what is coming: a lecture on nutrition and anaemia, and the need to give children plenty of green vegetables, which Jack says are poison. Then a man enters. My brain chugs over an unfamiliar word on his name badge. Oncology? It takes a second to retrieve the meaning but the man is translating it anyway, delivering the message 500 UK families hear each year. "I'm very sorry but Jack has cancer of the blood - a type of leukaemia." There's more - explaining the telltale symptoms of bruises, tiredness, red marks, repeat infection - but Tony and I are sharing the same thoughts. Jack has cancer. Cancer kills.

We are given two hours to go home, pack a bag, cancel the milk and our lives, before returning to the hospital for treatment to begin. Then, whoosh. We're off - taking a terror ride on a medical roller-coaster that will never bring any of us back to where we before.

The next day, we get the results that show not only with what we are dealing but also the brain's ability to adapt. Yesterday, we crumpled because our beautiful, beloved son had leukaemia. Today, we are strangely cheered to discover his is the "best'" sort - the acute lymphoblastic (ALL) sort; the sort with the best rates of survival.

The lightness lasts as long as it takes the specialist to explain what lies ahead. During treatment, Jack will lose his hair, throw up, suffer heartburn, change his appetite, balloon in size, experience mood swings, and be at risk of potentially fatal infections, permanent heart or liver damage and an ulcerated mouth. Without treatment, he will be dead.

It is not a quick fix. The treatment for ALL is longer than for any other childhood cancer. For three years, Jack will need handfuls of foul-tasting tablets each day. A week of steroids each month will transform him into a hell-child. We will lose count of the nights spent in hospital, the needle stabs, thumb-pricks, transfusions and lumbar punctures. Occasionally, he will need extra, high-dose chemo blasts. Sometimes, the drugs and illness will wipe out all his defences against infection.

Tony and I are white-faced and sobbing. We know we will never cope. But not coping is not an option, neither for us nor for the families of the 30 under-15s who will receive a diagnosis of cancer this week, next week, every week.

Then one day it stops. After taking more than 4,000 tablets, swallowing several gallons of liquids, submitting to more than 200 injections, lumbar punctures and thumb-pricks, Jack is off treatment, if not totally off-the-hook. Relapses happen but if we achieve five "event-free" years, Jack's risk of leukaemia will be the same as any other child: one in many thousands.

Life gets back to being thrillingly boring more quickly than we expect. Jack was born with a sharp mind and a sense of humour; both help him to understand what he has been through and, for the most part, to shrug it off. Despite his hit-and-miss attendance at school, his performance is above-average in his Year 6 Sats, and even better in his drama club play; he takes up karate, gets back into swimming, fights with his brother, makes us cross. In fact, in a book, this would be the point where it reads: "And they all lived happily ever after." But, in Storyland, children don't get life-threatening illness; the big, bad wolf of childhood cancer isn't huffing, puffing and blowing away hopes and lives.

For a while, we didn't even contemplate another chapter. True, at 11, Jack still found tying shoelaces a challenge; he'd wear a coat on the hottest of days; asking him to carry food dishes guaranteed a spillage; he struggled with memory and organisation, and he had an awesome talent for impaling or injuring himself on household objects. But boys are like that, we said, or sympathised over the life-skills lessons Jack had missed. It was a Swedish ALL parent who raised another possibility. "The brain fog from chemo - it is so sad?" We web-searched the world for more details and found other ALL parents with the same "brain-fog" worries: lack of focus; forgetfulness; poor co-ordination; sluggish information processing.

For families who encountered leukaemia in the 1960s, such souvenirs would be blessings. Then, fewer than one in 10 children survived. Today, the cure rate for childhood ALL is more than 80 per cent, and rising.

But improved survival also means that many more children are discovering what life holds after they stop dying. Elsewhere, measures are made against baseline assessments and individual education plans offered as routine. Yet in Britain, the issue is barely on the agenda. Many leukaemia doctors, research teams and charities concede there is growing evidence that the treatment and/or the experience may have long-term consequences, or mask a pre-existing problem. They also admit assessment and follow-up support are almost non-existent.

From CLIC Sargent, one of the leading childhood cancer charities, the view is: "Only five of the 21 specialist regional centres feel that they have anything approaching an adequate psychology service for their child patients and the education system has a serious shortfall in educational psychology support."

With Jack, now 13, we gave up asking our regional centre for a neuropsych evaluation. "It could take six months," they warned, almost 18 months ago. Nonetheless, his new challenges now have a name. After a miserable move to senior school, with its higher expectations of self-organisation, Jack was seen by an independent occupational therapist. She concluded he has sensory integration dysfunction, a form of dyspraxia, which may or may not be a legacy of the chemotherapy. His school is being supportive: we've worked out exercises and strategies to help.

Now, we're joining others in lobbying for educational assessments to be made of all ALL children, as soon as practical after diagnosis, to make it easier to work out how they can get back on the track they left when the chemo roller-coaster enforced a detour. The same is probably needed for children with other long-term illnesses. Meanwhile, it will be 10 more months before Jack achieves the magic five "event free" years off treatment but his health and spirits are good. If there were omens, we'd be looking for four-leafed clovers and rainbows.

Leukaemia - the facts

* 1,200 children are diagnosed with cancer in the UK every year.

* Around 40 per cent of children with cancer have leukaemia.

* The commonest type is acute lymphoblastic leukaemia (ALL) which affects 450 children a year, 85 per cent of all those with leukaemia.

* Eight out of ten children with ALL now survive their disease

* In the 1960s just three out of ten survived.

* As more children are cured of cancer, the longer-term adverse effects of treatment are likely to become apparent, according to the UK Children's Cancer Study Group.

The National Alliance of Childhood Cancer Parent Organisations is keen to hear from the families of other children who have finished treatment for ALL or a different cancer, and who have worries about late effects. Visit www.naccpo.org.uk.